Long-Term Follow-Up Guidelines
for Survivors of Childhood, Adolescent,and Young Adult Cancers
Version 2.0 – March 2006

Appendix II
Patient Education
Materials“Health Links”

Copyright 2006 © Children’s Oncology GroupAll rights reserved worldwide

Index to Patient Education Materials (“Health Links”)
Health Link Abbreviated Title

Associated Guideline
Section(s)Health Link - Full Title

Amputation

Late Effects after Amputation for Childhood Cancer

107

Bladder Health

Bladder Health After Childhood Cancer

11, 12, 80, 81, 82

Bleomycin Alert

Bleomycin Alert

29

Bone Health

Keeping Your Bones Healthy after Childhood Cancer

22, 31, 97

Breast Cancer

Breast Cancer following Treatment for Childhood
Cancer: Are You at Risk?

68, 137

Cataracts

Cataracts after Treatment for Childhood Cancer

10, 33, 56

Central Adrenal
Insufficiency

Endocrine Problems after Childhood Cancer:
Central Adrenal Insufficiency

55

Chronic Pain

Chronic Pain after Childhood Cancer

1

Colorectal Cancer

Colorectal Cancer Following Treatment for Childhood
Cancer: Are You at Risk?

78, 139

Cystectomy

Cystectomy and Childhood Cancer

109

Dental Health

Dental Health Following Childhood Cancer Treatment

6, 59, 60, 100, 142

Diet and Physical
Activity

Staying Healthy through Diet and Physical Activity

17, 48, 49, 71

Educational Issues

Educational Issues Following Treatment for Childhood
Cancer

1, 14, 18, 25, 43, 58, 115

Emotional Issues

Emotional Issues after Childhood Cancer

1

Eye Health

Keeping Your Eyes Healthy after Treatment forChildhood Cancer

57, 99, 110

Female Health
IssuesFemale Health Issues after Treatment for Childhood
Cancer7, 54, 83, 84, 111, 123, 124

Finding Healthcare

Finding and Paying for Healthcare after Treatment forChildhood Cancer

2

GI Health

Gastrointestinal Health after Childhood Cancer

73, 75, 76, 77, 95, 104, 112

Growth Hormone
Deficiency

Endocrine Problems after Childhood Cancer:
Growth Hormone Deficiency

50

Hearing Loss

Hearing Loss after Treatment for Childhood Cancer

14, 58Heart Health

Keeping Your Heart Healthy after Treatment forChildhood Cancer

28, 71

Hepatitis

Hepatitis after Childhood Cancer

3, 4Hyperprolactinemia

Endocrine Problems after Childhood Cancer:
Hyperprolactinemia

52

Hypopituitarism

Endocrine Problems after Childhood Cancer:
Hypopituitarism

50, 53, 54, 55

Introduction to LongTerm Follow-Up

Introduction to Long-Term Follow-Up after Treatment forChildhood, Adolescent, or Young Adult Cancer

1

Kidney Health

Kidney Health after Childhood Cancer

13, 16, 23, 79, 109, 114

Limb Sparing
Procedures

Limb Sparing Procedures after Bone Cancer

113

Liver Health

Liver Health after Childhood Cancer

21, 24, 74, 95

Index
Page 1Health Link Abbreviated Title

Associated Guideline
Section(s)Health Link - Full Title

Male Health Issues

Male Health Issues after Treatment for Childhood
Cancer7, 54, 86, 87, 121, 125, 128

Neurogenic Bladder

Neurogenic Bladder Following Treatment for Childhood
Cancer

119

Osteonecrosis

Osteonecrosis

32, 96

Osteoradionecrosis

Osteoradionecrosis after Childhood Cancer

61

Peripheral
Neuropathy

Peripheral Neuropathy

15, 35Precocious Puberty

Endocrine Problems after Childhood Cancer:
Precocious Puberty

51

Pulmonary HealthPulmonary Health9, 29, 70, 101, 130

Raynaud’s
Phenomenon

Raynaud’s Phenomenon

36

Reducing Risk ofCancers

Reducing the Risk of Second Cancers

8, 27, 37, 38, 39, 92, 93, 138,
140, 141, 142, 143, 144

Scoliosis andKyphosis

Scoliosis and Kyphosis after Treatment for Childhood
Cancer

89, 90Single Kidney Health

Keeping Your Single Kidney Healthy

13*, 16*, 23*, 79*, 114(*mononephric patients only)

Skin HealthSkin Health after Childhood Cancer

39, 40, 98, 144

Splenic Precautions

Precautions for People Without a Functioning Spleen

72, 103, 131

Thyroid Problems

Thyroid Problems after Childhood Cancer

53, 62, 63, 64, 65, 132, 134,
135

Index
Page 2

Health Link

Healthy living after treatment for childhood cancer

Amputation
Version 2.0 - 3/06

Late Effects after Amputation for Childhood Cancer
Treatment for a childhood bone or soft tissue tumor of the arms or legs may include an
amputation as part of the treatment. Sometimes an amputation is needed because ofcomplications, such as an infection. This Health Link will focus on the possible lateeffects from amputation due to childhood cancer.
What are the potential late effects of amputation?
Skin blisters, redness, or bruising from a poorly fitting prosthesis Phantom limb pain (perception of pain coming from the area where the limb used
to be)
 Shooting pains, severe cramping, or a burning sensation in the amputated limb
 Skin breakdown and slow wound healing of the remaining limb
 Back or other muscle pain (due to increased use of other muscle groups andlimbs to make up for decreased function in the amputated extremity)
 Emotional distress related to change in body image
 Increased energy or effort to do daily activities
 Increased weight gain (due to decreased physical activity)
 Development of diabetes (because of weight gain, lack of physical activity andpoor food choices)
What are the follow-up recommendations for amputees?


Keep the residual limb clean and dry
Check the skin daily for color changes and skin break down
 Wash items that are used in the prosthesis (stump shrinker, elastic garments,
stump socks) regularly
 Have an evaluation of the prosthesis fit every 6 months until you are fully grown,then once a year, and any time problems arise Work with a physical and occupational therapist to develop a plan for gait
training, activities of daily living, and an exercise plan (including range of motion,
strength, agility, and balance)
 Have a yearly physical examination
 Maintain a healthy diet and activity levelWhat are the signs that your prosthesis needs the attention of a prosthetist?
You hear noises of any kind (squeaking, popping, clicking, etc.)
You break any part of the prosthesis
 You need new supplies
Copyright 2006 © Children’s Oncology GroupAll rights reserved worldwide

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Health Link

Healthy living after treatment for childhood cancer

Amputation
Version 2.0 - 3/06



You have outgrown the prosthesis
 You have chronic pain while wearing your prosthesis
What other issues occur after amputation?


Dealing with peer pressure and body image change Coping with "being different" Feeling anxious, unsure, or sad Paying for a new prosthesis
 Coping with environments that may or may not be accessible.
 Using public transportation (airplane, train, bus, etc.)
 In some cases, living with chronic pain (see related Health Link: Chronic Pain afterChildhood Cancer)
Where can I get help?
Talk with your healthcare provider regularly to let them know of any difficulties that you
may be facing. In addition, the following web sites offer resources for amputees:

www.amputee-coalition.org/first_step/firststepv2_toc.html
Provides information about "First Step, A Guide for Adjusting to Limb Loss"published by the Amputee Coalition of America.
 www.amputee-coalition.org
Provides further resources for education, advocacy and peer support for
amputees. The first step program above is part of the ACA.

Written by Tori Marchese, PhD, PT, Department of Epidemiology and Cancer Control, St.
Jude Children's Research Hospital, Memphis, TN, Rajaram Nagarajan, MD, MPH,
Pediatric Hematology/Oncology/BMT, University of Minnesota Cancer Center,
Minneapolis, MN, and Tom Baker, CP (certified prosthetist), CFI, Memphis, TN.
Reviewed by: Revonda Mosher RN, MSN, CPNP, CPON®, Melissa M. Hudson MD, andJoan Darling PhD.
Reference: Lusardi MM, Nielsen CC, Orthotics and Prosthetics in Rehabilitation,
Butterworth-Heinemann, Boston, 2000.

Copyright 2006 © Children’s Oncology GroupAll rights reserved worldwide

Page 2 of 3

Health Link

Healthy living after treatment for childhood cancer

Amputation
Version 2.0 - 3/06

Additional health information for childhood cancer survivors is available atwww.survivorshipguidelines.org
Note: Throughout this Health Links series, the term "childhood cancer" is used to designate pediatric cancers that may
occur during childhood, adolescence, or young adulthood. Health Links are designed to provide health information
for survivors of pediatric cancer, regardless of whether the cancer occurred during childhood, adolescence, or young
adulthood.
Disclaimer and Notice of Proprietary Rights
Introduction to Late Effects Guidelines and Health Links: The "Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers" and accompanying"Health Links" were developed by the Children’s Oncology Group as a collaborative effort of the Late Effects Committee and Nursing Discipline.
For Informational Purposes Only: The information and contents of each document or series of documents made available from by the Children’s Oncology Group relating to lateeffects of cancer treatment and care or containing the title "Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers" or the title "HealthLink", whether available in print or electronic format (including any digital format, e-mail transmission, or download from the website), shall be known hereinafter as "Informational
Content". All Informational Content is for informational purposes only. The Informational Content is not intended to substitute for medical advice, medical care, diagnosis or treatment obtained from a physician or health care provider.
To cancer patients (if children, their parents or legal guardians): Please seek the advice of a physician or other qualified health provider with any questions you may haveregarding a medical condition and do not rely on the Informational Content. The Children’s Oncology Group is a research organization and does not provide individualized
medical care or treatment.
To physicians and other healthcare providers: The Informational Content is not intended to replace your independent clinical judgment, medical advice, or to exclude
other legitimate criteria for screening, health counseling, or intervention for specific complications of childhood cancer treatment. Neither is the Informational Content intended
to exclude other reasonable alternative follow-up procedures. The Informational Content is provided as a courtesy, but not intended as a sole source of guidance inthe evaluation of childhood cancer survivors. The Children’s Oncology Group recognizes that specific patient care decisions are the prerogative of the patient, family, andhealthcare provider.
No endorsement of any specific tests, products, or procedures is made by Informational Content, the Children’s Oncology Group, or affiliated party or member of the Children’s
Oncology Group.
No Claim to Accuracy or Completeness: While the Children's Oncology Group has made every attempt to assure that the Informational Content is accurate and complete as of thedate of publication, no warranty or representation, express or implied, is made as to the accuracy, reliability, completeness, relevance, or timeliness of such Informational Content.
No Liability on Part of Children’s Oncology Group and Related Parties/ Agreement to Indemnify and Hold Harmless the Children’s Oncology Group and Related Parties:
No liability is assumed by the Children's Oncology Group or any affiliated party or member thereof for damage resulting from the use, review, or access of the Informational Content.
You agree to the following terms of indemnification: (i) "Indemnified Parties" include authors and contributors to the Informational Content, all officers, directors, representatives,
employees, agents, and members of the Children’s Oncology Group and affiliated organizations; (ii) by using, reviewing, or accessing the Informational Content, you agree, at yourown expense, to indemnify, defend and hold harmless Indemnified Parties from any and all losses, liabilities, or damages (including attorneys' fees and costs) resulting from any andall claims, causes of action, suits, proceedings, or demands related to or arising out of use, review or access of the Informational Content.
Proprietary Rights: The Informational Content is subject to protection under the copyright law and other intellectual property law in the United States and worldwide. The Children's
Oncology Group retains excursive copyright and other right, title, and interest to the Informational Content and claims all intellectual property rights available under law. You hereby agree to help the Children’s Oncology Group secure all copyright and intellectual property rights for the benefit of the Children’s Oncology Group by taking additional action
at a later time, action which could include signing consents and legal documents and limiting dissemination or reproduction of Informational Content.

Copyright 2006 © Children’s Oncology GroupAll rights reserved worldwide

Page 3 of 3

Health Link

Healthy living after treatment for childhood cancer

Bladder Health
Version 2.0 - 3/06

Bladder Health after Childhood Cancer
Certain types of cancer and certain cancer treatments can cause damage to the urinary
bladder. The information in this Health Link will help you to recognize signs and symptoms of urinary bladder problems that may occur after treatment with chemotherapy orradiation for childhood cancer.
What is the urinary bladder?
The urinary bladder is a hollow organthat stores urine. It is located behindthe pubic bone. The kidneys filter the
blood and make urine, which enters the
bladder through two tubes called"ureters". Urine leaves the bladderthrough another tube, the urethra. In
women, the urethra is a short tube that
opens just in front of the vagina. Inmen, it is longer, and passes throughthe prostate gland and then the penis.
What are the risk factors for bladder problems?


Chemotherapy with cyclophosphamide and/or ifosfamide
 Radiation therapy to the pelvic area
What types of bladder problems can occur?


Bleeding into the bladder (hemorrhagic cystitis)
 Scarring (fibrosis) of the bladder Bladder cancer
What is hemorrhagic cystitis?
Hemorrhagic cystitis is a condition in which bladder irritation results in blood in theurine.
What are the symptoms of hemorrhagic cystitis?
The urine color may range from slightly pink to bright red. Some people may feel likethey have to urinate urgently, or that they cannot release all the urine, but there is

Copyright 2006 © Children’s Oncology GroupAll rights reserved worldwide

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Health Link

Healthy living after treatment for childhood cancer

Bladder Health
Version 2.0 - 3/06

usually no pain. Hemorrhagic cystitis may occur off and on for months to years after
completion of therapy.
How is hemorrhagic cystitis diagnosed?
Usually, blood can be seen in the urine. Sometimes, the amount of blood in the urine
is so small that it is seen only during a urinalysis (lab test to examine the urine). When
there is blood in the urine, a urine culture is usually done to check for infection.
What can I do if I have hemorrhagic cystitis?
Usually it is helpful to drink extra fluids to flush out the bladder. Avoid tea, coffee, cola
beverages, and other fluids containing caffeine since they may worsen the sudden
urge to urinate. If you have kidney or heart problems, check with your healthcare
provider before drinking extra fluid.
When should I call my healthcare provider?
Call your healthcare provider any time you see blood in the urine. You should also
report any fever, pain with urination, difficulty urinating, or the need to urinate
urgently or frequently, because these are common symptoms of a urinary tract
infection or other bladder problems.
What is bladder fibrosis?
Bladder fibrosis is scar tissue in the bladder. This may build up and cause thebladder wall to thicken. When this happens, the pressure inside the bladder increases.
This may affect the bladder’s ability to store and empty urine. Over time these changes
can lead to damage to the kidneys.
What are the symptoms of bladder fibrosis?
Problems may include difficulty emptying the bladder, leakage of urine, or blood in
the urine. Sometimes, bladder fibrosis may not cause any symptoms at all.
How is bladder fibrosis diagnosed?
An ultrasound of the bladder may show thickening of the bladder wall. A urologist
may also perform a cystoscopy, a test that allows the doctor to look directly in the
bladder through a thin, lighted tube.

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Health Link

Healthy living after treatment for childhood cancer

Bladder Health
Version 2.0 - 3/06

What can I do if I think I have bladder fibrosis?
If you are at risk for bladder fibrosis and have any of the symptoms described above,
you should see a urologist.
When should I call my healthcare provider?
Call your healthcare provider anytime you have symptoms of bladder fibrosis, such asdifficulty emptying the bladder, leakage of urine, or blood in the urine.
What other bladder problems can occur after childhood cancer?
Bladder cancer is a type of tumor that can develop in people who have been treatedwith cyclophosphamide or radiation involving the bladder. This is a rare type of
secondary cancer due to treatment.
What are the symptoms of bladder cancer?
The most common symptom is blood in the urine. There may also be a need tourinate urgently or frequently. If the cancer is advanced at the time of diagnosis, pain
over the bladder, in the genital area, or in the bones may be present.
How is bladder cancer diagnosed?
The diagnosis is usually made by doing a cystoscopy to obtain a biopsy of bladder tissue. Sometimes the diagnosis can be made by finding cancer cells in the urine.
What can I do if I think I have bladder cancer?
If you are concerned about whether your symptoms may represent bladder cancer, ask
for a referral to a urologist.

Written by Patricia Shearer MD, MS, Pediatric Hematology/Oncology, Ochsner Clinic,
New Orleans, Louisiana; Michael Ritchey, MD, Pediatric Urology Associates, Phoenix,
Arizona; Fernando A. Ferrer, MD, Department of Surgery, Connecticut Children’s
Medical Center, Hartford, Connecticut; and Sheri L. Spunt, MD, Hematology/Oncology,
St. Jude Children’s Research Hospital, Memphis, Tennessee.
Reviewed by: Jill Meredith RN, BSN, OCN®, Melissa M. Hudson MD, and Joan Darling
PhD.
Illustrated by Devika Bhatia.
Copyright 2006 © Children’s Oncology GroupAll rights reserved worldwide

Page 3 of 4

Health Link

Healthy living after treatment for childhood cancer

Bladder Health
Version 2.0 - 3/06

Additional health information for childhood cancer survivors is available atwww.survivorshipguidelines.org
Note: Throughout this Health Links series, the term "childhood cancer" is used to designate pediatric cancers that may
occur during childhood, adolescence, or young adulthood. Health Links are designed to provide health information
for survivors of pediatric cancer, regardless of whether the cancer occurred during childhood, adolescence, or young
adulthood.
Disclaimer and Notice of Proprietary Rights
Introduction to Late Effects Guidelines and Health Links: The "Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers" and accompanying"Health Links" were developed by the Children’s Oncology Group as a collaborative effort of the Late Effects Committee and Nursing Discipline.
For Informational Purposes Only: The information and contents of each document or series of documents made available from by the Children’s Oncology Group relating to lateeffects of cancer treatment and care or containing the title "Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers" or the title "HealthLink", whether available in print or electronic format (including any digital format, e-mail transmission, or download from the website), shall be known hereinafter as "Informational
Content". All Informational Content is for informational purposes only. The Informational Content is not intended to substitute for medical advice, medical care, diagnosis or treatment obtained from a physician or health care provider.
To cancer patients (if children, their parents or legal guardians): Please seek the advice of a physician or other qualified health provider with any questions you may haveregarding a medical condition and do not rely on the Informational Content. The Children’s Oncology Group is a research organization and does not provide individualized
medical care or treatment.
To physicians and other healthcare providers: The Informational Content is not intended to replace your independent clinical judgment, medical advice, or to exclude
other legitimate criteria for screening, health counseling, or intervention for specific complications of childhood cancer treatment. Neither is the Informational Content intended
to exclude other reasonable alternative follow-up procedures. The Informational Content is provided as a courtesy, but not intended as a sole source of guidance inthe evaluation of childhood cancer survivors. The Children’s Oncology Group recognizes that specific patient care decisions are the prerogative of the patient, family, andhealthcare provider.
No endorsement of any specific tests, products, or procedures is made by Informational Content, the Children’s Oncology Group, or affiliated party or member of the Children’s
Oncology Group.
No Claim to Accuracy or Completeness: While the Children's Oncology Group has made every attempt to assure that the Informational Content is accurate and complete as of thedate of publication, no warranty or representation, express or implied, is made as to the accuracy, reliability, completeness, relevance, or timeliness of such Informational Content.
No Liability on Part of Children’s Oncology Group and Related Parties/ Agreement to Indemnify and Hold Harmless the Children’s Oncology Group and Related Parties:
No liability is assumed by the Children's Oncology Group or any affiliated party or member thereof for damage resulting from the use, review, or access of the Informational Content.
You agree to the following terms of indemnification: (i) "Indemnified Parties" include authors and contributors to the Informational Content, all officers, directors, representatives,
employees, agents, and members of the Children’s Oncology Group and affiliated organizations; (ii) by using, reviewing, or accessing the Informational Content, you agree, at yourown expense, to indemnify, defend and hold harmless Indemnified Parties from any and all losses, liabilities, or damages (including attorneys' fees and costs) resulting from any andall claims, causes of action, suits, proceedings, or demands related to or arising out of use, review or access of the Informational Content.
Proprietary Rights: The Informational Content is subject to protection under the copyright law and other intellectual property law in the United States and worldwide. The Children's
Oncology Group retains excursive copyright and other right, title, and interest to the Informational Content and claims all intellectual property rights available under law. You hereby agree to help the Children’s Oncology Group secure all copyright and intellectual property rights for the benefit of the Children’s Oncology Group by taking additional action
at a later time, action which could include signing consents and legal documents and limiting dissemination or reproduction of Informational Content.

Copyright 2006 © Children’s Oncology GroupAll rights reserved worldwide

Page 4 of 4

Health Link

Healthy living after treatment for childhood cancer

Bleomycin Alert
Version 2.0 - 3/06

Bleomycin Alert
The lungs are very important organs that are responsible for supplying oxygen to
the body and ridding it of carbon dioxide. Sometimes, treatments given for childhood
cancer can cause lung damage. Because you received bleomycin during treatment forchildhood cancer, it is important for you to learn about certain lung problems that cansometimes happen after treatment with bleomycin. We also suggest that you read the"Pulmonary Health" Health Link, which contains more information about your lungs andhow to keep them healthy.
What are the problems that can happen after treatment with bleomycin?
People who received bleomycin during treatment for childhood cancer can sometimes
develop lung problems many years after their treatment has been completed. These
problems may include: Lung inflammation (interstitial pneumonitis) Lung scarring (pulmonary fibrosis)
 Breathing problems associated with high levels of oxygen and/or intravenous
fluids (acute respiratory distress syndrome)
What is interstitial pneumonitis?
Interstitial pneumonitis is inflammation of the thin layer of tissue between the air sacs
(alveoli) in the lungs. This inflammation can worsen if a person develops lung infections,such as pneumonia. Interstitial pneumonitis that occurs as a result of therapy withbleomycin sometimes develops after exposure to toxic fumes, tobacco, or high levelsof oxygen given over several hours.
What is pulmonary fibrosis?
Pulmonary fibrosis is the formation of scar tissue in the small air sacs (alveoli) of
the lungs. This scarring makes the lungs stiffer and affects the exchange of oxygenand carbon dioxide in the alveoli. Pulmonary fibrosis may worsen over time and cansometimes lead to early heart failure.
What is acute respiratory distress syndrome (ARDS)?
ARDS is a serious condition that occurs when alveoli in the lungs are damaged and canno longer provide oxygen to the body. People who received bleomycin in the past
may be at risk for developing ARDS, usually as a result of a combination of high levelsof oxygen and large amounts of intravenous fluid given during surgery. However, the risk

Copyright 2006 © Children’s Oncology GroupAll rights reserved worldwide

Page 1 of 3

Health Link

Healthy living after treatment for childhood cancer

Bleomycin Alert
Version 2.0 - 3/06

of developing ARDS is very low. If you need a medical procedure requiring oxygen or
general anesthesia, be sure to tell your surgeon, anesthesiologist, and other healthcare
providers that you have received bleomycin in the past for treatment of childhood cancer.
What are factors that increase the risk of developing lung problems after
treatment with bleomycin?
High total doses of bleomycin (400 units/m2 or more in all doses combined) Radiation to the chest or lungs, or total body irradiation (TBI) Treatment with other chemotherapy drugs that can also damage the lungs(see related Health Link: "Pulmonary Health") Exposure to high oxygen levels (such as during general anesthesia or SCUBA
diving) SmokingWhat monitoring is recommended for people who have received bleomycin fortreatment of childhood cancer?
A yearly medical check-up is recommended.
 A chest x-ray and pulmonary function tests may show lung problems that are
not apparent during a check-up. For this reason, it is helpful to have these tests
done at least once (at least 2 years after completing cancer treatment) to find out
if there are any problems. Your healthcare provider can decide if further testing isneeded based on these results.
 In some cases, your healthcare provider may recommend repeating the chest
x-ray and pulmonary function tests if you are scheduled for surgery that
requires general anesthesia to check for changes in the lungs that could
increase the risk of breathing problems during or after anesthesia.


Are there any special precautions I should take?
If you received therapy with bleomycin, you should:
Avoid SCUBA diving. During SCUBA diving, increased underwater pressures andhigh oxygen levels can damage the lungs.
 Tell your surgeon, anesthesiologist, and other healthcare providers about your
medical history before any scheduled procedures that may require oxygen.
 Avoid breathing high concentrations of oxygen whenever possible, especially forlong periods of time (such as over several hours). If you require oxygen,monitoring of your oxygen levels can usually be done so that you can receive thelowest oxygen concentration that is necessary.


Copyright 2006 © Children’s Oncology GroupAll rights reserved worldwide

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Health Link

Healthy living after treatment for childhood cancer

Bleomycin Alert
Version 2.0 - 3/06

Get the pneumococcal (pneumonia) vaccine.
 Get yearly influenza (flu) vaccines.
 Don’t smoke. If you currently smoke, talk to your healthcare provider about aprogram to help you quit.
Written by Margery Schaffer, RN, MSN, CPNP, Department of Hematology/Oncology,
The Children’s Medical Center, Dayton, Ohio.
Reviewed by: Emmett J. Broxson, Jr. MD, Edward Walz MD, Karen Stormer, RN, CNS,
CPON®, Melissa M. Hudson MD, Debra Friedman MD, Neyssa Marina MD, and Smita
Bhatia MD, MPH.

Additional health information for childhood cancer survivors is available atwww.survivorshipguidelines.org
Note: Throughout this Health Links series, the term "childhood cancer" is used to designate pediatric cancers that may
occur during childhood, adolescence, or young adulthood. Health Links are designed to provide health information
for survivors of pediatric cancer, regardless of whether the cancer occurred during childhood, adolescence, or young
adulthood.
Disclaimer and Notice of Proprietary Rights
Introduction to Late Effects Guidelines and Health Links: The "Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers" and accompanying"Health Links" were developed by the Children’s Oncology Group as a collaborative effort of the Late Effects Committee and Nursing Discipline.
For Informational Purposes Only: The information and contents of each document or series of documents made available from by the Children’s Oncology Group relating to lateeffects of cancer treatment and care or containing the title "Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers" or the title "HealthLink", whether available in print or electronic format (including any digital format, e-mail transmission, or download from the website), shall be known hereinafter as "Informational
Content". All Informational Content is for informational purposes only. The Informational Content is not intended to substitute for medical advice, medical care, diagnosis or treatment obtained from a physician or health care provider.
To cancer patients (if children, their parents or legal guardians): Please seek the advice of a physician or other qualified health provider with any questions you may haveregarding a medical condition and do not rely on the Informational Content. The Children’s Oncology Group is a research organization and does not provide individualized
medical care or treatment.
To physicians and other healthcare providers: The Informational Content is not intended to replace your independent clinical judgment, medical advice, or to exclude
other legitimate criteria for screening, health counseling, or intervention for specific complications of childhood cancer treatment. Neither is the Informational Content intended
to exclude other reasonable alternative follow-up procedures. The Informational Content is provided as a courtesy, but not intended as a sole source of guidance inthe evaluation of childhood cancer survivors. The Children’s Oncology Group recognizes that specific patient care decisions are the prerogative of the patient, family, andhealthcare provider.
No endorsement of any specific tests, products, or procedures is made by Informational Content, the Children’s Oncology Group, or affiliated party or member of the Children’s
Oncology Group.
No Claim to Accuracy or Completeness: While the Children's Oncology Group has made every attempt to assure that the Informational Content is accurate and complete as of thedate of publication, no warranty or representation, express or implied, is made as to the accuracy, reliability, completeness, relevance, or timeliness of such Informational Content.
No Liability on Part of Children’s Oncology Group and Related Parties/ Agreement to Indemnify and Hold Harmless the Children’s Oncology Group and Related Parties:
No liability is assumed by the Children's Oncology Group or any affiliated party or member thereof for damage resulting from the use, review, or access of the Informational Content.
You agree to the following terms of indemnification: (i) "Indemnified Parties" include authors and contributors to the Informational Content, all officers, directors, representatives,
employees, agents, and members of the Children’s Oncology Group and affiliated organizations; (ii) by using, reviewing, or accessing the Informational Content, you agree, at yourown expense, to indemnify, defend and hold harmless Indemnified Parties from any and all losses, liabilities, or damages (including attorneys' fees and costs) resulting from any andall claims, causes of action, suits, proceedings, or demands related to or arising out of use, review or access of the Informational Content.
Proprietary Rights: The Informational Content is subject to protection under the copyright law and other intellectual property law in the United States and worldwide. The Children's
Oncology Group retains excursive copyright and other right, title, and interest to the Informational Content and claims all intellectual property rights available under law. You hereby agree to help the Children’s Oncology Group secure all copyright and intellectual property rights for the benefit of the Children’s Oncology Group by taking additional action
at a later time, action which could include signing consents and legal documents and limiting dissemination or reproduction of Informational Content.

Copyright 2006 © Children’s Oncology GroupAll rights reserved worldwide

Page 3 of 3

Health Link

Healthy living after treatment for childhood cancer

Bone Health
Version 2.0 - 3/06

Keeping Your Bones Healthy after Childhood Cancer
During childhood and into young adulthood, bone formation usually occurs faster thanbone loss, causing bones to grow and become heavier (more dense). As a person getsolder, the process of bone removal gradually overtakes bone formation, and bones
slowly lose strength as part of the normal aging process.
Osteoporosis: A Silent Disease
Osteoporosis (or osteopenia) is a disorder resulting from too little new bone formationor too much bone loss, causing bones to become weak. Most people do not havesymptoms, especially in the early stages. As bones become weaker, fractures may
occur after minimal trauma, such as a fall. Osteoporosis may occur in any bone, but
most commonly affects the wrists, hips and leg bones. The vertebrae of the spine often
collapse, leading to loss of height, spinal curvature, and chronic pain.
How is osteoporosis diagnosed?
Although osteoporosis may be suspected based on a patient’s symptoms and risk
factors, the diagnosis is made by measuring bone density with special x-ray techniquescalled DEXA or bone density scans. These scans do not expose patients to large
amounts of radiation, and generally take less than 20 minutes to perform.
People who have osteoporosis should discuss treatment options with their healthcare
provider. Medications, such as bisphosphonates and calcitonin, are available specificallyfor the treatment of low bone density. In addition, if you have low levels of male orfemale hormones, or low levels of growth hormone, you may also benefit from hormone
replacement therapy.
What are the risk factors for osteoporosis?
Osteoporosis is more common in people with the following characteristics:
Female (especially after menopause) Family history of osteoporosis
 Caucasian or Asian race Small, thin frame Older age


The following factors may also increase the risk of osteoporosis:
Smoking Diet low in calcium

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Healthy living after treatment for childhood cancer

Bone Health
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Lack of weight-bearing exercise
 Too much caffeine, alcohol, or soda
 A diet high in saltAdditional causes of osteoporosis in people who have had cancer may include:
A history of treatment with:Corticosteroids (such as prednisone and dexamethasone) Methotrexate
 Radiation to weight-bearing bones (legs, hips, spine)Conditions resulting from cancer treatment, including:
Low levels of female or male hormones Growth hormone deficiency
 High levels of thyroid hormone
 Chronic graft-versus-host disease requiring prolonged therapy withcorticosteroids
 Prolonged periods of inactivity (bed rest)

Other medical treatments, including:
Certain anticonvulsants (phenytoin and barbiturates)
Aluminum-containing antacids (such as Maalox® or Amphogel®) Medications such as Lupron (used for treatment of early puberty andendometriosis)
 High doses of heparin (used to prevent blood clots), especially withprolonged use
 Cholestyramine (used to control blood cholesterol)

Many of the medications on this list are essential treatments for certain medical
conditions. If you are taking any of these medications, do not change your dosage orstop taking your medication without consulting with your healthcare provider.
What lowers the risk of osteoporosis?
Fortunately, there are many things you can do to reduce the risk of osteoporosis.
Regular weight-bearing exercise (such as brisk walking, dancing, jazzercise andjogging) helps to develop and maintain healthy bones. Bicycling and swimming areexcellent exercises for general fitness, but these are NOT weight-bearing exercises, andthey do not help to build strong bones. Exercises that are especially good for

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Bone Health
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bone health include higher-impact weight-bearing activities, such as hopping,jogging and jumping rope. Resistance exercises, such as light weight lifting,also help to build strong bones and are especially important for bones of the upper
body, including the arms and shoulders. If you have problems with your heart, or
have painful bones or joints, be sure to discuss your individual health status andcancer treatment history with your healthcare provider before starting any new
exercise program.
A diet high in calcium also is important in preventing osteoporosis. Most healthcare
professionals recommend 1000-1500 mg a day, which means a diet rich indairy products (milk, cheese, yogurt) and leafy green vegetables. Talking with adietitian may help you design a healthy diet. Over-the-counter calcium supplements
also may be useful. Additional information about calcium-rich diets is available atwww.nationaldairycouncil.org.
Vitamin D is needed in order to absorb calcium. Skin makes this vitamin naturally when
exposed to sunlight. Many dairy products also contain vitamin D. In general, you should
not take more than 800 units of Vitamin D per day. Taking too much vitamin D may be
harmful, so it’s best to check with your healthcare provider before taking any vitamin D
supplements.
What screening is recommended?
After reviewing your treatment history and risk factors, your healthcare provider canadvise you regarding the need for bone density testing. For those at risk, a baselinebone density scan is recommended for childhood cancer survivors when they enter
long-term follow-up (2 or more years after completion of therapy). Follow-up scans may
be needed for ongoing monitoring of bone density in some patients.

Written by Julie Blatt MD, Division of Pediatric Hematology-Oncology, University ofNorth Carolina, Chapel Hill, NC.
Reviewed by Charles Sklar MD, Melissa M. Hudson MD, Debra L. Friedman MD, Joan
Darling PhD, Wendy Landier CPNP, and Sarah Bottomley MN, RN, CPNP, CPON®.

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Healthy living after treatment for childhood cancer

Bone Health
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Additional health information for childhood cancer survivors is available atwww.survivorshipguidelines.org
Note: Throughout this Health Links series, the term "childhood cancer" is used to designate pediatric cancers that may
occur during childhood, adolescence, or young adulthood. Health Links are designed to provide health information
for survivors of pediatric cancer, regardless of whether the cancer occurred during childhood, adolescence, or young
adulthood.
Disclaimer and Notice of Proprietary Rights
Introduction to Late Effects Guidelines and Health Links: The "Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers" and accompanying"Health Links" were developed by the Children’s Oncology Group as a collaborative effort of the Late Effects Committee and Nursing Discipline.
For Informational Purposes Only: The information and contents of each document or series of documents made available from by the Children’s Oncology Group relating to lateeffects of cancer treatment and care or containing the title "Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers" or the title "HealthLink", whether available in print or electronic format (including any digital format, e-mail transmission, or download from the website), shall be known hereinafter as "Informational
Content". All Informational Content is for informational purposes only. The Informational Content is not intended to substitute for medical advice, medical care, diagnosis or treatment obtained from a physician or health care provider.
To cancer patients (if children, their parents or legal guardians): Please seek the advice of a physician or other qualified health provider with any questions you may haveregarding a medical condition and do not rely on the Informational Content. The Children’s Oncology Group is a research organization and does not provide individualized
medical care or treatment.
To physicians and other healthcare providers: The Informational Content is not intended to replace your independent clinical judgment, medical advice, or to exclude
other legitimate criteria for screening, health counseling, or intervention for specific complications of childhood cancer treatment. Neither is the Informational Content intended
to exclude other reasonable alternative follow-up procedures. The Informational Content is provided as a courtesy, but not intended as a sole source of guidance inthe evaluation of childhood cancer survivors. The Children’s Oncology Group recognizes that specific patient care decisions are the prerogative of the patient, family, andhealthcare provider.
No endorsement of any specific tests, products, or procedures is made by Informational Content, the Children’s Oncology Group, or affiliated party or member of the Children’s
Oncology Group.
No Claim to Accuracy or Completeness: While the Children's Oncology Group has made every attempt to assure that the Informational Content is accurate and complete as of thedate of publication, no warranty or representation, express or implied, is made as to the accuracy, reliability, completeness, relevance, or timeliness of such Informational Content.
No Liability on Part of Children’s Oncology Group and Related Parties/ Agreement to Indemnify and Hold Harmless the Children’s Oncology Group and Related Parties:
No liability is assumed by the Children's Oncology Group or any affiliated party or member thereof for damage resulting from the use, review, or access of the Informational Content.
You agree to the following terms of indemnification: (i) "Indemnified Parties" include authors and contributors to the Informational Content, all officers, directors, representatives,
employees, agents, and members of the Children’s Oncology Group and affiliated organizations; (ii) by using, reviewing, or accessing the Informational Content, you agree, at yourown expense, to indemnify, defend and hold harmless Indemnified Parties from any and all losses, liabilities, or damages (including attorneys' fees and costs) resulting from any andall claims, causes of action, suits, proceedings, or demands related to or arising out of use, review or access of the Informational Content.
Proprietary Rights: The Informational Content is subject to protection under the copyright law and other intellectual property law in the United States and worldwide. The Children's
Oncology Group retains excursive copyright and other right, title, and interest to the Informational Content and claims all intellectual property rights available under law. You hereby agree to help the Children’s Oncology Group secure all copyright and intellectual property rights for the benefit of the Children’s Oncology Group by taking additional action
at a later time, action which could include signing consents and legal documents and limiting dissemination or reproduction of Informational Content.

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Healthy living after treatment for childhood cancer

Breast Cancer
Version 2.0 - 3/06

Breast Cancer Following Treatment forChildhood Cancer: Are You at Risk?
You have successfully been treated for cancer during childhood or adolescence andare now moving forward with your life – so the last thing you want to be reminded about
is the risk of developing another cancer during adulthood. For a variety of reasons, therisk of cancer increases for everyone as they age. Depending on the specific treatment
you received for childhood cancer, you may be at increased risk for developing breast
cancer. It is important to understand that risk, so that you can take steps to protect yourhealth.
What are the risk factors?
Several studies have shown that women treated with radiation to the chest forcancer during childhood, adolescence, or young adulthood have an increased riskof developing breast cancer as they get older, compared to women their same age in
the general population. The risk of secondary breast cancer is related to the dose ofradiation. People treated with higher doses of radiation have the highest risk.
Researchers are studying this problem to better understand the risk factors and findways to prevent secondary breast cancer.
There are other known risk factors for developing breast cancer that apply to all
women, not just those who have received radiation to the chest.
These additional risk factors include:
Early menstruation (before the age of 12)
 Late menopause (after age 55)
 Never having a baby or having a first baby after the age of 30
 Having a close relative with breast cancer
 Being overweight Having an inactive (sedentary) lifestyle (not getting regular exercise)Other possible risk factors associated with developing breast cancer include:
High fat diet
 Drinking too much alcohol Never breastfeeding Smoking Birth control pills
 Hormone replacement therapy taken for long periods of timeCopyright 2006 © Children’s Oncology GroupAll rights reserved worldwide

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Breast Cancer
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When is breast cancer likely to occur?
The risk of secondary breast cancer begins to increase between five and nine years
following radiation therapy and continues to rise thereafter. This means that if a woman
develops breast cancer following chest radiation for childhood/adolescent cancer, it
usually happens at a much younger age (usually 30 to 40 years old) than in women who
develop primary breast cancer (usually age 50 or older).
What can I do to protect my health?
Most women who received radiation therapy to the chest during childhood,adolescence, or young adulthood will NOT develop breast cancer. However, if
you received radiation to the chest, it’s important to understand that the risk IS
higher for you than it is for women your age who never received radiation. So, thebest way for you to protect your health is by taking steps to closely monitor yourbreasts. That way, if a cancer develops, it will be detected in its earliest stages,
when treatment is most effective. It is also important to tell your healthcare provider
about your cancer treatment history, including the dose of chest radiation thatyou received. You should arrange for your healthcare provider to obtain a writtensummary of your cancer treatment (see related Health Link: "Introduction to LongTerm Follow-Up").
What monitoring is recommended?
If you were treated with chest radiation therapy at a dose of 20 Gy (2000cGy/rads) or higher during childhood, adolescence, or young adulthood, you
should:1. Perform monthly breast self-examination. Report any lumps or changes
to your healthcare provider right away.
2. Have a clinical breast exam performed by your healthcare provider - at least
once a year until you reach age 25 - then every 6 months thereafter.
3. Have a yearly mammogram* - starting at age 25 or 8 years after you
received radiation (whichever comes last).
*Note: Breast tissue in younger women (prior to menopause) tends to be more
dense than breast tissue in older women. Because of this, some healthcare
providers may recommend other tests (such as an MRI or breast ultrasound) tomonitor for breast cancer in younger women.

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Breast Cancer
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If your healthcare provider is not familiar with these monitoring recommendations
for women who have received chest radiation during childhood, adolescence, or
young adulthood, we encourage you to share this Health Link with them, and tell themthat additional information is also available at www.survivorshipguidelines.org.
What if I had a lower dose of radiation to the chest (or had total body irradiation)?
For those treated with lower doses of radiation therapy to the chest (less than
20 Gy or 2000 cGy/rads), or for those who had total body radiation, there still
may be an increased risk, but there are no scientific studies currently available toconfirm this. You should have a discussion with your healthcare provider and makea decision about whether or not monitoring for breast cancer should be started
earlier for you than for people who never had radiation.
Is there anything else I can do to minimize the risk?
The following lifestyle changes may help reduce the risk of developing breast
cancer, and will also help you to stay as healthy as possible:
Eat more fruits and vegetables (at least 5 servings a day are recommended).
 Exercise at least 30 minutes per day on most days of the week.
 If you are overweight, lose excess weight.
 Limit your intake of alcohol to no more than one drink per day.
 If you smoke, quit.
 If you have a baby, try to breastfeed for at least four months.
 If you need hormone replacement therapy or birth control pills, discuss therisks and benefits with your healthcare professional.
 Limit your exposure to potentially harmful chemicals and pesticides. Useprotective equipment if you are exposed to chemicals in your workplace.


If you have questions regarding your risk of developing breast cancer, and how you
can best protect your health, be sure to discuss this with your healthcare provider.

Written by Melissa Hudson MD, After Completion of Therapy Clinic, St. JudeChildren’s Research Hospital, Memphis, TN, and Wendy Landier, RN, MSN, CPNP,
CPON®, Survivorship Clinic, City of Hope National Medical Center, Duarte, CA.
Portions adapted from CCSS Newsletter Winter 2001, used with permission.
Reviewed by Jacqueline Casillas MD, Smita Bhatia MD, MPH, Louis S. Constine
MD, Debra Friedman MD, and Fran Wiley RN, MN.
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Healthy living after treatment for childhood cancer

Breast Cancer
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Additional health information for childhood cancer survivors is available atwww.survivorshipguidelines.org
Note: Throughout this Health Links series, the term "childhood cancer" is used to designate pediatric cancers that may
occur during childhood, adolescence, or young adulthood. Health Links are designed to provide health information
for survivors of pediatric cancer, regardless of whether the cancer occurred during childhood, adolescence, or young
adulthood.
Disclaimer and Notice of Proprietary Rights
Introduction to Late Effects Guidelines and Health Links: The "Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers" and accompanying"Health Links" were developed by the Children’s Oncology Group as a collaborative effort of the Late Effects Committee and Nursing Discipline.
For Informational Purposes Only: The information and contents of each document or series of documents made available from by the Children’s Oncology Group relating to lateeffects of cancer treatment and care or containing the title "Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers" or the title "HealthLink", whether available in print or electronic format (including any digital format, e-mail transmission, or download from the website), shall be known hereinafter as "Informational
Content". All Informational Content is for informational purposes only. The Informational Content is not intended to substitute for medical advice, medical care, diagnosis or treatment obtained from a physician or health care provider.
To cancer patients (if children, their parents or legal guardians): Please seek the advice of a physician or other qualified health provider with any questions you may haveregarding a medical condition and do not rely on the Informational Content. The Children’s Oncology Group is a research organization and does not provide individualized
medical care or treatment.
To physicians and other healthcare providers: The Informational Content is not intended to replace your independent clinical judgment, medical advice, or to exclude
other legitimate criteria for screening, health counseling, or intervention for specific complications of childhood cancer treatment. Neither is the Informational Content intended
to exclude other reasonable alternative follow-up procedures. The Informational Content is provided as a courtesy, but not intended as a sole source of guidance inthe evaluation of childhood cancer survivors. The Children’s Oncology Group recognizes that specific patient care decisions are the prerogative of the patient, family, andhealthcare provider.
No endorsement of any specific tests, products, or procedures is made by Informational Content, the Children’s Oncology Group, or affiliated party or member of the Children’s
Oncology Group.
No Claim to Accuracy or Completeness: While the Children's Oncology Group has made every attempt to assure that the Informational Content is accurate and complete as of thedate of publication, no warranty or representation, express or implied, is made as to the accuracy, reliability, completeness, relevance, or timeliness of such Informational Content.
No Liability on Part of Children’s Oncology Group and Related Parties/ Agreement to Indemnify and Hold Harmless the Children’s Oncology Group and Related Parties:
No liability is assumed by the Children's Oncology Group or any affiliated party or member thereof for damage resulting from the use, review, or access of the Informational Content.
You agree to the following terms of indemnification: (i) "Indemnified Parties" include authors and contributors to the Informational Content, all officers, directors, representatives,
employees, agents, and members of the Children’s Oncology Group and affiliated organizations; (ii) by using, reviewing, or accessing the Informational Content, you agree, at yourown expense, to indemnify, defend and hold harmless Indemnified Parties from any and all losses, liabilities, or damages (including attorneys' fees and costs) resulting from any andall claims, causes of action, suits, proceedings, or demands related to or arising out of use, review or access of the Informational Content.
Proprietary Rights: The Informational Content is subject to protection under the copyright law and other intellectual property law in the United States and worldwide. The Children's
Oncology Group retains excursive copyright and other right, title, and interest to the Informational Content and claims all intellectual property rights available under law. You hereby agree to help the Children’s Oncology Group secure all copyright and intellectual property rights for the benefit of the Children’s Oncology Group by taking additional action
at a later time, action which could include signing consents and legal documents and limiting dissemination or reproduction of Informational Content.

Copyright 2006 © Children’s Oncology GroupAll rights reserved worldwide

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Healthy living after treatment for childhood cancer

Cataracts
Version 2.0 - 3/06

Cataracts after Treatment for Childhood Cancer
Childhood cancer treatment sometimes requires the use of medications or radiation that
can increase the risk of developing cataracts. Because vision can have a significant
impact on daily living, it is important for survivors who received these treatments to havetheir eyes checked regularly.
What is a cataract?
A cataract is clouding of the normally clear lens of the eye. Cataracts often develop
slowly, but as the clouding increases, vision can be affected.
How does a cataract affect vision?
The eyes are remarkable organs, allowing light to be converted into impulses that aretransmitted to the brain, where images are perceived. Light enters the eye through aclear layer of tissue known as the cornea. The cornea bends and focuses the light, andsends it through the opening of the eye known as the pupil. The pupil controls how
much light enters the eye. Behind the pupil is the lens of the eye, which focuses the lightonto the retina, the membrane along the back wall of the eye. The nerve cells in theretina change the light into electrical impulses and send them through the optic nerve
to the brain, where the image is perceived. When the lens becomes cloudy due to acataract, the image delivered to the retina
becomes blurry.
What are the symptoms of a cataract?
Common symptoms of cataracts include:-

Painless blurring of vision
Sensitivity to light and glare
Double vision in one eye
Poor night vision
Fading or yellowing of colors
The need for frequent changes in prescriptions for glasses or contact lenses

What cancer therapies increase the risk of developing cataracts?
Certain medications, including:- Busulfan- Corticosteroids, such as prednisone and dexamethasone

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Radiation therapy to the following areas:- Eye and surrounding tissue (orbits)- Head or brain (cranial)- Total body irradiation (TBI)

The risk for cataracts increases with:- Higher radiation doses- Frequent exposure to sunlight- The passage of time (the longer off therapy the survivor is)Cataracts
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What monitoring is recommended?
Have an eye examination every year during your regular check-up
 See an eye specialist (ophthalmologist or optometrist) for a full eye evaluation:Every year if you had:
- TBI
- High doses (30 Gy or 3000 cGy/rads or higher) of radiation to the head, brainor eyes- A tumor involving the eye
Every 3 years if you had:
- Lower doses of radiation
How are cataracts treated?
Not all cataracts need treatment. In many cases, an ophthalmologist may monitor
the vision closely over many years, and will recommend treatment if and when it
becomes necessary. The only treatment for cataracts is surgical removal of the lens andreplacement with an artificial lens. Today, cataract surgery is a low-risk procedure thatis performed on an outpatient basis and usually is successful in restoring vision.
How can I keep my eyes as healthy as possible?
Wear sunglasses with UV protection when in bright sunlight.
 When participating in sports, be sure to select protective eyewear that is appropriate for the sport. Eyewear worn for sports should be properly fitted by an eye
care professional.
 Avoid toys with sharp, protruding or projectile parts.
 Never play with fireworks or sparklers of any kind to avoid accidental injury.
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Cataracts
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Be careful when working with hazardous household chemicals.
 Wear protective eyewear when using a lawnmower, power trimmer, or edger, andwhen working with dangerous equipment in the workshop.
 If you do experience an eye injury, seek medical attention promptly.


Written by Teresa Sweeney RN, MSN, CPNP, After Completion of Therapy Clinic, St.
Jude Children’s Research Hospital, Memphis, TN and Wendy Landier, RN, MSN, CPNP,
CPON,® Survivorship Clinic, City of Hope National Medical Center, Duarte, CA.
Reviewed by Lisa Bashore MS, RN, CPNP, CPON®, and Joan Darling PhD.
Illustrated by Devika Bhatia.

Additional health information for childhood cancer survivors is available atwww.survivorshipguidelines.org
Note: Throughout this Health Links series, the term "childhood cancer" is used to designate pediatric cancers that may
occur during childhood, adolescence, or young adulthood. Health Links are designed to provide health information
for survivors of pediatric cancer, regardless of whether the cancer occurred during childhood, adolescence, or young
adulthood.
Disclaimer and Notice of Proprietary Rights
Introduction to Late Effects Guidelines and Health Links: The "Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers" and accompanying"Health Links" were developed by the Children’s Oncology Group as a collaborative effort of the Late Effects Committee and Nursing Discipline.
For Informational Purposes Only: The information and contents of each document or series of documents made available from by the Children’s Oncology Group relating to lateeffects of cancer treatment and care or containing the title "Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers" or the title "HealthLink", whether available in print or electronic format (including any digital format, e-mail transmission, or download from the website), shall be known hereinafter as "Informational
Content". All Informational Content is for informational purposes only. The Informational Content is not intended to substitute for medical advice, medical care, diagnosis or treatment obtained from a physician or health care provider.
To cancer patients (if children, their parents or legal guardians): Please seek the advice of a physician or other qualified health provider with any questions you may haveregarding a medical condition and do not rely on the Informational Content. The Children’s Oncology Group is a research organization and does not provide individualized
medical care or treatment.
To physicians and other healthcare providers: The Informational Content is not intended to replace your independent clinical judgment, medical advice, or to exclude
other legitimate criteria for screening, health counseling, or intervention for specific complications of childhood cancer treatment. Neither is the Informational Content intended
to exclude other reasonable alternative follow-up procedures. The Informational Content is provided as a courtesy, but not intended as a sole source of guidance inthe evaluation of childhood cancer survivors. The Children’s Oncology Group recognizes that specific patient care decisions are the prerogative of the patient, family, andhealthcare provider.
No endorsement of any specific tests, products, or procedures is made by Informational Content, the Children’s Oncology Group, or affiliated party or member of the Children’s
Oncology Group.
No Claim to Accuracy or Completeness: While the Children's Oncology Group has made every attempt to assure that the Informational Content is accurate and complete as of thedate of publication, no warranty or representation, express or implied, is made as to the accuracy, reliability, completeness, relevance, or timeliness of such Informational Content.
No Liability on Part of Children’s Oncology Group and Related Parties/ Agreement to Indemnify and Hold Harmless the Children’s Oncology Group and Related Parties:
No liability is assumed by the Children's Oncology Group or any affiliated party or member thereof for damage resulting from the use, review, or access of the Informational Content.
You agree to the following terms of indemnification: (i) "Indemnified Parties" include authors and contributors to the Informational Content, all officers, directors, representatives,
employees, agents, and members of the Children’s Oncology Group and affiliated organizations; (ii) by using, reviewing, or accessing the Informational Content, you agree, at yourown expense, to indemnify, defend and hold harmless Indemnified Parties from any and all losses, liabilities, or damages (including attorneys' fees and costs) resulting from any andall claims, causes of action, suits, proceedings, or demands related to or arising out of use, review or access of the Informational Content.
Proprietary Rights: The Informational Content is subject to protection under the copyright law and other intellectual property law in the United States and worldwide. The Children's
Oncology Group retains excursive copyright and other right, title, and interest to the Informational Content and claims all intellectual property rights available under law. You hereby agree to help the Children’s Oncology Group secure all copyright and intellectual property rights for the benefit of the Children’s Oncology Group by taking additional action
at a later time, action which could include signing consents and legal documents and limiting dissemination or reproduction of Informational Content.

Copyright 2006 © Children’s Oncology GroupAll rights reserved worldwide

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Healthy living after treatment for childhood cancer

Central Adrenal Insufficiency
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Endocrine Problems after Childhood Cancer:
Central Adrenal Insufficiency
Some people who were treated for cancer during childhood may develop endocrine(hormone) problems as a result of changes in the function of a complex system ofglands known as the endocrine system.
What is the endocrine system?
The endocrine system is a group of glands that regulates many body functions
including growth, puberty, energy level, urine production, and stress response. Glandsof the endocrine system include the pituitary, hypothalamus, thyroid, adrenals,
pancreas, ovaries (in females), and testes (in males). The hypothalamus and pituitary
are sometimes called the "master glands" because they control many of the otherglands in the endocrine system. Unfortunately, some treatments given for childhood
cancer can damage the endocrine system, resulting in a variety of problems.

What are hormones?
Hormones are chemical messengers that carry information from the endocrine glands
through the bloodstream to the body’s cells. The endocrine system makes many hormones (such as growth hormone, sex hormones, adrenal and thyroid hormones) thatwork together to maintain specific bodily functions.
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Healthy living after treatment for childhood cancer
What is central adrenal insufficiency?
Central adrenal insufficiency is caused by a deficiency of the pituitary hormone known
as Adrenocorticotropic Hormone (ACTH). The adrenal glands (located on top of thekidneys) are stimulated by ACTH to produce a hormone known as cortisol. If thepituitary gland doesn’t make enough ACTH, then cortisol will not be made by theadrenal gland. Cortisol is important for health because it helps to keep the blood sugar
at a normal level and helps the body deal with physical stress, such as fevers or injuries.
What are the risk factors for central adrenal insufficiency?
Radiation to the brain, especially in higher doses
Surgical removal of the pituitary gland

What are the symptoms of central adrenal insufficiency?
Under normal circumstances, there may be no symptoms at all, or there may be mild
symptoms, such as fatigue, weakness, poor appetite, or dizziness. However, understressful circumstances, such as fever, infection, surgery, or injury, symptoms may
become severe, and may include vomiting, diarrhea, low blood sugar, and dehydration.
What screening is recommended?
People who had radiation in a dose of 40 Gy (4000 cGy/rads) or higher to the central
area of the brain (hypothalamic-pituitary axis) should have a blood test done tocheck the cortisol level. This test should be done yearly for at least 15 years since thiscomplication can occur many years after radiation. Anyone who is having symptoms
suggestive of central adrenal insufficiency should also have a blood test done to checkthe cortisol level. This test is usually done first thing in the morning, because thecortisol level varies throughout the day and is usually highest early in the morning.
If your morning cortisol level is abnormal, your healthcare provider will probablyrefer you to an endocrinologist (doctor who specializes in hormone problems). The
endocrinologist will do more specific tests to evaluate the problem.
How is central adrenal insufficiency treated?
Central adrenal insufficiency is treated with hydrocortisone, a medication that isgiven by mouth every day on a regular schedule. In times of increased stress, suchas illness or surgery, the dose of hydrocortisone is increased and can be administeredby injection if necessary. If you have central adrenal insufficiency, you should wear
a medical alert bracelet so that in case of an accident or sudden illness, emergency
medical workers will be aware of your special health needs.
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Healthy living after treatment for childhood cancer
Written by Debra Eshelman RN, MSN, CPNP, After the Cancer Experience (ACE)
Pediatric and Young Adult Survivor Programs, Children’s Medical Center of Dallas andthe University of Texas Southwestern Medical Center, Dallas, TX, and Wendy Landier
RN, MSN, CPNP, CPON®, Survivorship Clinic, City of Hope National Medical Center,
Duarte, CA.
Reviewed by Charles Sklar MD, Smita Bhatia MD, MPH, Melissa M. Hudson MD, andSusan Shaw, RN, MS, PNP.
Illustrated by Devika Bhatia.

Additional health information for childhood cancer survivors is available atwww.survivorshipguidelines.org
Note: Throughout this Health Links series, the term "childhood cancer" is used to designate pediatric cancers that may
occur during childhood, adolescence, or young adulthood. Health Links are designed to provide health information
for survivors of pediatric cancer, regardless of whether the cancer occurred during childhood, adolescence, or young
adulthood.
Disclaimer and Notice of Proprietary Rights
Introduction to Late Effects Guidelines and Health Links: The "Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers" and accompanying"Health Links" were developed by the Children’s Oncology Group as a collaborative effort of the Late Effects Committee and Nursing Discipline.
For Informational Purposes Only: The information and contents of each document or series of documents made available from by the Children’s Oncology Group relating to lateeffects of cancer treatment and care or containing the title "Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers" or the title "HealthLink", whether available in print or electronic format (including any digital format, e-mail transmission, or download from the website), shall be known hereinafter as "Informational
Content". All Informational Content is for informational purposes only. The Informational Content is not intended to substitute for medical advice, medical care, diagnosis or treatment obtained from a physician or health care provider.
To cancer patients (if children, their parents or legal guardians): Please seek the advice of a physician or other qualified health provider with any questions you may haveregarding a medical condition and do not rely on the Informational Content. The Children’s Oncology Group is a research organization and does not provide individualized
medical care or treatment.
To physicians and other healthcare providers: The Informational Content is not intended to replace your independent clinical judgment, medical advice, or to exclude
other legitimate criteria for screening, health counseling, or intervention for specific complications of childhood cancer treatment. Neither is the Informational Content intended
to exclude other reasonable alternative follow-up procedures. The Informational Content is provided as a courtesy, but not intended as a sole source of guidance inthe evaluation of childhood cancer survivors. The Children’s Oncology Group recognizes that specific patient care decisions are the prerogative of the patient, family, andhealthcare provider.
No endorsement of any specific tests, products, or procedures is made by Informational Content, the Children’s Oncology Group, or affiliated party or member of the Children’s
Oncology Group.
No Claim to Accuracy or Completeness: While the Children's Oncology Group has made every attempt to assure that the Informational Content is accurate and complete as of thedate of publication, no warranty or representation, express or implied, is made as to the accuracy, reliability, completeness, relevance, or timeliness of such Informational Content.
No Liability on Part of Children’s Oncology Group and Related Parties/ Agreement to Indemnify and Hold Harmless the Children’s Oncology Group and Related Parties:
No liability is assumed by the Children's Oncology Group or any affiliated party or member thereof for damage resulting from the use, review, or access of the Informational Content.
You agree to the following terms of indemnification: (i) "Indemnified Parties" include authors and contributors to the Informational Content, all officers, directors, representatives,
employees, agents, and members of the Children’s Oncology Group and affiliated organizations; (ii) by using, reviewing, or accessing the Informational Content, you agree, at yourown expense, to indemnify, defend and hold harmless Indemnified Parties from any and all losses, liabilities, or damages (including attorneys' fees and costs) resulting from any andall claims, causes of action, suits, proceedings, or demands related to or arising out of use, review or access of the Informational Content.
Proprietary Rights: The Informational Content is subject to protection under the copyright law and other intellectual property law in the United States and worldwide. The Children's
Oncology Group retains excursive copyright and other right, title, and interest to the Informational Content and claims all intellectual property rights available under law. You hereby agree to help the Children’s Oncology Group secure all copyright and intellectual property rights for the benefit of the Children’s Oncology Group by taking additional action
at a later time, action which could include signing consents and legal documents and limiting dissemination or reproduction of Informational Content.

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Healthy living after treatment for childhood cancer

Chronic Pain
Version 2.0 - 3/06

Chronic Pain after Childhood Cancer
Pain in cancer survivors
Pain is a common experience during cancer treatment, either from the cancer itself
or from the treatment. Usually, after the treatment is finished, there is no more pain.
For some people, however, pain continues to be a side effect of either the cancer or its
treatment, even when the cancer is in remission and treatment has been completed. For
cancer survivors, long-term pain may occur for a variety of reasons, such as damage tobones, joints, or nerves resulting from treatment with radiation, surgery, certain
chemotherapy medications, or corticosteroids.
What is the difference between acute and chronic pain?
Acute pain is generally the result of illness (such as cancer), injury and/or surgery andis usually confined to a limited period of time. Acute pain has a biologic purpose, thatis, it tells us that we are hurt or ill, so that we can protect ourselves.
Chronic pain lasts after the underlying illness or injury has resolved. Chronic pain isa problem because the longer the pain lasts, the more complicated it might become,particularly in the way it could affect a survivor’s quality of life.
Pain is very complex
Healthcare providers used to think that the amount of pain a person had was directly
related to the extent of physical damage to body tissue. Healthcare providers now knowthat the pain people feel is affected by many physical, emotional, and cognitive factorsthat are unique to each individual.
Recent studies involving new technology to study the brain are confirming that many
processes are involved in chronic pain. The experience of pain is the result of acomplex interchange of information from many different areas of the brain. Thesestudies have also helped us to understand that pain can sometimes persist (even when
the original injury has healed) due to changes in the way the body sends and receives
pain signals.
Healthcare providers have learned that different people perceive pain in different ways.
These differences can be seen in brain imaging studies as individuals rate their pain to
the same source of pain, or "stimulus". That is, some people seem to be very sensitive,
whereas others may report little pain even with the same stimulus. While you might be

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born with some of these differences, environmental factors tend to play an importantrole too. Factors such as age, sex, developmental level, family and cultural traditions,prior pain experience, and circumstances surrounding the injury all contribute toward
how a cancer survivor might interpret, experience, and cope with pain.
Pain and Psychological Health
Psychological factors play a role in the amount of distress that is experienced, or how
upsetting the pain might be to each individual. Furthermore, other factors, such as
family or work environment, can also affect the ability to cope with pain.
In the case of chronic pain that lasts for months and years, it is possible for cancer
survivors to become increasingly depressed if they don’t have ways to cope with thepain in a healthy way. Survivors with pain may sometimes become frustrated andangry, especially if pain is preventing them from doing activities that they used to enjoy.
If a survivor believes that pain controls his or her life, then they may begin to feel powerless, develop low self-esteem, and avoid taking on challenges and opportunities for
growth. Pain can develop into a troublesome cycle. For example, a survivor might stopmoving around and doing physical activities because they are afraid of triggering or
worsening their pain, but the less active they are, the weaker their muscles become,which can then worsen the pain.
Sometimes, people begin to anticipate the physical sensations of pain in a fearful way.
They may withdraw from social or community activities to avoid having to deal with painin public situations, and they may increasingly isolate themselves. Depression, anxiety,and chronic stress may follow, which than can make the pain worse. This may also leadto physical changes in the body associated with stress, depression, and anxiety, which
can lower the pain thresholds.
How is Pain Treated?
Fortunately, there are ways to manage and cope with chronic pain. Chronic pain can betreated with medicine, without medicine using behavioral treatments (such as relaxation
or meditation), or by a combination of the two. Non-medicine treatments can be usedalong with medications to manage pain during all phases of cancer treatment. Studiesof patients suffering from chronic pain show that training in pain-coping skills can help
increase self-confidence and reduce distress from pain. Changes in how a person copeswith pain and what they believe about their pain may also produce positive changes inbehavior, such as increased exercise, improved pacing of activities, better compliancewith medication, and increased participation in social activities.
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Behavioral skills can be helpful in treating and coping with pain. Specific techniques
include relaxation, meditation, guided imagery, distraction, and redirected thinking, as
well as changing thoughts and beliefs about pain and what it means. Other effective
approaches include support groups, massage, music, and counseling focused on pain
management and behavioral modification.
Additional information about chronic pain is available on the following websites:www.painfoundation.org
www.painandhealth.org
www.ampainsoc.org

Written by Sunita Patel PhD, Clinical Neuropsychologist and Director, Behavioral
Research in Pediatrics, City of Hope National Medical Center, Duarte, California.
Reviewed by Scott Hawkins LMSW, Wendy Landier CPNP, and Joan Darling PhD.

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Additional health information for childhood cancer survivors is available atwww.survivorshipguidelines.org
Note: Throughout this Health Links series, the term "childhood cancer" is used to designate pediatric cancers that may
occur during childhood, adolescence, or young adulthood. Health Links are designed to provide health information
for survivors of pediatric cancer, regardless of whether the cancer occurred during childhood, adolescence, or young
adulthood.
Disclaimer and Notice of Proprietary Rights
Introduction to Late Effects Guidelines and Health Links: The "Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers" and accompanying"Health Links" were developed by the Children’s Oncology Group as a collaborative effort of the Late Effects Committee and Nursing Discipline.
For Informational Purposes Only: The information and contents of each document or series of documents made available from by the Children’s Oncology Group relating to lateeffects of cancer treatment and care or containing the title "Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers" or the title "HealthLink", whether available in print or electronic format (including any digital format, e-mail transmission, or download from the website), shall be known hereinafter as "Informational
Content". All Informational Content is for informational purposes only. The Informational Content is not intended to substitute for medical advice, medical care, diagnosis or treatment obtained from a physician or health care provider.
To cancer patients (if children, their parents or legal guardians): Please seek the advice of a physician or other qualified health provider with any questions you may haveregarding a medical condition and do not rely on the Informational Content. The Children’s Oncology Group is a research organization and does not provide individualized
medical care or treatment.
To physicians and other healthcare providers: The Informational Content is not intended to replace your independent clinical judgment, medical advice, or to exclude
other legitimate criteria for screening, health counseling, or intervention for specific complications of childhood cancer treatment. Neither is the Informational Content intended
to exclude other reasonable alternative follow-up procedures. The Informational Content is provided as a courtesy, but not intended as a sole source of guidance inthe evaluation of childhood cancer survivors. The Children’s Oncology Group recognizes that specific patient care decisions are the prerogative of the patient, family, andhealthcare provider.
No endorsement of any specific tests, products, or procedures is made by Informational Content, the Children’s Oncology Group, or affiliated party or member of the Children’s
Oncology Group.
No Claim to Accuracy or Completeness: While the Children's Oncology Group has made every attempt to assure that the Informational Content is accurate and complete as of thedate of publication, no warranty or representation, express or implied, is made as to the accuracy, reliability, completeness, relevance, or timeliness of such Informational Content.
No Liability on Part of Children’s Oncology Group and Related Parties/ Agreement to Indemnify and Hold Harmless the Children’s Oncology Group and Related Parties:
No liability is assumed by the Children's Oncology Group or any affiliated party or member thereof for damage resulting from the use, review, or access of the Informational Content.
You agree to the following terms of indemnification: (i) "Indemnified Parties" include authors and contributors to the Informational Content, all officers, directors, representatives,
employees, agents, and members of the Children’s Oncology Group and affiliated organizations; (ii) by using, reviewing, or accessing the Informational Content, you agree, at yourown expense, to indemnify, defend and hold harmless Indemnified Parties from any and all losses, liabilities, or damages (including attorneys' fees and costs) resulting from any andall claims, causes of action, suits, proceedings, or demands related to or arising out of use, review or access of the Informational Content.
Proprietary Rights: The Informational Content is subject to protection under the copyright law and other intellectual property law in the United States and worldwide. The Children's
Oncology Group retains excursive copyright and other right, title, and interest to the Informational Content and claims all intellectual property rights available under law. You hereby agree to help the Children’s Oncology Group secure all copyright and intellectual property rights for the benefit of the Children’s Oncology Group by taking additional action
at a later time, action which could include signing consents and legal documents and limiting dissemination or reproduction of Informational Content.

Copyright 2006 © Children’s Oncology GroupAll rights reserved worldwide

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Healthy living after treatment for childhood cancer

Colorectal Cancer
Version 2.0 - 3/06

Colorectal Cancer Following Treatment forChildhood Cancer: Are You at Risk?
You have successfully been treated for cancer during childhood or adolescence and are
now moving forward with your life - so the last thing you want to be reminded about isthe risk of developing another cancer during adulthood. For a variety of reasons, the riskof cancer increases for everyone as they age. Depending on the specific treatment you
received for childhood cancer, you may be at increased risk for developing colorectal
cancer (cancer of the colon or rectum). It is important to understand that risk, so thatyou can take steps to protect your health.
What is colorectal cancer?
Colorectal cancer is a type of cancer that occurs in the colon (large intestine) or the
rectum (the last several inches of the large intestine). Colorectal cancer is the second
leading cause of cancer deaths in the United States. Many of these deaths happen
because the cancers are found too late to be cured. If colorectal cancer is found earlyenough, it can usually be cured.
What are the risk factors?
Several studies have shown that people who were treated with radiation to theabdomen, pelvis, or spine in moderate to high doses during childhood, adolescence, or
young adulthood have an increased risk of developing colorectal cancer. It is therefore
important for you to obtain your radiation treatment records so that you know how muchradiation you received.
Other known risk factors for developing colorectal cancer include:
Having had colorectal cancer or large intestinal polyps in the past
 Having a close relative (brother, sister, parent or child) who has had colorectal
cancer before age 60
 Having ulcerative colitis or Crohn's disease Having a hereditary colon cancer syndrome (such as familial adenomatous
polyposis)What are the signs of colorectal cancer?
Most colorectal cancers begin as a polyp. A polyp starts as a small, harmless growth in
the wall of the colon or rectum. However, as a polyp gets larger, it can develop into acancer that grows and spreads. During the early stage of colorectal cancer, there are

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Colorectal Cancer
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rarely any outward signs or symptoms to alert you or your healthcare provider thatcancer is present. This is why screening is so important. Once the cancer has become
more advanced, the following signs may be evident. If you have any of these signs, you
should see your healthcare provider immediately:
Bleeding from your rectum
Blood in your stool or in the toilet after you have a bowel movement
 A change in the shape of your stool
 Cramping pain in your lower stomach
 A feeling of discomfort or an urge to have a bowel movement when there is noneed to have one
 A change in the normal frequency of your bowel movements

Other conditions can cause these same symptoms. You should be evaluated by yourhealthcare provider to find out the reason for your symptoms.
When is colorectal cancer likely to occur?
In the general population, colorectal cancer is most likely to occur between the agesof 50 and 65. In cancer survivors who were treated with abdominal, pelvic, or spinal
radiation, it may occur earlier. The risk begins to increase around 10 years after theradiation.
What can I do to protect my health?
Most people who received radiation therapy to the abdomen, pelvis, or spine will NOT
develop colorectal cancer. However, if you received this type of radiation, it is importantto understand that the risk IS higher for you than it is for other people your age who
never received radiation. So, the best way for you to protect your health is by taking
steps to closely monitor your colon. That way, if a cancer develops, it can be detected
in its earliest stages, when treatment is most effective.
What monitoring is recommended?
If you were treated with radiation therapy to the abdomen, pelvis, or spine at doses of
30 Gy (3000 cGy/rads) or higher during childhood, adolescence, or young adulthood,
you should have a colonoscopy at least every five years, starting at the age of 35, or
10 years after radiation (whichever occurs last).

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What is a colonoscopy?
Before you have this test, you will be given a medicine to make you feel relaxedand sleepy. A thin, flexible tube connected to a video camera is then inserted into yourrectum and slowly guided into your colon. The doctor is able to examine your entire
colon, and any polyps or growths can be removed through the tube during the exam.
Colonoscopy may be uncomfortable, but it is usually not painful.
What if I had a low dose of radiation to these areas (or had total body irradiation)?
For those treated with lower doses of radiation therapy to the abdomen, pelvis, or spine(less than 30 Gy or 3000 cGy/rads), or for those who had total body radiation, there
still may be an increased risk, but there are no scientific studies currently available toconfirm this. You should have a discussion with your healthcare provider and make adecision about whether or not monitoring with colonoscopy should be started earlier for
you than for people who never had radiation.
Is there anything else that I can do to minimize the risk?
Yes, most definitely! Studies have shown that the following lifestyle changes reduce therisk of colorectal cancer and will help you stay as healthy as possible:

Eat a variety of healthful foods, with an emphasis on grains, fruits andvegetables- Eat five or more servings of a variety of vegetables and fruits each day- Choose whole grains in preference to processed (refined) grains and sugars- Limit consumption of red meats, especially processed meats (such as hot dogs
or bologna) and those high in fat- Choose foods that maintain a healthy weight

Adopt a physically active lifestyle.
- Engage in at least moderate physical activity (such as brisk walking) for 30
minutes or more on five or more days of the week
- Engaging in 45 minutes or more of moderate to vigorous activity (activities suchas running, in which you are not able to carry on a conversation without
needing to catch your breath) on five or more days per week may further reduce
your risk of colon cancer

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Colorectal Cancer
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Written by Kevin Oeffinger MD, Division of Pediatrics, Memorial Sloan-Kettering Cancer
Center, New York, New York.
Reviewed by Jacqueline Casillas MD, Wendy Landier CPNP, and Joan Darling PhD.

Additional health information for childhood cancer survivors is available atwww.survivorshipguidelines.org
Note: Throughout this Health Links series, the term "childhood cancer" is used to designate pediatric cancers that may
occur during childhood, adolescence, or young adulthood. Health Links are designed to provide health information
for survivors of pediatric cancer, regardless of whether the cancer occurred during childhood, adolescence, or young
adulthood.
Disclaimer and Notice of Proprietary Rights
Introduction to Late Effects Guidelines and Health Links: The "Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers" and accompanying"Health Links" were developed by the Children’s Oncology Group as a collaborative effort of the Late Effects Committee and Nursing Discipline.
For Informational Purposes Only: The information and contents of each document or series of documents made available from by the Children’s Oncology Group relating to lateeffects of cancer treatment and care or containing the title "Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers" or the title "HealthLink", whether available in print or electronic format (including any digital format, e-mail transmission, or download from the website), shall be known hereinafter as "Informational
Content". All Informational Content is for informational purposes only. The Informational Content is not intended to substitute for medical advice, medical care, diagnosis or treatment obtained from a physician or health care provider.
To cancer patients (if children, their parents or legal guardians): Please seek the advice of a physician or other qualified health provider with any questions you may haveregarding a medical condition and do not rely on the Informational Content. The Children’s Oncology Group is a research organization and does not provide individualized
medical care or treatment.
To physicians and other healthcare providers: The Informational Content is not intended to replace your independent clinical judgment, medical advice, or to exclude
other legitimate criteria for screening, health counseling, or intervention for specific complications of childhood cancer treatment. Neither is the Informational Content intended
to exclude other reasonable alternative follow-up procedures. The Informational Content is provided as a courtesy, but not intended as a sole source of guidance inthe evaluation of childhood cancer survivors. The Children’s Oncology Group recognizes that specific patient care decisions are the prerogative of the patient, family, andhealthcare provider.
No endorsement of any specific tests, products, or procedures is made by Informational Content, the Children’s Oncology Group, or affiliated party or member of the Children’s
Oncology Group.
No Claim to Accuracy or Completeness: While the Children's Oncology Group has made every attempt to assure that the Informational Content is accurate and complete as of thedate of publication, no warranty or representation, express or implied, is made as to the accuracy, reliability, completeness, relevance, or timeliness of such Informational Content.
No Liability on Part of Children’s Oncology Group and Related Parties/ Agreement to Indemnify and Hold Harmless the Children’s Oncology Group and Related Parties:
No liability is assumed by the Children's Oncology Group or any affiliated party or member thereof for damage resulting from the use, review, or access of the Informational Content.
You agree to the following terms of indemnification: (i) "Indemnified Parties" include authors and contributors to the Informational Content, all officers, directors, representatives,
employees, agents, and members of the Children’s Oncology Group and affiliated organizations; (ii) by using, reviewing, or accessing the Informational Content, you agree, at yourown expense, to indemnify, defend and hold harmless Indemnified Parties from any and all losses, liabilities, or damages (including attorneys' fees and costs) resulting from any andall claims, causes of action, suits, proceedings, or demands related to or arising out of use, review or access of the Informational Content.
Proprietary Rights: The Informational Content is subject to protection under the copyright law and other intellectual property law in the United States and worldwide. The Children's
Oncology Group retains excursive copyright and other right, title, and interest to the Informational Content and claims all intellectual property rights available under law. You hereby agree to help the Children’s Oncology Group secure all copyright and intellectual property rights for the benefit of the Children’s Oncology Group by taking additional action
at a later time, action which could include signing consents and legal documents and limiting dissemination or reproduction of Informational Content.

Copyright 2006 © Children’s Oncology GroupAll rights reserved worldwide

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Healthy living after treatment for childhood cancer

Cystectomy
Version 2.0 - 3/06

Cystectomy and Childhood Cancer
The information in this Health Link will help you recognize signs and symptoms ofurinary bladder problems that may occur after cystectomy.
What is a cystectomy?
A cystectomy is an operation to remove the urinary bladder.
Who needs a cystectomy?
Two groups of cancer survivors may have undergone a cystectomy during theirchildhood cancer treatment. The first group includes those who had a cystectomy aspart of their cancer treatment. Successful treatment of rhabdomyosarcoma of theurinary bladder and prostate, Ewing’s sarcoma, and other sarcomas in the pelvic area
sometimes requires cystectomy. The second group includes people who required acystectomy because of treatment complications, such as hemorrhagic cystitis(bleeding) or bladder fibrosis (scar tissue).
How does urine exit the body after a cystectomy?
After the urinary bladder is removed, a new passageway is created so that urine canleave the body. Urine is removed from the kidney in a process called "diversion". There
are three main types of diversions, based on whether urine flows from the bodyspontaneously ("incontinent diversion") or is collected in a reservoir ("continent
diversion").
An "incontinent diversion" is usually made through a loop of small intestine that is
separated from the rest of the bowel and called an "ileal conduit" or "urostomy". The
ileal conduit is connected to the outside of the abdomen by way of an opening called a"stoma". Internally, the ureters empty into the conduit, which then serves as a pipeline
for urine to flow directly through the stoma.
There are two types of "continent diversions." The first is the cutaneous continent
diversion. This reservoir is made from intestine and is placed within the abdomen in
front of the kidneys. The ureters are then connected to this pouch. The appendix
or another short piece of small intestine is used to create an extension from thispouch through the abdominal wall to the surface of the skin, often around the belly
button. This opening is called a "stoma". This design prevents urine from flowing backinto the kidney (reflux) or spilling out onto the skin. Urine collects in the reservoir, andis removed several times a day by insertion of a catheter (tube) into the stoma.
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The second type of continent diversion is done by making a new bladder from bowel
and is called an "orthotopic neobladder". The neobladder is connected directly to theurethra. Some people with a neobladder are able to urinate naturally, while others may
require catheterization to empty the bladder.
What problems can occur following cystectomy?
People who have an ileal conduit or ileal pouch may have leakage of urine around thestoma. This may lead to irritation of the skin and infection at the site of the stoma.
Scar tissue ("strictures") may form around the ureters or the conduit and block theflow of urine from the kidneys. Reflux of urine into the kidney may also occur, which
increases the risk of a UTI or kidney stones.
Incontinence, or the inability to control passage of urine, may occur after a neobladderis formed. People with this problem may benefit from muscle re-training in order tocontrol urination effectively. If there is persistent leakage of urine, pressure testing of theneobladder and urethra may help decide about treatment.
Removal of portions of the small intestine sometimes causes abnormal levels ofchemicals and fats in the blood. These problems may result in diarrhea and/or kidneystones.
Cystectomy may also increase the risk of sexual dysfunction in both men and women.
Surgery and medications may be used to treat this complication.
What can I do if I have a problem following cystectomy?
If you have had a cystectomy, you will need life-long close follow-up by a urologist.
An enterostomal nurse ("ET nurse") can help by giving advice about skin care, appliancefitting, and supplies. The nurse can also help "troubleshoot" if there are problems withcatheterization.
When should I call my healthcare provider?
Call your healthcare provider whenever you have fever, pain in the midback or side,
blood in the urine, or severe irritation of the skin. If you perform self-catheterizationand have difficulty inserting the catheter, this is a medical emergency that needs
immediate attention. This complication may mean that the pouch has ruptured, or thatthe pouch will rupture if the reservoir cannot be drained properly. This can result inserious infection from leakage of urine into the abdomen or pelvis. If you have had a

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cystectomy, contact your healthcare provider immediately if you have vomiting or
abdominal pain. These symptoms may indicate a bowel blockage (obstruction) fromscar tissue.

Written by Patricia Shearer MD, MS, Pediatric Hematology/Oncology, Ochsner Clinic,
New Orleans, Louisiana; Michael Ritchey, MD, Pediatric Urology Associates, Phoenix,
Arizona; Fernando A. Ferrer, MD, Department of Surgery, Connecticut Children’s
Medical Center, Hartford, Connecticut; and Sheri L. Spunt, MD, Hematology/Oncology,
St. Jude Children’s Research Hospital, Memphis, Tennessee.
Reviewed by: Jill Meredith RN, BSN, OCN®, Melissa M. Hudson MD, and Joan Darling
PhD
Additional health information for childhood cancer survivors is available atwww.survivorshipguidelines.org
Note: Throughout this Health Links series, the term "childhood cancer" is used to designate pediatric cancers that may
occur during childhood, adolescence, or young adulthood. Health Links are designed to provide health information
for survivors of pediatric cancer, regardless of whether the cancer occurred during childhood, adolescence, or young
adulthood.
Disclaimer and Notice of Proprietary Rights
Introduction to Late Effects Guidelines and Health Links: The "Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers" and accompanying"Health Links" were developed by the Children’s Oncology Group as a collaborative effort of the Late Effects Committee and Nursing Discipline.
For Informational Purposes Only: The information and contents of each document or series of documents made available from by the Children’s Oncology Group relating to lateeffects of cancer treatment and care or containing the title "Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers" or the title "HealthLink", whether available in print or electronic format (including any digital format, e-mail transmission, or download from the website), shall be known hereinafter as "Informational
Content". All Informational Content is for informational purposes only. The Informational Content is not intended to substitute for medical advice, medical care, diagnosis or treatment obtained from a physician or health care provider.
To cancer patients (if children, their parents or legal guardians): Please seek the advice of a physician or other qualified health provider with any questions you may haveregarding a medical condition and do not rely on the Informational Content. The Children’s Oncology Group is a research organization and does not provide individualized
medical care or treatment.
To physicians and other healthcare providers: The Informational Content is not intended to replace your independent clinical judgment, medical advice, or to exclude
other legitimate criteria for screening, health counseling, or intervention for specific complications of childhood cancer treatment. Neither is the Informational Content intended
to exclude other reasonable alternative follow-up procedures. The Informational Content is provided as a courtesy, but not intended as a sole source of guidance inthe evaluation of childhood cancer survivors. The Children’s Oncology Group recognizes that specific patient care decisions are the prerogative of the patient, family, andhealthcare provider.
No endorsement of any specific tests, products, or procedures is made by Informational Content, the Children’s Oncology Group, or affiliated party or member of the Children’s
Oncology Group.
No Claim to Accuracy or Completeness: While the Children's Oncology Group has made every attempt to assure that the Informational Content is accurate and complete as of thedate of publication, no warranty or representation, express or implied, is made as to the accuracy, reliability, completeness, relevance, or timeliness of such Informational Content.
No Liability on Part of Children’s Oncology Group and Related Parties/ Agreement to Indemnify and Hold Harmless the Children’s Oncology Group and Related Parties:
No liability is assumed by the Children's Oncology Group or any affiliated party or member thereof for damage resulting from the use, review, or access of the Informational Content.
You agree to the following terms of indemnification: (i) "Indemnified Parties" include authors and contributors to the Informational Content, all officers, directors, representatives,
employees, agents, and members of the Children’s Oncology Group and affiliated organizations; (ii) by using, reviewing, or accessing the Informational Content, you agree, at yourown expense, to indemnify, defend and hold harmless Indemnified Parties from any and all losses, liabilities, or damages (including attorneys' fees and costs) resulting from any andall claims, causes of action, suits, proceedings, or demands related to or arising out of use, review or access of the Informational Content.
Proprietary Rights: The Informational Content is subject to protection under the copyright law and other intellectual property law in the United States and worldwide. The Children's
Oncology Group retains excursive copyright and other right, title, and interest to the Informational Content and claims all intellectual property rights available under law. You hereby agree to help the Children’s Oncology Group secure all copyright and intellectual property rights for the benefit of the Children’s Oncology Group by taking additional action
at a later time, action which could include signing consents and legal documents and limiting dissemination or reproduction of Informational Content.

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Healthy living after treatment for childhood cancer

Dental Health
Version 2.0 - 3/06

Dental Health FollowingChildhood Cancer Treatment
Treatment for cancer during childhood often increases the risk for dental problems. Asa childhood cancer survivor, it is important for you to understand the reasons why
dental care is especially important for maintaining your health.
What are the risk factors for dental problems after childhood cancer treatment?
Treatment with chemotherapy before your permanent teeth were fully formed,
especially if you were younger than 5 years old at the time of your treatment.
 Radiation that included the mouth and/or salivary glands

What dental problems can occur following treatment for cancer in childhood?
Problems that may be a result of chemotherapy during childhood include: Increased risk for cavities
 Shortening or thinning of the roots of the teeth
 Absence of teeth or roots
 Problems with development of tooth enamel resulting in white or discoloredpatches on the teeth, grooves and pits in the teeth, and/or easy staining of theteeth

Because teeth develop slowly, these problems are more likely to develop in people who
received chemotherapy over a long period of time (several years) during childhood.
Problems that may be a result of radiation to the mouth and/or salivary glands
include: Increased risk for cavities
 Shortening or thinning of the roots of the teeth
 Absence of teeth or roots Faulty development of tooth enamel resulting in white or discolored patches on
the teeth, grooves and pits in the teeth, and/or easy staining of the teeth
 Small teeth
 Early loss of teeth Baby teeth not falling out
 Problems with tooth development or delayed eruption of permanent teeth
 Increased risk of tooth sensitivity to hot and cold sensation
 Xerostomia (dry mouth due to decreased production of saliva)
 Alteration in taste

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Trismus (limited ability to fully open the mouth) Temporomandibular joint dysfunction (causing pain in front of the ears)
 Malocclusion (bite problem, such as overbite or underbite) Abnormal growth of bones of the face and neck Periodontal (gum) disease Osteoradionecrosis (problem with healing of the jawbone after dental surgery
or extraction of teeth) (see related Health Link: "Osteoradionecrosis")What can be done for these problems?
Taking care of teeth and gums is always important, and it is even more important if you
have had radiation or chemotherapy at a young age. If your gums are not healthy,
they can shrink away from your teeth, causing infection in the bone supporting theroots. This bone can dissolve away slowly, causing the teeth to become loose. Thiscondition is called periodontitis (inflammation surrounding a tooth). Periodontitis
can be prevented be proper brushing of your teeth and gums and by flossing between
your teeth at least once a day. Taking good care of your teeth and gums, combined withroutine visits to your dentist, can prevent the development of cavities and gum disease.
If your permanent teeth do not develop normally, you may need caps or crowns inorder to improve your smile and the function of your teeth. Sometimes reconstructive
surgery is needed to correct poor bone growth of the face or jaw. Radiation cansometimes make it difficult to open your mouth fully (trismus), or cause some scarringand hardening of the jaw muscles (fibrosis). Stretching exercises for the jaw may reduce
fibrosis and improve your ability to open your mouth. Your dentist will be able to instruct
you or refer you to occupational therapy to learn these exercises. If you have crookedor small teeth, this may be improved by bonding (applying a thin coating of plastic
material on the front surface of the teeth to cover any flaws). If braces are needed, yourdentist will do a panorex x-ray of the teeth to see if the teeth, roots and supportingbone are strong enough for braces. If you had high doses of radiation to the face or
mouth and you require dental surgery, you may be at increased risk of developing abone-healing problem (osteoradionecrosis) after the surgery. Your dentist should
discuss this potential problem with a radiation oncologist before any dental surgery. If
you had an allogeneic bone marrow or stem cell transplant (from a donor other thanyourself), it is important to let your dentist know, so that the dentist can check forchanges indicating chronic graft versus host disease.

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What is xerostomia and what should I do if I have it?
Dry mouth, also called "xerostomia" can occur after radiation to the head or neck. Other
problems related to xerostomia include persistent sore throat, burning sensation in themouth and gums, problems speaking, difficulty swallowing, hoarseness, or dry nasal
passages. Dryness of the mouth is a result of decreased saliva and/or thickening of
the saliva, and can lead to the development of cavities. This usually happens only withradiation doses of 40 Gy (4000 cGy/rads) or higher to the mouth and/or salivary glands.
Drinking liquids frequently and the use of artificial saliva can help relieve the symptoms
of xerostomia. Sugar-free candy stimulates salvia production. Proper brushing habits
are very important for people with xerostomia, as is limiting the intake of candy andother sweets. Your dentist may recommend application of a fluoride gel to your teeth
at least once a day. The fluoride acts on the enamel of your teeth to make it moreresistant to decay. Ask your dentist about whether you should use daily fluoride.
Should I take any special precautions when having dental work done?
Always let your dentist know if you have the following health conditions:Shunt (surgical placement of a tube to drain fluid from the brain) Limb salvage procedure (replacement of bone with a metal rod or bone graft) Leaky heart valve (this sometimes happens after radiation to the chest)In any of these situations, bacteria that normally enter the bloodstream during
dental work can result in serious infections. As a precaution against infection, if
you have any of these conditions, you should take antibiotics before any dental
work. The antibiotics should be prescribed by, or discussed with, your dentist. You
should also let your dentist know if you have had a splenectomy (surgical removal of thespleen) or if you have had high doses of radiation (40 Gy – 4000 cGy/rads or more) tothe spleen. (Also see the following related Health Links: "Splenic Precautions," "Limb
Salvage after Bone Cancer," and "Heart Problems Following Treatment for Childhood
Cancer").
What is the risk of developing oral cancer?
People who have had radiation to the head and neck during childhood, or who havechronic graft-versus-host disease after bone marrow or stem cell transplant, may beat increased risk for oral cancers. Using tobacco in any form or using alcohol in
combination with smoking greatly increases this risk. Your dentist should perform an
oral cancer screening exam during each visit.
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If you notice any of the following, notify your dentist immediately:
A sore that does not heal or that bleeds easily
 A change in the color of your mouth tissues
 A lump, thickening or rough spot in the mouth Pain, tenderness or numbness anywhere in the mouth or on the lips


Most of the time, these symptoms do not indicate any problem, but a dentist can tell ifthey are the sign of a serious problem.
What should I do to keep my teeth and mouth as healthy as possible?
Follow these recommendations (unless your dentist recommends otherwise):

See your dentist regularly at least every six months. Make sure that yourdentist knows your health history and the treatment you received. (Ask youroncologist for a summary of your treatment). Be sure that your visit includes anoral cancer screening, and be sure to notify your dentist if you notice any warning
signs of oral cancer.

Have a panorex x-ray done before dental/orthodontic procedures to evaluate
the root development of your teeth and determine if any modifications need to bemade to your dental treatment plan.



Brush your teeth at least twice a day.
 Use a fluoride-containing toothpaste to help prevent tooth decay.
 Place your brush at a slight angle toward the gum when brushing along the
gum line.
 Use a soft-bristle toothbrush, as recommended by your dentist.
 Clean all surfaces of the teeth.
 Brush your tongue to remove bacteria that can cause bad breath.

Floss your teeth once or twice a day Floss carefully between teeth because brushing alone does not remove plaquebetween teeth.
 Use a gentle touch to avoid injury to gums.
 It is normal to have a small amount of bleeding when flossing, but if the
bleeding increases or your gums are red and puffy, this may be a sign ofinfection and you should notify your dentist.



Use antibacterial, alcohol-free fluoride mouth rinses (your dentist canrecommend the best ones for you).

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Drink liquids frequently and/or use artificial saliva (available at mostpharmacies without a prescription).



Apply fluoride frequently. Your dentist may recommend a daily fluoride rinse or
gel that you can use at home after brushing, in addition to the special fluoride
application you may receive at your regular dental cleanings.

Limit sweets and carbohydrate-rich foods.

Do not use tobacco products and use alcohol only in moderation (check withyour healthcare provider to see if you should drink alcohol at all, since alcohol may
increase other problems following childhood cancer treatment).

Notify your dentist immediately if you develop any signs of infection in yourmouth or gums, such as redness, tenderness, excessive bleeding of gums, painful
teeth, and/or increased areas of sensitivity.

For more information about dental health issues following childhood cancer treatment:American Dental Association website (click on "Oral Health Topics")
www.ada.org



Patient Centers website (click on "Head and Neck")
http://www.patientcenters.com/survivors/news/reading.html

Adapted by Debbie Lafond, MS, RNCS, PNP, CPON®, Children’s National Medical
Center, Washington, D.C., from "Save Your Smile" by Melissa Hudson MD, St JudeChildren's Research Hospital, After Completion of Therapy (ACT) Clinic, used withpermission.
Reviewed by Man Wai Ng, DDS, Revonda Mosher, MS, CPNP, CPON®, Joan Darling
PhD, Louis S. Constine MD, Smita Bhatia MD, MPH, and Lisa Bashore MS, RN, CPNP,
CPON®.
.

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Dental Health
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Additional health information for childhood cancer survivors is available atwww.survivorshipguidelines.org
Note: Throughout this Health Links series, the term "childhood cancer" is used to designate pediatric cancers that may
occur during childhood, adolescence, or young adulthood. Health Links are designed to provide health information
for survivors of pediatric cancer, regardless of whether the cancer occurred during childhood, adolescence, or young
adulthood.
Disclaimer and Notice of Proprietary Rights
Introduction to Late Effects Guidelines and Health Links: The "Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers" and accompanying"Health Links" were developed by the Children’s Oncology Group as a collaborative effort of the Late Effects Committee and Nursing Discipline.
For Informational Purposes Only: The information and contents of each document or series of documents made available from by the Children’s Oncology Group relating to lateeffects of cancer treatment and care or containing the title "Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers" or the title "HealthLink", whether available in print or electronic format (including any digital format, e-mail transmission, or download from the website), shall be known hereinafter as "Informational
Content". All Informational Content is for informational purposes only. The Informational Content is not intended to substitute for medical advice, medical care, diagnosis or treatment obtained from a physician or health care provider.
To cancer patients (if children, their parents or legal guardians): Please seek the advice of a physician or other qualified health provider with any questions you may haveregarding a medical condition and do not rely on the Informational Content. The Children’s Oncology Group is a research organization and does not provide individualized
medical care or treatment.
To physicians and other healthcare providers: The Informational Content is not intended to replace your independent clinical judgment, medical advice, or to exclude
other legitimate criteria for screening, health counseling, or intervention for specific complications of childhood cancer treatment. Neither is the Informational Content intended
to exclude other reasonable alternative follow-up procedures. The Informational Content is provided as a courtesy, but not intended as a sole source of guidance inthe evaluation of childhood cancer survivors. The Children’s Oncology Group recognizes that specific patient care decisions are the prerogative of the patient, family, andhealthcare provider.
No endorsement of any specific tests, products, or procedures is made by Informational Content, the Children’s Oncology Group, or affiliated party or member of the Children’s
Oncology Group.
No Claim to Accuracy or Completeness: While the Children's Oncology Group has made every attempt to assure that the Informational Content is accurate and complete as of thedate of publication, no warranty or representation, express or implied, is made as to the accuracy, reliability, completeness, relevance, or timeliness of such Informational Content.
No Liability on Part of Children’s Oncology Group and Related Parties/ Agreement to Indemnify and Hold Harmless the Children’s Oncology Group and Related Parties:
No liability is assumed by the Children's Oncology Group or any affiliated party or member thereof for damage resulting from the use, review, or access of the Informational Content.
You agree to the following terms of indemnification: (i) "Indemnified Parties" include authors and contributors to the Informational Content, all officers, directors, representatives,
employees, agents, and members of the Children’s Oncology Group and affiliated organizations; (ii) by using, reviewing, or accessing the Informational Content, you agree, at yourown expense, to indemnify, defend and hold harmless Indemnified Parties from any and all losses, liabilities, or damages (including attorneys' fees and costs) resulting from any andall claims, causes of action, suits, proceedings, or demands related to or arising out of use, review or access of the Informational Content.
Proprietary Rights: The Informational Content is subject to protection under the copyright law and other intellectual property law in the United States and worldwide. The Children's
Oncology Group retains excursive copyright and other right, title, and interest to the Informational Content and claims all intellectual property rights available under law. You hereby agree to help the Children’s Oncology Group secure all copyright and intellectual property rights for the benefit of the Children’s Oncology Group by taking additional action
at a later time, action which could include signing consents and legal documents and limiting dissemination or reproduction of Informational Content.

Copyright 2006 © Children’s Oncology GroupAll rights reserved worldwide

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Diet and Physical Activity
Version 2.0 - 3/06

Healthy living after treatment for childhood cancer

Staying Healthy through Diet and Physical Activity
Good nutrition and regular exercise offer many benefits to childhood cancer survivors.
These include:
Promoting healing of tissues and organs damaged by cancer and its treatment
 Building strength and endurance Reducing the risk of certain types of adult cancers and other diseases
 Decreasing stress and providing a feeling of well-being
Impact of Childhood Cancer on Nutrition and Physical Activity
The effects of childhood cancer on nutrition and physical activity will be different foreach survivor. Cancer affects nutrition in a number of ways. Some survivors may havedifficulty gaining weight, while others may have problems with gaining too much weight.
Physical activity is an important factor in maintaining a healthy body weight. There aremany factors that can influence a survivor’s ability to be physically active; however,childhood cancer and its treatment should not be used as an excuse for not eating ahealthy diet or staying physically active. Many survivors, just like many people who havenever experienced cancer, have poor health habits. Now is a good time to begin making healthy choices about diet and exercise. These choices can have a positive effecton your health for many years to come.
Developing a Healthy Nutrition Plan
Suggestions for a healthy diet include:
Choose a variety of foods from all the food groups.
Use the "Steps to a Healthier You" interactive
customized guide at www.mypyramid.gov to help
develop a well-balanced diet and activity plan.
 Eat five or more servings a day of fruits andvegetables, including citrus fruits and dark-green
and deep-yellow vegetables.
 When drinking juice, choose 100% fruit orvegetable juice, and limit to about 4 ounces per day.
 Eat plenty of high-fiber foods, such as whole grain breads, rice, pasta andcereals.
 Limit refined carbohydrates, including pastries, sweetened cereals, soft drinks
and sugars.
 Decrease the amount of fat in your meals by baking, broiling or boiling foods.


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Healthy living after treatment for childhood cancer
Limit intake of red meat and substitute fish, poultry, or beans. When you eat meat,
select leaner and smaller portions.
 Limit fried and high-fat foods, such as french fries, snack chips, cheeseburgers,
and pizza
 Choose low-fat milk and dairy products.
 Avoid salt-cured, smoked, charbroiled, and pickled foods.
 Adults should limit alcoholic drinks to less than two a day for men and one forwomen.


If you need to lose weight, consult with your health care team and a nutritionist
to develop a nutrition plan. Herbal or dietary supplements should be discussed todetermine if they are truly healthy. There are several questions you should ask yourself
to make sure your nutrition plan will be effective.
Do you have a realistic, achievable weight goal?
 Does your plan include foods that you will enjoy eating for the rest of your life, notjust a few weeks or months?
 Does your plan include a variety of foods?
 Are foods on your plan easily available at your supermarket?
 Does your plan fit into your lifestyle, daily schedule and budget?
 Does your plan include lifestyle changes that will help you maintain your weightloss?
Developing a Healthy Exercise Plan
Check with your healthcare team before starting an exercise plan or taking part in new
sports and recreational activities. Your healthcare provider can make you aware of theactivities that you can safely take part in and those you should avoid.
When choosing an exercise plan, ask yourself these questions:
Do you have reasonable goals based on your present strength and endurance?
 Is the activity safe for you to perform?
 Does the plan fit into your lifestyle and schedule?
 Does the activity require special equipment or protective gear and will yourbudget cover the expense?
 Do you need to make changes in the sport or activity based on a special need?
 Do you enjoy doing the sport or activity?
Here are a few helpful suggestions when implementing your exercise plan:Start out slow. Don’t try activities that are too strenuous or put you at risk formuscle strain.
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Healthy living after treatment for childhood cancer
Begin your exercise plan with a warm-up program and end with a cool-down
activity, such as stretching and slow easy movements.
 Use correct posture when exercising.
 Exercise until you are tired, but not in pain.
 Identify the muscles you want to strengthen and choose exercises that work on
those muscles.
 Alternate exercises to work different muscles and different parts of your body.
 To avoid injury, use the right equipment and shoes.
 Avoid running, jogging, or aerobic dancing on hard surfaces such as asphalt or
concrete.
 Increase your workout by no more than 10 percent per week.
The National Cancer Institute recommends at least moderate physical activity (brisk
walking, bicycling, vacuuming, gardening) for at least 30 minutes per day on mostdays of the week. If you don’t have the time for a 30-minute session all at once, you
can break it up into three different sessions of 10 minutes each. The American Cancer
Society recommends that children and adolescents should engage in at least 60
minutes per day of moderate to vigorous physical activity (running, aerobics,
heavy yard work) at least 5 days per week. Here are some practical suggestions to
try to work physical activity into your daily schedule.
Park a good distance from your place of work and walk the extra distance eachday Set aside 30 minutes a day to take a brisk walk
 Take the stairs instead of the elevator If you have a sit-down job, get up and stretch your muscles every hour and takea walk during your lunch or break Ride a bike to work or for running errands
 If you have a dog, take him/her on a brisk walk every day Plant a garden, wash your car, mow the lawn, paint furniture, clean out the garage
and catch up on all those chores you have been meaning to do – instead ofwatching TV or playing on the computer Watch TV or read the newspaper while on a stationary bike or treadmill.
 Plan active family outings, instead of attending a movie Exercise with a friend you enjoy spending time with
 Join a sports team

Physical Activity for Survivors with Special Needs
Survivors who have special needs can take part in most activities, but the help ofa physical or occupational therapist may be needed to adapt the activity for success.
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Healthy living after treatment for childhood cancer
A social worker may be able to help find insurance coverage or other resources for
special equipment. Specialized programs for individuals with special needs,organizations and other resources are often available through your healthcare center, inyour local community, and at www.ncpad.org.

Adapted by Sharon Frierdich, RN, MS, CPNP, Pediatric Hematology/Oncology,
University of Wisconsin Children’s Hospital, Madison, WI, from "Staying Physically
Healthy, Play Safely, Play Well," St. Jude Children’s Research Hospital, used withpermission.
Reviewed by Kevin Oeffinger MD, Missy Layfield, Octavio Zavala, and Marcia Leonard
RN, PNP.

Additional health information for childhood cancer survivors is available atwww.survivorshipguidelines.org
Note: Throughout this Health Links series, the term "childhood cancer" is used to designate pediatric cancers that may
occur during childhood, adolescence, or young adulthood. Health Links are designed to provide health information
for survivors of pediatric cancer, regardless of whether the cancer occurred during childhood, adolescence, or young
adulthood.
Disclaimer and Notice of Proprietary Rights
Introduction to Late Effects Guidelines and Health Links: The "Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers" and accompanying"Health Links" were developed by the Children’s Oncology Group as a collaborative effort of the Late Effects Committee and Nursing Discipline.
For Informational Purposes Only: The information and contents of each document or series of documents made available from by the Children’s Oncology Group relating to lateeffects of cancer treatment and care or containing the title "Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers" or the title "HealthLink", whether available in print or electronic format (including any digital format, e-mail transmission, or download from the website), shall be known hereinafter as "Informational
Content". All Informational Content is for informational purposes only. The Informational Content is not intended to substitute for medical advice, medical care, diagnosis or treatment obtained from a physician or health care provider.
To cancer patients (if children, their parents or legal guardians): Please seek the advice of a physician or other qualified health provider with any questions you may haveregarding a medical condition and do not rely on the Informational Content. The Children’s Oncology Group is a research organization and does not provide individualized
medical care or treatment.
To physicians and other healthcare providers: The Informational Content is not intended to replace your independent clinical judgment, medical advice, or to exclude
other legitimate criteria for screening, health counseling, or intervention for specific complications of childhood cancer treatment. Neither is the Informational Content intended
to exclude other reasonable alternative follow-up procedures. The Informational Content is provided as a courtesy, but not intended as a sole source of guidance inthe evaluation of childhood cancer survivors. The Children’s Oncology Group recognizes that specific patient care decisions are the prerogative of the patient, family, andhealthcare provider.
No endorsement of any specific tests, products, or procedures is made by Informational Content, the Children’s Oncology Group, or affiliated party or member of the Children’s
Oncology Group.
No Claim to Accuracy or Completeness: While the Children's Oncology Group has made every attempt to assure that the Informational Content is accurate and complete as of thedate of publication, no warranty or representation, express or implied, is made as to the accuracy, reliability, completeness, relevance, or timeliness of such Informational Content.
No Liability on Part of Children’s Oncology Group and Related Parties/ Agreement to Indemnify and Hold Harmless the Children’s Oncology Group and Related Parties:
No liability is assumed by the Children's Oncology Group or any affiliated party or member thereof for damage resulting from the use, review, or access of the Informational Content.
You agree to the following terms of indemnification: (i) "Indemnified Parties" include authors and contributors to the Informational Content, all officers, directors, representatives,
employees, agents, and members of the Children’s Oncology Group and affiliated organizations; (ii) by using, reviewing, or accessing the Informational Content, you agree, at yourown expense, to indemnify, defend and hold harmless Indemnified Parties from any and all losses, liabilities, or damages (including attorneys' fees and costs) resulting from any andall claims, causes of action, suits, proceedings, or demands related to or arising out of use, review or access of the Informational Content.
Proprietary Rights: The Informational Content is subject to protection under the copyright law and other intellectual property law in the United States and worldwide. The Children's
Oncology Group retains excursive copyright and other right, title, and interest to the Informational Content and claims all intellectual property rights available under law. You hereby agree to help the Children’s Oncology Group secure all copyright and intellectual property rights for the benefit of the Children’s Oncology Group by taking additional action
at a later time, action which could include signing consents and legal documents and limiting dissemination or reproduction of Informational Content.

Copyright 2006 © Children’s Oncology GroupAll rights reserved worldwide

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Healthy living after treatment for childhood cancer

Educational Issues
Version 2.0 - 3/06

Educational Issues Following
Treatment for Childhood Cancer
Treatment for cancer during childhood or adolescence may affect educational
progress due to prolonged absences or reduced energy levels that frequently occur
during treatment. In addition, some types of cancer may require therapy to control
or prevent spread of the disease to the brain and/or spinal cord (central nervous
system). This therapy can sometimes affect memory and learning abilities. Parents
and teachers should be aware of potential educational problems that may be related tocancer treatment so that children and teens at risk can be watched closely and given
extra help if the need arises.
What increases the risk of educational problems?
Factors that may place children and teens at increased risk for difficulties in school
include:Diagnosis of cancer at a very young age
Numerous or prolonged school absences A history of learning problems before being diagnosed with cancer
 Cancer treatment that results in reduced energy levels
 Cancer treatment that affects hearing or vision
 Cancer treatment that results in physical disabilities
 Cancer therapy that includes treatment to the central nervous system (see below).


Are children and teens with certain types of cancer at higher risk of developing
educational difficulties?
Yes, children and teens with the types of cancer listed below are more likely to havereceived treatments that may affect learning and memory. Since treatments for thesetypes of cancer vary widely, not everyone who was treated for these cancers is atincreased risk.
Brain tumors Tumors involving the eye or ear
 Acute lymphoblastic leukemia (ALL) Non-Hodgkin’s lymphoma (NHL)What types of treatment place children and teens at higher risk for learning andmemory problems?


Methotrexate – if given in high doses intravenously (IV) or injected into the spinal
fluid (intrathecal – IT or intraommaya - IO)
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Cytarabine – if given in high doses intravenously (IV) Surgery involving the brain
 Radiation to any of the following areas:- Brain (cranial)- Ear/infratemporal region (midfacial area behind the cheekbones)- Total body (TBI) Cisplatin or carboplatin (may affect hearing)

What testing is recommended?
Any young person who has had any of the above cancer treatments, or who ishaving difficulties in school, should undergo a specialized evaluation by a pediatric
psychologist (neuropsychological testing) at the time of entry into long-term follow-up.
This type of testing will measure IQ and school based skills, along with more detailed
information about how the child processes and organizes information.
Even if the initial neuropsychological evaluation is normal, it is important for parents
and teachers to remain watchful. Further neuropsychological evaluations may benecessary if the child or teen begins having trouble in school or develops any of the
problems listed below. In addition, repeat testing is often recommended at times when
academic challenges are more likely to occur, such as at entry into elementary school,
middle school, high school, and during pre-college planning.
What learning problems may occur?
The brain is a very complex structure that continues to grow and develop throughout
childhood and adolescence. Some problems may not become apparent until years after
therapy is completed. Common problems areas include:
Handwriting
Spelling
 Reading Vocabulary Math Concentration
 Attention span
 Ability to complete tasks on time Memory Processing (ability to complete assignments that require multiple steps)
 Planning

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Organization
 Problem-solving
 Social skillsWhat can be done to help with learning problems?
If a problem is identified, special accommodations or services can be requested tohelp maximize the student’s learning potential. The first step is usually to schedule ameeting with the school in order to develop a specialized educational plan. Examples
of strategies that are often helpful for children and teens with educational problems
related to cancer treatment include:
Seating near the front of the classroom
Minimizing the amount of written work required Use of tape-recorded textbooks and lectures
 Use of a computer keyboard instead of handwriting Use of a calculator for math Modification of test requirements (extra time, oral instead of written exams)
 Assignment of a classroom aide
 Extra help with math, spelling, reading, and organizational skills
 Access to an elevator Extra time for transition between classes
 Duplicate set of textbooks to keep at home

What laws protect the rights of students who have undergone treatment forcancer?
In the United States, there are three public laws that protect the rights of students witheducational problems related to cancer treatment. These laws are:
The Rehabilitation Act of 1973 – Section 504
This legislation provides accommodations for students with a "physical or mental
impairment which substantially limits one or more major life activities," or students
who have "a record of such impairment", or who are "perceived as having suchan impairment" (The Rehabilitation Act, 1973). Qualifying conditions include chronic
illnesses such as cancer, as well as many other disabilities, including hearing problems,
vision problems, learning disabilities, speech disorders, and orthopedic handicaps. All
childhood cancer survivors in the United States are eligible for accommodations under
this law, and all educational institutions receiving federal funding (including colleges anduniversities) are required to comply. Accommodations may include modifications in the

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Educational Issues
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curriculum (such as allowing the use of a calculator and extra time for assignments or
test-taking) and the environment (such as seating near the front of the classroom orallowing extra time between classes).
The Individuals with Disabilities Education Act (IDEA)The IDEA legislation (PL 105-17) requires that public schools provide "free andappropriate education in the least restrictive environment" for disabled students
between the ages of 3 and 21 years of age. In order to qualify for special education
services under IDEA, the student must meet qualifications under at least one
disability outlined in the law - those that most commonly apply to students treated forcancer include "specific learning disability," "traumatic brain injury," or "other healthimpairment." In order to access services under the IDEA legislation, parents must
initiate the process by requesting that the student be evaluated for an "Individualized
Education Plan" or IEP. The student will then undergo an assessment process todetermine what assistance is required. A conference is then held to discuss theresults of the evaluation and, if the student qualifies, to determine an individualized plan
to meet the identified specialized educational needs. Services available under the
IDEA legislation include tutoring, specialized classroom placements (such as aresource room), psychological services, adaptive physical education, physical,
occupational and speech/language therapy, and transportation services. All services
and accommodations required by the student should be specified in the IEP (thewritten document describing the special education program). The IEP should be
reviewed and updated on an annual basis to assure that it continues to meet thestudent’s educational needs.
The Americans with Disabilities Act (ADA)The ADA law (PL 101-336) protects against discrimination in employment, transportation, communication, government and public accommodations for people withdisabilities. It guarantees equal access to public spaces, event, and opportunities andmay be particularly helpful for students seeking higher education or employment.
Where can I get more information?
Additional information is available from the National Information Center for Children andYouth with Disabilities (phone: 1-800-695-0285; website: www.nichcy.org).
Candlelighters Childhood Cancer Foundation, for the free publication: Educating theChild with Cancer, a Guide for Patents and Teachers (phone: 1-800-366-2223; website:www.candlelighters.org.)

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Written by Wendy Landier, RN, MSN, CPNP, CPON®, Survivorship Clinic, City of Hope National
Medical Center, Duarte, CA.
Reviewed by: Debra L. Friedman MD, Melissa M. Hudson MD, Julie Blatt MD, Joan Darling
PhD, and Scott Hawkins LMSW.

Additional health information for childhood cancer survivors is available atwww.survivorshipguidelines.org
Note: Throughout this Health Links series, the term "childhood cancer" is used to designate pediatric cancers that may
occur during childhood, adolescence, or young adulthood. Health Links are designed to provide health information
for survivors of pediatric cancer, regardless of whether the cancer occurred during childhood, adolescence, or young
adulthood.
Disclaimer and Notice of Proprietary Rights
Introduction to Late Effects Guidelines and Health Links: The "Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers" and accompanying"Health Links" were developed by the Children’s Oncology Group as a collaborative effort of the Late Effects Committee and Nursing Discipline.
For Informational Purposes Only: The information and contents of each document or series of documents made available from by the Children’s Oncology Group relating to lateeffects of cancer treatment and care or containing the title "Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers" or the title "HealthLink", whether available in print or electronic format (including any digital format, e-mail transmission, or download from the website), shall be known hereinafter as "Informational
Content". All Informational Content is for informational purposes only. The Informational Content is not intended to substitute for medical advice, medical care, diagnosis or treatment obtained from a physician or health care provider.
To cancer patients (if children, their parents or legal guardians): Please seek the advice of a physician or other qualified health provider with any questions you may haveregarding a medical condition and do not rely on the Informational Content. The Children’s Oncology Group is a research organization and does not provide individualized
medical care or treatment.
To physicians and other healthcare providers: The Informational Content is not intended to replace your independent clinical judgment, medical advice, or to exclude
other legitimate criteria for screening, health counseling, or intervention for specific complications of childhood cancer treatment. Neither is the Informational Content intended
to exclude other reasonable alternative follow-up procedures. The Informational Content is provided as a courtesy, but not intended as a sole source of guidance inthe evaluation of childhood cancer survivors. The Children’s Oncology Group recognizes that specific patient care decisions are the prerogative of the patient, family, andhealthcare provider.
No endorsement of any specific tests, products, or procedures is made by Informational Content, the Children’s Oncology Group, or affiliated party or member of the Children’s
Oncology Group.
No Claim to Accuracy or Completeness: While the Children's Oncology Group has made every attempt to assure that the Informational Content is accurate and complete as of thedate of publication, no warranty or representation, express or implied, is made as to the accuracy, reliability, completeness, relevance, or timeliness of such Informational Content.
No Liability on Part of Children’s Oncology Group and Related Parties/ Agreement to Indemnify and Hold Harmless the Children’s Oncology Group and Related Parties:
No liability is assumed by the Children's Oncology Group or any affiliated party or member thereof for damage resulting from the use, review, or access of the Informational Content.
You agree to the following terms of indemnification: (i) "Indemnified Parties" include authors and contributors to the Informational Content, all officers, directors, representatives,
employees, agents, and members of the Children’s Oncology Group and affiliated organizations; (ii) by using, reviewing, or accessing the Informational Content, you agree, at yourown expense, to indemnify, defend and hold harmless Indemnified Parties from any and all losses, liabilities, or damages (including attorneys' fees and costs) resulting from any andall claims, causes of action, suits, proceedings, or demands related to or arising out of use, review or access of the Informational Content.
Proprietary Rights: The Informational Content is subject to protection under the copyright law and other intellectual property law in the United States and worldwide. The Children's
Oncology Group retains excursive copyright and other right, title, and interest to the Informational Content and claims all intellectual property rights available under law. You hereby agree to help the Children’s Oncology Group secure all copyright and intellectual property rights for the benefit of the Children’s Oncology Group by taking additional action
at a later time, action which could include signing consents and legal documents and limiting dissemination or reproduction of Informational Content.

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Emotional Issues after Childhood Cancer
The Cancer Experience
Diagnosis and Treatment
Diagnosis and treatment are difficult times for children with cancer and their families.
During diagnosis, children have tests and procedures that are new, painful andoften scary. For parents, it is the anxiety of waiting for the results of these tests andprocedures that can be the worst part of this time. Learning the diagnosis can be a relief,
especially when effective treatments are available. These treatments, though, can be
unpleasant for children to have and upsetting for families to watch or give. Tests
and procedures are repeated during treatment to find out if the treatment is helping
or should be changed. Children with cancer and their parents are frequently at thehospital, sometimes away from other family, friends, home, work or school for long
periods of time. Parents worry about whether or not their child’s cancer will be cured,
how to minimize their child’s suffering, and how to make the most of life. Brothers andsisters also worry about, and are sometimes jealous of, the child with cancer. Childhood
cancer survivors and their siblings can be concerned about their parents, and keep
worries and feelings to themselves to try to protect their parents. As a result, children
with cancer, their parents and their siblings can feel angry, lonely, sad and afraid during
treatment. Periods of anxiety and depression can occur.
After Treatment Ends
For survivors and their families, the end of treatment can bring new feelings as
they come to know the good (and sometimes not so good) outcomes of successfultreatment. During treatment, people tend to be concerned with getting through the
day-to-day. It is after treatment that people can begin to think about and come to termswith their experience. People can have a range of feelings after treatment ends, and theblend of feelings can be as unique as each person. Survivors and their families often
fear that the original cancer will return. Regular testing for recurrent cancer orlate effects, and even just talking about possible late effects can cause stressful
feelings. The diagnosis of a late effect related to cancer treatment or a new healthproblem unrelated to childhood cancer can also be sources of distress. Anniversaries ofcancer events, such as the date of diagnosis or end of treatment, and life changes suchas school entry or the normalization of peer relationships can bring on feelings that
include relief and happiness, sadness about the loss of a regular childhood, and guilt
over having survived when others did not. Some survivors may feel vulnerable becauseof their cancer experience, and can be concerned about their health and act with

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caution. Parents of childhood cancer survivors very much want to protect all of
their children from harm. These protective feelings can increase usual tensions between
parents and teenagers over issues related to growing independence, especially inmatters that can affect health. Other teens who have had cancer believe that, having
survived cancer, they can do anything - and this makes them feel invincible. Thesefeelings can lead some survivors to undertake difficult studies, work or hobbies. The
same feelings can lead other survivors to take part in unhealthy or risky behaviors.
Some Reactions to the Stresses of Survivorship
For the most part, childhood cancer survivors and their family members respond wellto the stresses of survivorship. Sometimes though, physical problems or otherstresses related to childhood cancer and everyday life can sometimes lead to intensely
distressing emotions that need medical attention. Some survivors, and their family
members, can experience periods of high anxiety that may or may not be triggeredby reminders of the upsetting aspects of treatment. They may develop three typesof symptoms typically seen in people with posttraumatic stress disorder (PTSD),
including (1) unwanted recall of unpleasant memories of cancer, (2) physical oremotional overreactions, and (3) going out of the way to avoid reminders of cancer.
For the most part, childhood cancer survivors and their family members do notdevelop all three types of symptoms and PTSD. Yet one or two of these symptoms cannonetheless get in the way of relationships, school, work and other key areas of daily
life in survivorship.
Personal growth can be another reaction to the stresses of survivorship. After yearsof living with childhood cancer, some survivors and their family members may findthat they have undergone meaningful and beneficial changes in themselves, theirrelationships with other people, and their values as a result of their experiences. It
does not mean that these survivors would choose to have had cancer, but that they
have been able to find some positive changes in their lives as a result of surviving thatstressful experience. Experiencing these positive changes is sometimes referred to as
posttraumatic growth.
Risk Factors
Several factors can affect the development of depression and anxiety with symptoms of
posttraumatic stress after diagnosis and treatment of childhood cancer, including:- Female gender- Adolescent or young adult age- Prior trauma
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Mental health or learning problems before childhood cancer
Low levels of social support
Parental history of depression, anxiety, or PTSD
Cancer of the brain or spine (central nervous system - CNS)
Cancer treatment to the CNS (radiation to head, chemotherapy into spinal fluid)
Treatment with Hematopoietic Cell Transplant (bone marrow or stem celltransplant)

When to Seek Help
People with distress that (1) lasts two weeks or more, and/or (2) interferes with theirability to do key home, school or work tasks, should call their healthcare provider todiscuss the need for a referral to a mental health professional. Because physicalhealth problems can cause these same symptoms, a through check-up by your primary
healthcare professional is recommended if they occur. Some possible signs that help isneeded can include:-

Changes in appetite and weight
Crying easily or being unable to cry
Constant tiredness and low energy level
Sleeping a lot
Not sleeping well
Feeling hopeless; thoughts of death, escape, suicide
Increased irritability
Decreased interest in activities that had been pleasurable in the past
Unwanted recall of painful aspects of cancer
Feeling extremely fearful, upset or angry when thinking about cancer
Physical reactions (rapid heart rate, shortness of breath, nausea) when thinking
about cancer- Avoiding health care visits- Refusing to talk about cancer
Share Your Concerns with Your Healthcare Provider
If you experience distress, discuss it with your primary health care provider or childhood
cancer specialist. Your distress may be related to your cancer experience, worries
about late effects, or other events in your life. In any case, there is treatment. Talking
with others about your fears and worries is a first step in gaining control over them. In
addition to receiving help from a health care provider, some people also find support
through support groups, participation in activities at their place of worship, or theirsense of spirituality. Support can help survivors and their families manage difficulties in
useful ways.
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Treatment Options
Treatments for depression, anxiety and posttraumatic stress symptoms include
counseling in group or individual sessions and medication. Medication usually works in
combination with some form of counseling. Mental health professionals (including
mental health nurse practitioners, psychiatrists, psychologists, and social workers)
provide treatment for depression and anxiety in a variety of community settings. Your
primary healthcare provider can help you find a suitable mental health professional inyour community.
Resources
Support is available to childhood cancer survivors and their families who have anxiety
and depression after treatment. These are just a few of the many resources available:
American Cancer Society (www.cancer.org)
This site provides web-based support network, other programs and services, andstories of hope for cancer survivors and their families.
American Psychiatric Association (www.healthyminds.org)
This site provides guidelines for choosing a psychiatrist.
The Anxiety Disorders Association of America (www.adaa.org)
This site provides information that can help people with anxiety disorder find treatment
and develop self-help skills.
Lance Armstrong Foundation (www.laf.org)
This site provides information and tools through this site that people living with cancer
can use to "live strong".
Candlelighters Childhood Cancer Foundation (www.candlelighters.org)
This site offers education, support, service, and advocacy for childhood cancer
survivors, their families and the professionals who care for them.
Cure Search (www.curesearch.org)
This site provides parents and families with information related to specific cancer
type, treatment stage and age group as well as tips on navigating the health caresystem, getting and giving support, and maintaining a healthy lifestyle.

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National Institute of Mental Health (www.nimh.nih.gov)
This site provides general information about anxiety or depression, available treatments,
finding a mental health provider, and access to research reports and other relevant
information. See these specific areas of the web site:www.nimh.nih.gov/healthinformation/anxietymenu.cfm
www.nimh.nih.gov/healthinformation/depressionmenu.cfm
Patient Centered Guides (www.patientcenters.com/survivors)
This site provides a list of follow-up clinics for childhood cancer survivors and articles
related to psychosocial aspects of survivorship.

Revised by: Sheila Judge Santacroce, PhD, APRN, CPNP, Yale University School of
Nursing, New Haven, CT. Originally adapted by Debra Eshelman, RN, MSN, CPNP, Afterthe Cancer Experience (ACE) Pediatric and Young Adult Survivor Programs, Children’s
Medical Center of Dallas and the University of Texas Southwestern Medical Center,
Dallas, TX, from "Dealing with Emotions after Childhood Illness" by Melissa Hudson MD,
After Completion of therapy (ACT) Clinic, St. Jude Children’s Research Hospital,
Memphis, TN.
Reviewed by: Joe Don Cavender, MSN, RN, CPNP, Daniel Armstrong PhD, Joan Darling
PhD, Catherine L. Woodman MD, Scott Hawkins LMSW, and Octavio Zavala.

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Additional health information for childhood cancer survivors is available atwww.survivorshipguidelines.org
Note: Throughout this Health Links series, the term "childhood cancer" is used to designate pediatric cancers that may
occur during childhood, adolescence, or young adulthood. Health Links are designed to provide health information
for survivors of pediatric cancer, regardless of whether the cancer occurred during childhood, adolescence, or young
adulthood.
Disclaimer and Notice of Proprietary Rights
Introduction to Late Effects Guidelines and Health Links: The "Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers" and accompanying"Health Links" were developed by the Children’s Oncology Group as a collaborative effort of the Late Effects Committee and Nursing Discipline.
For Informational Purposes Only: The information and contents of each document or series of documents made available from by the Children’s Oncology Group relating to lateeffects of cancer treatment and care or containing the title "Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers" or the title "HealthLink", whether available in print or electronic format (including any digital format, e-mail transmission, or download from the website), shall be known hereinafter as "Informational
Content". All Informational Content is for informational purposes only. The Informational Content is not intended to substitute for medical advice, medical care, diagnosis or treatment obtained from a physician or health care provider.
To cancer patients (if children, their parents or legal guardians): Please seek the advice of a physician or other qualified health provider with any questions you may haveregarding a medical condition and do not rely on the Informational Content. The Children’s Oncology Group is a research organization and does not provide individualized
medical care or treatment.
To physicians and other healthcare providers: The Informational Content is not intended to replace your independent clinical judgment, medical advice, or to exclude
other legitimate criteria for screening, health counseling, or intervention for specific complications of childhood cancer treatment. Neither is the Informational Content intended
to exclude other reasonable alternative follow-up procedures. The Informational Content is provided as a courtesy, but not intended as a sole source of guidance inthe evaluation of childhood cancer survivors. The Children’s Oncology Group recognizes that specific patient care decisions are the prerogative of the patient, family, andhealthcare provider.
No endorsement of any specific tests, products, or procedures is made by Informational Content, the Children’s Oncology Group, or affiliated party or member of the Children’s
Oncology Group.
No Claim to Accuracy or Completeness: While the Children's Oncology Group has made every attempt to assure that the Informational Content is accurate and complete as of thedate of publication, no warranty or representation, express or implied, is made as to the accuracy, reliability, completeness, relevance, or timeliness of such Informational Content.
No Liability on Part of Children’s Oncology Group and Related Parties/ Agreement to Indemnify and Hold Harmless the Children’s Oncology Group and Related Parties:
No liability is assumed by the Children's Oncology Group or any affiliated party or member thereof for damage resulting from the use, review, or access of the Informational Content.
You agree to the following terms of indemnification: (i) "Indemnified Parties" include authors and contributors to the Informational Content, all officers, directors, representatives,
employees, agents, and members of the Children’s Oncology Group and affiliated organizations; (ii) by using, reviewing, or accessing the Informational Content, you agree, at yourown expense, to indemnify, defend and hold harmless Indemnified Parties from any and all losses, liabilities, or damages (including attorneys' fees and costs) resulting from any andall claims, causes of action, suits, proceedings, or demands related to or arising out of use, review or access of the Informational Content.
Proprietary Rights: The Informational Content is subject to protection under the copyright law and other intellectual property law in the United States and worldwide. The Children's
Oncology Group retains excursive copyright and other right, title, and interest to the Informational Content and claims all intellectual property rights available under law. You hereby agree to help the Children’s Oncology Group secure all copyright and intellectual property rights for the benefit of the Children’s Oncology Group by taking additional action
at a later time, action which could include signing consents and legal documents and limiting dissemination or reproduction of Informational Content.

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Keeping Your Eyes Healthy
after Treatment for Childhood Cancer
High doses of radiation to the brain, eye, or eye socket (orbit) during treatment forchildhood cancer can have a long-lasting affect on the eyes. Radioiodine treatment andchronic graft-versus-host disease (an immune response that can develop after bonemarrow or stem cell transplant) can also affect the eyes. Because vision can have asignificant impact on daily living, it is important for survivors who received thesetreatments to have their eyes checked regularly.
How do the eyes work?
The eyes are remarkable organs, allowing
light to be converted into impulses thatare transmitted to the brain, where images
are perceived. The eyes are located in thearea of the skull known as the orbit or eye
socket. A thin layer of tissue called the
conjunctiva covers and protects the eye
and eyelids. Tears are produced in the
lacrimal gland, located in the outer cornerof the eye socket, above the eyeball. Tears
flow over the eye, providing lubrication,and drain into a tiny canal at the innercorner of the eye, called the lacrimal duct.
Light enters the eye through a clear layer oftissue known as the cornea. The cornea
bends and focuses the light, and sends it
through the opening of the eye known as
the pupil. The pupil controls how muchlight enters the eye. Behind the pupil is thelens of the eye, which focuses the lightonto the retina, the membrane along the back wall of the eye. The nerve cells in theretina change the light into electrical impulses and send them through the optic
nerve to the brain, where the image is perceived.
What eye problems can develop following treatment for childhood cancer?
Cataracts: Clouding of the lens of the eye. When this happens, light cannot passthrough the lens easily. Common symptoms of cataracts include painless blurring of
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vision, sensitivity to light and glare, double vision in one eye, poor night vision, fading or
yellowing of colors, and the need for frequent changes in glasses or contact lensprescriptions (see related Health Link: Cataracts).
Xerophthalmia: Dry eyes resulting from decreased tear production due to radiation or
chronic graft-versus-host disease. Symptoms include pain at the surface of the eye andlight sensitivity.
Lacrimal duct atrophy: Shrinking of the lacrimal duct, which drains tears from the eye.
Lacrimal duct atrophy can result in problems with increased tearing. This can be causedby radiation to be eye or orbit, or by radioiodine (I-131) therapy given for treatment of
thyroid cancer.
Other eye problems:
The following eye problems are less common and are usually seen only in survivors who
had higher-dose radiation treatments directed at the eye or orbit:
Orbital hypoplasia: Underdevelopment of the eye and surrounding tissues, caused byradiation to the eye or orbit. This can result in a small eye and orbit (orbital hypoplasia).
Enophthalmos: Sunken eyeball within the orbit as a result of radiation.
Keratitis: Inflammation of the cornea (the clear, outer surface of the eye). This can cause
pain at the surface of the eye and light sensitivity.
Telangiectasias: Enlargement of blood vessels in the white part of the eye. These do
not usually cause any symptoms, but are sometimes bothersome because of theirappearance.
Retinopathy: Damage to the retina (the back surface of the eye where visual
information is passed from the eye to the brain). Painless vision loss is the major
symptom of retinopathy.
Maculopathy: Damage to the macula (area of central vision within the retina), which
may result in blurred vision.
Optic chiasm neuropathy: Damage to the nerves that send visual information from theeye to the brain. This can result in vision loss.

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Papillopathy: Swelling of the optic disc (area where the optic nerve enters the eye).
Glaucoma: Increased pressure within the eye. This can damage the optic nerve andresult in vision loss.
What cancer therapies increase the risk of developing these eye complications?
Radiation therapy at doses of 30 Gy (3000 cGy/rads) or higher to the following
areas increases the risk of treatment-related eye problems:- Eye- Orbits- Brain (cranial) Other factors that may increase the risk for developing certain eye problems
include:- Radioiodine (I-131) treatment for thyroid cancer (increased risk for lacrimal
duct atrophy)- Chronic graft versus host disease following bone marrow, cord blood, or
stem cell transplant (increased risk for xerophthalmia)- Diabetes mellitus (increased risk for problems involving the retina and optic
nerve)- High blood pressure (increased risk of optic chiasm neuropathy)- Frequent exposure to sunlight (increased risk for cataracts)- Certain chemotherapy drugs, such as, actinomycin-D and doxorubicin, which
can increase the risk of eye problems when given together with radiation.
What monitoring is recommended?


Evaluation by an ophthalmologist at least once a year is recommended for any
one who:- Had a tumor involving the eye- Had radiation to the brain, eye, or orbit at doses of 30 Gy (3000 cGy) or higher- Has graft versus host disease (as a result of bone marrow, cord blood, or stem
cell transplant)
Note: An ophthalmologist is a medical doctor (MD or DO) who specializes in
eye problems – this is different from a doctor of optometry (OD), who is also avision specialist but not a medical doctor. Examination by an ophthalmologist
should include vision screening, examination for cataracts, and a full examination of the internal structures of the eye. People who develop vision problems
should be followed regularly by an ophthalmologist.

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Evaluation by an ocularist (a trained person who makes and fits artificial eyes) atleast once a year is recommended for anyone who has had:
- An eye removed because of cancer treatment and/or complications related totreatment- An artificial eye (prosthesis) that does not fit well
 Evaluation by an ophthalmologist is recommended on an as-needed basis forpeople who had Radioiodine (I-131) treatment, if they develop excessive tearing.


If you develop any of the following symptoms, seek prompt medical evaluation. In
some cases, referral to an ophthalmologist may be needed:
Blurry vision
Double vision
 Blind spots
 Sensitivity to light Poor night vision Persistent irritation of surface of eye or eyelids
 Excessive tearing/watering of eyes
 Pain within the eye Dry eyesHow are eye problems treated?
Cataracts: Not all cataracts need treatment. In many cases, an ophthalmologist may
monitor the vision closely over many years, and will recommend treatment if and when
it becomes necessary. The only treatment for cataracts is surgical removal of the lensand replacement with an artificial lens. Today, cataract surgery is a low-risk procedurethat is performed on an outpatient basis and works well in restoring vision.
Orbital hypoplasia: Usually no treatment is needed for orbital hypoplasia. In severecases, rebuilding of the bones around the eye may be possible.
Enophthalmos: Plastic surgery can be done to build up the orbit.
Lacrimal duct atrophy: A surgical procedure to widen the tear drainage system can be
performed if heavy tearing is a significant problem.
Xerophthalmia: Treatment of dry eye includes the frequent use of artificial tears (eyedrops) or ointments to moisten the surface of the eye. In severe cases, the tear drainage
system can be blocked by surgery to reduce the drainage of tears from the eye.
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Keratitis: The frequent use of artificial tears (eye drops) or ointments to moisten thesurface of the eye is recommended. Patching the affected eye during sleep may also
promote healing. Keratitis caused by infection is treated with antibiotic eye drops orointment. Rarely, surgical replacement (transplant) of the cornea is necessary.
Telangiectasias: No treatment is necessary.
Retinopathy and maculopathy: Retinopathy may require laser or photocoagulation(heat) treatment of the retina. Rarely, surgery to remove the eye is necessary in severecases.
Optic chiasm neuropathy: No treatment available.
What can be done if there is impaired vision?
If impaired vision is detected, it is important to follow the recommendations of yourophthalmologist regarding treatment. If vision is not correctable, services are available
in most communities to assist people with visual impairments.
In addition, in the United States, services are available for people under 22 years ofage through the local public school district or referral agencies (available underthe Individuals with Disabilities Education Act, PL 105-17). Sometimes special
accommodations, such as seating in the front of the classroom are all that is needed,
but this usually requires that the parent request an Individualized Education Plan (IEP)
for the child through the school district (see related Health Link: "Educational Issues
Following Treatment for Childhood Cancer").
The Americans with Disabilities Act (ADA, PL 101-336) guarantees people with visual
impairment equal access to public events, spaces, and opportunities.
How can I protect my vision?
It’s important to protect your eyes whether or not you have treatment-related eye
disorders. Precautions you can take include:
Wear sunglasses with UV protection when in bright sunlight.
When participating in sports, be sure to select protective eyewear that is
appropriate for the sport. Eyewear worn for sports should be properly fitted byan eye care professional.
 Avoid toys with sharp, protruding, or projectile parts.
 Never play with fireworks or sparklers of any kind to avoid accidental injury.
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Be careful when working with hazardous household chemicals.
 Wear protective eyewear when using a lawnmower, power trimmer, or edger, andwhen working with dangerous equipment in the workshop.
 If you do experience an eye injury, seek medical attention promptly.


Written by Teresa Sweeney RN, MSN, CPNP, After Completion of Therapy (ACT) Clinic,
St. Jude Children’s Research Hospital, Memphis, TN.
Reviewed by Julie Blatt MD, Debra Friedman MD, Melissa M. Hudson MD, Revonda
Mosher RN, MSN, CPNP, CPON®, and Lise Yasui.
Illustrated by Devika Bhatia.

Additional health information for childhood cancer survivors is available atwww.survivorshipguidelines.org
Note: Throughout this Health Links series, the term "childhood cancer" is used to designate pediatric cancers that may
occur during childhood, adolescence, or young adulthood. Health Links are designed to provide health information
for survivors of pediatric cancer, regardless of whether the cancer occurred during childhood, adolescence, or young
adulthood.
Disclaimer and Notice of Proprietary Rights
Introduction to Late Effects Guidelines and Health Links: The "Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers" and accompanying"Health Links" were developed by the Children’s Oncology Group as a collaborative effort of the Late Effects Committee and Nursing Discipline.
For Informational Purposes Only: The information and contents of each document or series of documents made available from by the Children’s Oncology Group relating to lateeffects of cancer treatment and care or containing the title "Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers" or the title "HealthLink", whether available in print or electronic format (including any digital format, e-mail transmission, or download from the website), shall be known hereinafter as "Informational
Content". All Informational Content is for informational purposes only. The Informational Content is not intended to substitute for medical advice, medical care, diagnosis or treatment obtained from a physician or health care provider.
To cancer patients (if children, their parents or legal guardians): Please seek the advice of a physician or other qualified health provider with any questions you may haveregarding a medical condition and do not rely on the Informational Content. The Children’s Oncology Group is a research organization and does not provide individualized
medical care or treatment.
To physicians and other healthcare providers: The Informational Content is not intended to replace your independent clinical judgment, medical advice, or to exclude
other legitimate criteria for screening, health counseling, or intervention for specific complications of childhood cancer treatment. Neither is the Informational Content intended
to exclude other reasonable alternative follow-up procedures. The Informational Content is provided as a courtesy, but not intended as a sole source of guidance inthe evaluation of childhood cancer survivors. The Children’s Oncology Group recognizes that specific patient care decisions are the prerogative of the patient, family, andhealthcare provider.
No endorsement of any specific tests, products, or procedures is made by Informational Content, the Children’s Oncology Group, or affiliated party or member of the Children’s
Oncology Group.
No Claim to Accuracy or Completeness: While the Children's Oncology Group has made every attempt to assure that the Informational Content is accurate and complete as of thedate of publication, no warranty or representation, express or implied, is made as to the accuracy, reliability, completeness, relevance, or timeliness of such Informational Content.
No Liability on Part of Children’s Oncology Group and Related Parties/ Agreement to Indemnify and Hold Harmless the Children’s Oncology Group and Related Parties:
No liability is assumed by the Children's Oncology Group or any affiliated party or member thereof for damage resulting from the use, review, or access of the Informational Content.
You agree to the following terms of indemnification: (i) "Indemnified Parties" include authors and contributors to the Informational Content, all officers, directors, representatives,
employees, agents, and members of the Children’s Oncology Group and affiliated organizations; (ii) by using, reviewing, or accessing the Informational Content, you agree, at yourown expense, to indemnify, defend and hold harmless Indemnified Parties from any and all losses, liabilities, or damages (including attorneys' fees and costs) resulting from any andall claims, causes of action, suits, proceedings, or demands related to or arising out of use, review or access of the Informational Content.
Proprietary Rights: The Informational Content is subject to protection under the copyright law and other intellectual property law in the United States and worldwide. The Children's
Oncology Group retains excursive copyright and other right, title, and interest to the Informational Content and claims all intellectual property rights available under law. You hereby agree to help the Children’s Oncology Group secure all copyright and intellectual property rights for the benefit of the Children’s Oncology Group by taking additional action
at a later time, action which could include signing consents and legal documents and limiting dissemination or reproduction of Informational Content.

Copyright 2006 © Children’s Oncology GroupAll rights reserved worldwide

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Female Health Issues
after Treatment for Childhood Cancer
The effects of childhood cancer therapy on female reproductive function depend on
many factors, including the girl’s age at the time of cancer therapy, the specific type andlocation of the cancer, and the treatment that was given. It is important to understandhow the ovaries and female reproductive organs function and how they may be affectedby therapy given to treat cancer during childhood.
The female reproductive system
At birth, the ovaries contain all the eggs they will
ever have. When the time comes to begin puberty, the pituitary gland in the brain signals theovaries by releasing two hormones (FSH and
LH). The ovaries secrete the female hormones estrogen and progesterone, which arenecessary for reproductive function. Normally,
during a monthly menstrual cycle, one egg
matures and is released from the ovaries. If theegg is not fertilized, menstruation begins. The
cycle then repeats itself about every 28 days.
With each menstrual cycle, the supply of eggs
decreases. When most of the eggs are depleted
from a woman’s ovaries, menopause begins.
During menopause, the menstrual cycles stop,
the ovaries stop making hormones, and thewoman is no longer able to become pregnant.
How does cancer therapy affect the ovaries?
Certain chemotherapy drugs, radiation therapy, and surgery can sometimes damage theovaries, reducing the reserve supply of eggs. When the ovaries are not able to produce
eggs or hormones, this is called ovarian failure.
What are the causes of ovarian failure?
Chemotherapy of the "alkylator" type (such as cyclophosphamide, nitrogen mustard
and busulfan) is most likely to affect ovarian function. The total dose of alkylators usedduring cancer treatment is important in determining the likelihood of ovarian damage.
With higher total doses, the likelihood of damage to the ovaries increases. If treatment
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for childhood cancer included a combination of both radiation and alkylating
chemotherapy, the risk of ovarian failure may also be increased.
Radiation therapy can affect ovarian function in two ways:
Primary (direct) failure of the ovaries can be caused by radiation that is aimed
directly at or near the ovaries. The age of the person at the time of radiation andthe total radiation dose can affect whether or not ovarian failure occurs. Generally,
younger girls tend to have less damage to the ovaries than people who received
equal doses but who were teenagers or young adults at the time of radiation.
However, higher doses usually cause the ovaries to stop functioning in most females
regardless of age.
Secondary (indirect) failure of the ovaries can occur as a result of radiation
therapy to the brain. The pituitary gland, located in the center of the brain,
regulates the production of two hormones (FSH and LH) needed for proper ovarianfunction. Radiation to the brain at higher doses can damage the pituitary gland,
leading to low levels of these hormones.
Surgery. If both ovaries were removed (bilateral oophorectomy) during cancer therapy,
this always results in ovarian failure. This type of ovarian failure is sometimes called"surgical menopause". If one ovary was removed (unilateral oophorectomy), menopause
may occur earlier than it otherwise would have ("premature menopause").
What types of cancer therapy increase the risk of ovarian failure?
Females who received the following therapy may be at risk for ovarian failure:

Radiation therapy to any of the following areas:- Whole abdomen- Pelvis- Lower spine (lumbar and sacral areas) – if dose was 25 Gy (2500 cGy/rads) or
higher- Total body (TBI)- Head/brain (cranial) – if dose was 40 Gy (4000 cGy/rads) or higherChemotherapy - the class of drugs called "alkylators" can cause ovarian failure
when given in high doses. Examples of these drugs are:Alkylating agents:- Busulfan- Carmustine (BCNU)
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Chlorambucil
Cyclophosphamide (Cytoxan®)
Ifosfamide
Lomustine (CCNU)
Mechlorethamine (nitrogen mustard)
Melphalan
Procarbazine
Thiotepa

Heavy metals:- Carboplatin- Cisplatin
Non-classical alkylators:- Dacarbazine (DTIC)- TemozolomideSurgery:- Removal of one or both ovaries

What are the effects of childhood cancer therapy on the female reproductive
system?
1. Failure to enter puberty. Pre-pubertal girls who received cancer therapy that resultsin ovarian failure will need hormonal therapy (hormones prescribed by a doctor)
to progress through puberty. If this occurs, referral to an endocrinologist (hormone
doctor) should be made for further evaluation and management.
2. Temporary cessation of menstrual cycles. Many females who were alreadymenstruating will stop having monthly periods during their cancer therapy. In mostcases, menstrual cycles will resume sometime after cancer treatment ends, although thetiming of this is unpredictable. In some cases, it may take up to several years to restart
menstruation. Since eggs are released before the menstrual cycles, pregnancy canoccur before the menstrual periods resume. If pregnancy is undesired, birth control(contraception) should be used, even if the menstrual cycles have not resumed.
3. Permanent cessation of menstrual cycles (premature menopause). Menopause(the permanent cessation of menstrual cycles) occurs at an average age of 51. Females
who were already menstruating prior to their cancer therapy sometimes develop
ovarian failure as a result of their cancer treatment and never resume menstrual cycles.
Others may resume menstrual cycles, but then stop menstruating much earlier than
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Healthy living after treatment for childhood cancer
would normally be expected. If a woman is currently having menstrual periods
but received chemotherapy or radiation that can affect ovarian function or had one
ovary removed, she may still be at risk for entering menopause at an early age. If awoman at risk for premature menopause desires to have children, it is best not todelay childbearing beyond the early thirties, because the period of fertility may be
shortened after having cancer therapy.
4. Lack of female hormones. Females with ovarian failure do not make enoughestrogen. Estrogen is needed for functions other than reproduction – it is very
important for maintaining strong healthy bones, a healthy heart, and overall well-being.
Young women with ovarian failure should see an endocrinologist (hormone specialist) for
hormone replacement therapy, which will be necessary until they reach middle age.
5. Infertility. Infertility is the inability to achieve a pregnancy after at least one yearof unprotected intercourse. In women, infertility occurs when the ovaries cannot
produce eggs (ovarian failure), or when the reproductive organs are unable to sustain apregnancy. Infertility may be the result of surgery, radiation therapy, chemotherapy,
or any combination of these. There may also be other reasons for infertility that are
unrelated to cancer therapy.
If a woman has regular monthly menstrual periods and normal hormone levels (FSH, LH
and estradiol), she is likely to be fertile and able to have a baby. If a woman does NOT
have monthly menstrual periods, or if she has monthly menstrual periods ONLY with theuse of supplemental hormones, or if she had to take hormones in order to enter or
progress through puberty, she is likely to be infertile.
Girls who had surgical removal of both ovaries will be infertile. Girls who had surgicalremoval of the uterus (hysterectomy) but still have functioning ovaries can become
mothers with the use of a gestational surrogate (another female who carries the
pregnancy to term). Women who are infertile should discuss their options with a fertility
specialist and their oncologist. The use of donor eggs may be an alternative for some
women. Additional options may include adoption of a biologically unrelated child orchild-free living.
6. Pregnancy risks. Certain therapies used during treatment for childhood cancer
can sometimes increase the risk of problems that a woman may experience during
pregnancy, labor, and childbirth. The following women may be at increased risk:


Women who had radiation to the whole abdomen, para-aortic area, pelvis, lower
spine, or total body (TBI) may have an increased risk of miscarriage, prematuredelivery, or problems during labor.
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Healthy living after treatment for childhood cancer

Women who received anthracycline chemotherapy (such as doxorubicin or
daunorubicin), and women who received radiation to the upper abdomen or chest
may be at risk for heart problems that can worsen with pregnancy and labor (seerelated Health Link: "Heart Health").

Women with these risk factors should be followed closely by an obstetrician who isqualified to care for women with high-risk pregnancies.
Fortunately, in most cases, there is no increased risk of cancer or birth defects inchildren born to childhood cancer survivors. In rare cases, if the type of cancer inchildhood was a genetic (inherited) type, then there may be a risk of passing that typeof cancer on to a child. You should check with your oncologist if you are not surewhether the type of cancer you had was genetic.
What monitoring is recommended?
Females who have had any of the cancer treatments that may affect ovarian function
should have a yearly check-up that includes careful evaluation of progression throughpuberty, menstrual and pregnancy history, and sexual function. Blood may be tested
for hormone levels (FSH, LH, and estradiol). If any problems are detected, a referral toan endocrinologist (hormone specialist) and/or other specialists may be recommended.
For women with ovarian failure, a bone density test (special type of x-ray) to check forthinning of the bones (osteoporosis) may also be recommended.

Written by Marcia Leonard RN, PNP, Long Term Follow Up Clinic, Department ofPediatric Hematology-Oncology, University of Michigan Medical Center, Ann Arbor, MI.
Reviewed by: Charles Sklar MD, Julie Blatt MD, Daniel Green MD, Melissa M. Hudson
MD, Wendy Landier CPNP, Smita Bhatia MD, MPH, and Peggy Kulm RN, MA.
Illustrated by Devika Bhatia.

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Additional health information for childhood cancer survivors is available atwww.survivorshipguidelines.org
Note: Throughout this Health Links series, the term "childhood cancer" is used to designate pediatric cancers that may
occur during childhood, adolescence, or young adulthood. Health Links are designed to provide health information
for survivors of pediatric cancer, regardless of whether the cancer occurred during childhood, adolescence, or young
adulthood.
Disclaimer and Notice of Proprietary Rights
Introduction to Late Effects Guidelines and Health Links: The "Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers" and accompanying"Health Links" were developed by the Children’s Oncology Group as a collaborative effort of the Late Effects Committee and Nursing Discipline.
For Informational Purposes Only: The information and contents of each document or series of documents made available from by the Children’s Oncology Group relating to lateeffects of cancer treatment and care or containing the title "Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers" or the title "HealthLink", whether available in print or electronic format (including any digital format, e-mail transmission, or download from the website), shall be known hereinafter as "Informational
Content". All Informational Content is for informational purposes only. The Informational Content is not intended to substitute for medical advice, medical care, diagnosis or treatment obtained from a physician or health care provider.
To cancer patients (if children, their parents or legal guardians): Please seek the advice of a physician or other qualified health provider with any questions you may haveregarding a medical condition and do not rely on the Informational Content. The Children’s Oncology Group is a research organization and does not provide individualized
medical care or treatment.
To physicians and other healthcare providers: The Informational Content is not intended to replace your independent clinical judgment, medical advice, or to exclude
other legitimate criteria for screening, health counseling, or intervention for specific complications of childhood cancer treatment. Neither is the Informational Content intended
to exclude other reasonable alternative follow-up procedures. The Informational Content is provided as a courtesy, but not intended as a sole source of guidance inthe evaluation of childhood cancer survivors. The Children’s Oncology Group recognizes that specific patient care decisions are the prerogative of the patient, family, andhealthcare provider.
No endorsement of any specific tests, products, or procedures is made by Informational Content, the Children’s Oncology Group, or affiliated party or member of the Children’s
Oncology Group.
No Claim to Accuracy or Completeness: While the Children's Oncology Group has made every attempt to assure that the Informational Content is accurate and complete as of thedate of publication, no warranty or representation, express or implied, is made as to the accuracy, reliability, completeness, relevance, or timeliness of such Informational Content.
No Liability on Part of Children’s Oncology Group and Related Parties/ Agreement to Indemnify and Hold Harmless the Children’s Oncology Group and Related Parties:
No liability is assumed by the Children's Oncology Group or any affiliated party or member thereof for damage resulting from the use, review, or access of the Informational Content.
You agree to the following terms of indemnification: (i) "Indemnified Parties" include authors and contributors to the Informational Content, all officers, directors, representatives,
employees, agents, and members of the Children’s Oncology Group and affiliated organizations; (ii) by using, reviewing, or accessing the Informational Content, you agree, at yourown expense, to indemnify, defend and hold harmless Indemnified Parties from any and all losses, liabilities, or damages (including attorneys' fees and costs) resulting from any andall claims, causes of action, suits, proceedings, or demands related to or arising out of use, review or access of the Informational Content.
Proprietary Rights: The Informational Content is subject to protection under the copyright law and other intellectual property law in the United States and worldwide. The Children's
Oncology Group retains excursive copyright and other right, title, and interest to the Informational Content and claims all intellectual property rights available under law. You hereby agree to help the Children’s Oncology Group secure all copyright and intellectual property rights for the benefit of the Children’s Oncology Group by taking additional action
at a later time, action which could include signing consents and legal documents and limiting dissemination or reproduction of Informational Content.

Copyright 2006 © Children’s Oncology GroupAll rights reserved worldwide

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Finding and Paying for Healthcare
after Treatment for Childhood Cancer
As a childhood cancer survivor, it is important for you to have regular medical
check-ups, since some of the treatments that you received may increase your riskfor health problems as you get older. Sometimes it is difficult to find and pay for the
medical care that you need. There are several things you can do to make sure you are
getting the best possible care for your needs. Here are some suggestions.
If possible, find a long-term follow-up clinic. Many childhood cancer programs havelong-term follow-up clinics. If you are still followed in a childhood cancer center, or if
there is a childhood cancer center near where you live, call them and find out if they
have a long-term follow-up program. Long-term follow-up clinics usually screen forlate effects and educate survivors about ways to lower the risk of health problems aftercancer. They are generally an excellent place to get a complete health evaluation,
but are not usually designed to meet the everyday healthcare needs of survivors. Also,
some long-term follow-up programs are only able to follow survivors until they reachadulthood, which may mean that they can see survivors only until they reach age 18 or
21. So, even if you are attending a long-term follow-up clinic, it is also important to finda primary healthcare provider who can take care of your general medical needs.
Choose a primary healthcare provider in your community. The best primary
healthcare providers for adults are usually those who specialize in family practiceor internal medicine. The chance of finding a primary healthcare provider who has
experience taking care of childhood cancer survivors is low, due to the rarity of serious
illnesses like cancer in children. However, it is important to look for a healthcare
provider who is thorough, well-trained, and a good listener. Ask friends and family
members to help you identify healthcare providers with these qualities who arepracticing in your area. Make an appointment for a general check-up and discuss yourpast medical history and health risks during this visit. It is best to do this at a time when
you are well, and not when you are being seen because of an illness.
Tell your healthcare provider about the Childhood Cancer Survivor Long-Term
Follow-Up Guidelines, available on the Children’s Oncology Group website atwww.survivorshipguidelines.org. This comprehensive set of healthcare screening
and management guidelines is designed for use by healthcare professionals who areproviding ongoing medical follow-up for childhood cancer survivors.
Organize a medical team to provide your local care. Get advice from your childhood
cancer doctor and your primary healthcare provider about who should be on your
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medical team. Your team should always include a primary healthcare provider and adentist. Depending on your situation, you may also need to include other professionals
that are important for your continued health, such as a physical therapist or
psychologist. Your primary healthcare provider can help you select these individuals andprovide referrals for their services.
Share your medical records with all the members of your medical team. Ask yourhospital or clinic to send copies of your treatment records to all of your new healthcare
providers. If possible, ask the doctor who treated your childhood cancer to provide
you with a summary of your diagnosis and treatment, future health risks, andrecommended screening. Keep a copy of the summary and important sections of yourpediatric medical records in a personal medical file. Be sure that every new healthcare
provider you see is aware of your medical history and any special health risks you may
have because of your cancer treatment. If you need help in obtaining your medical
records, call the hospital, clinic, or medical center where you received your treatment.
Be a partner in the healthcare that you receive. To find out if you are getting
adequate care, ask yourself the following questions:
Do I know my cancer diagnosis and specific treatment I received?
 Do I know about the health problems that can occur after this treatment?
 Have I shared this information with my healthcare providers?
 Does my healthcare provider check periodically for health problems specificallyrelated to my childhood cancer?
 Does my healthcare provider advise me about things I should or should not do to
keep healthy after my treatment for childhood cancer?
Explore all resources for paying for healthcare. Healthcare is expensive and people
who have had a serious illness often face many hurdles when trying to obtain adequate
insurance coverage. However, you may still be able to get insurance, even with yourhealth history. Milestones of five, seven, and ten years from the end of treatment
seem to be important to insurers. Ask your healthcare provider to write a letter to theinsurance company documenting your long-term remission.
If you aren’t insured, you should seek assistance from social service organizations
or social workers to identify possible programs to help you obtain low cost
insurance. There may be State or Federal public assistance programs that you may
qualify for. If you need medical care and currently do not have insurance, you can talkto your healthcare provider about arranging a payment plan for primary care services.
You may be able to have lab work done for a reduced rate at your county or city health
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department. If you need an evaluation by a specialist or an expensive test, ask yourhealthcare provider if you can be referred to a medical specialist or facility that offers
discounted rates or payment plans for individuals who are uninsured.
As a survivor of childhood cancer, you have already overcome many obstacles. The
process of obtaining and paying for healthcare can sometimes seem discouraging, but
it is worth the effort!!
Survivorship Healthcare Coverage Checklist
Define your current healthcare needs. Ask yourself:
Do I mainly need a healthcare provider for general check-ups?
 Do I have chronic health problems that require frequent medical visits?
 Do I have problems that need periodic monitoring by specialists?
 Am I on expensive prescription medications?
 Do I require prosthetic or rehab services?


Explore all resources for healthcare coverage:
 Private insurance coverage through a parent’s or spouse’s policy Health insurance coverage offered by your college or employer
 State or federal public assistance programs Discounted or free healthcare through health department clinics or church-based
programs
 Low cost or free prescription programs provided by some pharmaceuticalcompanies for people with low incomes
If you are insured, get the facts about your policy.
 What services are covered?
 Does your plan offer a discounted prescription program?
 Are referrals to specialists controlled through a primary care physician?
 Are limitations set on pre-existing medical conditions?
 Is coverage in effect only while the patient is a full-time student?
 Does coverage expire at certain age?
Ask for help in understanding current resources and locating new ones.
 Ask family members, friends, hospital or clinic insurance managers and insurance
representatives to explain unclear details about insurance benefits.
 Call a clinic or hospital social worker to ask for help in finding state or community
healthcare resources.
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Check out services offered by national nonprofit organizations (example, Lions Clubfor ocular prostheses).
Be proactive in obtaining and maintaining health insurance coverage.
Contact your state insurance office to get a list of insurance providers in your state.
Call your county department of human services to find out if you qualify for
healthcare through state or federal programs for people with low income or disability.
Avoid lapses in coverage. Plan for transitions in health insurance coverage that occur
with college graduation or job changes.

Be aware of the laws that help you keep insurance benefits. The following laws
apply to survivors living in the United States:


COBRA (Consolidated Omnibus Budge Reconciliation Act) requires employers orlarger businesses to make insurance available for a limited time to employees (andtheir dependents) who are fired or laid off.
HIPAA (Health Insurance Portability and Accountability Act of 1996) allows people
with pre-existing conditions to keep comprehensive insurance coverage when they
are changing insurance plans or jobs. Certain conditions apply that may limit thehelp available to you under HIPAA. Contact your social worker, insurance provider,or state insurance department with questions.

Be persistent when meeting obstacles. Try not to get overwhelmed.
Complete and follow through with applications.
Appeal denials with letters of support from your healthcare provider.
Contact groups such as Candlelighters and the National Coalition of Cancer
Survivors for more information about healthcare resources.
Don’t give up!

Recommended Resources:
The National Coalition of Cancer Survivors is a patient-led advocacy organization
for cancer survivors. Their booklet, "A Cancer Survivor’s Almanac," lists hundreds oforganizations and agencies that offer help regarding specific cancer-related issues,
including finding affordable healthcare. The booklet is available on their website,www.canceradvocacy.org. Their phone number is (877) 622-7937.
HIPAA. Information about the Health Insurance Portability and Accountability Act
of 1996, which helps people with pre-existing health conditions get and keep healthinsurance, is available on the website of the U.S. Department of Health and Human
Services at: http://cms.hhs.gov/hipaa/hipaa1/content/cons.asp.
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Candlelighters Childhood Cancer Foundation® (CCCF) is a non-profit organization
whose mission is to educate, support, serve, and advocate for families of children withcancer and childhood cancer survivors. www.candlelighters.org. 800-366-CCCF (800366-2223).
Cancer Care, a nonprofit organization dedicated to providing emotional support,
information, and practical help to people with cancer and their loved ones. 1-800-813HOPE (4637). www.cancercare.org.

Written by Melissa M. Hudson, MD, Sally Wiard, MSW, LCSW, and Allison Hester, RN,
MSN, CPNP, After Completion of Therapy (ACT) Clinic, St. Jude Children’s Research
Hospital, Memphis, TN. Adapted from the CCSS Newsletter, Spring 2003, used withpermission.
Reviewed by Leslie L. Robison PhD, Kevin Oeffinger MD, Peggy Kulm RN, MA, Scott
Hawkins LMSW, and Octavio Zavala.

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Additional health information for childhood cancer survivors is available atwww.survivorshipguidelines.org
Note: Throughout this Health Links series, the term "childhood cancer" is used to designate pediatric cancers that may
occur during childhood, adolescence, or young adulthood. Health Links are designed to provide health information
for survivors of pediatric cancer, regardless of whether the cancer occurred during childhood, adolescence, or young
adulthood.
Disclaimer and Notice of Proprietary Rights
Introduction to Late Effects Guidelines and Health Links: The "Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers" and accompanying"Health Links" were developed by the Children’s Oncology Group as a collaborative effort of the Late Effects Committee and Nursing Discipline.
For Informational Purposes Only: The information and contents of each document or series of documents made available from by the Children’s Oncology Group relating to lateeffects of cancer treatment and care or containing the title "Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers" or the title "HealthLink", whether available in print or electronic format (including any digital format, e-mail transmission, or download from the website), shall be known hereinafter as "Informational
Content". All Informational Content is for informational purposes only. The Informational Content is not intended to substitute for medical advice, medical care, diagnosis or treatment obtained from a physician or health care provider.
To cancer patients (if children, their parents or legal guardians): Please seek the advice of a physician or other qualified health provider with any questions you may haveregarding a medical condition and do not rely on the Informational Content. The Children’s Oncology Group is a research organization and does not provide individualized
medical care or treatment.
To physicians and other healthcare providers: The Informational Content is not intended to replace your independent clinical judgment, medical advice, or to exclude
other legitimate criteria for screening, health counseling, or intervention for specific complications of childhood cancer treatment. Neither is the Informational Content intended
to exclude other reasonable alternative follow-up procedures. The Informational Content is provided as a courtesy, but not intended as a sole source of guidance inthe evaluation of childhood cancer survivors. The Children’s Oncology Group recognizes that specific patient care decisions are the prerogative of the patient, family, andhealthcare provider.
No endorsement of any specific tests, products, or procedures is made by Informational Content, the Children’s Oncology Group, or affiliated party or member of the Children’s
Oncology Group.
No Claim to Accuracy or Completeness: While the Children's Oncology Group has made every attempt to assure that the Informational Content is accurate and complete as of thedate of publication, no warranty or representation, express or implied, is made as to the accuracy, reliability, completeness, relevance, or timeliness of such Informational Content.
No Liability on Part of Children’s Oncology Group and Related Parties/ Agreement to Indemnify and Hold Harmless the Children’s Oncology Group and Related Parties:
No liability is assumed by the Children's Oncology Group or any affiliated party or member thereof for damage resulting from the use, review, or access of the Informational Content.
You agree to the following terms of indemnification: (i) "Indemnified Parties" include authors and contributors to the Informational Content, all officers, directors, representatives,
employees, agents, and members of the Children’s Oncology Group and affiliated organizations; (ii) by using, reviewing, or accessing the Informational Content, you agree, at yourown expense, to indemnify, defend and hold harmless Indemnified Parties from any and all losses, liabilities, or damages (including attorneys' fees and costs) resulting from any andall claims, causes of action, suits, proceedings, or demands related to or arising out of use, review or access of the Informational Content.
Proprietary Rights: The Informational Content is subject to protection under the copyright law and other intellectual property law in the United States and worldwide. The Children's
Oncology Group retains excursive copyright and other right, title, and interest to the Informational Content and claims all intellectual property rights available under law. You hereby agree to help the Children’s Oncology Group secure all copyright and intellectual property rights for the benefit of the Children’s Oncology Group by taking additional action
at a later time, action which could include signing consents and legal documents and limiting dissemination or reproduction of Informational Content.

Copyright 2006 © Children’s Oncology GroupAll rights reserved worldwide

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GI Health
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Gastrointestinal Health after Childhood Cancer
Treatment for childhood cancer can sometimes cause scarring and chronic problemsof the intestines (bowel) or other parts of the gastrointestinal (GI) system. It is important
to know about the GI system so that you can recognize symptoms and keep your GI
system healthy.
How does the gastrointestinal system work?
The GI system (also known as "the digestive system") is a group of organs thatare joined in a long, twisting tube from the mouth to the anus. The purpose of the GI
system is to digest (break down) the food that we eat. This allows the body to use foodto build and nourish cells and provide energy.
What types of GI problems can arise after treatment?
The types of problems can vary depending on the treatment that was given. Generally,
GI problems occurring after treatment for childhood cancer are related to surgery orradiation. The effects depend on the location of the surgery, the radiation treatment
field, and the dose of radiation received.
Problems that can develop include:Bowel obstruction (blockage of theintestines) – the risk is higher for
people who have had a combinationof abdominal radiation and surgery.

Esophageal stricture (scarring andnarrowing of the tube that delivers
food from the mouth to thestomach) - this is usually a result ofradiation and can cause problems
with swallowing.



Gallstones (solid deposits ofcholesterol or calcium salts thatform in the gallbladder or bile ducts) - the risk is increased in people who had
abdominal radiation.

Hepatic fibrosis or cirrhosis (scarring of the liver) – the risk is increased forpeople who received radiation to the abdomen, or for those with a chronic liverinfection (hepatitis).
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Chronic enterocolitis (inflammation of the intestines resulting in chronic diarrhea
and abdominal pain) – the risk is increased after abdominal or pelvic radiation.

Colorectal cancer (cancer of the large intestine) – the risk is increased for people
who had abdominal or pelvic radiation (see related Health Link "Colorectal
Cancer").

What treatments increase the risk for developing a gastrointestinal problem?
Surgery involving the abdomen or pelvis
Radiation at doses of 30 Gy (3000 cGy/rads) or higher to the: Neck Chest Abdomen
 Pelvis
Other risk factors include: History of bowel adhesions (scarring) History of bowel obstruction (blockage) Family history of colorectal or esophageal cancer
 Family history of gallstones
 Tobacco use

What are the possible symptoms of a gastrointestinal problem?
Chronic acid reflux (heartburn) Difficult or painful swallowing
 Chronic nausea or vomiting Abdominal pain Chronic diarrhea
 Chronic constipation
 Black tarry stools or blood in stool Weight loss
 Changes in appetite
 Abdominal distension/feeling bloated Jaundice/yellow eyes, yellow skin (see related Health Link: "Liver Health")

If you develop any of these symptoms, see your healthcare provider. Symptoms
that come on quickly or are severe (such as the sudden onset of abdominal pain andvomiting) may indicate a more urgent problem (such as a bowel obstruction) requiring
immediate medical evaluation.
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What medical tests are used to screen for a gastrointestinal problem?
Screening for problems affecting the GI system involves an annual physical examination
by a qualified health care professional. X-rays, blood tests, and testing for small amountsof blood in the stool (called the guaiac test) are sometimes needed. An ultrasound may
be needed if gallstones or gallbladder problems are suspected. Additionally, certain tests
that examine the inside of the colon (colonoscopy) or esophagus (endoscopy) withspecial instruments are sometimes needed.
What can be done to prevent gastrointestinal problems?


Develop a healthy nutrition plan. Suggestions for a healthy diet include:- Choose a variety of foods from all the food groups. Use the Food Guide
Pyramid (www.mypyramid.gov) to help choose foods for a well-balanced mealplan.
- Eat 5 or more servings a day of fruits and vegetables, including citrus fruits anddark-green and deep-yellow vegetables.
- When drinking juice, choose 100% fruit or vegetable juice, and limit to about 4
ounces a day.
- Eat plenty of high fiber foods, such as whole grain breads, rice, pasta andcereals. Avoid foods high in sugars (such as candy, sweetened cereals, andsodas)- Buy a new fruit, vegetable, low-fat food, or whole grain product each time you
shop for groceries.
- Decrease the amount of fat in your meals by baking, broiling or boiling foods
and not eating fried foods.
- Limit intake of red meat by substituting fish, chicken, turkey or beans. Whenyou eat meat, select leaner cuts and smaller portions.
- Limit fried and high-fat foods, such as fries, snack chips, cheeseburgers, andpizza.
- Choose low-fat milk and dairy products.
- Avoid salt cured, smoked, charbroiled and pickled foods.
- Be sure that you eat foods rich in calcium, such as milk, yogurt and dark green
vegetables.



Avoid cancer-promoting habits- Do not smoke or use tobacco products.
- Avoid second-hand smoke when at all possible.

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GI Health
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If you drink alcohol, use moderation- Heavy drinkers (people who drink two or more hard drinks per day), especiallythose who use tobacco, have a higher risk of GI cancer and othergastrointestinal problems.
- Limiting the use of alcohol can reduce these risks.

Written by Sharon M. Castellino MD, Department of Pediatrics, Hematology/Oncology,
Wake Forest University Health Sciences, Winston-Salem, NC, and Sheila Shope, RN,
FNP, After Completion of Therapy (ACT) Clinic, St. Jude Children’s Hospital, Memphis,
TN.
Reviewed by: Jacqueline Casillas MD, Melissa M. Hudson MD, Wendy Landier CPNP,
and Joan Darling PhD.
Illustrated by: Devika Bhatia

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Additional health information for childhood cancer survivors is available atwww.survivorshipguidelines.org
Note: Throughout this Health Links series, the term "childhood cancer" is used to designate pediatric cancers that may
occur during childhood, adolescence, or young adulthood. Health Links are designed to provide health information
for survivors of pediatric cancer, regardless of whether the cancer occurred during childhood, adolescence, or young
adulthood.
Disclaimer and Notice of Proprietary Rights
Introduction to Late Effects Guidelines and Health Links: The "Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers" and accompanying"Health Links" were developed by the Children’s Oncology Group as a collaborative effort of the Late Effects Committee and Nursing Discipline.
For Informational Purposes Only: The information and contents of each document or series of documents made available from by the Children’s Oncology Group relating to lateeffects of cancer treatment and care or containing the title "Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers" or the title "HealthLink", whether available in print or electronic format (including any digital format, e-mail transmission, or download from the website), shall be known hereinafter as "Informational
Content". All Informational Content is for informational purposes only. The Informational Content is not intended to substitute for medical advice, medical care, diagnosis or treatment obtained from a physician or health care provider.
To cancer patients (if children, their parents or legal guardians): Please seek the advice of a physician or other qualified health provider with any questions you may haveregarding a medical condition and do not rely on the Informational Content. The Children’s Oncology Group is a research organization and does not provide individualized
medical care or treatment.
To physicians and other healthcare providers: The Informational Content is not intended to replace your independent clinical judgment, medical advice, or to exclude
other legitimate criteria for screening, health counseling, or intervention for specific complications of childhood cancer treatment. Neither is the Informational Content intended
to exclude other reasonable alternative follow-up procedures. The Informational Content is provided as a courtesy, but not intended as a sole source of guidance inthe evaluation of childhood cancer survivors. The Children’s Oncology Group recognizes that specific patient care decisions are the prerogative of the patient, family, andhealthcare provider.
No endorsement of any specific tests, products, or procedures is made by Informational Content, the Children’s Oncology Group, or affiliated party or member of the Children’s
Oncology Group.
No Claim to Accuracy or Completeness: While the Children's Oncology Group has made every attempt to assure that the Informational Content is accurate and complete as of thedate of publication, no warranty or representation, express or implied, is made as to the accuracy, reliability, completeness, relevance, or timeliness of such Informational Content.
No Liability on Part of Children’s Oncology Group and Related Parties/ Agreement to Indemnify and Hold Harmless the Children’s Oncology Group and Related Parties:
No liability is assumed by the Children's Oncology Group or any affiliated party or member thereof for damage resulting from the use, review, or access of the Informational Content.
You agree to the following terms of indemnification: (i) "Indemnified Parties" include authors and contributors to the Informational Content, all officers, directors, representatives,
employees, agents, and members of the Children’s Oncology Group and affiliated organizations; (ii) by using, reviewing, or accessing the Informational Content, you agree, at yourown expense, to indemnify, defend and hold harmless Indemnified Parties from any and all losses, liabilities, or damages (including attorneys' fees and costs) resulting from any andall claims, causes of action, suits, proceedings, or demands related to or arising out of use, review or access of the Informational Content.
Proprietary Rights: The Informational Content is subject to protection under the copyright law and other intellectual property law in the United States and worldwide. The Children's
Oncology Group retains excursive copyright and other right, title, and interest to the Informational Content and claims all intellectual property rights available under law. You hereby agree to help the Children’s Oncology Group secure all copyright and intellectual property rights for the benefit of the Children’s Oncology Group by taking additional action
at a later time, action which could include signing consents and legal documents and limiting dissemination or reproduction of Informational Content.

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Healthy living after treatment for childhood cancer

Endocrine Problems after Childhood Cancer:
Growth Hormone Deficiency
Some people who were treated for cancer during childhood may develop endocrine(hormone) problems as a result of changes in the function of a complex system ofglands known as the endocrine system.
What is the endocrine system?
The endocrine system is a group of glands that regulates many body functions
including growth, puberty, energy level, urine production, and stress response. Glandsof the endocrine system include the pituitary, hypothalamus, thyroid, adrenals,
pancreas, ovaries (in females), and testes (in males). The hypothalamus and pituitary
are sometimes called the "master glands" because they control many of the otherglands in the endocrine system. Unfortunately, some treatments given for childhood
cancer can damage the endocrine system, resulting in a variety of problems.

What are hormones?
Hormones are chemical messengers that carry information from the endocrine
glands through the bloodstream to the body’s cells. The endocrine system makes many
hormones (such as growth hormone, sex hormones, adrenal and thyroid hormones) thatwork together to maintain specific bodily functions.
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Healthy living after treatment for childhood cancer
What is growth hormone deficiency?
Growth hormone (GH) is made by the pituitary gland. In order for children to grow totheir full height potential, they need adequate amounts of GH. GH works with thyroid
hormone, exercise, proper nutrition, and rest to help children and teenagers grow.
GH also helps maintain normal blood sugar levels and is needed for the normal
development of teeth. In addition to helping with bone growth, GH affects how well theheart and blood vessels work, how the body uses fat, makes muscle, and strengthensbones, and generally influences overall health throughout life. In healthy people, GH
production continues into adulthood. Adults need small amounts of GH to maintainproper amounts of fat, muscle and bone. GH may also play a role in regulating moodand emotion.
Cancer treatments, such as radiation or surgery to structures in the head or brain, maycause malfunction of the glands that control growth. As a result, the pituitary gland may
not make enough GH, resulting in growth hormone deficiency. GH deficiency can also
occur in people who have never had cancer treatment.
Signs and symptoms of growth hormone deficiency
Slowing of growth (height) is one of the most obvious signs of GH deficiency in children.
A GH deficient child usually grows less than 2 inches per year. Children with GH
deficiency are smaller and tend to look younger than children their same age, but theyusually have normal body proportions.
Adults who have GH deficiency may have a variety of different physical symptoms,
such as thinning of the bones, decreased muscle strength, increased body fat, or highblood cholesterol levels. Adults may also have emotional symptoms such as feeling
tired, anxious, irritable, gloomy, unmotivated, or having a decreased interest in sex.
Risk factors for growth hormone deficiency
Risk factors related to treatment for cancer during childhood include:Cancer treatment before reaching adult height, especially in very young patients
Radiation to any of the following areas:- Brain (cranial)- Eye or eye socket (orbit)- Ear or infratemporal region (midfacial area behind the cheekbones)- Nasopharynx (area above the roof of the mouth)- Total body (TBI)
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Healthy living after treatment for childhood cancerSurgery to the brain, especially the central region of the brain where the pituitary
gland is located (suprasellar region)

Recommended screening after cancer treatment
All childhood cancer survivors should have a yearly physical examination including
measurement of height and weight, and assessment of pubertal status, nutritional
status, and overall well-being. For patients with the risk factors listed above, thisscreening should be done every 6 months until growth is completed. If there
are signs of poor growth, an x-ray of the wrist (bone age x-ray) should be done. Other
possible causes of growth problems, such as low thyroid function, should also bechecked.
If GH deficiency is suspected, your healthcare provider will probably refer you to an
endocrinologist (doctor who specializes in hormone problems). The endocrinologist will
do more specific tests to evaluate the problem.
How is growth hormone deficiency treated?
If GH deficiency is detected, your endocrinologist will suggest treatment options foryou. Usually this involves supplementing or replacing the GH that your pituitary glandis not making on its own. Synthetic GH is given by injection. GH is usually given forseveral years, until the person reaches an acceptable adult height or the greatest
possible height. Your endocrinologist can give you information about how muchgrowth is possible on GH therapy. Treatment options for GH deficiency that persists into
adulthood should be discussed on an individual basis with your endocrinologist.

Written by Debra Eshelman, RN, MSN, CPNP, After the Cancer Experience (ACE)
Pediatric and Young Adult Survivor Programs, Children’s Medical Center of Dallas andthe University of Texas Southwestern Medical Center, Dallas, TX.
Reviewers: Lillian R. Meacham MD, Priscilla Rieves, MS, RN, CPNP, Charles Sklar MD,
Julie Blatt MD, Melissa M. Hudson MD, Winnie Kittiko RN, MS, and Sarah Bottomley
MN, RN, CPNP, CPON®.

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Healthy living after treatment for childhood cancer

Additional health information for childhood cancer survivors is available atwww.survivorshipguidelines.org
Note: Throughout this Health Links series, the term "childhood cancer" is used to designate pediatric cancers that may
occur during childhood, adolescence, or young adulthood. Health Links are designed to provide health information
for survivors of pediatric cancer, regardless of whether the cancer occurred during childhood, adolescence, or young
adulthood.
Disclaimer and Notice of Proprietary Rights
Introduction to Late Effects Guidelines and Health Links: The "Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers" and accompanying"Health Links" were developed by the Children’s Oncology Group as a collaborative effort of the Late Effects Committee and Nursing Discipline.
For Informational Purposes Only: The information and contents of each document or series of documents made available from by the Children’s Oncology Group relating to lateeffects of cancer treatment and care or containing the title "Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers" or the title "HealthLink", whether available in print or electronic format (including any digital format, e-mail transmission, or download from the website), shall be known hereinafter as "Informational
Content". All Informational Content is for informational purposes only. The Informational Content is not intended to substitute for medical advice, medical care, diagnosis or treatment obtained from a physician or health care provider.
To cancer patients (if children, their parents or legal guardians): Please seek the advice of a physician or other qualified health provider with any questions you may haveregarding a medical condition and do not rely on the Informational Content. The Children’s Oncology Group is a research organization and does not provide individualized
medical care or treatment.
To physicians and other healthcare providers: The Informational Content is not intended to replace your independent clinical judgment, medical advice, or to exclude
other legitimate criteria for screening, health counseling, or intervention for specific complications of childhood cancer treatment. Neither is the Informational Content intended
to exclude other reasonable alternative follow-up procedures. The Informational Content is provided as a courtesy, but not intended as a sole source of guidance inthe evaluation of childhood cancer survivors. The Children’s Oncology Group recognizes that specific patient care decisions are the prerogative of the patient, family, andhealthcare provider.
No endorsement of any specific tests, products, or procedures is made by Informational Content, the Children’s Oncology Group, or affiliated party or member of the Children’s
Oncology Group.
No Claim to Accuracy or Completeness: While the Children's Oncology Group has made every attempt to assure that the Informational Content is accurate and complete as of thedate of publication, no warranty or representation, express or implied, is made as to the accuracy, reliability, completeness, relevance, or timeliness of such Informational Content.
No Liability on Part of Children’s Oncology Group and Related Parties/ Agreement to Indemnify and Hold Harmless the Children’s Oncology Group and Related Parties:
No liability is assumed by the Children's Oncology Group or any affiliated party or member thereof for damage resulting from the use, review, or access of the Informational Content.
You agree to the following terms of indemnification: (i) "Indemnified Parties" include authors and contributors to the Informational Content, all officers, directors, representatives,
employees, agents, and members of the Children’s Oncology Group and affiliated organizations; (ii) by using, reviewing, or accessing the Informational Content, you agree, at yourown expense, to indemnify, defend and hold harmless Indemnified Parties from any and all losses, liabilities, or damages (including attorneys' fees and costs) resulting from any andall claims, causes of action, suits, proceedings, or demands related to or arising out of use, review or access of the Informational Content.
Proprietary Rights: The Informational Content is subject to protection under the copyright law and other intellectual property law in the United States and worldwide. The Children's
Oncology Group retains excursive copyright and other right, title, and interest to the Informational Content and claims all intellectual property rights available under law. You hereby agree to help the Children’s Oncology Group secure all copyright and intellectual property rights for the benefit of the Children’s Oncology Group by taking additional action
at a later time, action which could include signing consents and legal documents and limiting dissemination or reproduction of Informational Content.

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Hearing Loss
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Hearing Loss after Treatment for Childhood Cancer
Some chemotherapy drugs, other medications, or radiation needed for treatment ofchildhood cancer can damage hearing. Hearing loss interferes with daily living. If you
received these treatments, it is important to have your hearing checked and to obtaintreatment if hearing loss is found.
How do the ears work?
It’s easier to understand hearing loss if you understand how the ears work. The ear ismade up of three main parts, known as the outer, middle, and inner ear.
Outer earSound waves travel through the air and firstenter the body through the outer ear. The
part of the ear that can be seen outside thebody is called the pinna. The pinna collects
and funnels sound into the auditory (ear)canal. The auditory canal is like a tunnel. It
makes the sound louder and directs it
toward the middle ear.
Middle Ear
The eardrum separates the outer ear fromthe middle ear, a chamber that is normallyfilled with air. Inside the middle ear are
three tiny bones (ossicles) that form a chain
connecting the eardrum to the opening of
the inner ear. Sound waves cause theeardrum to vibrate. These vibrations cause
the three tiny bones in the middle ear to
move, transmitting the sound to the innerear.
Inner EarThe inner ear is known as the cochlea, and it is filled with fluid. The cochlea contains
thousands of tiny nerve endings, known as sensory hair cells. Sounds travels in waves
through the fluid of the inner ear. The sensory hair cells change the sound waves into
nerve impulses that are sent to the brain by way of the auditory nerve (also known as

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the eighth cranial nerve). In the cochlea, the sensory hair cells are arranged in order ofpitch, from low-pitched sounds (such as a man’s voice) to very high-pitched sounds(such as a bird’s chirping). Each hair cell is sensitive to a specific range of pitches.
What are the types of hearing loss?
Hearing loss that occurs in the outer or middle ear is called a conductive hearing loss.
This means that the hearing loss is due to a problem in transmission of sound from the
air to the inner ear. An example of this would be changes in hearing because of fluid
collection in the middle ear. Sometimes this happens when people have ear infections.
The fluid "muffles" the sound when it is traveling through the middle ear.
Hearing loss that results from damage to the inner ear or auditory nerve is called
sensorineural hearing loss. An example of this would be damage to the sensory
hair cells in the inner ear from chemotherapy. Even though sound waves still movethrough the inner ear fluid, they can no longer be changed into nerve impulses, so thesound does not reach the brain. Sensory hair cells that process high-pitched sounds
are usually damaged first, followed by damage to the sensory hair cells that process
lower-pitched sounds.
Hearing loss with both conductive and sensorineural components is called mixed
hearing loss.
What types of cancer therapy increase the risk of hearing loss?
The following cancer treatments can potentially cause hearing loss:
Chemotherapy from the "platinum" group, such as cisplatin or high doses ofcarboplatin High doses of radiation (30 Gy or 3000 cGy/rads or higher) to the head or brain,
especially when the beam is directed at the brainstem or ear
 Surgery involving the brain, ear or auditory (eighth cranial) nerve
 Certain antibiotics (medicines used to treat infections) and diuretics (medicinesthat help the body get rid of excess water)What are the effects of childhood cancer treatment on hearing?
High doses of radiation to the ear or brain can cause inflammation or ear wax
buildup in the outer ear, problems with fluid buildup in the middle ear, or stiffness of theeardrum or middle ear bones. Any of these problems can result in conductive hearing
loss. Radiation can also damage the sensory hair cells in the inner ear, causing
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sensorineural hearing loss. Damage from radiation may affect one or both ears,
depending on the area of radiation treatment. Conductive hearing loss may improveover time, but sensorineural hearing loss is usually permanent.
Platinum chemotherapy can cause damage to sensory hair cells in the inner ear,resulting in sensorineural hearing loss. Most often, the effect is similar in both ears andis permanent.
What are the symptoms of hearing loss?
Symptoms of hearing loss may include:
Ringing or tinkling sounds in the ear
Difficulty hearing in the presence of background noises
 Not paying attention to sounds (such as voices, environmental noises) School problems (see related Health Link: "Educational Issues Following
Treatment for Childhood Cancer") Some people may have no symptoms at allWhat monitoring is recommended?
Testing should be done by an experienced audiologist (a professional trained in hearing
disorders).


Hearing is usually tested by doing an audiogram. During this test, the person
wears earphones and listens for sounds of different pitches and different degrees
of loudness.

People who are not able to have an audiogram (such as those who are too youngor who cannot understand the test instructions) can have their hearing tested
using Brainstem Auditory Evoked Response (BAER). The person having thistest is usually given medicine so that they go to sleep, and then their brainwave
responses to various sounds are recorded.

How often should hearing be tested?
Everyone who had cancer treatment that can affect the ears (such as cisplatin,
high doses of carboplatin, high doses of radiation to the brain) should have their
hearing tested at least once following completion of treatment. The need for additional
testing depends on the type and dosage of cancer treatments that were used. If
hearing loss is found, testing should be repeated yearly or as advised by an audiologist.
In addition, hearing should be tested anytime a hearing problem is suspected.
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What can be done if hearing loss is detected?
If hearing loss is detected, it is important to have an evaluation by an audiologist or
otologist (doctor who specializes in hearing disorders). Hearing loss can cause
problems with a person’s ability to communicate and carry out daily activities. Younger
children are at higher risk for school, learning, and social difficulties, and problems withlanguage development. It is therefore very important for a person with hearing loss tofind the services that will best help to make the most of their ability to communicate well.
There are many options available, and these can be used in various combinations,depending on the hearing problem.
Hearing aids make sounds louder. Several types are available, depending on theage and size of the person and the extent of hearing loss. Most children under 12
years of age wear a behind-the-ear model to allow for adjustments as the child
grows. These are available in a variety of colors – allowing for personalization andassisting with the child’s acceptance of the hearing aid. Teenagers and adults may
benefit from a smaller, in-the-ear or in-the-canal model. It is very important that thehearing aid batteries are fresh and that the hearing aid is turned to the "on" position
when in use.
Auditory trainers (also known as "FM trainers") are devices that are particularly
useful in the school setting. The person who is speaking (usually the teacher) wears
a microphone that transmits sound over FM radio waves. The person with hearing
loss wears a receiver that picks up the sound. This device can be worn alone or
attached to the hearing aid and allows the person with hearing loss to hear the
speaker clearly, even in a noisy environment.
Other assistive devices are also available for people with hearing loss. These
include telephone amplifiers and teletypewriters (TTYs – sometimes also referred toas Telephone Devices for the Deaf or TDDs). Specialized appliances designed forpeople with hearing loss include alarm clocks that vibrate and smoke detectors
with flashing lights. Closed captioning for television is widely available. The Internet
is also a helpful communication tool for people with hearing loss, providing
options such as e-mail, on-line discussions, and access to information via websites.
Newer pagers offer text messaging, instant messaging, Internet access, and phototransmission.
Telecommunication relay services are available in video and voice/text formats.
The video relay service is internet-based and allows a person using signed language
to communicate via a video interpreter, who translates the signed language into
voice or text. The voice/text relay service allows a person using a teletypewriter to

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communicate through an operator, who then relays the message to the hearing
person in spoken form.
Cochlear implants may be an option for people with profound hearing loss who areunable to benefit from hearing aids. These electronic devices are surgically placed
behind the ear and electrodes are threaded into the inner ear. A microphone andspeech processor are then used to transmit sound to the electrodes, stimulating
the auditory nerve and allowing sound perception by the brain. After the cochlear
implant is installed, auditory training is given for a period of time to teach theindividual to recognize and interpret sounds.
Alternate or supplementary communication methods, including speechreading,signed language and cued speech, are available for people with significant hearing
loss. Spoken language may also be an option, but usually requires an intensive
educational approach with speech therapy. In the United States, healthcareorganizations that receive federal funding are required to provide sign language
interpreters when requested by a patient.
Community and educational resources in the United States include services
through local public school districts or referral agencies (available under the IDEA
legislation, PL 105-17), such as intensive speech therapy and auditory trainers forclassroom use. Sometimes special accommodations, such as seating in the front of
the classroom are all that is needed, but this usually requires that the parent request
an Individualized Education Plan (IEP) for the child through the school district (seerelated Health Link: "Educational Issues Following Treatment for Childhood Cancer").
Many hospitals have a teacher or school liaison that can assist with arranging for the
IEP and other specialized services that may be needed. The Americans with
Disabilities Act (ADA, PL 101-336) guarantees people with hearing loss equal accessto public events, spaces and opportunities, including text telephones and telephone
amplifiers in public places, and assistive listening devices in theaters. Some theaters
also offer special showings of newly released movies with captioning.
What can I do to protect my hearing?
If you have experienced hearing loss, or have received therapy that has the potential todamage your hearing, you should discuss this with your healthcare provider. Be sure toobtain prompt evaluation and treatment for ear infections, swimmer’s ear, and earwax
impaction. Whenever possible, ask your healthcare provider to consider alternatives to
medications that have the potential to cause further hearing loss, including certain
antibiotics (aminoglycosides such as gentamicin), certain diuretics ("loop" diuretics,
such as furosemide), salicylates (such as aspirin) and medications for high iron levels.
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You should also take care to protect your ears from loud noises. In fact, loud noises cancause significant damage to your ears. Examples of items and activities that can be
hazardous to your hearing include:
Appliances

Occupations

Recreation

Power saws

Firefighters

Hunting

Vacuum cleaners

Construction workers
Farmers

Boating or water skiing

Lawn mowers

Airport workers

Motorcycling or four-wheeling

Yard trimmers or leaf
blowers

Cab, truck, and bus drivers

Stereo headphones

Hair stylists (due to constant
exposure to loud hair dryers)

Amplifiers

If you cannot avoid exposure to noise, you should:
Wear hearing protectors such as ear plugs or ear muffs
 Limit periods of exposure to noise (for example, if you are at a loud concert, go toa quieter area for a while to give your ears a break) Be aware of the noise in your environment and take control of it when you can.


Written by Wendy Landier, RN, MSN, CPNP, CPON®, Survivorship Clinic, City of Hope
National Medical Center, Duarte, CA. Portions adapted from "Noise and Hearing Loss,Do You Know - An Educational Series for Patients and Their Families," St. JudeChildren’s Research Hospital, Memphis, TN (used with permission).
Reviewed by Kathleen Ruccione RN, MPH, FAAN, CPON®, Debra Friedman MD, Smita
Bhatia MD, MPH, Louis S. Constine MD, Melissa M. Hudson MD, and Revonda Mosher
RN, MSN, CPNP, CPON®.
Illustrated by Devika Bhatia.

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Health Link

Healthy living after treatment for childhood cancer

Hearing Loss
Version 2.0 - 3/06

Additional health information for childhood cancer survivors is available atwww.survivorshipguidelines.org
Note: Throughout this Health Links series, the term "childhood cancer" is used to designate pediatric cancers that may
occur during childhood, adolescence, or young adulthood. Health Links are designed to provide health information
for survivors of pediatric cancer, regardless of whether the cancer occurred during childhood, adolescence, or young
adulthood.
Disclaimer and Notice of Proprietary Rights
Introduction to Late Effects Guidelines and Health Links: The "Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers" and accompanying"Health Links" were developed by the Children’s Oncology Group as a collaborative effort of the Late Effects Committee and Nursing Discipline.
For Informational Purposes Only: The information and contents of each document or series of documents made available from by the Children’s Oncology Group relating to lateeffects of cancer treatment and care or containing the title "Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers" or the title "HealthLink", whether available in print or electronic format (including any digital format, e-mail transmission, or download from the website), shall be known hereinafter as "Informational
Content". All Informational Content is for informational purposes only. The Informational Content is not intended to substitute for medical advice, medical care, diagnosis or treatment obtained from a physician or health care provider.
To cancer patients (if children, their parents or legal guardians): Please seek the advice of a physician or other qualified health provider with any questions you may haveregarding a medical condition and do not rely on the Informational Content. The Children’s Oncology Group is a research organization and does not provide individualized
medical care or treatment.
To physicians and other healthcare providers: The Informational Content is not intended to replace your independent clinical judgment, medical advice, or to exclude
other legitimate criteria for screening, health counseling, or intervention for specific complications of childhood cancer treatment. Neither is the Informational Content intended
to exclude other reasonable alternative follow-up procedures. The Informational Content is provided as a courtesy, but not intended as a sole source of guidance inthe evaluation of childhood cancer survivors. The Children’s Oncology Group recognizes that specific patient care decisions are the prerogative of the patient, family, andhealthcare provider.
No endorsement of any specific tests, products, or procedures is made by Informational Content, the Children’s Oncology Group, or affiliated party or member of the Children’s
Oncology Group.
No Claim to Accuracy or Completeness: While the Children's Oncology Group has made every attempt to assure that the Informational Content is accurate and complete as of thedate of publication, no warranty or representation, express or implied, is made as to the accuracy, reliability, completeness, relevance, or timeliness of such Informational Content.
No Liability on Part of Children’s Oncology Group and Related Parties/ Agreement to Indemnify and Hold Harmless the Children’s Oncology Group and Related Parties:
No liability is assumed by the Children's Oncology Group or any affiliated party or member thereof for damage resulting from the use, review, or access of the Informational Content.
You agree to the following terms of indemnification: (i) "Indemnified Parties" include authors and contributors to the Informational Content, all officers, directors, representatives,
employees, agents, and members of the Children’s Oncology Group and affiliated organizations; (ii) by using, reviewing, or accessing the Informational Content, you agree, at yourown expense, to indemnify, defend and hold harmless Indemnified Parties from any and all losses, liabilities, or damages (including attorneys' fees and costs) resulting from any andall claims, causes of action, suits, proceedings, or demands related to or arising out of use, review or access of the Informational Content.
Proprietary Rights: The Informational Content is subject to protection under the copyright law and other intellectual property law in the United States and worldwide. The Children's
Oncology Group retains excursive copyright and other right, title, and interest to the Informational Content and claims all intellectual property rights available under law. You hereby agree to help the Children’s Oncology Group secure all copyright and intellectual property rights for the benefit of the Children’s Oncology Group by taking additional action
at a later time, action which could include signing consents and legal documents and limiting dissemination or reproduction of Informational Content.

Copyright 2006 © Children’s Oncology GroupAll rights reserved worldwide

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Health Link

Healthy living after treatment for childhood cancer

Heart Health
Version 2.0 - 3/06

Keeping Your Heart Healthy after Treatment
for Childhood Cancer
Most childhood cancer survivors do not develop heart problems; however, certain
types of cancer treatment given during childhood can sometimes result in problems withthe heart. Since heart problems may occur many years after cancer treatment, it isimportant for childhood cancer survivors to be aware of any treatments they may havereceived that can affect the heart. That way, they can take steps to keep their heart
healthy, including regular medical check-ups and tests to monitor heart function. And
if a problem develops, it can be detected and treated early.
How does the heart work?
The heart is a muscular organ that is at thecenter of the body’s circulatory system.
The heart is responsible for pumping blood
with oxygen and nutrients to body tissues.
There are four chambers (two atria and twoventricles) within the heart that work
together to pump blood. Valves direct
the flow of blood through the heartchambers and into the blood vessels. The
rhythm of heart contraction and rate of theheartbeat are coordinated by nerves
that send electrical impulses to different
parts of the heart. A thin membrane(pericardium) surrounds and protects theheart and anchors it within the chest.
What types of cancer treatments can cause heart problems?
The heart can be affected by certain types of chemotherapy and by radiation therapy.
Anthracycline chemotherapy
The anthracyclines are a type of chemotherapy used to treat many childhood
cancers. This type of chemotherapy can sometimes affect the heart. Commonlyused anthracyclines include:
Doxorubicin (Adriamycin®)®
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Heart Health
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Idarubicin (Idamycin®)®
 Mitoxantrone (Novantrone ) EpirubicinRadiation therapy
Heart problems may also result from radiation therapy to the heart or surrounding
tissues. This includes radiation to the following areas:
Chest or thorax (including mantle, mediastinal, and axillary treatment fields)
 Spine (chest or "thoracic" portion)
 Whole or upper abdomenWhat heart problems can occur after treatment for childhood cancer?
There are several types of heart problems that may result from cancer treatments:

The muscle cells of the heart may be damaged so that the heart doesn’t contract
and relax normally (left ventricular dysfunction, cardiomyopathy).

The electrical pathways that conduct impulses to control heart rhythm may bescarred or damaged, resulting in abnormally fast, slow, or irregular heart beats(arrhythmias).



The valves and blood vessels of the heart may be damaged, resulting in stiff orleaky valves (valvular stenosis or insufficiency).

The protective covering of the heart may become inflamed (pericarditis) or scarred(pericardial fibrosis).

The blood vessels of the heart may become scarred or blocked (coronary arterydisease), preventing delivery of oxygen and nutrients to the heart and othertissues.

In severe cases, these problems may result in the death of heart tissue (heart attack or
myocardial infarction), a dangerous heart rhythm (arrhythmia), or an inability of the heart
to pump blood properly (congestive heart failure).
Which types of cancer treatment are associated with which heart problems?


Anthracyclines may cause problems with heart muscle function (left ventricular
dysfunction, cardiomyopathy) and abnormal heart rhythms (arrhythmias).

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Healthy living after treatment for childhood cancerHeart Health
Version 2.0 - 3/06

Radiation therapy may result in scarring and stiffening of heart tissues, causing
abnormal heart rhythm (arrhythmias) and problems with the heart muscle (cardiomyopathy), heart valves (valvular stenosis or insufficiency), blood vessels(coronary artery disease), and membrane surrounding the heart (pericarditis or
pericardial fibrosis).

Are there other risk factors for heart problems?
Some other medical conditions may also increase the risk of heart problems fromchemotherapy or radiation therapy. These include obesity, high blood pressure, highcholesterol or triglyceride levels in the blood, and diabetes. You may have a higher riskof having heart problems if these conditions run in your family. Heart disease is also
more common in women who have gone through menopause, so female survivors whogo through an early menopause may be at higher risk. Many health behaviors can add
to the risk of heart disease including smoking, having an inactive (sedentary) lifestyle,and eating a diet high in fat.
Who is at risk for developing heart problems?
The risk of developing a heart problem after childhood cancer treatment is related toseveral factors:







The age of the patient at the time of cancer therapy
The total dose of anthracycline chemotherapy
The total dose of chest radiation
The amount of the heart tissue included in the radiation treatment field
Treatment with other medications that affect heart function
The presence of other conditions that affect heart function

Most childhood cancer survivors who were treated with anthracyclines or chest
radiation have no heart damage at all. Some survivors have very mild changes in heart
size or function that have not gotten worse over time. Only a small number of survivors
have developed severe heart problems leading to heart failure or dangerous heart
rhythms. Overall, the risk of developing heart problems after childhood cancer therapy
is highest in survivors treated with higher doses of anthracyclines or chest radiation,
especially those who received both treatments at a young age.
Since we do not understand why some survivors develop heart problems after
treatment for childhood cancer and others do not (even when they have gotten the same
treatment), it is important for each childhood cancer survivor treated with anthracyclines
or chest radiation to continue to have regular medical check-ups so that if a problem
with the heart develops, it can be detected and treated early.
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The highest risk factors for anthracyclines and radiation are listed below separately,
although there is overlap:
What are the symptoms of heart problems?
No symptoms may be noted with mild to moderate heart problems. Identificationof problem may only be noted by cardiac studies such as ECHO, EKG, or MUGA.
 Shortness of breath Dizziness Lightheadedness, fainting or near-fainting Severe fatigue preventing exercise or normal play Chest pain that feels like a heavy pressure or fullness and travels to the arm, chinor face.
 Sweating, nausea, or shortness of breath with chest pain Sharp piercing pain in the center or the left side of the chest (often worsens withtaking a deep breath) Very swollen feet or ankles (so swollen that if a finger is pressed firmly on the area
for a few seconds it leaves an indentation)
 Cough and wheezing that doesn’t go away Periods of heart racing or throbbing
 Periods of irregular heartbeat (feeling of the heart skipping beats)

How does exercise affect the heart?
Aerobic exercise (brisk walking, running) is generally safe and actually healthy for theheart. However, some types of exercise are particularly stressful to the heart. These
include intensive isometric activities, such as heavy weight lifting and wrestling. Whena person is squatting to lift a very heavy weight, the heart must work harder because
blood pressure increases as a person strains. Using lower amounts of weights toperform limited high repetition weight lifting (lifting a lighter weight with ease no morethan 15 to 20 times in a row) is much less stressful to the heart and is more likely to be
safe.
Survivors treated with anthracyclines or chest radiation therapy should check with
their healthcare provider before beginning any exercise program. Intensive isometric
exercises should generally be avoided. Those who choose to engage in strenuousor varsity team sports should discuss appropriate guidelines and a plan for ongoing
monitoring with their cardiologist.

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Healthy living after treatment for childhood cancer

Heart Health
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What other conditions or activities can make heart problems worsen?
A heart affected by anthracyclines and chest radiation may not be able to handle thestress of certain conditions that dramatically increase the heart rate, blood pressure, or
blood volume in the circulatory system. These changes may occur during pregnancy or
during illnesses with high fevers. If your cancer treatment included medicines that canaffect heart function, be sure that your healthcare provider is aware, so that steps canbe taken to reduce the stress on your heart.
Some drugs can increase stress on the heart, including cocaine, diet pills, ephedra,
mahuang, and performance enhancing drugs. These types of drugs have been
associated with worsening of heart function and even death in childhood cancer
survivors who received anthracycline chemotherapy.
Are there any other special precautions?
Survivors with abnormalities of heart valves (leaky or scarred valves) should takean antibiotic prior to any dental or other invasive medical procedures (such as
those involving the respiratory, gastrointestinal, or urinary tracts) to prevent a serious
infection of the heart (endocarditis) that can result from bacteria entering the bloodstream during such procedures. The dentist or healthcare professional performing theprocedure generally prescribes the antibiotic. A wallet card for people with heart valve
problems (including instructions regarding the types of procedures for which antibiotic
prescriptions are necessary) is available from the American Heart Association website
at: www.americanheart.org/downloadable/heart/1023826501754walletcard.pdf
What monitoring is required for potential heart problems?
Anyone treated with anthracycline chemotherapy or chest radiation for childhood
cancer should have a yearly check-up with special attention to any symptoms relating
to the heart. In addition, an electrocardiogram (ECG, EKG) should be done at thetime the survivor enters long-term follow-up (usually about 2 years from completion oftherapy). An echocardiogram or MUGA scan is also recommended at the first long-term
follow-up visit, then according to the following schedule (or as recommended by yourhealthcare provider):

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Healthy living after treatment for childhood cancer

Schedule for Echocardiogram or MUGA Scans
Age at treatment*< 1 year

Chest radiation

Total
anthracycline
dose**

Recommended
frequency of
ECHO or MUGA***

Yes

Any

Every year

No

< 200 mg/m2

Every 2 years≥ 200 mg/m2

Every year

Any

Every year

<100 mg/m2

Every 5 years≥100 to < 300 mg/m2

Every 2 years≥300 mg/m2

Every year

<300 mg/m2

Every 2 years≥ 300 mg/m2

Every year

< 200 mg/m2

Every 5 years≥ 200 to < 300 mg/m2

Every 2 years≥ 300 mg/m2

Every yearYes
1 to 4 years oldNoYes≥ 5 years old
No* age at first treatment with anthracycline or chest radiation (whichever was given first)** based on total doses of doxorubicin/daunorubicin or the equivalent doses of other anthracyclines***MUGA scans may be used for patients who received anthracycline chemotherapy without radiation;
Echocardiograms are the preferred test for those who received radiation involving the heart, since the test
provides more detailed information regarding structural issues, including valve structures.

Survivors who received radiation at a dose of 40 Gy (4000 cGy) or higher to theheart or surrounding tissues or radiation at a dose of 30 Gy (3000 cGy) or higher
plus anthracycline chemotherapy may be advised to undergo evaluation by a
cardiologist for stress testing 5 to 10 years following radiation, with repeat testing as
recommended by the cardiologist.
Survivors who received radiation to the heart or surrounding tissues should also have ablood test to check for other cardiac risk factors (lipid profile and fasting glucose)every 3 to 5 years.

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Healthy living after treatment for childhood cancer

Heart Health
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Additional evaluation by a cardiologist is recommended for female survivors whoare pregnant or planning pregnancy and received any of the following therapy:
Anthracycline chemotherapy at a dose of 300 mg/m2 or more
 Radiation at a dose of 30 Gy (3000 cGy) or higher to the heart or surrounding
tissues Radiation to the heart (at any dose) in combination with anthracycline
chemotherapy or high doses of cyclophosphamide (Cytoxan®)Heart monitoring may be necessary due to the extra strain on the heart during the laterstages of pregnancy and during labor and delivery. Suggested monitoring includes an
echocardiogram before and periodically during pregnancy, especially during the third
trimester, and cardiac monitoring during labor and delivery.
How are the heart tests done?
An electrocardiogram (ECG, EKG) is a test used to evaluate heart rate and rhythm.
Electrodes (small sticky patches) are placed on the chest, arms, and legs. Wires areattached to the electrodes and the electrical impulses of the heart are then recorded.
An echocardiogram (heart ultrasound) is used to test the muscle function of the heartand how well the heart pumps. The person lies on a table and has conductive jelly
applied to the chest. Then a transducer (device that emits the ultrasound waves) is
placed on the chest to obtain different views of the heart. Slight pressure is applied on
the transducer and can sometimes cause discomfort. The test results are displayedon videotape and photographed for the doctor to study later. Many measurements
are done during this test to help find out if the heart muscle is pumping blood well. The
ultrasound test also looks at the valves of the heart to see that they open and close
normally. Electrodes are usually placed on the chest to monitor the heart’s electricalimpulses during the test.
A MUGA (multiple-gated acquisition) scan is another way of testing the motion of theheart and how well it pumps blood to the body. During this test, a small amount ofradioactive isotope is injected into a vein. The person then lies on a table and a special
camera moves above the table to obtain pictures of the heart in motion. Electrodes arealso placed on the chest to monitor the heart’s electrical impulses during the test.
A cardiac stress test measures heart function during periods when the heart isworking hard. During this test, the heart and blood pressure are usually monitored while
the person walks on a treadmill.

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Healthy living after treatment for childhood cancer

Heart Health
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What happens if a problem with the heart is detected?
Your healthcare provider will advise you about the follow-up care you need. Sometimes,
a referral to a cardiologist (heart specialist) is needed for additional evaluation and/or
treatment with medications.
What can be done to prevent heart problems?
With increasing age, the risk of certain types of heart disease (such as heart attacks andhardening of the arteries) also increases. Factors that may increase the risk of heart
problems include smoking, being overweight, eating a high fat diet, and not exercising.
Medical conditions that increase the risk include diabetes, high blood pressure, andhigh blood cholesterol. You can reduce your risk of heart problems by:
Not smoking (or quitting if you currently smoke).
 Staying at a healthy body weight.
 Limiting the fat in your diet to no more than 30% of calories.
 Exercising moderately for at least 30 minutes on most days of the week.


If you have diabetes, high blood pressure, or high blood cholesterol, keep these undergood control with diet or medication as recommended by your healthcare provider. Be
sure to promptly report any symptoms of heart problems to your healthcare provider.

Written by Debra L. Friedman MD, ACCESS Cancer Survivorship Program, Children’s
Hospital and Regional Medical Center, Seattle Washington, Melissa M. Hudson MD,
After Completion of Therapy (ACT) Clinic, St. Jude Children’s Research Hospital,
Memphis, TN, and Wendy Landier RN, MSN, CPNP, CPON®, Survivorship Clinic, City of
Hope National Medical Center, Duarte, CA
Reviewed by: Roberta G. Williams MD, Julie Blatt MD, Sarah Bottomley MN, RN, CPNP,
CPON®, and Joan Darling PhD.
Illustrated by: Devika Bhatia.

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Healthy living after treatment for childhood cancer

Heart Health
Version 2.0 - 3/06

Additional health information for childhood cancer survivors is available atwww.survivorshipguidelines.org
Note: Throughout this Health Links series, the term "childhood cancer" is used to designate pediatric cancers that may
occur during childhood, adolescence, or young adulthood. Health Links are designed to provide health information
for survivors of pediatric cancer, regardless of whether the cancer occurred during childhood, adolescence, or young
adulthood.
Disclaimer and Notice of Proprietary Rights
Introduction to Late Effects Guidelines and Health Links: The "Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers" and accompanying"Health Links" were developed by the Children’s Oncology Group as a collaborative effort of the Late Effects Committee and Nursing Discipline.
For Informational Purposes Only: The information and contents of each document or series of documents made available from by the Children’s Oncology Group relating to lateeffects of cancer treatment and care or containing the title "Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers" or the title "HealthLink", whether available in print or electronic format (including any digital format, e-mail transmission, or download from the website), shall be known hereinafter as "Informational
Content". All Informational Content is for informational purposes only. The Informational Content is not intended to substitute for medical advice, medical care, diagnosis or treatment obtained from a physician or health care provider.
To cancer patients (if children, their parents or legal guardians): Please seek the advice of a physician or other qualified health provider with any questions you may haveregarding a medical condition and do not rely on the Informational Content. The Children’s Oncology Group is a research organization and does not provide individualized
medical care or treatment.
To physicians and other healthcare providers: The Informational Content is not intended to replace your independent clinical judgment, medical advice, or to exclude
other legitimate criteria for screening, health counseling, or intervention for specific complications of childhood cancer treatment. Neither is the Informational Content intended
to exclude other reasonable alternative follow-up procedures. The Informational Content is provided as a courtesy, but not intended as a sole source of guidance inthe evaluation of childhood cancer survivors. The Children’s Oncology Group recognizes that specific patient care decisions are the prerogative of the patient, family, andhealthcare provider.
No endorsement of any specific tests, products, or procedures is made by Informational Content, the Children’s Oncology Group, or affiliated party or member of the Children’s
Oncology Group.
No Claim to Accuracy or Completeness: While the Children's Oncology Group has made every attempt to assure that the Informational Content is accurate and complete as of thedate of publication, no warranty or representation, express or implied, is made as to the accuracy, reliability, completeness, relevance, or timeliness of such Informational Content.
No Liability on Part of Children’s Oncology Group and Related Parties/ Agreement to Indemnify and Hold Harmless the Children’s Oncology Group and Related Parties:
No liability is assumed by the Children's Oncology Group or any affiliated party or member thereof for damage resulting from the use, review, or access of the Informational Content.
You agree to the following terms of indemnification: (i) "Indemnified Parties" include authors and contributors to the Informational Content, all officers, directors, representatives,
employees, agents, and members of the Children’s Oncology Group and affiliated organizations; (ii) by using, reviewing, or accessing the Informational Content, you agree, at yourown expense, to indemnify, defend and hold harmless Indemnified Parties from any and all losses, liabilities, or damages (including attorneys' fees and costs) resulting from any andall claims, causes of action, suits, proceedings, or demands related to or arising out of use, review or access of the Informational Content.
Proprietary Rights: The Informational Content is subject to protection under the copyright law and other intellectual property law in the United States and worldwide. The Children's
Oncology Group retains excursive copyright and other right, title, and interest to the Informational Content and claims all intellectual property rights available under law. You hereby agree to help the Children’s Oncology Group secure all copyright and intellectual property rights for the benefit of the Children’s Oncology Group by taking additional action
at a later time, action which could include signing consents and legal documents and limiting dissemination or reproduction of Informational Content.

Copyright 2006 © Children’s Oncology GroupAll rights reserved worldwide

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Health Link

Healthy living after treatment for childhood cancer

Hepatitis
Version 2.0 - 3/06

Hepatitis after Childhood Cancer
Treatment for childhood cancer often requires transfusions of blood and blood products.
Unfortunately, some of these life-saving blood products may have contained viruses
that can cause hepatitis (infection of the liver). There are two main types of hepatitis thatcan be transmitted through blood products (hepatitis B and hepatitis C). Before theblood supply was routinely screened for these infections, people who received blood
products may have been infected with these viruses. In the United States, routine
screening of blood donors for hepatitis B began in 1971. The most accurate screening
test for hepatitis C has been in use since 1992. Survivors who received blood products
prior to these dates may have been infected with these viruses. (Note: The dates thatblood donor screening for hepatitis began in countries outside of the United States may
be different.)
Hepatitis B and C can also be spread through other types of blood contact (such as
needle-sharing among drug users, tattoos, body piercing, kidney dialysis and organtransplantation). These infections can also be spread through sexual contact, or passed
from mother to newborn baby during the birth process, but this is more likely to occur
with hepatitis B than with hepatitis C.
What is the liver?
The liver is a triangular-shaped organ tucked under the ribcage on the right side of the
body. In an average adult, the liver is about the size of a football and weighs about threepounds. It is responsible for filtering out toxins from the blood, aiding with digestion
and metabolism, and producing many important substances including blood-clotting
proteins.
What are the signs and symptoms of hepatitis?
Many people do not have symptoms of hepatitis when first infected. Some people
have symptoms similar to the flu, such as fatigue, loss of appetite, nausea, vomiting,or low-grade fever. Some people may have symptoms indicating that the liver is notworking well, such as yellow eyes and skin (jaundice), dark urine, severe itching, or pale(clay-colored) stools. In rare cases, people may become seriously ill and develop liver
failure.
Hepatitis may completely resolve and cause no further health problems. Unfortunately,
many people who become infected with hepatitis B or C during childhood become"chronically" infected. People with chronic hepatitis may have no symptoms and feel

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well, but they are at risk for scarring (cirrhosis) of the liver and other complications. In
rare cases, liver cancer can develop. People with chronic hepatitis infections are also
at risk for spreading the infection to others.
What are common findings in people with hepatitis?
Most people with chronic hepatitis have no signs or symptoms. Chronic infection
over a long time may cause progressive liver damage. Signs of liver damage include
enlargement of the liver and spleen, swelling or collection of fluid in the abdomen,yellow color of the eyes and skin (jaundice), and problems with blood clotting.
What tests are done to check for hepatitis?
A blood test can be done to check for viral hepatitis. A positive antibody test for
hepatitis B or C means that the person has been exposed to the virus. Additional
testing may then be done to determine if there is an active infection.
Who is at risk for hepatitis B and C?
Anyone who received the following blood or serum products are at risk for hepatitis B(if transfused before 1972) and hepatitis C (if transfused before 1993):
Packed red blood cells
Whole blood White blood cells (granulocytes)
 Platelets
 Fresh frozen plasma Cryoprecipitate Immunoglobulin preparations (IVIG, VZIG) Bone marrow or stem cells from an allogeneic donor (someone other than your
self)



Other risk factors include:
Blood clotting factors (such as Factor VIII or Factor IX) made before 1987
 Solid organ transplants (such as kidney, liver, or heart) before 1993
 Long-term kidney dialysis (lasting for at least several months)
 Shooting or snorting drugs
 Body piercing, tattoos
 Sharing razors, nail clippers, or toothbrushes with people who have hepatitis
 Occupational exposure to blood and body fluids


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Health Link

Healthy living after treatment for childhood cancerHepatitis
Version 2.0 - 3/06

High-risk sexual behavior (such as having multiple sexual partners, not using a
condom, or having anal sex)

What follow up is needed for those at risk?


Anyone who is at risk for hepatitis B or C should have blood tests done to see ifthey are infected.

If you have chronic hepatitis, you should also:
See a liver specialist for evaluation and possible treatment.
 Tell your healthcare providers about all over-the-counter medications andsupplements that you are taking.
 Do not drink alcohol, which can cause further liver damage.
 Avoid over-the-counter pain or fever-reducing medications containing
acetaminophen (such as Tylenol® or "aspirin-free" products).
 Have a blood test to see if you have immunity to hepatitis A and B. If you do nothave immunity, get immunized against these common infections in order toprotect your liver (there is currently no vaccine to protect against hepatitis C).
 Discuss your hepatitis status with your healthcare providers. (If you are pregnant,discuss this with both your obstetrician and the baby’s pediatrician).


How can the spread of chronic hepatitis be prevented?
Hepatitis B and C are not spread by casual contact, such as hugging or shaking hands.
However, if you have hepatitis B or C, in order to prevent spreading the infection toothers you should:
Avoid direct contact of your blood and body fluids with others.
 Clean any spilled blood or body fluids with bleach.
 Cover cuts or other open sores.
 Avoid sharing sharp personal objects, such as razors, toothbrushes, nail clippers,
ear or body rings, or any object that may come in contact with blood.
 Be sure that new sterile needles are used for body piercing, injections, tattoos, or
acupuncture. Never share needles.
 Make sure all close household members and sexual partners are screened forhepatitis B. If they do not have immunity, they should be given the hepatitis B
vaccine.
 If you are sexually active, use barrier precautions (such as latex condoms) during
intimate sexual contact.
 Talk with your healthcare provider about whether your sexual partner should beCopyright 2006 © Children’s Oncology GroupAll rights reserved worldwide

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Hepatitis
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tested for hepatitis C.
What else can I do to keep my liver healthy?
Drink plenty of water.
 Eat a well-balanced, high-fiber diet.
 Cut down on fatty, salty, smoked and cured foods.
 Do not take more than the recommended doses of medications.
 Avoid taking unnecessary medications.
 Do not mix drugs and alcohol.
 Do not use illegal street drugs.
 Be careful about using herbs and natural supplements, especially when combinedwith medications.
 Avoid exposure to chemicals (solvents, aerosol cleaners, insecticides, paintthinners, and other toxins) that can be harmful to the liver. If you must use thesesubstances, wear a mask and gloves and work in a well-ventilated area.


Written by Wendy Landier, RN, MSN, CPNP, CPON®, Survivorship Clinic, City of Hope
National Medical Center, Duarte, CA.
Reviewed by: Melissa M. Hudson MD, Smita Bhatia MD, MPH, and Lisa Bashore MS,
RN, CPNP, CPON®.

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Version 2.0 - 3/06

Additional health information for childhood cancer survivors is available atwww.survivorshipguidelines.org
Note: Throughout this Health Links series, the term "childhood cancer" is used to designate pediatric cancers that may
occur during childhood, adolescence, or young adulthood. Health Links are designed to provide health information
for survivors of pediatric cancer, regardless of whether the cancer occurred during childhood, adolescence, or young
adulthood.
Disclaimer and Notice of Proprietary Rights
Introduction to Late Effects Guidelines and Health Links: The "Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers" and accompanying"Health Links" were developed by the Children’s Oncology Group as a collaborative effort of the Late Effects Committee and Nursing Discipline.
For Informational Purposes Only: The information and contents of each document or series of documents made available from by the Children’s Oncology Group relating to lateeffects of cancer treatment and care or containing the title "Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers" or the title "HealthLink", whether available in print or electronic format (including any digital format, e-mail transmission, or download from the website), shall be known hereinafter as "Informational
Content". All Informational Content is for informational purposes only. The Informational Content is not intended to substitute for medical advice, medical care, diagnosis or treatment obtained from a physician or health care provider.
To cancer patients (if children, their parents or legal guardians): Please seek the advice of a physician or other qualified health provider with any questions you may haveregarding a medical condition and do not rely on the Informational Content. The Children’s Oncology Group is a research organization and does not provide individualized
medical care or treatment.
To physicians and other healthcare providers: The Informational Content is not intended to replace your independent clinical judgment, medical advice, or to exclude
other legitimate criteria for screening, health counseling, or intervention for specific complications of childhood cancer treatment. Neither is the Informational Content intended
to exclude other reasonable alternative follow-up procedures. The Informational Content is provided as a courtesy, but not intended as a sole source of guidance inthe evaluation of childhood cancer survivors. The Children’s Oncology Group recognizes that specific patient care decisions are the prerogative of the patient, family, andhealthcare provider.
No endorsement of any specific tests, products, or procedures is made by Informational Content, the Children’s Oncology Group, or affiliated party or member of the Children’s
Oncology Group.
No Claim to Accuracy or Completeness: While the Children's Oncology Group has made every attempt to assure that the Informational Content is accurate and complete as of thedate of publication, no warranty or representation, express or implied, is made as to the accuracy, reliability, completeness, relevance, or timeliness of such Informational Content.
No Liability on Part of Children’s Oncology Group and Related Parties/ Agreement to Indemnify and Hold Harmless the Children’s Oncology Group and Related Parties:
No liability is assumed by the Children's Oncology Group or any affiliated party or member thereof for damage resulting from the use, review, or access of the Informational Content.
You agree to the following terms of indemnification: (i) "Indemnified Parties" include authors and contributors to the Informational Content, all officers, directors, representatives,
employees, agents, and members of the Children’s Oncology Group and affiliated organizations; (ii) by using, reviewing, or accessing the Informational Content, you agree, at yourown expense, to indemnify, defend and hold harmless Indemnified Parties from any and all losses, liabilities, or damages (including attorneys' fees and costs) resulting from any andall claims, causes of action, suits, proceedings, or demands related to or arising out of use, review or access of the Informational Content.
Proprietary Rights: The Informational Content is subject to protection under the copyright law and other intellectual property law in the United States and worldwide. The Children's
Oncology Group retains excursive copyright and other right, title, and interest to the Informational Content and claims all intellectual property rights available under law. You hereby agree to help the Children’s Oncology Group secure all copyright and intellectual property rights for the benefit of the Children’s Oncology Group by taking additional action
at a later time, action which could include signing consents and legal documents and limiting dissemination or reproduction of Informational Content.

Copyright 2006 © Children’s Oncology GroupAll rights reserved worldwide

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Health Link

Healthy living after treatment for childhood cancer

Hyperprolactinemia
Version 2.0 - 3/06

Endocrine Problems after Childhood Cancer:
Hyperprolactinemia
Some people who were treated for cancer during childhood may develop endocrine(hormone) problems as a result of changes in the function of a complex system ofglands known as the endocrine system.
What is the endocrine system?
The endocrine system is a group of glands that regulate many body functions including
growth, puberty, energy level, urine production, and stress response. Glands ofthe endocrine system include the pituitary, hypothalamus, thyroid, adrenals,
pancreas, ovaries (in females), and testes (in males). The hypothalamus and pituitary
are sometimes called the "master glands" because they control many of the otherglands in the endocrine system. Unfortunately, some treatments given for childhood
cancer can damage the endocrine system, resulting in a variety of problems.

What are hormones?
Hormones are chemical messengers that carry information from the endocrine glands
through the bloodstream to the body’s cells. The endocrine system makes many hormones (such as growth hormone, sex hormones, adrenal and thyroid hormones) thatwork together to maintain specific bodily functions.

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Healthy living after treatment for childhood cancer

Hyperprolactinemia
Version 2.0 - 3/06

What is hyperprolactinemia?
Hyperprolactinemia is a condition that occurs when there is too much of the hormone
known as prolactin in the body. Prolactin is a hormone made by the pituitary gland.
Prolactin is important in breast development in females during pregnancy and milk
production after childbirth. Too much prolactin can cause problems with functioning of
the ovaries (in females) or testicles (in males). In females, high levels of prolactin
can cause galactorrhea (breast milk production by a person who is not breastfeeding)and irregular or absent menstrual periods. In males, high levels of prolactin can cause
galactorrhea and decreased testosterone levels that may result in a diminished sex drive(libido). In preteens and teens, high prolactin levels may interfere with normal pubertal
development.
Risk factors for hyperprolactinemia
The risk of developing hyperprolactinemia after treatment for childhood cancer is quite
low. Risk factors for its development include radiation to the pituitary gland in very highdoses, the development of a second tumor (usually non-cancerous) in the pituitary
region, pregnancy, and certain medications and drugs (such as marijuana and alcohol).
Rarely, thyroid failure (a condition in which the thyroid gland fails to secrete enoughthyroid hormone) can cause hyperprolactinemia. Correcting the thyroid problem maycorrect the high prolactin level.
Recommended screening
All childhood cancer survivors should have a yearly comprehensive health check-up. If
hyperprolactinemia is suspected, a prolactin blood test will be done. If a problem is
detected, your healthcare provider may order additional tests (such as a CT scan or
MRI of the brain) and refer you to an endocrinologist (a doctor who specializes in thetreatment of hormone problems) for further evaluation and treatment.
How is hyperprolactinemia treated?
Endocrinologists may use medications to suppress prolactin production. If a tumor is
detected, surgery or radiation is sometimes needed. The length and type of treatment
varies for each patient and should be discussed with your doctor.

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Healthy living after treatment for childhood cancer

Hyperprolactinemia
Version 2.0 - 3/06

Written by Debra Eshelman, RN, MSN, CPNP, After the Cancer Experience (ACE)
Pediatric and Young Adult Survivor Programs, Children’s Medical Center of Dallas andthe University of Texas Southwestern Medical Center, Dallas, TX.
Reviewed by Lillian R. Meacham MD, Charles Sklar MD, Julie Blatt MD, Melissa M.
Hudson MD, Winnie Kittiko RN, MS, and Susan Shaw, RN, MS, PNP.
Illustrated by Devika Bhatia.

Additional health information for childhood cancer survivors is available atwww.survivorshipguidelines.org
Note: Throughout this Health Links series, the term "childhood cancer" is used to designate pediatric cancers that may
occur during childhood, adolescence, or young adulthood. Health Links are designed to provide health information
for survivors of pediatric cancer, regardless of whether the cancer occurred during childhood, adolescence, or young
adulthood.
Disclaimer and Notice of Proprietary Rights
Introduction to Late Effects Guidelines and Health Links: The "Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers" and accompanying"Health Links" were developed by the Children’s Oncology Group as a collaborative effort of the Late Effects Committee and Nursing Discipline.
For Informational Purposes Only: The information and contents of each document or series of documents made available from by the Children’s Oncology Group relating to lateeffects of cancer treatment and care or containing the title "Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers" or the title "HealthLink", whether available in print or electronic format (including any digital format, e-mail transmission, or download from the website), shall be known hereinafter as "Informational
Content". All Informational Content is for informational purposes only. The Informational Content is not intended to substitute for medical advice, medical care, diagnosis or treatment obtained from a physician or health care provider.
To cancer patients (if children, their parents or legal guardians): Please seek the advice of a physician or other qualified health provider with any questions you may haveregarding a medical condition and do not rely on the Informational Content. The Children’s Oncology Group is a research organization and does not provide individualized
medical care or treatment.
To physicians and other healthcare providers: The Informational Content is not intended to replace your independent clinical judgment, medical advice, or to exclude
other legitimate criteria for screening, health counseling, or intervention for specific complications of childhood cancer treatment. Neither is the Informational Content intended
to exclude other reasonable alternative follow-up procedures. The Informational Content is provided as a courtesy, but not intended as a sole source of guidance inthe evaluation of childhood cancer survivors. The Children’s Oncology Group recognizes that specific patient care decisions are the prerogative of the patient, family, andhealthcare provider.
No endorsement of any specific tests, products, or procedures is made by Informational Content, the Children’s Oncology Group, or affiliated party or member of the Children’s
Oncology Group.
No Claim to Accuracy or Completeness: While the Children's Oncology Group has made every attempt to assure that the Informational Content is accurate and complete as of thedate of publication, no warranty or representation, express or implied, is made as to the accuracy, reliability, completeness, relevance, or timeliness of such Informational Content.
No Liability on Part of Children’s Oncology Group and Related Parties/ Agreement to Indemnify and Hold Harmless the Children’s Oncology Group and Related Parties:
No liability is assumed by the Children's Oncology Group or any affiliated party or member thereof for damage resulting from the use, review, or access of the Informational Content.
You agree to the following terms of indemnification: (i) "Indemnified Parties" include authors and contributors to the Informational Content, all officers, directors, representatives,
employees, agents, and members of the Children’s Oncology Group and affiliated organizations; (ii) by using, reviewing, or accessing the Informational Content, you agree, at yourown expense, to indemnify, defend and hold harmless Indemnified Parties from any and all losses, liabilities, or damages (including attorneys' fees and costs) resulting from any andall claims, causes of action, suits, proceedings, or demands related to or arising out of use, review or access of the Informational Content.
Proprietary Rights: The Informational Content is subject to protection under the copyright law and other intellectual property law in the United States and worldwide. The Children's
Oncology Group retains excursive copyright and other right, title, and interest to the Informational Content and claims all intellectual property rights available under law. You hereby agree to help the Children’s Oncology Group secure all copyright and intellectual property rights for the benefit of the Children’s Oncology Group by taking additional action
at a later time, action which could include signing consents and legal documents and limiting dissemination or reproduction of Informational Content.

Copyright 2006 © Children’s Oncology GroupAll rights reserved worldwide

Page 3 of 3

Health Link

Healthy living after treatment for childhood cancer

Hypopituitarism
Version 2.0 - 3/06

Endocrine Problems after Childhood Cancer:
Hypopituitarism
Some people who were treated for cancer during childhood may develop endocrine(hormone) problems as a result of changes in the function of a complex system ofglands known as the endocrine system.
What is the endocrine system?
The endocrine system is a group of glands that regulate many body functions including
growth, puberty, energy level, urine production, and stress response. Glands ofthe endocrine system include the pituitary, hypothalamus, thyroid, adrenals,
pancreas, ovaries (in females), and testes (in males). The hypothalamus and pituitary aresometimes called the "master glands" because they control many of the other glands inthe endocrine system. Unfortunately, some treatments given for childhood cancer candamage the endocrine system, resulting in a variety of problems.

What are hormones?
Hormones are chemical messengers that carry information from the endocrine glands
through the bloodstream to the body’s cells. The endocrine system makes many
hormones (such as growth hormone, sex hormones, adrenal and thyroid hormones) thatwork together to maintain specific bodily functions.
Copyright 2006 © Children’s Oncology GroupAll rights reserved worldwide

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Healthy living after treatment for childhood cancer

Hypopituitarism
Version 2.0 - 3/06

What is hypopituitarism?
Hypopituitarism is the decrease or lack of one or more of the pituitary hormones. The
lack of three or more of the pituitary hormones is referred to as panhypopituitarism.
Pituitary hormones include:
Growth hormone (GH) – stimulates the growth of bone and other body tissues,
and also affects how the body uses fat, makes muscle, strengthens bones, andgenerally influences overall health throughout life Adrenocorticotropic hormone (ACTH) – stimulates the adrenal gland to produce
cortisol Thyroid stimulating hormone (TSH) – stimulates the thyroid gland to produce
thyroid hormones Reproductive hormones (gonadotropins), including luteinizing hormone (LH)and follicle stimulating hormone (FSH) – stimulate the testes and ovaries tomake sex hormones
 Antidiuretic hormone (ADH) – helps to control the balance of water in the bodyby controlling urine output
 Prolactin – controls milk production in women who are breastfeedingWhat causes hypopituitarism?
Risk factors related to childhood cancer treatment include:
Radiation to the brain, especially in doses of 40 Gy (4000 cGy/rads) or higher
 Surgical removal of the pituitary gland

Other risk factors for pituitary problems include infections, severe head trauma, or thelack of development of the pituitary from birth.
What are the symptoms of hypopituitarism?
The symptoms depend on the specific hormones that are lacking. One or more of thefollowing hormones may be affected:
Adrenocorticotropic hormone (ACTH) deficiency:
The adrenal glands (located on top of the kidneys) are stimulated by ACTH to produce
cortisol. If the pituitary gland doesn’t make enough ACTH, then cortisol will not be
made. Cortisol helps keep the body’s blood sugar at a normal level and helps the bodydeal with physical stress, such as fever or injury. For more information about ACTH deficiency, see the related Health Link: Central Adrenal Insufficiency.

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Healthy living after treatment for childhood cancer

Hypopituitarism
Version 2.0 - 3/06

Growth hormone (GH) deficiency:
Growth hormone affects the growth of body tissues and bone as well as fat, muscle, andsugar metabolism. For more information about growth hormone problems, see therelated Health Link: Growth Hormone Deficiency.
Gonadotropin (FSH, LH) deficiency:
LH and FSH control the production of male and female hormones. In males LH andFSH stimulate the testicles to make testosterone, and in females LH and FSH stimulate
the ovaries to make estrogen and progesterone, resulting in development of sexual
characteristics during puberty. If the body doesn’t have enough LH and FSH duringpuberty, there can be problems with pubertal development. For more information aboutmale and female hormonal issues, see the related Health Links: Male Health Issues afterChildhood Cancer Treatment and Female Health Issues after Childhood Cancer
Treatment.
Thyroid Stimulating Hormone (TSH) deficiency:
TSH stimulates the thyroid gland to release thyroxin, which is important for brain
development, growth, and metabolism. People with too little thyroxin may develop thefollowing symptoms: tiredness, sleeping too much, weight gain, slow growth, poor
appetite, cold intolerance, dry skin, constipation, or coarse, dry thin hair. For more
information about thyroid problems, see the related Health Link: Thyroid Problems afterChildhood Cancer.
What screening is recommended?
All cancer survivors should have a yearly physical examination including measurementof height and weight, assessment of their progression through puberty, and assessmentof overall well-being. If a hormone problem, such as hypopituitarism is suspected, further tests may be done and a referral may be made to an endocrinologist (doctor who
specializes in hormone problems).

Written by Debra Eshelman, RN, MSN, CPNP, After the Cancer Experience (ACE)
Pediatric and Young Adult Survivor Programs, Children’s Medical Center of Dallas andthe University of Texas Southwestern Medical Center, Dallas, TX.
Reviewed by Lillian R. Meacham MD, Charles Sklar MD, Julie Blatt MD, Melissa M.
Hudson MD, Winnie Kittiko, RN, MS, and Susan Shaw, RN, MS, PNP.
Illustrated by Devika Bhatia.

Copyright 2006 © Children’s Oncology GroupAll rights reserved worldwide

Page 3 of 4

Health Link

Healthy living after treatment for childhood cancer

Hypopituitarism
Version 2.0 - 3/06

Additional health information for childhood cancer survivors is available atwww.survivorshipguidelines.org
Note: Throughout this Health Links series, the term "childhood cancer" is used to designate pediatric cancers that may
occur during childhood, adolescence, or young adulthood. Health Links are designed to provide health information
for survivors of pediatric cancer, regardless of whether the cancer occurred during childhood, adolescence, or young
adulthood.
Disclaimer and Notice of Proprietary Rights
Introduction to Late Effects Guidelines and Health Links: The "Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers" and accompanying"Health Links" were developed by the Children’s Oncology Group as a collaborative effort of the Late Effects Committee and Nursing Discipline.
For Informational Purposes Only: The information and contents of each document or series of documents made available from by the Children’s Oncology Group relating to lateeffects of cancer treatment and care or containing the title "Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers" or the title "HealthLink", whether available in print or electronic format (including any digital format, e-mail transmission, or download from the website), shall be known hereinafter as "Informational
Content". All Informational Content is for informational purposes only. The Informational Content is not intended to substitute for medical advice, medical care, diagnosis or treatment obtained from a physician or health care provider.
To cancer patients (if children, their parents or legal guardians): Please seek the advice of a physician or other qualified health provider with any questions you may haveregarding a medical condition and do not rely on the Informational Content. The Children’s Oncology Group is a research organization and does not provide individualized
medical care or treatment.
To physicians and other healthcare providers: The Informational Content is not intended to replace your independent clinical judgment, medical advice, or to exclude
other legitimate criteria for screening, health counseling, or intervention for specific complications of childhood cancer treatment. Neither is the Informational Content intended
to exclude other reasonable alternative follow-up procedures. The Informational Content is provided as a courtesy, but not intended as a sole source of guidance inthe evaluation of childhood cancer survivors. The Children’s Oncology Group recognizes that specific patient care decisions are the prerogative of the patient, family, andhealthcare provider.
No endorsement of any specific tests, products, or procedures is made by Informational Content, the Children’s Oncology Group, or affiliated party or member of the Children’s
Oncology Group.
No Claim to Accuracy or Completeness: While the Children's Oncology Group has made every attempt to assure that the Informational Content is accurate and complete as of thedate of publication, no warranty or representation, express or implied, is made as to the accuracy, reliability, completeness, relevance, or timeliness of such Informational Content.
No Liability on Part of Children’s Oncology Group and Related Parties/ Agreement to Indemnify and Hold Harmless the Children’s Oncology Group and Related Parties:
No liability is assumed by the Children's Oncology Group or any affiliated party or member thereof for damage resulting from the use, review, or access of the Informational Content.
You agree to the following terms of indemnification: (i) "Indemnified Parties" include authors and contributors to the Informational Content, all officers, directors, representatives,
employees, agents, and members of the Children’s Oncology Group and affiliated organizations; (ii) by using, reviewing, or accessing the Informational Content, you agree, at yourown expense, to indemnify, defend and hold harmless Indemnified Parties from any and all losses, liabilities, or damages (including attorneys' fees and costs) resulting from any andall claims, causes of action, suits, proceedings, or demands related to or arising out of use, review or access of the Informational Content.
Proprietary Rights: The Informational Content is subject to protection under the copyright law and other intellectual property law in the United States and worldwide. The Children's
Oncology Group retains excursive copyright and other right, title, and interest to the Informational Content and claims all intellectual property rights available under law. You hereby agree to help the Children’s Oncology Group secure all copyright and intellectual property rights for the benefit of the Children’s Oncology Group by taking additional action
at a later time, action which could include signing consents and legal documents and limiting dissemination or reproduction of Informational Content.

Copyright 2006 © Children’s Oncology GroupAll rights reserved worldwide

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Health Link

Healthy living after treatment for childhood cancer

Intro to LTFU
Version 2.0 - 3/06

Introduction to Long-Term Follow-Up after Treatment
for Childhood, Adolescent, or Young Adult Cancer
Congratulations! You have "graduated" to long-term follow-up. You can now think ofyourself as a cancer survivor, not as a cancer patient! In long-term follow-up, thegoal is to help you stay as healthy as possible—to stay well and to do well in school or
at work.
Even though you are a cancer survivor, it is still important that you continue to haveregular medical care. In some cases, your care may continue at the same hospital or
clinic where you received your treatment, but you may be seen by different doctors andnurses in a special Long-Term Follow-Up Program. In other cases, you may receive
care from a healthcare provider working in partnership with your treatment center,or from a provider who is closer to your home. No matter where you receive your care,
it is important that you learn what you need to know about your treatment and thefollow-up care that you need so that you can stay in the very best health possible.
Your cancer treatment summary
When you graduate to long-term follow-up, it is important that you get a record of thecancer treatment that you received. This record, known as a Summary of Cancer
Treatment, should contain the following information:
Name of the disease that you had, the date when you were diagnosed, and thesite/stage of the disease- Date(s) and description(s) of any relapses- Name, address, and phone number of hospital(s) or clinic(s) where you received
your care- Name, address, and phone numbers of your cancer doctor (oncologist) andother health team members responsible for your care
- Date that your cancer treatment was completed
 Names of all the chemotherapy medicines that you received and specificinformation about certain chemotherapy drugs as follows:- Total doses of anthracycline chemotherapy (such as doxorubicin or
daunorubicin)- For cytarabine and methotrexate: How they were given (such as by mouth orinto the vein), and if into the vein, whether you received "high dose" (1000mg/m2 or more in any single dose) or "standard dose" therapy- For carboplatin: Whether or not the dose was myeloablative (given during
preparation for a bone marrow, cord blood, or stem cell transplant)

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- Total doses of other chemotherapy agents and how they were given should be
included, if available Radiation therapy summary, including- Part(s) of body that received radiation (radiation site or field)- Total radiation dose (including any boost doses) to each field Name and dates of any surgeries that you had Whether or not you received a hematopoietic cell transplant (bone marrow, cord
blood, or stem cell transplant), and if so, whether or not you developed chronic
Graft-versus-Host Disease (cGVHD)
 Names of any other cancer treatment(s) that you received (such as radioiodine
therapy or bioimmunotherapy) Names and dates of any significant complication(s), and treatments received forthe complication(s)Keep a copy of your cancer treatment summary in a safe place, and give a copy to eachof your healthcare providers.
Your follow-up schedule
Most cancer survivors need long-term follow-up visits about once a year. During
these visits, it is important to talk about your progress and check for problems that
can happen after treatment for cancer. Talk with your healthcare provider about yourindividual situation and determine a schedule for the follow-up care that best meets yourneeds.
Between visits
Once you "graduate" to long-term follow-up care, you will usually need to identify alocal healthcare provider that you can visit or call if you are injured or sick. Make an
appointment for a check-up with this healthcare provider so that they can get to know
you before an illness arises. If a problem comes up that may be related to your cancer
treatment, your local healthcare provider can discuss this with your long-term follow-up
team.
Late effects after treatment for childhood, adolescent, or young adult cancer
Problems that happen after treatment for cancer are known as "late effects."
Fortunately, most long-term survivors don’t have serious late effects, but it is importantto catch any problems early. You may have already learned about some of the possible
late effects that can happen after treatment for cancer. Some of the more common ones
are reviewed here.
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Healthy living after treatment for childhood cancer

Intro to LTFU
Version 2.0 - 3/06

GrowthTreatment for cancer during childhood, especially radiation to the brain or spine,
can sometimes slow or stunt growth. Yearly measurements help to predict whether
you will reach a normal height. If you are "at risk" for being short as an adult, yourhealthcare provider may also recommend other specialized tests and treatments.
Heart
A small percentage of survivors treated with chest radiation or certain chemotherapy
drugs known as "anthracyclines" (such as doxorubicin or daunomycin) haveproblems with the heart. This is most likely to happen in people who received
higher doses of these medicines, and in those who received their treatment before
their heart finished growing. Your healthcare provider may recommended tests tocheck your heart function, and may arrange for a cardiologist (heart specialist) to see
you if the tests show any sign of these problems.
Fertility
Radiation to the pelvis and certain anticancer drugs can affect sexual development
and reproduction. Some survivors may be at risk for delayed puberty, infertility(inability to have children), or early menopause. Check-ups and certain blood
tests can help determine if you have any of these problems. These issues areimportant, and if you have any concerns, you should be sure to discuss them withyour healthcare provider. If there is a problem, arrangements may be made for you
to see a specialist.
Thyroid
Head or neck radiation can sometimes cause the thyroid gland to stop working
properly. This gland helps regulate growth, weight, and the balance of bodychemicals. Blood tests can be done to check thyroid hormone levels. Low thyroid
levels are easily treated with oral medication.
Second Cancers
Some chemotherapy drugs and radiation can increase the risk of a second (different)
cancer. Some survivors may have genetic changes that put them at risk for second
cancers. Tobacco, excessive sun exposure, and other chemicals and behaviors canalso increase this risk. Talk with your healthcare provider about ways to lower yourrisk and to detect common cancers at an early stage.

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Healthy living after treatment for childhood cancer

Intro to LTFU
Version 2.0 - 3/06

School and Work
Problems with schoolwork or jobs can occur as a result of some types of cancer
treatment. Psychologists can work with your local school system to make sure thatany special needs are met. Also, financial assistance for education and job training
may be available through government programs. Social workers can help to explainthese programs.
Moving toward the future
Thinking about developing late effects after surviving cancer can be anxiety provoking.
But it is quite possible that you will NOT develop any serious complications. And if you
do, it is best to catch them early, so that you can begin treatment right away. So don’t
let anxiety get in the way of taking the very best care of your health.
Being treated for cancer at a young age is always a difficult experience. Having survived
that experience, you have learned many things. Most likely, you are a stronger personthan you were before you were diagnosed with cancer. As you move forward into yourfuture, use those strengths to your advantage. Make healthy choices. Keep your followup appointments. And always remember that YOU are the most important member ofyour healthcare team!

Written by Wendy Landier, RN, MSN, CPNP, CPON®, Survivorship Clinic, City of Hope
National Medical Center, Duarte, California. Portions adapted from "Introduction to theAfter Completion of Therapy Clinic," St. Jude Children’s Hospital, Memphis, TN, usedwith permission.
Reviewed by Melissa M. Hudson MD, Smita Bhatia MD, MPH, and Scott Hawkins
LMSW.

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Healthy living after treatment for childhood cancer

Intro to LTFU
Version 2.0 - 3/06

Additional health information for childhood cancer survivors is available atwww.survivorshipguidelines.org
Note: Throughout this Health Links series, the term "childhood cancer" is used to designate pediatric cancers that may
occur during childhood, adolescence, or young adulthood. Health Links are designed to provide health information
for survivors of pediatric cancer, regardless of whether the cancer occurred during childhood, adolescence, or young
adulthood.
Disclaimer and Notice of Proprietary Rights
Introduction to Late Effects Guidelines and Health Links: The "Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers" and accompanying"Health Links" were developed by the Children’s Oncology Group as a collaborative effort of the Late Effects Committee and Nursing Discipline.
For Informational Purposes Only: The information and contents of each document or series of documents made available from by the Children’s Oncology Group relating to lateeffects of cancer treatment and care or containing the title "Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers" or the title "HealthLink", whether available in print or electronic format (including any digital format, e-mail transmission, or download from the website), shall be known hereinafter as "Informational
Content". All Informational Content is for informational purposes only. The Informational Content is not intended to substitute for medical advice, medical care, diagnosis or treatment obtained from a physician or health care provider.
To cancer patients (if children, their parents or legal guardians): Please seek the advice of a physician or other qualified health provider with any questions you may haveregarding a medical condition and do not rely on the Informational Content. The Children’s Oncology Group is a research organization and does not provide individualized
medical care or treatment.
To physicians and other healthcare providers: The Informational Content is not intended to replace your independent clinical judgment, medical advice, or to exclude
other legitimate criteria for screening, health counseling, or intervention for specific complications of childhood cancer treatment. Neither is the Informational Content intended
to exclude other reasonable alternative follow-up procedures. The Informational Content is provided as a courtesy, but not intended as a sole source of guidance inthe evaluation of childhood cancer survivors. The Children’s Oncology Group recognizes that specific patient care decisions are the prerogative of the patient, family, andhealthcare provider.
No endorsement of any specific tests, products, or procedures is made by Informational Content, the Children’s Oncology Group, or affiliated party or member of the Children’s
Oncology Group.
No Claim to Accuracy or Completeness: While the Children's Oncology Group has made every attempt to assure that the Informational Content is accurate and complete as of thedate of publication, no warranty or representation, express or implied, is made as to the accuracy, reliability, completeness, relevance, or timeliness of such Informational Content.
No Liability on Part of Children’s Oncology Group and Related Parties/ Agreement to Indemnify and Hold Harmless the Children’s Oncology Group and Related Parties:
No liability is assumed by the Children's Oncology Group or any affiliated party or member thereof for damage resulting from the use, review, or access of the Informational Content.
You agree to the following terms of indemnification: (i) "Indemnified Parties" include authors and contributors to the Informational Content, all officers, directors, representatives,
employees, agents, and members of the Children’s Oncology Group and affiliated organizations; (ii) by using, reviewing, or accessing the Informational Content, you agree, at yourown expense, to indemnify, defend and hold harmless Indemnified Parties from any and all losses, liabilities, or damages (including attorneys' fees and costs) resulting from any andall claims, causes of action, suits, proceedings, or demands related to or arising out of use, review or access of the Informational Content.
Proprietary Rights: The Informational Content is subject to protection under the copyright law and other intellectual property law in the United States and worldwide. The Children's
Oncology Group retains excursive copyright and other right, title, and interest to the Informational Content and claims all intellectual property rights available under law. You hereby agree to help the Children’s Oncology Group secure all copyright and intellectual property rights for the benefit of the Children’s Oncology Group by taking additional action
at a later time, action which could include signing consents and legal documents and limiting dissemination or reproduction of Informational Content.

Copyright 2006 © Children’s Oncology GroupAll rights reserved worldwide

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Healthy living after treatment for childhood cancer

Kidney Health
Version 2.0 - 3/06

Kidney Health after Childhood Cancer
The kidneys are vital organs responsible for filtering out waste products from the blood,
controlling blood pressure, and stimulating red blood cell production. Treatment forchildhood cancer can sometimes damage the kidneys. It is important to understandhow the kidneys function so that you can keep your kidneys as healthy as possible.
How do the kidneys work?
The kidneys are two bean-shaped organs, each approximately thesize of an adult fist, located below the ribcage near the middle ofthe back. The kidneys filter about 200 quarts of blood each day,removing harmful waste products and excess water, and returning
important elements (such as calcium, sodium and potassium) to theblood. Filtering occurs in tiny units inside the kidneys, known as
nephrons. Each kidney has approximately one million nephrons.
After the blood is filtered by the nephrons, the excess water andwaste products become urine. The urine flows from the kidneys tothe bladder through tubes called ureters. The bladder then storesthe urine until it is full, at which time the waste is emptied from thebody through the urethra.
How is kidney function measured?
Kidney function is measured in percentages. Two normal kidneys account for 100% of
kidney function. A single kidney provides about 50% of kidney function. One can leada normal life with one kidney as long as the single kidney remains healthy. When kidney
function drops to less than 50% of normal, the risk of health problems increases.
Serious health problems are more frequent when kidney function drops to below 20%.
Dialysis or transplant is necessary if kidney function falls to 15% or below.
What treatments for childhood cancer can cause kidney problems?
Certain treatments used for childhood cancer can sometimes cause kidney problems.
There may also be other risk factors present that can increase the chance of kidney
problems. If you have any of the following risk factors, you should take extra care tokeep your kidneys healthy:
Radiation involving the kidneys, including:

Kidney (renal or flank) radiation

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Kidney Health
Version 2.0 - 3/06

Abdominal radiation
 Total body irradiation (TBI)

Certain medications that can cause kidney damage, including: Cisplatin Carboplatin Methotrexate
 Ifosfamide Certain antibiotics used to treat bacterial and fungal infections, such as
tobramycin, gentamicin, and amphotericin Certain medications used to treat graft-versus-host disease, such as cyclosporine
and FK-506 (tacrolimus)
Other risk factors that may increase the chance of kidney problems include:
Nephrectomy (surgical removal of a kidney) – see the related Health Link "Single
Kidney Health" Medical conditions that may affect the kidney, such as high blood pressure,diabetes, or a tumor involving the kidney
 History of urinary tract problems, such as frequent urinary tract infections,back-flow of urine into the kidney (reflux), or other urinary tract abnormalities
 Cystectomy (removal of the bladder) – this increases the risk of chronic urinary
tract infections and other kidney problems


What are the signs and symptoms of a kidney problem?
Swelling, especially of the feet and ankles (edema) Low red blood count (anemia)
 High blood pressure (hypertension) People who have signs of serious kidney problems, such as edema, low red bloodcount, and hypertension, may also have other symptoms, including fatigue,nausea and vomiting, drowsiness, itchy skin, or headaches.
What follow up is recommended?
Have a medical check-up at least yearly. This should include a blood pressurecheck and urinalysis.
 Have a blood test for kidney function (BUN and creatinine) and electrolytes(blood salts and minerals) at your first long-term follow-up visit (at least 2 years
after completing cancer treatment). If problems are detected, follow your health

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Kidney Health
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care provider’s recommendations. People with low levels of blood salts andminerals may need to take supplements (prescribed by a healthcare provider).
This can be important for long-term health. For example, persistently low levelsof blood magnesium can lead to heart problems.
 If you have had a cystectomy (bladder removal), you should also have an
evaluation by a urologist (urinary tract specialist) at least once a year.
What can I do to keep my kidneys healthy?
Drink plenty of water, especially when playing sports, while out in the sun, andduring hot weather.
 Call your healthcare provider immediately if you have symptoms of a urinary
tract infection (burning when you urinate, urinating more frequently than usual,
and/or feeling an urgent sensation to urinate).
 Use non-steroidal anti-inflammatory drugs with caution. These include painor fever medicines (over-the-counter and by prescription) that contain aspirin,
ibuprofen, acetaminophen or naproxen. These medications have been known tocause kidney damage (analgesic nephropathy), especially when taken inexcessive doses or when two or more of these medications are combined withcaffeine or codeine and taken over long periods of time. If you require long-term
medications for management of pain, be sure to discuss the alternatives with yourhealthcare provider, and to choose medications that are not harmful to yourkidneys.


Written by Anne Mauck, RN, MSN, CPNP, Division of Pediatric Hematology Oncology,
Virginia Commonwealth University Health System, Richmond, Virginia.
Reviewed by Dr E. Clifton Russell, Dr. Nancy L. Dunn, Dr. Gita Massey, Dr. Vimal Chadha,
Elizabeth Hall CPNP, Kevin Oeffinger, MD, Wendy Landier CPNP, Daniel Green, MD,
Melissa M. Hudson MD, Smita Bhatia, MD, MPH, Catherine L. Woodman MD, and Josee
Pacifico RN, BSc (N).
Illustrated by Devika Bhatia.

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Healthy living after treatment for childhood cancer

Kidney Health
Version 2.0 - 3/06

Additional health information for childhood cancer survivors is available atwww.survivorshipguidelines.org
Note: Throughout this Health Links series, the term "childhood cancer" is used to designate pediatric cancers that may
occur during childhood, adolescence, or young adulthood. Health Links are designed to provide health information
for survivors of pediatric cancer, regardless of whether the cancer occurred during childhood, adolescence, or young
adulthood.
Disclaimer and Notice of Proprietary Rights
Introduction to Late Effects Guidelines and Health Links: The "Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers" and accompanying"Health Links" were developed by the Children’s Oncology Group as a collaborative effort of the Late Effects Committee and Nursing Discipline.
For Informational Purposes Only: The information and contents of each document or series of documents made available from by the Children’s Oncology Group relating to lateeffects of cancer treatment and care or containing the title "Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers" or the title "HealthLink", whether available in print or electronic format (including any digital format, e-mail transmission, or download from the website), shall be known hereinafter as "Informational
Content". All Informational Content is for informational purposes only. The Informational Content is not intended to substitute for medical advice, medical care, diagnosis or treatment obtained from a physician or health care provider.
To cancer patients (if children, their parents or legal guardians): Please seek the advice of a physician or other qualified health provider with any questions you may haveregarding a medical condition and do not rely on the Informational Content. The Children’s Oncology Group is a research organization and does not provide individualized
medical care or treatment.
To physicians and other healthcare providers: The Informational Content is not intended to replace your independent clinical judgment, medical advice, or to exclude
other legitimate criteria for screening, health counseling, or intervention for specific complications of childhood cancer treatment. Neither is the Informational Content intended
to exclude other reasonable alternative follow-up procedures. The Informational Content is provided as a courtesy, but not intended as a sole source of guidance inthe evaluation of childhood cancer survivors. The Children’s Oncology Group recognizes that specific patient care decisions are the prerogative of the patient, family, andhealthcare provider.
No endorsement of any specific tests, products, or procedures is made by Informational Content, the Children’s Oncology Group, or affiliated party or member of the Children’s
Oncology Group.
No Claim to Accuracy or Completeness: While the Children's Oncology Group has made every attempt to assure that the Informational Content is accurate and complete as of thedate of publication, no warranty or representation, express or implied, is made as to the accuracy, reliability, completeness, relevance, or timeliness of such Informational Content.
No Liability on Part of Children’s Oncology Group and Related Parties/ Agreement to Indemnify and Hold Harmless the Children’s Oncology Group and Related Parties:
No liability is assumed by the Children's Oncology Group or any affiliated party or member thereof for damage resulting from the use, review, or access of the Informational Content.
You agree to the following terms of indemnification: (i) "Indemnified Parties" include authors and contributors to the Informational Content, all officers, directors, representatives,
employees, agents, and members of the Children’s Oncology Group and affiliated organizations; (ii) by using, reviewing, or accessing the Informational Content, you agree, at yourown expense, to indemnify, defend and hold harmless Indemnified Parties from any and all losses, liabilities, or damages (including attorneys' fees and costs) resulting from any andall claims, causes of action, suits, proceedings, or demands related to or arising out of use, review or access of the Informational Content.
Proprietary Rights: The Informational Content is subject to protection under the copyright law and other intellectual property law in the United States and worldwide. The Children's
Oncology Group retains excursive copyright and other right, title, and interest to the Informational Content and claims all intellectual property rights available under law. You hereby agree to help the Children’s Oncology Group secure all copyright and intellectual property rights for the benefit of the Children’s Oncology Group by taking additional action
at a later time, action which could include signing consents and legal documents and limiting dissemination or reproduction of Informational Content.

Copyright 2006 © Children’s Oncology GroupAll rights reserved worldwide

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Healthy living after treatment for childhood cancer

Limb Sparing Procedures
Version 2.0 - 3/06

Limb Sparing Procedures
What is a "limb sparing procedure"?
A limb sparing procedure is a surgical operation that replaces a diseasedbone and reconstructs a functional limb by using a metal implant, a bone
graft from another person (allograft), or a combination bone graft andmetal implant (allo-prosthetic composite).
What are the potential late effects after a limb sparing procedure?


Nonunion - For people who had reconstruction with a bone graft,
nonunion (non-healing) of the bones is a possible late complication.
In the allograft procedure, the portion of bone removed due to tumor
is replaced with donated bone. Nonunion occurs when one or bothends of the replaced bone do not heal, making fracture more likely,
especially if the area is stressed. Surgery for additional bone grafting may benecessary.

Limb-length discrepancy - Bones are constantly growing during childhood andadolescence, until adult height is reached. Each bone has a growth plate (areawhere growth activity occurs). Often, bone cancers are located near the growthplate, requiring removal of this area during the limb sparing procedure. Since thereconstructed section of bone cannot grow, a difference (discrepancy) in limb-length
may occur over time. Surgeries or other procedures may be necessary to allow for
growth.



Prosthetic loosening - Sometimes the implanted joint can loosen or wear out,
especially in people who are active. These complications may require further
surgery to tighten or replace part or all of the implant. Any loosening of the implantshould be reported to your orthopedic surgeon.

Contractures - After a limb sparing procedure, muscles, tendons and ligaments
sometimes stiffen or shrink, forming contractures (permanent tightening of thejoint). This is more likely to occur in people who are not physically active. Periodic
follow-up with a physical and/or occupational therapist helps prevent contracturesfrom forming.

Additional surgery may be needed - for revision of prosthesis as a person grows
in height.

Obesity – may result if the person becomes physically inactive.

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Healthy living after treatment for childhood cancer
Chronic pain and/or infection – some people may develop persistent problems
with pain and/or infection.

What is the recommended follow-up care after a limb sparing procedure?
Follow-up visits are usually done by the orthopedic surgeon (bone specialist)
every 6 months until the person is fully grown, then every year. The follow-up
intervals may lengthen as time progresses.



X-rays are usually done at least yearly.

Life-long follow-up by an orthopedic surgeon is recommended.

Limitation of certain physical activities is sometimes necessary.

What can you do to promote health after limb sparing surgery?
Physical and occupational therapy are important for successful rehabilitation after
limb sparing surgery. Both passive and active range-of-motion exercises help
maintain the best limb function.



If there is pain, swelling, redness or any other signs of infection at the surgicalsite, or if you develop fever, contact your healthcare provider promptly.



Due to a life-long risk of infection in individuals with allograft prostheses,
antibiotics should be taken prior to all dental procedures (including teeth
cleaning), and for other invasive medical procedures such as those involving the
respiratory, gastrointestinal, or urinary tracts. Infection can result if bacteria enter the
bloodstream during these procedures and become attached to the internal metalcomponents (screws, plates, rods, joints) of the endoprosthesis.

Some metal implants may pose a problem when going through security
screening, such as at the airport. It is good idea to carry a medical letter
indicating that you received treatment for bone cancer and have a metal implant.

Written by Asako Komiya, RN, MSN, PNP, Division of Pediatrics, City of Hope National
Medical Center, Duarte, CA.
Reviewed by J. Dominic Femino MD, Neyssa Marina MD, Winnie Kittiko RN, MS,
Catherine L. Woodman MD, Melissa M. Hudson MD, and Revonda Mosher RN, MSN,
CPNP, CPON®.

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Limb Sparing Procedures
Version 2.0 - 3/06

Healthy living after treatment for childhood cancer

Additional health information for childhood cancer survivors is available atwww.survivorshipguidelines.org
Note: Throughout this Health Links series, the term "childhood cancer" is used to designate pediatric cancers that may
occur during childhood, adolescence, or young adulthood. Health Links are designed to provide health information
for survivors of pediatric cancer, regardless of whether the cancer occurred during childhood, adolescence, or young
adulthood.
Disclaimer and Notice of Proprietary Rights
Introduction to Late Effects Guidelines and Health Links: The "Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers" and accompanying"Health Links" were developed by the Children’s Oncology Group as a collaborative effort of the Late Effects Committee and Nursing Discipline.
For Informational Purposes Only: The information and contents of each document or series of documents made available from by the Children’s Oncology Group relating to lateeffects of cancer treatment and care or containing the title "Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers" or the title "HealthLink", whether available in print or electronic format (including any digital format, e-mail transmission, or download from the website), shall be known hereinafter as "Informational
Content". All Informational Content is for informational purposes only. The Informational Content is not intended to substitute for medical advice, medical care, diagnosis or treatment obtained from a physician or health care provider.
To cancer patients (if children, their parents or legal guardians): Please seek the advice of a physician or other qualified health provider with any questions you may haveregarding a medical condition and do not rely on the Informational Content. The Children’s Oncology Group is a research organization and does not provide individualized
medical care or treatment.
To physicians and other healthcare providers: The Informational Content is not intended to replace your independent clinical judgment, medical advice, or to exclude
other legitimate criteria for screening, health counseling, or intervention for specific complications of childhood cancer treatment. Neither is the Informational Content intended
to exclude other reasonable alternative follow-up procedures. The Informational Content is provided as a courtesy, but not intended as a sole source of guidance inthe evaluation of childhood cancer survivors. The Children’s Oncology Group recognizes that specific patient care decisions are the prerogative of the patient, family, andhealthcare provider.
No endorsement of any specific tests, products, or procedures is made by Informational Content, the Children’s Oncology Group, or affiliated party or member of the Children’s
Oncology Group.
No Claim to Accuracy or Completeness: While the Children's Oncology Group has made every attempt to assure that the Informational Content is accurate and complete as of thedate of publication, no warranty or representation, express or implied, is made as to the accuracy, reliability, completeness, relevance, or timeliness of such Informational Content.
No Liability on Part of Children’s Oncology Group and Related Parties/ Agreement to Indemnify and Hold Harmless the Children’s Oncology Group and Related Parties:
No liability is assumed by the Children's Oncology Group or any affiliated party or member thereof for damage resulting from the use, review, or access of the Informational Content.
You agree to the following terms of indemnification: (i) "Indemnified Parties" include authors and contributors to the Informational Content, all officers, directors, representatives,
employees, agents, and members of the Children’s Oncology Group and affiliated organizations; (ii) by using, reviewing, or accessing the Informational Content, you agree, at yourown expense, to indemnify, defend and hold harmless Indemnified Parties from any and all losses, liabilities, or damages (including attorneys' fees and costs) resulting from any andall claims, causes of action, suits, proceedings, or demands related to or arising out of use, review or access of the Informational Content.
Proprietary Rights: The Informational Content is subject to protection under the copyright law and other intellectual property law in the United States and worldwide. The Children's
Oncology Group retains excursive copyright and other right, title, and interest to the Informational Content and claims all intellectual property rights available under law. You hereby agree to help the Children’s Oncology Group secure all copyright and intellectual property rights for the benefit of the Children’s Oncology Group by taking additional action
at a later time, action which could include signing consents and legal documents and limiting dissemination or reproduction of Informational Content.

Copyright 2006 © Children’s Oncology GroupAll rights reserved worldwide

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Health Link

Healthy living after treatment for childhood cancer

Liver Health
Version 2.0 - 3/06

Liver Health after Childhood Cancer
Treatment for childhood cancer can sometimes damage the liver. It is important to know
about how the liver functions so that you can keep your liver as healthy as possible.
What is the liver?
The liver is a triangular-shaped organ tucked under the ribcage
on the right side of the body. In an average adult, the liver isabout the size of a football and weighs about three pounds. The
liver is responsible for filtering out toxins from the blood, aiding
with digestion and metabolism, and producing many important
substances, including blood-clotting proteins.
What are the signs and symptoms of liver damage?
Many people with liver damage have no symptoms at all. Somepeople may develop jaundice (yellowish eyes and skin), dark urine,
pale (clay-colored) stools, severe itching, easy bruising or bleeding,chronic fatigue, nausea, loss of appetite, or other symptoms. The
liver sometimes enlarges (hepatomegaly), and as liver damage
increases, the liver may become hard (fibrosis) and scarred(cirrhosis). Eventually, there can be accumulation of fluid in
the abdomen (ascites), swelling of the spleen (splenomegaly), or
bleeding into the esophagus or stomach. Very rarely, liver cancer
may develop.
Who is at risk?
People who had high doses of radiation (30 Gy or 3000 cGy/rads or higher) to thefollowing areas may be at risk for liver problems:Upper abdomen or whole abdomen
Liver

The following chemotherapy drugs also have the potential to cause liver damage,although the most likely time for this to happen is during treatment or shortly after treatment ends. It is very uncommon for these medicines to cause liver problems years after
treatment: Methotrexate
 Mercaptopurine
 Thioguanine
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Liver Health
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Other risk factors include:
Medical conditions that involve the liver, such as a liver tumor or surgicalremoval of a large portion of the liver Pre-existing liver problems
 Excessive alcohol use Chronic liver infection (hepatitis)- see related Health Link: "Hepatitis after Childhood Cancer"
 History of multiple transfusions
 Chronic graft-versus-host disease (as a result of bone marrow, cord blood, or
stem cell transplant)

What tests are done to monitor the liver?
The following blood tests are used to monitor the liver.
Liver enzyme tests monitor levels of specialized proteins that are normallypresent inside liver cells. If liver cells are damaged, these proteins can leak out,
causing high blood levels of liver enzymes. The most common liver enzyme tests
are:- Alanine aminotransferase (ALT), sometimes also called SGPT- Aspartate aminotransferase (AST), sometimes also called SGOT Liver function tests are indicators of how well the liver is working. Common liverfunction tests include:- Bilirubin (a waste product formed during the breakdown of red blood cells)- Albumin (a major blood protein that is produced by the liver)- Prothrombin Time (PT), a measure of blood clotting Tests for liver infection, including specific tests for viral hepatitis A, B, and C
 Test to check for iron overload (ferritin) related to multiple transfusions


What follow up is needed for those at risk?
A blood test to evaluate the liver (including ALT, AST, and bilirubin) should be done
when the survivor enters into long-term follow-up. Those who have undergone bonemarrow, cord blood, or stem cell transplant should also have a blood test to checkfor iron overload (ferritin). The liver should also be checked for enlargement by
a healthcare professional during yearly physical examinations. If problems are
identified, additional tests and a referral to a liver specialist may be recommended.
People at risk for hepatitis may need further testing (see related Health Link, "Hepatitis
after Childhood Cancer").
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Healthy living after treatment for childhood cancer

Liver Health
Version 2.0 - 3/06

What can I do to keep my liver healthy?
If you do not have immunity to hepatitis A and B, get immunized against thesecommon infections in order to protect your liver (there is currently no vaccine toprotect against hepatitis C). You can find out if you have immunity to hepatitis A
and B by having a blood test (Hepatitis A IgG antibody and Hepatitis B surface
antibody).
 If you drink alcohol, do so in moderation.
 Drink plenty of water.
 Eat a well-balanced, high-fiber diet. Cut down on fatty, salty, smoked and cured
foods.
 Do not take more than the recommended doses of medications.
 Avoid taking unnecessary medications.
 Do not mix drugs and alcohol.
 Do not use illegal street drugs.
 Check with your healthcare provider before starting any new over-the-counter
medications or herbs and supplements to be sure that they do not have harmful
effects on the liver.
 If you are sexually active, use barrier protection (such as latex condoms) during
intimate sexual contact to prevent infection by viruses that can damage the liver.
 Avoid exposure to chemicals (solvents, aerosol cleaners, insecticides, paintthinners, and other toxins) that can be harmful to the liver. If you must use thesesubstances, wear a mask and gloves and work in a well-ventilated area.


Written by Wendy Landier, RN, MSN, CPNP, CPON®, Survivorship Clinic, City of Hope
National Medical Center, Duarte, CA.
Reviewed by: Melissa M. Hudson MD, Smita Bhatia MD, MPH, and Billie Buchert RN,
BSN.
Illustrated by Devika Bhatia.

Copyright 2006 © Children’s Oncology GroupAll rights reserved worldwide

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Healthy living after treatment for childhood cancer

Liver Health
Version 2.0 - 3/06

Additional health information for childhood cancer survivors is available atwww.survivorshipguidelines.org
Note: Throughout this Health Links series, the term "childhood cancer" is used to designate pediatric cancers that may
occur during childhood, adolescence, or young adulthood. Health Links are designed to provide health information
for survivors of pediatric cancer, regardless of whether the cancer occurred during childhood, adolescence, or young
adulthood.
Disclaimer and Notice of Proprietary Rights
Introduction to Late Effects Guidelines and Health Links: The "Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers" and accompanying"Health Links" were developed by the Children’s Oncology Group as a collaborative effort of the Late Effects Committee and Nursing Discipline.
For Informational Purposes Only: The information and contents of each document or series of documents made available from by the Children’s Oncology Group relating to lateeffects of cancer treatment and care or containing the title "Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers" or the title "HealthLink", whether available in print or electronic format (including any digital format, e-mail transmission, or download from the website), shall be known hereinafter as "Informational
Content". All Informational Content is for informational purposes only. The Informational Content is not intended to substitute for medical advice, medical care, diagnosis or treatment obtained from a physician or health care provider.
To cancer patients (if children, their parents or legal guardians): Please seek the advice of a physician or other qualified health provider with any questions you may haveregarding a medical condition and do not rely on the Informational Content. The Children’s Oncology Group is a research organization and does not provide individualized
medical care or treatment.
To physicians and other healthcare providers: The Informational Content is not intended to replace your independent clinical judgment, medical advice, or to exclude
other legitimate criteria for screening, health counseling, or intervention for specific complications of childhood cancer treatment. Neither is the Informational Content intended
to exclude other reasonable alternative follow-up procedures. The Informational Content is provided as a courtesy, but not intended as a sole source of guidance inthe evaluation of childhood cancer survivors. The Children’s Oncology Group recognizes that specific patient care decisions are the prerogative of the patient, family, andhealthcare provider.
No endorsement of any specific tests, products, or procedures is made by Informational Content, the Children’s Oncology Group, or affiliated party or member of the Children’s
Oncology Group.
No Claim to Accuracy or Completeness: While the Children's Oncology Group has made every attempt to assure that the Informational Content is accurate and complete as of thedate of publication, no warranty or representation, express or implied, is made as to the accuracy, reliability, completeness, relevance, or timeliness of such Informational Content.
No Liability on Part of Children’s Oncology Group and Related Parties/ Agreement to Indemnify and Hold Harmless the Children’s Oncology Group and Related Parties:
No liability is assumed by the Children's Oncology Group or any affiliated party or member thereof for damage resulting from the use, review, or access of the Informational Content.
You agree to the following terms of indemnification: (i) "Indemnified Parties" include authors and contributors to the Informational Content, all officers, directors, representatives,
employees, agents, and members of the Children’s Oncology Group and affiliated organizations; (ii) by using, reviewing, or accessing the Informational Content, you agree, at yourown expense, to indemnify, defend and hold harmless Indemnified Parties from any and all losses, liabilities, or damages (including attorneys' fees and costs) resulting from any andall claims, causes of action, suits, proceedings, or demands related to or arising out of use, review or access of the Informational Content.
Proprietary Rights: The Informational Content is subject to protection under the copyright law and other intellectual property law in the United States and worldwide. The Children's
Oncology Group retains excursive copyright and other right, title, and interest to the Informational Content and claims all intellectual property rights available under law. You hereby agree to help the Children’s Oncology Group secure all copyright and intellectual property rights for the benefit of the Children’s Oncology Group by taking additional action
at a later time, action which could include signing consents and legal documents and limiting dissemination or reproduction of Informational Content.

Copyright 2006 © Children’s Oncology GroupAll rights reserved worldwide

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Healthy living after treatment for childhood cancer

Male Health Issues
Version 2.0 - 3/06

Male Health Issues
after Treatment for Childhood Cancer
The effects of childhood cancer therapy on male reproductive function depend on manyfactors, including the boy’s age at the time of cancer therapy, the specific type andlocation of the cancer, and the treatment that was given. It is important to understandhow the male reproductive system functions and how it may be affected by therapy
given to treat cancer during childhood.
The male reproductive system
The male reproductive system contains many
structures and is controlled by the pituitary
gland in the brain. The testicles are located in
the scrotum (the loose pouch of skin that hangs
behind the penis). The testicles are made up
of Leydig cells (cells that produce themale hormone - testosterone) and germ cells(cells that produce sperm). When a boy
enters puberty, the pituitary gland in the brain
releases two hormones (FSH and LH) thatsignal the testicles to begin producing sperm
and testosterone. As puberty progresses,
testosterone causes deepening of the voice,enlargement of the penis and testicles, growthof facial and body hair, and muscular development of the body.
How does cancer therapy affect the male reproductive system?
Cancer therapy can cause infertility (the inability to initiate a pregnancy). Infertility canoccur following treatment with certain types of chemotherapy, radiation to the brain or
testicles, or surgery involving the male reproductive system.
Another possible effect of cancer therapy is testosterone deficiency, also known as"hypogonadism" or "Leydig cell failure." When this occurs, the testicles are unable toproduce enough of the male hormone, testosterone. If this happens to a young boy, hewill not be able to go into puberty without the help of hormones prescribed by a doctor.
If it develops after puberty, a man will need testosterone therapy to maintain musculardevelopment, bone and muscle strength, proper distribution of body fat, sex drive, andthe ability to have erections.
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Male Health Issues
Version 2.0 - 3/06

What are the causes of male reproductive problems after childhood cancer
treatment?
Chemotherapy of the "alkylator" type (such as cyclophosphamide, nitrogen mustardand procarbazine) may cause infertility. The total dose of alkylating chemotherapy
used during cancer treatment is important in determining the likelihood of damage tosperm-producing cells. The higher the total dose, the more potential for developing
infertility. Very high doses can occasionally cause testosterone deficiency. If alkylating
chemotherapy was used in combination with radiation, the risk of infertility is increased,
and the possibility of testosterone deficiency also exists.
Radiation therapy can affect testicular function in two ways:

Radiation aimed directly at or near the testicles. The sperm-producing cells(germ cells) are very sensitive to the effects of radiation therapy. Most males
who receive radiation to the testicles at doses of 3 to 6 Gy (300 to 600 cGy/rads)
or higher will be infertile. The testosterone producing cells are more resistant to
the effects of radiation and chemotherapy, but if testicular radiation was given indoses of 20 Gy (2000 cGy/rads) or higher, the Leydig cells may stop functioning,
resulting in testosterone deficiency (in addition to infertility).



Radiation to the pituitary gland in the brain. Brain radiation can result indamage to the pituitary gland, leading to low levels of the hormones (FSH and LH)
needed to signal the testicles to make sperm and testosterone. Males with lowlevels of these hormones will need to take testosterone for the rest of their lives.
However, it is sometimes possible for these men to regain fertility with the use of
specialized hormone treatments. Men who have infertility as a result of brain
radiation and wish to achieve fertility should see a fertility specialist.

Surgery that involves removal of both testicles (bilateral orchiectomy) will result in
infertility and testosterone deficiency. Pelvic surgery, such as retroperitoneal lymph
node dissection (RPLD), or spinal surgery sometimes results in nerve damage thatmay prevent the ejaculation of sperm. Removal of the prostate or bladder may resultin difficulties achieving an erection and/or ejaculation. In these situations, sperm
production may be unaffected and fertility may still be possible by using specialized
techniques, such as sperm harvesting and artificial insemination. If fertility is desired,consultation with a fertility specialist is recommended.

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Male Health Issues
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What types of cancer therapy increase the risk of problems with the male reproductive system?
Chemotherapy - the class of drugs called "alkylators" can cause infertility when
given in high doses. Very high doses may occasionally cause testosterone
deficiency. Examples of these drugs are:Alkylating agents:
 Busulfan Carmustine (BCNU)
 Chlorambucil
 Cyclophosphamide (Cytoxan“)
 Ifosfamide Lomustine (CCNU)
 Mechlorethamine (nitrogen mustard) Melphalan
 Procarbazine
 Thiotepa
Heavy metals:
 Carboplatin Cisplatin
Non-classical alkylators:
 Dacarbazine (DTIC) TemozolomideRadiation therapy to any of the following areas may cause infertility.
 Testicles
 Pelvis (including iliac/inguinal/femoral, bladder, prostate, total nodal, and"inverted Y" fields)
 TBI (total body irradiation)
 Head/brain (cranial) - if dose was 40 Gy (4000 cGy/rads) or higher
In addition to causing infertility, high doses of radiation to the testicles or pelvis(usually 20 Gy or higher) or brain (usually 40 Gy or higher) may also cause
testosterone deficiency.

Surgeries that may cause infertility or disrupt normal sexual functioning include: Removal of both testicles (this surgery will always result in infertility) Retroperitoneal lymph node dissection (RPLD)
 Removal of tumor in the retroperitoneal area
 Cystectomy (removal of the bladder)

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Prostatectomy (removal of the prostate) Spinal surgery
 Removal of tumor near the spinal cord

In addition, removal of both testicles will result in infertility and testosterone
deficiency.
What monitoring is recommended?
Males whose treatment places them at risk for problems with the reproductive systemshould have a yearly check-up that includes careful evaluation of their hormone
and puberty status. Blood may be tested for hormone levels (FSH, LH, and testosterone).
If any problems are detected, a referral to an endocrinologist (hormone specialist),
urologist (specialist in the male reproductive organs) and/or fertility specialist may berecommended.
What can be done for testosterone deficiency?
Males with low testosterone levels should receive testosterone replacement therapy.
Testosterone is available in several forms, including skin patches, injections, and topicalgel. Your endocrinologist will determine which form of therapy is best for you.
How will I know if I am infertile?
Infertility is not related to sexual function. Some men with infertility may noticea decrease in the size or firmness of the testicles, but in others, there are no physicalindications of infertility.
Males who had surgical removal of both testicles will not be able to make sperm,
and infertility will be permanent. In other males, the only certain way to check for sperm
production is to have a semen analysis performed. This test checks the appearance,
movement and concentration of sperm in the semen. A semen analysis that shows
azoospermia (no sperm in the semen sample) on more than one sample is an indicatorof infertility.
Sterility following radiation is likely permanent. However, recovery of sperm production
may occur months or years after the completion of chemotherapy in some men. For
others, chemotherapy damage may be permanent. It is not possible to determine if
sperm production will resume, especially if chemotherapy ended only a few years prior
to the semen analysis. For this reason, always assume that you can make someone
pregnant unless you are absolutely sure that you cannot!!
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When should I get a semen analysis?
Any sexually mature male who is concerned about fertility should have a semen
analysis performed. Most hospitals with adult services will be able to perform a semen
analysis. Not all insurance companies cover the cost of this analysis, so you should
check with your insurance company to be sure, or check with the hospital or
clinic regarding the costs of this procedure. If the semen analysis results are within
normal limits, natural conception can occur.
What if the sperm count is low?
If the results show no sperm (azoospermia) or very low sperm counts (oligospermia), thetest should be repeated several times. Sperm recovery following chemotherapy
may take as long as 10 years, so if you have had chemotherapy that may cause low
sperm counts, it may be important to check periodically over several years. Also, men’s
sperm counts vary considerably from day to day, so sub-normal test results
may improve if additional samples are checked after waiting a month or two. Spermproduction and quality may continue to improve as more time passes from thechemotherapy treatment.
Men who have low sperm counts cannot rely on this to prevent pregnancy. Pregnancy
can occur with low sperm counts. Some method of birth control must be used if
pregnancy is not desired.
If pregnancy is desired, men with low sperm counts may benefit from assisted
reproductive techniques such as Intra Cytoplasmic Sperm Injection (ICSI), a form of invitro fertilization. A consultation with an infertility specialist is helpful in order to obtainfurther information regarding these options.
What are my options if there are no sperm in the semen analysis?
If semen analysis shows no sperm (azoospermia), and children are desired, a consultation
with a doctor who specializes in male infertility should be obtained. Medical
advancements dealing with male infertility are being made. Recently, surgeons havebeen able to locate areas of active sperm production in the testes of men who have nosperm on semen analysis. Surgical harvesting of the sperm has resulted in pregnancies
with techniques devised for men with absent or very low sperm counts. Occasionally,azoospermia may be unrelated to chemotherapy altogether, and treatment for anotherdisorder may be indicated.

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Other good options for males who produce no sperm include donor insemination or
adoption. Donor insemination (DI) uses sperm from another male, either from a known
or anonymous donor. DI results in pregnancy with a child that is biologically related only
to the mother. Additional options may include adoption of a biologically unrelated childor child-free living.
How do I use the sperm cryopreserved before treatment started?
Options for using banked sperm depend on the amount and quality of material saved.
Men who banked sperm prior to cancer treatment will need to work with a doctor
specializing in reproductive medicine, so that the cryopreserved (frozen) sperm can beused in an optimal manner.
What if only one testicle was surgically removed?
Although fertility and testosterone production are not usually affected if only one
testicle was surgically removed, you should take precautions to protect the remaining
testicle from injury by always wearing an athletic supporter with a protective cup whenparticipating in any activities that may potentially cause injury to the groin area (such as
contact sports, baseball, etc.). If your remaining testicle was treated with radiation, or
if you received chemotherapy that can affect testicular function, the effects of thesetreatments are the same as discussed above.
What are the risks if pregnancy occurs after childhood cancer treatment?
Fortunately, in most cases, there is no increased risk of cancer or birth defects inchildren born to childhood cancer survivors. In rare cases, if the type of cancer inchildhood was a genetic (inherited) type, then there may be a risk of passing that typeof cancer on to a child. You should check with your oncologist if you are not surewhether the type of cancer you had was genetic.

Written by Marcia Leonard, RN PNP, Long Term Follow Up Clinic, Department ofPediatric Hematology-Oncology, University of Michigan Medical Center, Ann Arbor, MI.
Reviewed by: Charles Sklar MD, Julie Blatt MD, Daniel Green MD, Smita Bhatia MD,
MPH, Wendy Landier CPNP, and Missy Layfield.
Illustrated by Devika Bhatia.

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Additional health information for childhood cancer survivors is available atwww.survivorshipguidelines.org
Note: Throughout this Health Links series, the term "childhood cancer" is used to designate pediatric cancers that may
occur during childhood, adolescence, or young adulthood. Health Links are designed to provide health information
for survivors of pediatric cancer, regardless of whether the cancer occurred during childhood, adolescence, or young
adulthood.
Disclaimer and Notice of Proprietary Rights
Introduction to Late Effects Guidelines and Health Links: The "Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers" and accompanying"Health Links" were developed by the Children’s Oncology Group as a collaborative effort of the Late Effects Committee and Nursing Discipline.
For Informational Purposes Only: The information and contents of each document or series of documents made available from by the Children’s Oncology Group relating to lateeffects of cancer treatment and care or containing the title "Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers" or the title "HealthLink", whether available in print or electronic format (including any digital format, e-mail transmission, or download from the website), shall be known hereinafter as "Informational
Content". All Informational Content is for informational purposes only. The Informational Content is not intended to substitute for medical advice, medical care, diagnosis or treatment obtained from a physician or health care provider.
To cancer patients (if children, their parents or legal guardians): Please seek the advice of a physician or other qualified health provider with any questions you may haveregarding a medical condition and do not rely on the Informational Content. The Children’s Oncology Group is a research organization and does not provide individualized
medical care or treatment.
To physicians and other healthcare providers: The Informational Content is not intended to replace your independent clinical judgment, medical advice, or to exclude
other legitimate criteria for screening, health counseling, or intervention for specific complications of childhood cancer treatment. Neither is the Informational Content intended
to exclude other reasonable alternative follow-up procedures. The Informational Content is provided as a courtesy, but not intended as a sole source of guidance inthe evaluation of childhood cancer survivors. The Children’s Oncology Group recognizes that specific patient care decisions are the prerogative of the patient, family, andhealthcare provider.
No endorsement of any specific tests, products, or procedures is made by Informational Content, the Children’s Oncology Group, or affiliated party or member of the Children’s
Oncology Group.
No Claim to Accuracy or Completeness: While the Children's Oncology Group has made every attempt to assure that the Informational Content is accurate and complete as of thedate of publication, no warranty or representation, express or implied, is made as to the accuracy, reliability, completeness, relevance, or timeliness of such Informational Content.
No Liability on Part of Children’s Oncology Group and Related Parties/ Agreement to Indemnify and Hold Harmless the Children’s Oncology Group and Related Parties:
No liability is assumed by the Children's Oncology Group or any affiliated party or member thereof for damage resulting from the use, review, or access of the Informational Content.
You agree to the following terms of indemnification: (i) "Indemnified Parties" include authors and contributors to the Informational Content, all officers, directors, representatives,
employees, agents, and members of the Children’s Oncology Group and affiliated organizations; (ii) by using, reviewing, or accessing the Informational Content, you agree, at yourown expense, to indemnify, defend and hold harmless Indemnified Parties from any and all losses, liabilities, or damages (including attorneys' fees and costs) resulting from any andall claims, causes of action, suits, proceedings, or demands related to or arising out of use, review or access of the Informational Content.
Proprietary Rights: The Informational Content is subject to protection under the copyright law and other intellectual property law in the United States and worldwide. The Children's
Oncology Group retains excursive copyright and other right, title, and interest to the Informational Content and claims all intellectual property rights available under law. You hereby agree to help the Children’s Oncology Group secure all copyright and intellectual property rights for the benefit of the Children’s Oncology Group by taking additional action
at a later time, action which could include signing consents and legal documents and limiting dissemination or reproduction of Informational Content.

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Healthy living after treatment for childhood cancer

Neurogenic Bladder
Version 2.0 - 3/06

Neurogenic Bladder following Treatment forChildhood Cancer
Certain types of cancer and certain cancer treatments can cause damage to the urinary
bladder. The information in this Health Link will help you to recognize the signs andsymptoms of a neurogenic bladder.
What is the urinary bladder?
The urinary bladder is a hollow organ that
stores urine. It is located behind the pubic
bone. The kidneys filter the blood andmake urine, which enters the bladderthrough two tubes called "ureters". Urine
leaves the bladder through another tube, theurethra. In women, the urethra is a shorttube that opens just in front of the vagina. Inmen, it is longer, and passes through theprostate gland and then the penis.
What is a neurogenic bladder?
A neurogenic bladder is abnormal function of the bladder caused by damage tothe nerves that control the bladder’s ability to fill, store and empty urine. Abnormal
bladder function can cause the bladder to be underactive (not emptying completely) or
overactive (emptying too frequently or quickly). People with neurogenic bladders also
have a higher risk of urinary tract infections (UTIs) and kidney damage.
What are the symptoms of a neurogenic bladder?
There may be a sudden urge to urinate or the need to urinate frequently. There may
also be dribbling during urination, straining in order to urinate, or the inability to urinate.
Who is at risk of a neurogenic bladder?
People who have had tumors involving the bladder, prostate, pelvis, or spine are at
risk of developing neurogenic bladder. Also, people who had surgery or radiation inthese areas may be at risk.
How is a neurogenic bladder diagnosed?
If a neurogenic bladder is suspected, an evaluation should be done by a urologist. A
urologist is a physician who specializes in disorders of the urinary tract. The urologist
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will order tests to determine how well the bladder is able to store and empty urine, suchas a voiding cystourethrogram (VCUG) or bladder cystometry.
What can I do if I have a neurogenic bladder?
Treatment of neurogenic bladder is based on your individual needs. Medications may
be useful for an overactive bladder or for a bladder that fails to store urine properly.
Surgery to enlarge the size of the bladder may be needed if the medications are notsuccessful.
Removal of urine by insertion of a small, clean tube in the urethra several times a day(intermittent catheterization) may be necessary if you cannot completely empty yourbladder. This helps prevent high pressure in the bladder that interferes with flow of urine
from the ureters and kidneys.
When should I call my healthcare provider?
Call your healthcare provider if you are awakened more than usual during the night
to urinate, if leakage of urine occurs, any time fever or pain is present, or if blood isseen in the urine.

Written by Patricia Shearer MD, MS, Pediatric Hematology/Oncology, Ochsner Clinic,
New Orleans, Louisiana; Michael Ritchey, MD, Pediatric Urology Associates, Phoenix,
Arizona; Fernando A. Ferrer, MD, Department of Surgery, Connecticut Children’s
Medical Center, Hartford, Connecticut; and Sheri L. Spunt, MD, Hematology/Oncology,
St. Jude Children’s Research Hospital, Memphis, Tennessee.
Reviewed by: Jill Meredith RN, BSN, OCN®, Wendy Landier RN, MSN, CPNP, CPON®,
and Joan Darling PhD.

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Neurogenic Bladder
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Additional health information for childhood cancer survivors is available atwww.survivorshipguidelines.org
Note: Throughout this Health Links series, the term "childhood cancer" is used to designate pediatric cancers that may
occur during childhood, adolescence, or young adulthood. Health Links are designed to provide health information
for survivors of pediatric cancer, regardless of whether the cancer occurred during childhood, adolescence, or young
adulthood.
Disclaimer and Notice of Proprietary Rights
Introduction to Late Effects Guidelines and Health Links: The "Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers" and accompanying"Health Links" were developed by the Children’s Oncology Group as a collaborative effort of the Late Effects Committee and Nursing Discipline.
For Informational Purposes Only: The information and contents of each document or series of documents made available from by the Children’s Oncology Group relating to lateeffects of cancer treatment and care or containing the title "Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers" or the title "HealthLink", whether available in print or electronic format (including any digital format, e-mail transmission, or download from the website), shall be known hereinafter as "Informational
Content". All Informational Content is for informational purposes only. The Informational Content is not intended to substitute for medical advice, medical care, diagnosis or treatment obtained from a physician or health care provider.
To cancer patients (if children, their parents or legal guardians): Please seek the advice of a physician or other qualified health provider with any questions you may haveregarding a medical condition and do not rely on the Informational Content. The Children’s Oncology Group is a research organization and does not provide individualized
medical care or treatment.
To physicians and other healthcare providers: The Informational Content is not intended to replace your independent clinical judgment, medical advice, or to exclude
other legitimate criteria for screening, health counseling, or intervention for specific complications of childhood cancer treatment. Neither is the Informational Content intended
to exclude other reasonable alternative follow-up procedures. The Informational Content is provided as a courtesy, but not intended as a sole source of guidance inthe evaluation of childhood cancer survivors. The Children’s Oncology Group recognizes that specific patient care decisions are the prerogative of the patient, family, andhealthcare provider.
No endorsement of any specific tests, products, or procedures is made by Informational Content, the Children’s Oncology Group, or affiliated party or member of the Children’s
Oncology Group.
No Claim to Accuracy or Completeness: While the Children's Oncology Group has made every attempt to assure that the Informational Content is accurate and complete as of thedate of publication, no warranty or representation, express or implied, is made as to the accuracy, reliability, completeness, relevance, or timeliness of such Informational Content.
No Liability on Part of Children’s Oncology Group and Related Parties/ Agreement to Indemnify and Hold Harmless the Children’s Oncology Group and Related Parties:
No liability is assumed by the Children's Oncology Group or any affiliated party or member thereof for damage resulting from the use, review, or access of the Informational Content.
You agree to the following terms of indemnification: (i) "Indemnified Parties" include authors and contributors to the Informational Content, all officers, directors, representatives,
employees, agents, and members of the Children’s Oncology Group and affiliated organizations; (ii) by using, reviewing, or accessing the Informational Content, you agree, at yourown expense, to indemnify, defend and hold harmless Indemnified Parties from any and all losses, liabilities, or damages (including attorneys' fees and costs) resulting from any andall claims, causes of action, suits, proceedings, or demands related to or arising out of use, review or access of the Informational Content.
Proprietary Rights: The Informational Content is subject to protection under the copyright law and other intellectual property law in the United States and worldwide. The Children's
Oncology Group retains excursive copyright and other right, title, and interest to the Informational Content and claims all intellectual property rights available under law. You hereby agree to help the Children’s Oncology Group secure all copyright and intellectual property rights for the benefit of the Children’s Oncology Group by taking additional action
at a later time, action which could include signing consents and legal documents and limiting dissemination or reproduction of Informational Content.

Copyright 2006 © Children’s Oncology GroupAll rights reserved worldwide

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Osteonecrosis
Version 2.0 - 3/06

Osteonecrosis
What is osteonecrosis?
Osteonecrosis is a disorder resulting from a temporary or permanent loss of blood
supply to the bone. Blood carries essential nutrients and oxygen to the bones. Whenthe blood supply is disrupted, the bone tissues (osteo) begin to break down (necrosis).
This can weaken the bone and eventually result in its collapse. If this occurs near ajoint, it can lead to the collapse of the joint surface, resulting in pain and inflammation(arthritis). Osteonecrosis is also referred to as avascular necrosis or "AVN", "aseptic
necrosis", and "ischemic bone necrosis".
Osteonecrosis can occur in any bone, but most commonly affects the ends (epiphysis)of long bones such as the thigh bone (femur), causing hip and knee problems. Other
common sites include the bones of the upper arms, shoulders, and ankles.
Osteonecrosis can occur in a single bone, but more commonly occurs in several bones
at one time (multifocal osteonecrosis).
Osteonecrosis can sometimes be disabling, depending on what part of the bone isaffected, how large an area is involved, and how well the bone rebuilds itself. Normalbone continuously breaks down and rebuilds itself. This process keeps the bones
strong. Osteonecrosis is the result of bone tissues breaking down faster than the bodycan repair them. If the disorder progresses, it can lead to pain and arthritis.
What causes osteonecrosis?
Osteonecrosis is caused by interruption of the blood supply to the bone. If bloodvessels are blocked with fat, become too thick or too small, or get too weak, they may
not be able to provide the amount of blood necessary for the bone tissue to survive.
What are the risk factors for osteonecrosis?
Corticosteroids (such as prednisone and dexamethasone) given during cancer
treatment can affect the bone and blood vessels, resulting in osteonecrosis. People whohave undergone hematopoietic cell transplant (bone marrow, cord blood, or stem celltransplant) are also at risk for developing osteonecrosis. Other factors that increase therisk of osteonecrosis in people who received corticosteroid therapy or hematopoietic
cell transplant (HCT) include treatment with high doses of radiation to weight bearing
bones, treatment with older radiation approaches (before 1970), being older than 10 at
the time of treatment, having sickle cell disease, receiving total body irradiation (TBI),

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undergoing an allogeneic transplant (from someone other than yourself), and having
prolonged treatment with corticosteroids for chronic graft-versus-host disease following
HCT. Osteonecrosis is most likely to occur during the time that cancer is being treated,
but it can also sometimes happen after completion of cancer therapy.
Steroids and osteonecrosis
Corticosteroids (such as prednisone and dexamethasone) are commonly used fortreatment of many cancers, such as leukemia and lymphoma. Dexamethasone is also
sometimes used for treatment of nausea and vomiting associated with chemotherapy
and to control brain swelling. There is no clear explanation as to how corticosteroids
cause osteonecrosis, but it is believed that they may interfere with the body’s ability to
break down fatty substances. These substances can clog the blood vessels, causing
them to narrow. This reduces the amount of blood that gets into the bone.
What are the symptoms of osteonecrosis?
People in the early stages of osteonecrosis may not have any symptoms. However, as
the disorder progresses, most people will experience some joint pain. At first, theperson may only experience pain when bearing weight on the affected bone or joint. As
the disorder progresses, symptoms may be present even at rest. Pain may develop
gradually and its intensity can range from mild to severe.
If osteonecrosis progresses and the bone and surrounding joint surfaces collapse, thepain can increase considerably and may become severe enough to limit movement in
the affected joint. The period of time between the first symptoms of osteonecrosis andthe loss of joint function is different for each person and ranges from several months toyears.
How is osteonecrosis diagnosed?
An x-ray is usually the first test to be done when osteonecrosis is suspected. It can help
distinguish osteonecrosis from other causes of bone pain, such as fracture. In the earlystages of osteonecrosis, an x-ray may appear normal, so other tests may need to bedone to establish the diagnosis. Once the diagnosis has been made, and in the laterstages of osteonecrosis, x-rays are useful in monitoring the course of the condition.
MRI is one of the most useful tools in diagnosing osteonecrosis because it can detect
osteonecrosis in the earliest stages, when symptoms are not yet present. Bone scans
are sometimes used to diagnose osteonecrosis. They are useful because one scan canshow all the areas in the body affected by osteonecrosis. However, bone scans do not

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detect osteonecrosis at the earliest stages. A CT scan provides a three-dimensional
image of the bone and can be useful in determining the extent of bone damage.
Surgical procedures such as a bone biopsy can conclusively diagnose osteonecrosis,
but are not commonly done.
How is osteonecrosis treated?
The goals of treatment for osteonecrosis are to improve the person’s use of the affectedjoint, reduce pain, stop bone damage, and ensure joint survival. Treatment can beconservative or surgical. In order to decide the best treatment for a patient, thefollowing factors are considered:
The person’s age
The stage of the disorder (early or late) The location and the amount of bone affected (small or large)
 The status of cancer and cancer treatment
Conservative treatment
Medication - to reduce pain Reduced weight bearing - to slow the damage and promote natural healing.
Crutches may be recommended to limit weight or pressure on the affected joint.
 Range of motion exercises – to keep the joints flexible. This is also important tomaintain movement and increase circulation in the joints. This can promote healing
and may relieve pain. Physical therapists can teach the correct exercises.
 Electrical stimulation - to induce bone growthConservative treatments may be used alone or in combination, but they may not provide lasting improvement. Some people may require surgery to permanently repair or
replace the joint.
Surgical Treatment
Core decompression – is a surgery that removes the inner layer of bone. This
may reduce pressure within the bone and create an open area for new blood vessels
to grow. Sometimes a piece of healthy bone with good blood vessels (bone graft)
is put in this area to speed up the process. This procedure works best in the earlystages of osteonecrosis and should help relieve pain and promote healing.
 Osteotomy – is a surgery that involves taking out a piece of bone, usually awedge, to reposition the bone so that the tissue lacking blood supply (avasculararea) bears less weight than an adjacent healthy area.


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Arthroplasty – is also referred to as joint replacement. The affected bone isremoved and replaced with an artificial joint. This treatment may be needed in thelate stages of osteonecrosis and when a joint is destroyed.

Health Promoting Behaviors/Interventions
Avoid activities that put a lot of stress on your joints. Activities that stress thejoints include running, jumping, football, soccer, volleyball, basketball and similar
sports. Activities that are good for joints with osteonecrosis are swimming andbicycling.
 Be consistent with recommended exercises.
 Rest joints when they hurt.
 Let your healthcare provider or physical therapist know if there are any changes
in your symptoms.
 Take pain or anti-inflammatory medications as prescribed.
Resources:
National Institute of Arthritis and Musculoskeletal and Skin Diseases
National Institutes of Health, 1 AMS Circle, Bethesda, MD 20892-3675
Phone: 301-495-4484 or 877-226-4267 (toll free), TTY: 301-565-2966
Fax: 301-718-6366. Web: www.niams.nih.gov/hi/topics/osteonecrosis/index.htm
 American Academy of Orthopaedic Surgeons
P.O. Box 2058, Des Plaines, IL 60017
Phone: 800-824-2663 (toll free). Web: www.aaos.org
Adapted by Katherine Myint-Hpu, MSN, MPH, PNP, Georgetown University Hospital,
Washington, D.C., from "Health Topics: Questions and Answers about Avascular
Necrosis" by the National Institute of Arthritis and Musculoskeletal and Skin Diseases,
January 2001, and "Avascular Necrosis – Do You Know" by St. Jude Children’s
Research Hospital, used with permission.
Reviewed by Neyssa Marina MD, Joan Darling PhD, Melissa M. Hudson MD, Smita
Bhatia MD, MPH, and Sarah Bottomley MN, RN, CPNP, CPON®.

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Additional health information for childhood cancer survivors is available atwww.survivorshipguidelines.org
Note: Throughout this Health Links series, the term "childhood cancer" is used to designate pediatric cancers that may
occur during childhood, adolescence, or young adulthood. Health Links are designed to provide health information
for survivors of pediatric cancer, regardless of whether the cancer occurred during childhood, adolescence, or young
adulthood.
Disclaimer and Notice of Proprietary Rights
Introduction to Late Effects Guidelines and Health Links: The "Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers" and accompanying"Health Links" were developed by the Children’s Oncology Group as a collaborative effort of the Late Effects Committee and Nursing Discipline.
For Informational Purposes Only: The information and contents of each document or series of documents made available from by the Children’s Oncology Group relating to lateeffects of cancer treatment and care or containing the title "Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers" or the title "HealthLink", whether available in print or electronic format (including any digital format, e-mail transmission, or download from the website), shall be known hereinafter as "Informational
Content". All Informational Content is for informational purposes only. The Informational Content is not intended to substitute for medical advice, medical care, diagnosis or treatment obtained from a physician or health care provider.
To cancer patients (if children, their parents or legal guardians): Please seek the advice of a physician or other qualified health provider with any questions you may haveregarding a medical condition and do not rely on the Informational Content. The Children’s Oncology Group is a research organization and does not provide individualized
medical care or treatment.
To physicians and other healthcare providers: The Informational Content is not intended to replace your independent clinical judgment, medical advice, or to exclude
other legitimate criteria for screening, health counseling, or intervention for specific complications of childhood cancer treatment. Neither is the Informational Content intended
to exclude other reasonable alternative follow-up procedures. The Informational Content is provided as a courtesy, but not intended as a sole source of guidance inthe evaluation of childhood cancer survivors. The Children’s Oncology Group recognizes that specific patient care decisions are the prerogative of the patient, family, andhealthcare provider.
No endorsement of any specific tests, products, or procedures is made by Informational Content, the Children’s Oncology Group, or affiliated party or member of the Children’s
Oncology Group.
No Claim to Accuracy or Completeness: While the Children's Oncology Group has made every attempt to assure that the Informational Content is accurate and complete as of thedate of publication, no warranty or representation, express or implied, is made as to the accuracy, reliability, completeness, relevance, or timeliness of such Informational Content.
No Liability on Part of Children’s Oncology Group and Related Parties/ Agreement to Indemnify and Hold Harmless the Children’s Oncology Group and Related Parties:
No liability is assumed by the Children's Oncology Group or any affiliated party or member thereof for damage resulting from the use, review, or access of the Informational Content.
You agree to the following terms of indemnification: (i) "Indemnified Parties" include authors and contributors to the Informational Content, all officers, directors, representatives,
employees, agents, and members of the Children’s Oncology Group and affiliated organizations; (ii) by using, reviewing, or accessing the Informational Content, you agree, at yourown expense, to indemnify, defend and hold harmless Indemnified Parties from any and all losses, liabilities, or damages (including attorneys' fees and costs) resulting from any andall claims, causes of action, suits, proceedings, or demands related to or arising out of use, review or access of the Informational Content.
Proprietary Rights: The Informational Content is subject to protection under the copyright law and other intellectual property law in the United States and worldwide. The Children's
Oncology Group retains excursive copyright and other right, title, and interest to the Informational Content and claims all intellectual property rights available under law. You hereby agree to help the Children’s Oncology Group secure all copyright and intellectual property rights for the benefit of the Children’s Oncology Group by taking additional action
at a later time, action which could include signing consents and legal documents and limiting dissemination or reproduction of Informational Content.

Copyright 2006 © Children’s Oncology GroupAll rights reserved worldwide

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Healthy living after treatment for childhood cancer

Osteoradionecrosis
Version 2.0 - 3/06

Osteoradionecrosis after Childhood Cancer
What is osteoradionecrosis?
Osteoradionecrosis (ORN) is a problem with bone healing that can occur in people who
received high doses of radiation, particularly to the jaw. This complication can occur
after dental surgery or extraction of teeth. High doses of radiation can decrease
the bone’s blood supply. If this happens, the bone gets less oxygen than it needs,
resulting in the death (necrosis) of bone tissue. The most commonly affected bone is
the jawbone (mandible).
Who is at risk for osteoradionecrosis?
Survivors who received high doses of radiation to the jaw area (40 Gy or 4000 cGy/rads
or higher) are at risk for this complication. Radiation fields that often include the jawbone
are as follows:
Cranial (head/brain) Nasopharyngeal (area above the roof of the mouth) Oropharyngeal (mouth and throat) Neck or spine ("cervical" portion)
 Supraclavicular (area above the collarbones)
 Mantle or mini-mantle (neck/underarm/chest areas)

It is important to obtain your medical records so that you know exactly how muchradiation you received and where the radiation was directed. For example, survivors
exposed to radiation doses of 50 Gy or higher to the jawbone have the highest risk forthe development of ORN.
When does osteoradionecrosis occur?
Although it is uncommon, ORN most often occurs when a survivor undergoes a dental
procedure (such as pulling of tooth) or other surgery involving the jawbone.
What are the symptoms of osteoradionecrosis?
Symptoms of ORN may occur months to years after radiation. Common symptoms
include mouth pain, jaw swelling and difficulty opening the mouth fully (trismus).
How is osteoradionecrosis diagnosed?
ORN can be diagnosed by physical examination and imaging studies (x-ray, CT scan
and/or MRI). Sometimes, a surgeon may need to take a sample (biopsy) of the problem
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Osteoradionecrosis
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area in order to make a definite diagnosis. Radiation therapy records should be
reviewed to determine the location and dose of radiation that was given.
How is osteoradionecrosis treated?
Treatment of ORN is mainly through control of uncomfortable symptoms. Salt-waterrinses and light scrubbing of affected tissues may be helpful. Antibiotics may help
if a wound becomes infected. Hyperbaric oxygen therapy (oxygen delivered in apressurized chamber) is sometimes used to increase the amount of oxygen given to theaffected tissues and improve the chance of healing.
Is there anything I can do to prevent osteoradionecrosis?
People who received radiotherapy involving the jaw should:
Tell their dentist that they received radiation. The dentist will then be able to get
details about the radiation treatment before doing any tooth extractions that could
lead to ORN.
 Have regular dental care and take good care of their teeth and gums, since therisk for cavities is higher in people who received large doses of radiation. The
dentist may order daily fluoride treatments to reduce the risk of cavities and theneed for extracting teeth in the future. (See related Health Link: "Dental Health")

Resources:

The Oral Cancer Foundation
3419 Via Lido #205, Newport Beach, CA 92663
Phone (949)-646-8000, Fax (949)-496-3331
Web: www.oralcancerfoundation.org



The American College of Oral and Maxillofacial Surgeons
1710 Route 29, Galway, NY 12074
Phone (518)-882-6729, Toll Free (800)-522-6676
Fax (518)-882-6730
Web: www.acoms.org

Written by: Arnold Paulino MD, Division of Radiation Oncology, Methodist Hospital,
Houston, Texas.
Reviewed by: Jacqueline Casillas MD, Wendy Landier CPNP, and Joan Darling PhD.
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Osteoradionecrosis
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Additional health information for childhood cancer survivors is available atwww.survivorshipguidelines.org
Note: Throughout this Health Links series, the term "childhood cancer" is used to designate pediatric cancers that may
occur during childhood, adolescence, or young adulthood. Health Links are designed to provide health information
for survivors of pediatric cancer, regardless of whether the cancer occurred during childhood, adolescence, or young
adulthood.
Disclaimer and Notice of Proprietary Rights
Introduction to Late Effects Guidelines and Health Links: The "Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers" and accompanying"Health Links" were developed by the Children’s Oncology Group as a collaborative effort of the Late Effects Committee and Nursing Discipline.
For Informational Purposes Only: The information and contents of each document or series of documents made available from by the Children’s Oncology Group relating to lateeffects of cancer treatment and care or containing the title "Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers" or the title "HealthLink", whether available in print or electronic format (including any digital format, e-mail transmission, or download from the website), shall be known hereinafter as "Informational
Content". All Informational Content is for informational purposes only. The Informational Content is not intended to substitute for medical advice, medical care, diagnosis or treatment obtained from a physician or health care provider.
To cancer patients (if children, their parents or legal guardians): Please seek the advice of a physician or other qualified health provider with any questions you may haveregarding a medical condition and do not rely on the Informational Content. The Children’s Oncology Group is a research organization and does not provide individualized
medical care or treatment.
To physicians and other healthcare providers: The Informational Content is not intended to replace your independent clinical judgment, medical advice, or to exclude
other legitimate criteria for screening, health counseling, or intervention for specific complications of childhood cancer treatment. Neither is the Informational Content intended
to exclude other reasonable alternative follow-up procedures. The Informational Content is provided as a courtesy, but not intended as a sole source of guidance inthe evaluation of childhood cancer survivors. The Children’s Oncology Group recognizes that specific patient care decisions are the prerogative of the patient, family, andhealthcare provider.
No endorsement of any specific tests, products, or procedures is made by Informational Content, the Children’s Oncology Group, or affiliated party or member of the Children’s
Oncology Group.
No Claim to Accuracy or Completeness: While the Children's Oncology Group has made every attempt to assure that the Informational Content is accurate and complete as of thedate of publication, no warranty or representation, express or implied, is made as to the accuracy, reliability, completeness, relevance, or timeliness of such Informational Content.
No Liability on Part of Children’s Oncology Group and Related Parties/ Agreement to Indemnify and Hold Harmless the Children’s Oncology Group and Related Parties:
No liability is assumed by the Children's Oncology Group or any affiliated party or member thereof for damage resulting from the use, review, or access of the Informational Content.
You agree to the following terms of indemnification: (i) "Indemnified Parties" include authors and contributors to the Informational Content, all officers, directors, representatives,
employees, agents, and members of the Children’s Oncology Group and affiliated organizations; (ii) by using, reviewing, or accessing the Informational Content, you agree, at yourown expense, to indemnify, defend and hold harmless Indemnified Parties from any and all losses, liabilities, or damages (including attorneys' fees and costs) resulting from any andall claims, causes of action, suits, proceedings, or demands related to or arising out of use, review or access of the Informational Content.
Proprietary Rights: The Informational Content is subject to protection under the copyright law and other intellectual property law in the United States and worldwide. The Children's
Oncology Group retains excursive copyright and other right, title, and interest to the Informational Content and claims all intellectual property rights available under law. You hereby agree to help the Children’s Oncology Group secure all copyright and intellectual property rights for the benefit of the Children’s Oncology Group by taking additional action
at a later time, action which could include signing consents and legal documents and limiting dissemination or reproduction of Informational Content.

Copyright 2006 © Children’s Oncology GroupAll rights reserved worldwide

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Healthy living after treatment for childhood cancer

Peripheral Neuropathy
Version 2.0 - 3/06

Peripheral Neuropathy
What is peripheral neuropathy?
Peripheral neuropathy, or damage to the peripheral nerves (nerves outside the brain or
spinal cord), is a potential side effect of chemotherapy drugs and may cause the hands
or feet to hurt, tingle, and feel numb or weak. Though the discomfort is felt in a muscle
or joint, the real damage is to the nerves that control the muscles. Nerves are made upof special cells that carry messages to and from the brain and spinal cord. Damage tothe nerve is often caused by a breakdown of the myelin sheath, the coating aroundnerve fibers that acts as an electrical insulator. There may also be direct damage to thenerve cells from pressure or trauma (for example from a tumor or surgery). Symptoms
usually start during treatment and persist, and are not late in onset. Symptoms often
improve once treatment has stopped, but for some survivors symptoms may persist formonths or years.
Symptoms:
Burning, tingling, or prickling sensation usually in the hands or feet.
 Numbness or sensitivity to pain or temperature Extreme sensitivity to touch Sharp shooting pain Poor balance or coordination
 Loss of reflexes Muscle weakness
 Noticeable changes in the way you walkMuscle weakness may begin around the arch of the foot and in the palm of the hand. It
may be difficult to grip things or to perform certain tasks or activities such as writing,buttoning clothes, or tying shoes. The muscles that pull the foot up may weaken and thereflexes may be lost, causing the front part of the foot to fall flat to the floor. This may
result in poor balance or coordination, especially when tired. There may be a tendency
to drag the feet or lift them high to prevent the feet from dragging.
Who is at risk?
People who have received any of the following chemotherapy drugs may be at risk:
 Vincristine Vinblastine Cisplatin Carboplatin

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People at highest risk for peripheral neuropathy are those who have received higher
doses of these drugs or combinations of these drugs. Other risk factors include surgery,severe weight loss, and diabetes or a pre-existing nerve disease. Prolonged pressure
on nerves from artificial limbs, wheelchairs, or crutches can also contribute to nerve
damage.
Treatment
Rehabilitation services
Since there is no treatment that can cure or reverse nerve damage, treatment is directed
toward symptom management. Physical therapy is often helpful in providing exercises
to improve strength, balance, and coordination. Occupational therapy can provide help
to improve hand/eye coordination and other skills needed for daily life.
Orthotic devices
Support for feet or ankles can be improved with orthotic devices. Arch supports or
splints help prevent the arch from flattening and help improve walking. Splints called
ankle-foot-orthoses (AFOs) may be recommended to prevent the ankle from moving too
much from side to side and to support the foot when walking.
Pain management
Your healthcare provider may prescribe medication to control the pain, tingling, andburning sensation. The type of medication depends on the frequency and severity of
pain. It is also important to know that some medications will have side effects of theirown. Elastic stockings, warm packs, or exercise may also help with the discomfort.
These measures will not replace medication but may decrease the need for them. They
may also assist in improving mobility and independence.
Additional recommendations:
Avoid shoes that are too tight or too loose - Just as shoes that are too tight cancause throbbing, rubbing, and cramping, shoes that are too loose can worsen
pain and may not provide enough support for already wobbly feet. Well-fitting
sneakers or shoes that provide support but are also flexible are best.
 Be sensitive to temperature - Many people report that neuropathy feels worse
in hot weather or when feet are heavily covered which may prevent adequate air
circulation.
 Keep feet uncovered in bed - Bed sheets resting on toes can cause discomfort
due to friction between the sheet and toes.
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Healthy living after treatment for childhood cancer
Massage - Massaging your hands or feet, or having someone else massage themcan be extremely soothing and relaxing and can increase circulation and boost
endorphins (chemicals produced in the body that help control pain).
 Cool soaks - Cool water soaks to painful hands or feet can sometimes dull pain
enough to fall asleep or until pain medication has time to work.
For additional information, contact:
Neuropathy Association, 60 East 42nd Street, Suite 942, New York, NY 10165-0999
Website: www.neuropathy.org Phone: 212 692-0662

Written by Susan Shannon, RN, MSN, CPNP, CPON®, "STAR" Late Effects Program,Miller Children’s Hospital, Long Beach, CA.
Reviewed by Thanh Le, MD, Joetta Deswarte-Wallace RN, MSN, Neyssa Marina MD,
Debra Friedman MD, and Josee Pacifico RN, BSc (N).
Additional health information for childhood cancer survivors is available atwww.survivorshipguidelines.org
Note: Throughout this Health Links series, the term "childhood cancer" is used to designate pediatric cancers that may
occur during childhood, adolescence, or young adulthood. Health Links are designed to provide health information
for survivors of pediatric cancer, regardless of whether the cancer occurred during childhood, adolescence, or young
adulthood.
Disclaimer and Notice of Proprietary Rights
Introduction to Late Effects Guidelines and Health Links: The "Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers" and accompanying"Health Links" were developed by the Children’s Oncology Group as a collaborative effort of the Late Effects Committee and Nursing Discipline.
For Informational Purposes Only: The information and contents of each document or series of documents made available from by the Children’s Oncology Group relating to lateeffects of cancer treatment and care or containing the title "Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers" or the title "HealthLink", whether available in print or electronic format (including any digital format, e-mail transmission, or download from the website), shall be known hereinafter as "Informational
Content". All Informational Content is for informational purposes only. The Informational Content is not intended to substitute for medical advice, medical care, diagnosis or treatment obtained from a physician or health care provider.
To cancer patients (if children, their parents or legal guardians): Please seek the advice of a physician or other qualified health provider with any questions you may haveregarding a medical condition and do not rely on the Informational Content. The Children’s Oncology Group is a research organization and does not provide individualized
medical care or treatment.
To physicians and other healthcare providers: The Informational Content is not intended to replace your independent clinical judgment, medical advice, or to exclude
other legitimate criteria for screening, health counseling, or intervention for specific complications of childhood cancer treatment. Neither is the Informational Content intended
to exclude other reasonable alternative follow-up procedures. The Informational Content is provided as a courtesy, but not intended as a sole source of guidance inthe evaluation of childhood cancer survivors. The Children’s Oncology Group recognizes that specific patient care decisions are the prerogative of the patient, family, andhealthcare provider.
No endorsement of any specific tests, products, or procedures is made by Informational Content, the Children’s Oncology Group, or affiliated party or member of the Children’s
Oncology Group.
No Claim to Accuracy or Completeness: While the Children's Oncology Group has made every attempt to assure that the Informational Content is accurate and complete as of thedate of publication, no warranty or representation, express or implied, is made as to the accuracy, reliability, completeness, relevance, or timeliness of such Informational Content.
No Liability on Part of Children’s Oncology Group and Related Parties/ Agreement to Indemnify and Hold Harmless the Children’s Oncology Group and Related Parties:
No liability is assumed by the Children's Oncology Group or any affiliated party or member thereof for damage resulting from the use, review, or access of the Informational Content.
You agree to the following terms of indemnification: (i) "Indemnified Parties" include authors and contributors to the Informational Content, all officers, directors, representatives,
employees, agents, and members of the Children’s Oncology Group and affiliated organizations; (ii) by using, reviewing, or accessing the Informational Content, you agree, at yourown expense, to indemnify, defend and hold harmless Indemnified Parties from any and all losses, liabilities, or damages (including attorneys' fees and costs) resulting from any andall claims, causes of action, suits, proceedings, or demands related to or arising out of use, review or access of the Informational Content.
Proprietary Rights: The Informational Content is subject to protection under the copyright law and other intellectual property law in the United States and worldwide. The Children's
Oncology Group retains excursive copyright and other right, title, and interest to the Informational Content and claims all intellectual property rights available under law. You hereby agree to help the Children’s Oncology Group secure all copyright and intellectual property rights for the benefit of the Children’s Oncology Group by taking additional action
at a later time, action which could include signing consents and legal documents and limiting dissemination or reproduction of Informational Content.

Copyright 2006 © Children’s Oncology GroupAll rights reserved worldwide

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Healthy living after treatment for childhood cancer

Precocious Puberty
Version 2.0 - 3/06

Endocrine Problems after Childhood Cancer:
Precocious PubertyChildren treated for cancer may develop problems as a result of damage to the complex
system of glands known as the endocrine system.
What is the endocrine system?
The endocrine system is a group of glands that regulate body functions including
growth, puberty, energy level, urine production, and stress response. Glands of theendocrine system include the pituitary, hypothalamus, thyroid, adrenal, pancreas,ovaries (in females), and testes (in males). The hypothalamus and pituitary are sometimes called the "master glands" because they control many of the other glands in theendocrine system. Unfortunately, some treatments given for childhood cancer candamage the hypothalamus and pituitary gland, resulting in a variety of problems.

What are hormones?
Hormones are chemical messengers that carry information from the endocrine glands
through the bloodstream. The endocrine system makes many hormones (such as
growth hormone, sex hormones, adrenal and thyroid hormones) that maintain specificbodily functions.
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Precocious Puberty
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What is the normal age for puberty to begin?
Puberty normally begins between the ages of 8 and 13 in girls, and 9 and 14 in boys.
The timing of puberty is influenced by a person’s genetic background, and the onset ofpuberty at a young age may run in families. Most girls begin to develop breasts and thenpubic hair at around age 10 or 11. Menstrual periods usually start at around 12 to 13
years of age, but may occur earlier or later and still be normal. Boys usually begin todevelop enlargement of the testicles and then pubic hair between 11 and 12 years ofage.
What is precocious puberty?
Precocious puberty means having signs of puberty (such as pubic hair or breast growth)at an age younger than is normally expected. Most doctors agree that a girl has
precocious puberty if she develops sexual traits earlier than age 8, and a boy has
precocious puberty if he develops sexual traits prior to age 9.
The early release of hormones that causes precocious puberty also causes a growth
spurt, with rapid bone growth. Early bone maturation results in less time for growth, so
the child with precocious puberty will have a final adult height that is actually much
shorter than normal.
What are the risk factors for developing precocious puberty?
Risk factors include:
Radiation to the head or brain, especially doses of 18 Gy (1800 cGy/rads) or
higher, including the following fields:- Head/brain (cranial)- Nasopharyngeal (area above the roof of the mouth)- Eye or eye socket (orbit)- Ear or infratemporal region (midfacial area behind the cheekbones)
 Female gender Younger age at the time of cancer treatment


Early puberty is also more common in overweight children.
Why does precocious puberty happen?
The hypothalamus and pituitary gland may be damaged after radiation treatments. The
damage causes them to signal the ovaries (in girls) or testicles (in boys) to make female
or male hormones at an earlier time. In other cases, signs of puberty occur early
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Precocious Puberty
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because of abnormalities in the ovaries, testicles or adrenal glands. Tests are done tolearn if the cause of precocious puberty is in the brain or in another part of the body.
What screening is recommended?
All childhood cancer survivors should have a physical examination at least once a year,
including measurement of height and weight, and evaluation of pubertal progress.
If there are signs of accelerated growth or early puberty, a blood test to check sex
hormones produced in the brain (FSH - follicle stimulating hormone; LH - luteinizing
hormone), testes (testosterone) or ovaries (estradiol) may be done. Sometimes, an
x-ray that measures the developmental age or maturation of bone (bone age) may also
be done.
How is precocious puberty treated?
If a problem is detected, a referral should be made to an endocrinologist (doctor
who specializes in hormone problems). Medications may be used to temporarilystop puberty and to decrease the rate of bone maturation. It is also important toevaluate and manage the psychological effects of beginning puberty too early. Althoughchildren with precocious puberty may have a mature physical appearance, theirthoughts, emotions and behaviors are still that of their actual (chronological) age.

Written by Debra Eshelman, RN, MSN, CPNP, After the Cancer Experience (ACE)
Pediatric and Young Adult Survivor Programs, Children’s Medical Center of Dallas andthe University of Texas Southwestern Medical Center, Dallas, TX.
Reviewed by Lillian R. Meacham MD, Priscilla Rieves, MS, RN, CPNP, Charles Sklar MD,
Julie Blatt MD, Peggy Kulm RN, MA, and Marcia Leonard RN, PNP.
Illustrated by Devika Bhatia.

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Healthy living after treatment for childhood cancer

Precocious Puberty
Version 2.0 - 3/06

Additional health information for childhood cancer survivors is available atwww.survivorshipguidelines.org
Note: Throughout this Health Links series, the term "childhood cancer" is used to designate pediatric cancers that may
occur during childhood, adolescence, or young adulthood. Health Links are designed to provide health information
for survivors of pediatric cancer, regardless of whether the cancer occurred during childhood, adolescence, or young
adulthood.
Disclaimer and Notice of Proprietary Rights
Introduction to Late Effects Guidelines and Health Links: The "Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers" and accompanying"Health Links" were developed by the Children’s Oncology Group as a collaborative effort of the Late Effects Committee and Nursing Discipline.
For Informational Purposes Only: The information and contents of each document or series of documents made available from by the Children’s Oncology Group relating to lateeffects of cancer treatment and care or containing the title "Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers" or the title "HealthLink", whether available in print or electronic format (including any digital format, e-mail transmission, or download from the website), shall be known hereinafter as "Informational
Content". All Informational Content is for informational purposes only. The Informational Content is not intended to substitute for medical advice, medical care, diagnosis or treatment obtained from a physician or health care provider.
To cancer patients (if children, their parents or legal guardians): Please seek the advice of a physician or other qualified health provider with any questions you may haveregarding a medical condition and do not rely on the Informational Content. The Children’s Oncology Group is a research organization and does not provide individualized
medical care or treatment.
To physicians and other healthcare providers: The Informational Content is not intended to replace your independent clinical judgment, medical advice, or to exclude
other legitimate criteria for screening, health counseling, or intervention for specific complications of childhood cancer treatment. Neither is the Informational Content intended
to exclude other reasonable alternative follow-up procedures. The Informational Content is provided as a courtesy, but not intended as a sole source of guidance inthe evaluation of childhood cancer survivors. The Children’s Oncology Group recognizes that specific patient care decisions are the prerogative of the patient, family, andhealthcare provider.
No endorsement of any specific tests, products, or procedures is made by Informational Content, the Children’s Oncology Group, or affiliated party or member of the Children’s
Oncology Group.
No Claim to Accuracy or Completeness: While the Children's Oncology Group has made every attempt to assure that the Informational Content is accurate and complete as of thedate of publication, no warranty or representation, express or implied, is made as to the accuracy, reliability, completeness, relevance, or timeliness of such Informational Content.
No Liability on Part of Children’s Oncology Group and Related Parties/ Agreement to Indemnify and Hold Harmless the Children’s Oncology Group and Related Parties:
No liability is assumed by the Children's Oncology Group or any affiliated party or member thereof for damage resulting from the use, review, or access of the Informational Content.
You agree to the following terms of indemnification: (i) "Indemnified Parties" include authors and contributors to the Informational Content, all officers, directors, representatives,
employees, agents, and members of the Children’s Oncology Group and affiliated organizations; (ii) by using, reviewing, or accessing the Informational Content, you agree, at yourown expense, to indemnify, defend and hold harmless Indemnified Parties from any and all losses, liabilities, or damages (including attorneys' fees and costs) resulting from any andall claims, causes of action, suits, proceedings, or demands related to or arising out of use, review or access of the Informational Content.
Proprietary Rights: The Informational Content is subject to protection under the copyright law and other intellectual property law in the United States and worldwide. The Children's
Oncology Group retains excursive copyright and other right, title, and interest to the Informational Content and claims all intellectual property rights available under law. You hereby agree to help the Children’s Oncology Group secure all copyright and intellectual property rights for the benefit of the Children’s Oncology Group by taking additional action
at a later time, action which could include signing consents and legal documents and limiting dissemination or reproduction of Informational Content.

Copyright 2006 © Children’s Oncology GroupAll rights reserved worldwide

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Healthy living after treatment for childhood cancer

Pulmonary Health
Version 2.0 - 3/06

Pulmonary Health
The lungs are very important organs that supply oxygen to the body. Sometimes,
treatments given for childhood cancer can cause lung damage. If you received any
treatments that may cause lung problems, it is important to learn about the lungs, andwhat you can do to keep them as healthy as possible.
How the lungs function
The lungs transfer oxygen from the air to the blood, where it iscirculated to the body tissues. The lungs also remove carbon
dioxide, a waste product made by the body’s cells. In order foroxygen to reach the blood, it must move through tiny air sacs
(alveoli) in the lungs and into tiny blood vessels (capillaries) thatsurround each air sac. When the air sacs become damaged or
scarred, there is less area for oxygen to enter the bloodstream,
and less oxygen reaches the blood. The person may then needto breathe faster in order to get enough oxygen. This can makethe person feel short of breath. Other lung problems can becaused by inflammation (swelling) of the air passages in thelungs or increased mucous production as a result of irritation or
infection. Symptoms can include cough, wheezing, chest pain,
and shortness of breath.
Am I at risk for lung problems?
If you received any of the following treatments during your cancer therapy, you may be
at risk for developing lung problems:Bleomycin (See the "Bleomycin Alert" Health Link for more information)
 Carmustine (also known as BCNU)
 Lomustine (also known as CCNU)
 Busulfan
 Radiation to the chest Surgery to the chest or lung (this does NOT include surgery for placement of acentral line, such as a Hickman, Broviac, Port-a-Cath or Mediport)
 Bone marrow transplant or stem cell transplant from a donor other than yourself(allogeneic transplant), if you then developed chronic graft versus host disease(chronic GVHD)

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Pulmonary Health
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Certain chemotherapy drugs known as anthracyclines, such as daunorubicin(Daunomycin®), doxorubicin (Adriamycin®), and idarubicin (Idamycin®) can damage theheart and may contribute to lung problems, especially if given in combination withbleomycin, BCNU, CCNU, and radiation treatment.
Other factors that may increase your risk are:Younger age at the time of cancer treatment
A history of lung infections, asthma or other lung problems
 Tobacco use or exposure to second hand smokeWhat problems can develop?
Problems can include scarring of the lungs (pulmonary fibrosis), repeated lung infections(such as chronic bronchitis, bronchiectasis, or recurrent pneumonia), inflammation of
the lung tissues and small airways within the lungs (bronchiolitis obliterans), and ruptureof the tiny air sacs in the lungs or thickening and blockage of air passages within thelungs (restrictive/obstructive lung disease).
What are the symptoms of lung damage?
Symptoms may include shortness of breath, frequent coughing and/or wheezing, chest
pain, and frequent lung infections, such as bronchitis or pneumonia. Becoming easily
fatigued or short of breath during mild exercise (exercise intolerance) is sometimes an
early symptom of lung damage.
What monitoring is recommended?


A yearly medical check-up is recommended.
A chest x-ray and pulmonary function tests (including DLCO and spirometry)
may show lung problems that are not apparent during a check-up. For thisreason, it is helpful to have these tests done at least once (at least two years
after completing cancer treatment) to find out if there are any problems. Your
healthcare provider can decide if further testing is needed based on these results.

Are there any special precautions I should take?
If you have had any of the treatments listed above you should:
Get the pneumococcal (pneumonia) vaccine.
 Get yearly influenza (flu) vaccines.
 Avoid SCUBA diving, unless you have undergone a thorough medical evaluation
and received clearance from a diving medicine specialist.
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Pulmonary Health
Version 2.0 - 3/06

What can I do to prevent lung problems?
If you don’t smoke, DON’T START.
 If you smoke, QUIT! Quitting is the most important thing you can do to keep
your lungs and you healthy.
 Avoid second-hand smoke.
 Get regular physical exercise.
 Avoid breathing toxic fumes from chemicals, solvents, and paints.
 Follow all safety rules in your workplace, such as the use of protective ventilators
in some work environments. Report any unsafe working conditions to the
Occupational Safety and Health Administration (OSHA).


Where can a smoker find help in order to quit?
Your most important resources for quitting smoking are your family, friends andyour healthcare provider. Listed below are some additional sources of education andsupport:Telephone Resources:
If you don’t have access to the Internet, you can call the following organizations torequest educational materials (usually free) about how to quit smoking:American Cancer Society:
American Heart Association:
American Lung Association:
National Cancer Institute:

1-800-ACS-2345
1-800-AHA-USA1
1-800-LUNG-USA
1-877-44U-QUIT

On-Line Resources:
If you have access to the Internet, you may find the following websites helpful:www.surgeongeneral.gov/tobacco/
Very specific tips for getting ready to quit and how to handle the first week. Also has
information on myths that can keep you from quitting.
www.cdc.gov/tobacco/
The Center for Disease Control’s Tobacco Information and Prevention Source (TIPS)
includes guides for quitting the tobacco habit.
www.lungsusa.org/ffs
The American Lung Association’s free on-line "Freedom From Smoking" program.
www.smokefree.org
On-line assistance from the National Institutes of Health to help you quit smoking.
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Pulmonary Health
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Where can I find more information about how to keep my lungs healthy?
More information about the lungs, and how to keep them healthy, is available at:www.nhlbi.nih.gov/health/public/lung/
The National Heart, Lung and Blood Institute’s web site containing general information
for patients and families.
www.nlhep.org/
The National Lung Health Education Program has information for patients about how
to keep lungs healthy.

Written by Charlene Maxen RN, CNP, CPON® and Sarah Friebert MD, Division of
Hematology/Oncology, Childrens Hospital Medical Center of Akron, Akron, Ohio.
Reviewed by: Melissa M. Hudson MD, Debra Friedman MD, John R. Mussman, Neyssa
Marina MD, Wendy Landier, RN, MSN, CPNP, Kevin Oeffinger MD, and Johanne Soucy
RN, B.SC.N.
Illustrated by Devika Bhatia.

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Pulmonary Health
Version 2.0 - 3/06

Additional health information for childhood cancer survivors is available atwww.survivorshipguidelines.org
Note: Throughout this Health Links series, the term "childhood cancer" is used to designate pediatric cancers that may
occur during childhood, adolescence, or young adulthood. Health Links are designed to provide health information
for survivors of pediatric cancer, regardless of whether the cancer occurred during childhood, adolescence, or young
adulthood.
Disclaimer and Notice of Proprietary Rights
Introduction to Late Effects Guidelines and Health Links: The "Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers" and accompanying"Health Links" were developed by the Children’s Oncology Group as a collaborative effort of the Late Effects Committee and Nursing Discipline.
For Informational Purposes Only: The information and contents of each document or series of documents made available from by the Children’s Oncology Group relating to lateeffects of cancer treatment and care or containing the title "Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers" or the title "HealthLink", whether available in print or electronic format (including any digital format, e-mail transmission, or download from the website), shall be known hereinafter as "Informational
Content". All Informational Content is for informational purposes only. The Informational Content is not intended to substitute for medical advice, medical care, diagnosis or treatment obtained from a physician or health care provider.
To cancer patients (if children, their parents or legal guardians): Please seek the advice of a physician or other qualified health provider with any questions you may haveregarding a medical condition and do not rely on the Informational Content. The Children’s Oncology Group is a research organization and does not provide individualized
medical care or treatment.
To physicians and other healthcare providers: The Informational Content is not intended to replace your independent clinical judgment, medical advice, or to exclude
other legitimate criteria for screening, health counseling, or intervention for specific complications of childhood cancer treatment. Neither is the Informational Content intended
to exclude other reasonable alternative follow-up procedures. The Informational Content is provided as a courtesy, but not intended as a sole source of guidance inthe evaluation of childhood cancer survivors. The Children’s Oncology Group recognizes that specific patient care decisions are the prerogative of the patient, family, andhealthcare provider.
No endorsement of any specific tests, products, or procedures is made by Informational Content, the Children’s Oncology Group, or affiliated party or member of the Children’s
Oncology Group.
No Claim to Accuracy or Completeness: While the Children's Oncology Group has made every attempt to assure that the Informational Content is accurate and complete as of thedate of publication, no warranty or representation, express or implied, is made as to the accuracy, reliability, completeness, relevance, or timeliness of such Informational Content.
No Liability on Part of Children’s Oncology Group and Related Parties/ Agreement to Indemnify and Hold Harmless the Children’s Oncology Group and Related Parties:
No liability is assumed by the Children's Oncology Group or any affiliated party or member thereof for damage resulting from the use, review, or access of the Informational Content.
You agree to the following terms of indemnification: (i) "Indemnified Parties" include authors and contributors to the Informational Content, all officers, directors, representatives,
employees, agents, and members of the Children’s Oncology Group and affiliated organizations; (ii) by using, reviewing, or accessing the Informational Content, you agree, at yourown expense, to indemnify, defend and hold harmless Indemnified Parties from any and all losses, liabilities, or damages (including attorneys' fees and costs) resulting from any andall claims, causes of action, suits, proceedings, or demands related to or arising out of use, review or access of the Informational Content.
Proprietary Rights: The Informational Content is subject to protection under the copyright law and other intellectual property law in the United States and worldwide. The Children's
Oncology Group retains excursive copyright and other right, title, and interest to the Informational Content and claims all intellectual property rights available under law. You hereby agree to help the Children’s Oncology Group secure all copyright and intellectual property rights for the benefit of the Children’s Oncology Group by taking additional action
at a later time, action which could include signing consents and legal documents and limiting dissemination or reproduction of Informational Content.

Copyright 2006 © Children’s Oncology GroupAll rights reserved worldwide

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Raynaud’s Phenomenon
Version 2.0 - 3/06

Raynaud’s Phenomenon
What is Raynaud’s Phenomenon?
Raynaud’s is a condition that may cause some areas of your body to feel numb and coolin response to cold temperatures or stress. The condition is a disorder that causes
occasional narrowing of blood vessels, limiting blood flow for brief periods of time. Thisis called a vasospasm. During periods of vasospasm, the skin is deprived of oxygen,and may become pale and then turn a bluish color. As the blood vessels relax and bloodflow resumes, the skin may become red. The hands and feet are most commonly
affected, but Raynaud’s may also involve the nose, lips, cheeks, and earlobes.
Symptoms
Changes in skin color (often from white to blue to red) Changes in skin temperature (affected areas feel cooler) Numbness or prickly feeling in the fingers (not thumbs) and toes Occasional episodes of pain (described as throbbing) and swellingWhat happens during an attack?
For most people, cold temperature or stress triggers an attack. Typically, when the bodyis exposed to cold, the hands and feet lose heat rapidly. In order to conserve heat, thebody reduces blood flow near the skin surface and moves it deeper in the body. For
people with Raynaud’s, this normal response is exaggerated by sudden spasms of thesmall blood vessels that supply blood to the fingers and toes. This greatly reduces the
blood supply to the hands and feet, causing changes in the skin color and temperature.
The first sign is often pallor (or whiteness), in response to the spasm. The skin may thenappear blue (cyanotic) and feel numb or cold, because of a lack of oxygen-rich blood.
Finally, the skin may turn red and become swollen, as the small blood vessels relax anddilate, and blood flow returns. Commonly, throbbing and tingling may occur in thefingers and toes as the attack ends. Raynaud’s attacks can last from seconds to hours.
Who is at risk?
Childhood cancer survivors who received treatment with vinblastine or vincristinesometimes develop Raynaud’s.
Prevention
Raynaud’s is usually a chronic condition that you may need to manage for life. Somepeople may see improvement slowly over several years. Prevention of attacks is key:
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Dress warmly when outdoors.
 Take precautions indoors. Wear socks. Avoid drafts such as when opening therefrigerator or freezer. Wear mittens when handling cold items. Use the air
conditioner sparingly. Use insulated drinking glasses.
 Avoid putting unprotected hands in cold water.
 Do not use tobacco. Nicotine constricts blood vessels and causes the skintemperature to drop, which may lead to an attack.
 Exercise. Regular exercise can enhance circulation and help control stress.
 Control stress. Since stress is often a trigger for Raynaud’s attacks, managing
stress may help make the attacks shorter and less frequent.
Treatment
Treatment is directed at reducing the number and severity of attacks in order to prevent
tissue damage. People with Raynaud’s should follow all of the above recommendations
for preventing attacks. In addition, if attacks are triggered by exposure to cold, placing
the affected body part in warm water may help to stop symptoms. Other treatment
methods include medications and biofeedback.
Medications
Medications that help to dilate blood vessels and promote circulation are sometimes
prescribed for management of severe symptoms.
Certain prescription medications can sometimes make symptoms worse. These
include birth control pills and some heart and blood pressure medicines. If you aretaking any of these medications and are having symptoms of Raynaud’s, consult
with your healthcare provider regarding possible alternatives.
Certain over-the-counter cold or diet pills can make symptoms worse andshould be avoided. These include drugs that contain pseudoephedrine (such as
Actifed®, Chlor-Trimeton®, and Sudafed®).
Biofeedback
Using your mind to control stress and body temperature may help to decrease theseverity and frequency of attacks. This may include guided imagery and/or
deep breathing exercises. A psychologist may be helpful in designing a biofeedback
program that meets your needs.

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Healthy living after treatment for childhood cancer
Written by Susan Shannon, RN, MSN, CPNP, CPON®, "STAR" Late Effects Program,Miller Children’s Hospital, Long Beach, CA.
Reviewers: Thanh Le MD, Joetta Deswarte-Wallace RN, MSN, Neyssa Marina MD,
Debra Friedman MD, Melissa M. Hudson MD, Rebecca D. Pentz PhD, John R.
Mussman, and Josee Pacifico RN, BSc (N).

Additional health information for childhood cancer survivors is available atwww.survivorshipguidelines.org
Note: Throughout this Health Links series, the term "childhood cancer" is used to designate pediatric cancers that may
occur during childhood, adolescence, or young adulthood. Health Links are designed to provide health information
for survivors of pediatric cancer, regardless of whether the cancer occurred during childhood, adolescence, or young
adulthood.
Disclaimer and Notice of Proprietary Rights
Introduction to Late Effects Guidelines and Health Links: The "Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers" and accompanying"Health Links" were developed by the Children’s Oncology Group as a collaborative effort of the Late Effects Committee and Nursing Discipline.
For Informational Purposes Only: The information and contents of each document or series of documents made available from by the Children’s Oncology Group relating to lateeffects of cancer treatment and care or containing the title "Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers" or the title "HealthLink", whether available in print or electronic format (including any digital format, e-mail transmission, or download from the website), shall be known hereinafter as "Informational
Content". All Informational Content is for informational purposes only. The Informational Content is not intended to substitute for medical advice, medical care, diagnosis or treatment obtained from a physician or health care provider.
To cancer patients (if children, their parents or legal guardians): Please seek the advice of a physician or other qualified health provider with any questions you may haveregarding a medical condition and do not rely on the Informational Content. The Children’s Oncology Group is a research organization and does not provide individualized
medical care or treatment.
To physicians and other healthcare providers: The Informational Content is not intended to replace your independent clinical judgment, medical advice, or to exclude
other legitimate criteria for screening, health counseling, or intervention for specific complications of childhood cancer treatment. Neither is the Informational Content intended
to exclude other reasonable alternative follow-up procedures. The Informational Content is provided as a courtesy, but not intended as a sole source of guidance inthe evaluation of childhood cancer survivors. The Children’s Oncology Group recognizes that specific patient care decisions are the prerogative of the patient, family, andhealthcare provider.
No endorsement of any specific tests, products, or procedures is made by Informational Content, the Children’s Oncology Group, or affiliated party or member of the Children’s
Oncology Group.
No Claim to Accuracy or Completeness: While the Children's Oncology Group has made every attempt to assure that the Informational Content is accurate and complete as of thedate of publication, no warranty or representation, express or implied, is made as to the accuracy, reliability, completeness, relevance, or timeliness of such Informational Content.
No Liability on Part of Children’s Oncology Group and Related Parties/ Agreement to Indemnify and Hold Harmless the Children’s Oncology Group and Related Parties:
No liability is assumed by the Children's Oncology Group or any affiliated party or member thereof for damage resulting from the use, review, or access of the Informational Content.
You agree to the following terms of indemnification: (i) "Indemnified Parties" include authors and contributors to the Informational Content, all officers, directors, representatives,
employees, agents, and members of the Children’s Oncology Group and affiliated organizations; (ii) by using, reviewing, or accessing the Informational Content, you agree, at yourown expense, to indemnify, defend and hold harmless Indemnified Parties from any and all losses, liabilities, or damages (including attorneys' fees and costs) resulting from any andall claims, causes of action, suits, proceedings, or demands related to or arising out of use, review or access of the Informational Content.
Proprietary Rights: The Informational Content is subject to protection under the copyright law and other intellectual property law in the United States and worldwide. The Children's
Oncology Group retains excursive copyright and other right, title, and interest to the Informational Content and claims all intellectual property rights available under law. You hereby agree to help the Children’s Oncology Group secure all copyright and intellectual property rights for the benefit of the Children’s Oncology Group by taking additional action
at a later time, action which could include signing consents and legal documents and limiting dissemination or reproduction of Informational Content.

Copyright 2006 © Children’s Oncology GroupAll rights reserved worldwide

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Healthy living after treatment for childhood cancer

Reducing Risk of Cancers
Version 2.0 - 3/06

Reducing the Risk of Second Cancers
Learning about the risk of developing a second cancer can be frustrating and anxiety
provoking. After your battle with childhood cancer, the last thing you want to be reminded
about is the risk of developing a second cancer during adulthood. For a variety ofreasons, the risk of cancer increases for everyone as they age. Several studies haveshown that as childhood cancer survivors become older, they have a slightly higher
risk of developing (a second) cancer compared to people their same age in the general
population. Things that can contribute to this risk are the person’s age during cancer
therapy, their specific treatment, and their genetic and family history.
Who is at risk for second cancer?
People who received certain chemotherapy drugs. Some treatments forchildhood cancer increase the risk of second cancers. Rarely, people can develop
acute myeloid leukemia after treatment. Secondary leukemia usually occurs, if atall, within the first 10 years following treatment of the original cancer. The risk ofdeveloping a secondary leukemia is increased for people who were treated withhigh doses of alkylating agents (such as cyclophosphamide or nitrogen mustard),
epipodophyllotoxins (such as etoposide or teniposide), and anthracycline
chemotherapy drugs (such as doxorubicin or daunorubicin).

People who received radiation therapy, especially at a young age. Radiation
therapy given for childhood cancer increases the risk of developing a secondary
solid tumor as a person ages. The most common sites include the skin, breast,
central nervous system (the brain and spine), thyroid gland, and bones. In
contrast to secondary leukemias, secondary solid tumors most commonly appear
10 or more years after treatment. The risk of developing a secondary solid tumor
is increased when radiation is delivered at high doses and over large fields tochildren at a young age.

People who have a history of cancer in their family. Some cancer patients haveinherited gene changes (mutations) that increase the chances of getting a second
cancer. But overall, these inherited changes are relatively uncommon andaccount for less than 10 percent of patients with cancer. Doctors suspect thepresence of a cancer gene when a family history shows multiple cancers among
young people in every generation, or when cancer occurs in both sides of pairedorgans (such as the eyes, breasts, kidneys, etc.) If you have any questions or
think that cancer may "run in your family" you should talk to your healthcare
provider. A review of your family medical history will tell whether genetic counseling or testing is needed.
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What if you are in a high-risk group?
You can find out if you are at high risk for developing a second cancer by going overyour cancer treatment and family history with your healthcare provider or a cancer specialist. In some cases, early or more frequent screening may be recommended toincrease the likelihood that second cancers are detected early, when they are mosteffectively treated. Be sure to get all screening tests that are recommended for you.
What monitoring is recommended?
By practicing health maintenance behaviors, you can improve your awarenessof changes in your body and increase the likelihood that problems will be detected atearlier stages. All childhood cancer survivors should have a yearly comprehensive
health check-up. You should also have any cancer screening evaluations appropriate
for you based on your age, sex, and treatment history. Knowing the details of yourprevious medical history, including exposures to chemotherapy, radiation, andsurgery, is vital to your future health. This information should be available to you or
your healthcare provider from the hospital or clinic where you received your cancer
therapy. Developing a relationship with a primary care provider who knows your cancer
treatment history, risks of late complications, and recommended screening evaluations
will improve the chances of catching problems at earlier, more treatable stages.
What symptoms should I be alert for?
Be sure to report any new or persistent symptoms to your healthcare provider promptly.
Types of symptoms that you should report include:
Easy bruising or bleeding
 Paleness of the skin
 Excessive fatigue
 Bone pain Changes in moles
 Sores that do not heal Lumps
 Difficulty swallowing
 Changes in bowel habits Persistent abdominal pain
 Blood in the stools
 Blood in the urine
 Painful urination or defecation


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Persistent cough or hoarseness Shortness of breath Bloody sputum Discolored areas or sores in the mouth that do not heal
 Persistent headaches
 Vision changes
 Persistent early morning vomiting.


What can I do to lower the risk of getting a second cancer?
Avoid cancer-promoting habits. Survivors should not smoke or chew tobaccoand should avoid exposure to secondhand smoke when at all possible. Because skincancers are one of the most common second cancers after childhood cancer, especiallyfor those treated with radiation therapy, you should take extra care to protect your skinfrom sun exposure. This includes regularly using sunscreen with sun protection factor(SPF) of 15 or more, wearing protective clothing, avoiding outdoor activities from 10 am
to 2 pm when the sun’s rays are most intense, and not tanning.
Drink alcohol only in moderation. Heavy drinkers, especially those who use tobacco,
have a high risk of cancer of the mouth, throat, and esophagus. The risk of breast
cancer may be increased in women who drink alcohol. Limiting the use of alcohol can
reduce these cancer risks and decrease the chances of other alcohol-related problems,such as liver disease.
Eat right. A high intake of dietary fat has been linked to the risk of several common
adult cancers. People who eat high-fat diets have a greater risk of getting coloncancer; this may also be true for breast and prostate cancers. High-fat diets are also
associated with obesity, heart disease, and other health problems. To reduce all ofthese risks, daily fat intake should be limited to 30% or less of your total calories.
Dietary fiber is found in whole grains, several types of vegetables, and certain fruits.
Fiber reduces the time it takes for wastes to pass through the intestinal tract. High-fiber
foods also tend to be low in fat.
Eating cruciferous vegetables also helps reduce cancer risk. Cruciferous vegetables
include cabbage, brussel sprouts, broccoli, and cauliflower. Eating these vegetables isthought to protect against cancer by blocking the effects of cancer-causing chemicals
in other foods. Cruciferous vegetables are also high in fiber and low in fat. These foods
should be included frequently in the diet.
Some chemicals used to preserve foods are cancer-promoting (carcinogenic) in large
quantities. Diets high in salt-cured and pickled foods and lunchmeats that contain
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Healthy living after treatment for childhood cancer
preservatives like nitrites can increase the risk of cancer in the stomach and esophagus.
Some of these foods, especially lunchmeats, are also high in fat. Foods of this kindshould be eaten rarely and in small portions.
Diets rich in vitamins C and A have been shown to reduce cancer risk in animal studies.
People whose diets are rich in vitamin C appear less likely to get cancer, especiallycancer of the stomach and esophagus. The best way to get these nutrients is to eat
lots of fresh fruits and vegetables. Citrus fruits, melons, cruciferous vegetables, andgreens are high in vitamin C. Good sources of vitamin A are dark green and deep
yellow vegetables and certain fruits. If your diet is low in vitamins, a vitamin supplement
may help, but avoid extra high doses, since these can cause serious side effects.
Start today by taking time to review your health habits, and practice healthy behaviors
that will help keep your risk of second cancers to a minimum.

Written by Melissa M. Hudson MD and Allison Hester, RN, MSN, CPNP, After
Completion of Therapy (ACT) Clinic, St. Jude Children’s Research Hospital, Memphis,
TN. Portions adapted from CCSS Newsletter, Fall 1999 and Winter 2001, used withpermission.
Reviewed by Smita Bhatia MD, MPH, Debra Friedman MD, Fran Wiley RN, MN, and Jill
Meredith RN, BSN, OCN®.

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Healthy living after treatment for childhood cancer

Additional health information for childhood cancer survivors is available atwww.survivorshipguidelines.org
Note: Throughout this Health Links series, the term "childhood cancer" is used to designate pediatric cancers that may
occur during childhood, adolescence, or young adulthood. Health Links are designed to provide health information
for survivors of pediatric cancer, regardless of whether the cancer occurred during childhood, adolescence, or young
adulthood.
Disclaimer and Notice of Proprietary Rights
Introduction to Late Effects Guidelines and Health Links: The "Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers" and accompanying"Health Links" were developed by the Children’s Oncology Group as a collaborative effort of the Late Effects Committee and Nursing Discipline.
For Informational Purposes Only: The information and contents of each document or series of documents made available from by the Children’s Oncology Group relating to lateeffects of cancer treatment and care or containing the title "Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers" or the title "HealthLink", whether available in print or electronic format (including any digital format, e-mail transmission, or download from the website), shall be known hereinafter as "Informational
Content". All Informational Content is for informational purposes only. The Informational Content is not intended to substitute for medical advice, medical care, diagnosis or treatment obtained from a physician or health care provider.
To cancer patients (if children, their parents or legal guardians): Please seek the advice of a physician or other qualified health provider with any questions you may haveregarding a medical condition and do not rely on the Informational Content. The Children’s Oncology Group is a research organization and does not provide individualized
medical care or treatment.
To physicians and other healthcare providers: The Informational Content is not intended to replace your independent clinical judgment, medical advice, or to exclude
other legitimate criteria for screening, health counseling, or intervention for specific complications of childhood cancer treatment. Neither is the Informational Content intended
to exclude other reasonable alternative follow-up procedures. The Informational Content is provided as a courtesy, but not intended as a sole source of guidance inthe evaluation of childhood cancer survivors. The Children’s Oncology Group recognizes that specific patient care decisions are the prerogative of the patient, family, andhealthcare provider.
No endorsement of any specific tests, products, or procedures is made by Informational Content, the Children’s Oncology Group, or affiliated party or member of the Children’s
Oncology Group.
No Claim to Accuracy or Completeness: While the Children's Oncology Group has made every attempt to assure that the Informational Content is accurate and complete as of thedate of publication, no warranty or representation, express or implied, is made as to the accuracy, reliability, completeness, relevance, or timeliness of such Informational Content.
No Liability on Part of Children’s Oncology Group and Related Parties/ Agreement to Indemnify and Hold Harmless the Children’s Oncology Group and Related Parties:
No liability is assumed by the Children's Oncology Group or any affiliated party or member thereof for damage resulting from the use, review, or access of the Informational Content.
You agree to the following terms of indemnification: (i) "Indemnified Parties" include authors and contributors to the Informational Content, all officers, directors, representatives,
employees, agents, and members of the Children’s Oncology Group and affiliated organizations; (ii) by using, reviewing, or accessing the Informational Content, you agree, at yourown expense, to indemnify, defend and hold harmless Indemnified Parties from any and all losses, liabilities, or damages (including attorneys' fees and costs) resulting from any andall claims, causes of action, suits, proceedings, or demands related to or arising out of use, review or access of the Informational Content.
Proprietary Rights: The Informational Content is subject to protection under the copyright law and other intellectual property law in the United States and worldwide. The Children's
Oncology Group retains excursive copyright and other right, title, and interest to the Informational Content and claims all intellectual property rights available under law. You hereby agree to help the Children’s Oncology Group secure all copyright and intellectual property rights for the benefit of the Children’s Oncology Group by taking additional action
at a later time, action which could include signing consents and legal documents and limiting dissemination or reproduction of Informational Content.

Copyright 2006 © Children’s Oncology GroupAll rights reserved worldwide

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Scoliosis and Kyphosis
Version 2.0 - 3/06

Scoliosis and Kyphosis
after Treatment for Childhood Cancer
The spine, or "backbone" is actually a group of bones stacked in a straight line
down the middle of the back, held together with muscles and ligaments. Treatment forchildhood cancer can sometimes result in abnormal curvatures of the spine, known as
scoliosis and kyphosis.
What is scoliosis?
Scoliosis is a sideways rotation of the spine.
Instead of appearing as a straight line whenviewed from the back, the spine appears
curved, like the letter "S" or the letter "C".
Signs of scoliosis may include: Uneven shoulder blades Uneven hips
 Uneven waist
 "Leaning" of the back to one side
 Head not centered above pelvis
 One leg longer than the other
What is kyphosis?
Kyphosis is an abnormal rounding of the upper part of the back. When viewed from theside, it may appear as if the person is slouching or has a "hump" on the back.
What causes scoliosis?
Scoliosis occurs in many young people, especially teenagers, and is most often"idiopathic," meaning that the cause is not known. However, people who have received
radiation, to the chest, abdomen, or spine, especially when combined with surgery, areat increased risk for uneven development of the muscles, bones, and soft tissues of theback, resulting in scoliosis.
What are the risk factors for scoliosis after treatment for childhood cancer?
People at risk include those who had:

Radiation to the trunk (including any area from the shoulders down to the pelvis),
especially if:

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Scoliosis and Kyphosis
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- The dose was 20 Gy (2000 cGy/rads) or higher.
- The radiation treatment area was to one half of the chest or abdomen.
- There was also surgery to the chest, abdomen, or spine.
 A tumor in or near the spine
What causes kyphosis?
Kyphosis sometimes develops from stretching of the spinal ligaments, causing thenatural curve of the spine to increase. Kyphosis can also be caused by unevendevelopment of the back muscles and ligaments as a result of radiation.
What are the risk factors for kyphosis after treatment for childhood cancer?
People at risk include those who had:
Radiation to the chest or upper abdomen, especially in doses of 20 Gy(2000 cGy/rads) or higher
 Spinal radiation at a dose of 30 Gy (3000 cGy/rads) or higher A tumor in or near the spineHow is the diagnosis made?
Signs of scoliosis or kyphosis may be detected on physical examination. X-rays of thespine confirm the diagnosis. Scoliosis is diagnosed when there is at least a 10-degree
lateral (side-to-side) curve on the x-ray. Kyphosis is diagnosed when there is at least a
50-degree curve on the x-ray.
What treatment is needed?
Treatment for kyphosis and scoliosis is usually done in stages. The first stage isusually "observation." During this stage, the curve is closely monitored, especiallyduring periods of rapid growth, such as during puberty. If the curve does not get worse,
observation may be all that is necessary.
If the curve progresses, the next step is usually bracing (a plastic body braceworn under the clothing). The goal of bracing is to halt progression or help correct theabnormal spinal curvature.
The final treatment step is surgery. This is done in cases of serious curves that are not
manageable with observation or bracing alone.

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Scoliosis and Kyphosis
Version 2.0 - 3/06

What monitoring is required?
If scoliosis or kyphosis is suspected, a x-ray of the spine should be obtained. If thecurve is more than 10 degree for scoliosis or more than 50 degrees for kyphosis, areferral is usually made to an orthopedic (bone) specialist.

Written by Wendy Landier, RN, MSN, CPNP, CPON®, Survivorship Clinic, City of Hope
National Medical Center, Duarte, CA.
Reviewed by Melissa M. Hudson MD, Debra Friedman MD, Smita Bhatia MD, MPH,
Louis S. Constine, MD, and Johanne Soucy RN, B.SC.N.
Illustrated by Devika Bhatia.

Additional health information for childhood cancer survivors is available atwww.survivorshipguidelines.org
Note: Throughout this Health Links series, the term "childhood cancer" is used to designate pediatric cancers that may
occur during childhood, adolescence, or young adulthood. Health Links are designed to provide health information
for survivors of pediatric cancer, regardless of whether the cancer occurred during childhood, adolescence, or young
adulthood.
Disclaimer and Notice of Proprietary Rights
Introduction to Late Effects Guidelines and Health Links: The "Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers" and accompanying"Health Links" were developed by the Children’s Oncology Group as a collaborative effort of the Late Effects Committee and Nursing Discipline.
For Informational Purposes Only: The information and contents of each document or series of documents made available from by the Children’s Oncology Group relating to lateeffects of cancer treatment and care or containing the title "Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers" or the title "HealthLink", whether available in print or electronic format (including any digital format, e-mail transmission, or download from the website), shall be known hereinafter as "Informational
Content". All Informational Content is for informational purposes only. The Informational Content is not intended to substitute for medical advice, medical care, diagnosis or treatment obtained from a physician or health care provider.
To cancer patients (if children, their parents or legal guardians): Please seek the advice of a physician or other qualified health provider with any questions you may haveregarding a medical condition and do not rely on the Informational Content. The Children’s Oncology Group is a research organization and does not provide individualized
medical care or treatment.
To physicians and other healthcare providers: The Informational Content is not intended to replace your independent clinical judgment, medical advice, or to exclude
other legitimate criteria for screening, health counseling, or intervention for specific complications of childhood cancer treatment. Neither is the Informational Content intended
to exclude other reasonable alternative follow-up procedures. The Informational Content is provided as a courtesy, but not intended as a sole source of guidance inthe evaluation of childhood cancer survivors. The Children’s Oncology Group recognizes that specific patient care decisions are the prerogative of the patient, family, andhealthcare provider.
No endorsement of any specific tests, products, or procedures is made by Informational Content, the Children’s Oncology Group, or affiliated party or member of the Children’s
Oncology Group.
No Claim to Accuracy or Completeness: While the Children's Oncology Group has made every attempt to assure that the Informational Content is accurate and complete as of thedate of publication, no warranty or representation, express or implied, is made as to the accuracy, reliability, completeness, relevance, or timeliness of such Informational Content.
No Liability on Part of Children’s Oncology Group and Related Parties/ Agreement to Indemnify and Hold Harmless the Children’s Oncology Group and Related Parties:
No liability is assumed by the Children's Oncology Group or any affiliated party or member thereof for damage resulting from the use, review, or access of the Informational Content.
You agree to the following terms of indemnification: (i) "Indemnified Parties" include authors and contributors to the Informational Content, all officers, directors, representatives,
employees, agents, and members of the Children’s Oncology Group and affiliated organizations; (ii) by using, reviewing, or accessing the Informational Content, you agree, at yourown expense, to indemnify, defend and hold harmless Indemnified Parties from any and all losses, liabilities, or damages (including attorneys' fees and costs) resulting from any andall claims, causes of action, suits, proceedings, or demands related to or arising out of use, review or access of the Informational Content.
Proprietary Rights: The Informational Content is subject to protection under the copyright law and other intellectual property law in the United States and worldwide. The Children's
Oncology Group retains excursive copyright and other right, title, and interest to the Informational Content and claims all intellectual property rights available under law. You hereby agree to help the Children’s Oncology Group secure all copyright and intellectual property rights for the benefit of the Children’s Oncology Group by taking additional action
at a later time, action which could include signing consents and legal documents and limiting dissemination or reproduction of Informational Content.

Copyright 2006 © Children’s Oncology GroupAll rights reserved worldwide

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Health Link

Healthy living after treatment for childhood cancer

Single Kidney Health
Version 2.0 - 3/06

Keeping Your Single Kidney Healthy
The kidneys are vital organs responsible for filtering out waste products from the blood,
controlling blood pressure, and stimulating red blood cell production. Treatment for childhood cancer sometimes requires removal of one kidney (nephrectomy). Although you canlive a healthy life with only one kidney, it is important that you take steps to protect yourremaining kidney in order to keep it as healthy as possible.
What follow up is recommended?
Have a medical check-up at least yearly. This should include a blood pressurecheck and urinalysis.

Have a blood test for kidney function (BUN, creatinine) and electrolytes(blood salts and minerals) at your first long-term follow-up visit (at least 2 years
after completing cancer treatment). If problems are detected, follow your healthcare provider’s recommendations.



If you have high blood pressure, protein in the urine, or other signs ofworsening kidney problems, you should have an evaluation by a nephrologist(kidney specialist).

What can I do to keep my kidney healthy?
Drink plenty of water, especially when playing sports, while out in the sun, andduring hot weather.



Call your healthcare provider immediately if you have symptoms of a urinary
tract infection (burning when you urinate, urinating more frequently than usual,
and/or feeling an urgent sensation to urinate).



Check with your healthcare provider or pharmacist before taking any new
medicines (prescription, over-the-counter, or herbal). Be sure that your healthcare
provider or pharmacist is aware that you have a single kidney.

Use non-steroidal anti-inflammatory drugs with caution. These include pain or
fever medicines (over-the-counter and by prescription) that contain aspirin,
ibuprofen, acetaminophen or naproxen. These medications have been known tocause kidney damage (analgesic nephropathy), especially when taken inexcessive doses or when two or more of these medications are combined withcaffeine or codeine and taken over long periods of time. If you require long-term
medications for management of pain, be sure to discuss the alternatives with yourhealthcare provider, and to choose medications that are not harmful to yourkidney.
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Some healthcare providers recommend that people with only one kidney should
avoid contact sports or use a kidney guard if participating in contact sports. Weurge you to discuss your kidney status with your healthcare provider before
making decisions about participation in sports and recreational activities.



The most common cause of kidney injury is due to accidents, most often
involving automobiles, bicycles (especially handlebar injuries), and falls.
Because of this, it is important to use seatbelts properly when riding in a vehicle(lap belts should be worn across the hips, not around the waist), and to use
common sense when bicycling (avoid racing and stunt riding), in order to prevent
kidney injury whenever possible. If you are involved in an accident and a kidney
injury is suspected, seek immediate medical evaluation.

Are there any other risk factors for kidney problems?
Certain treatments for childhood cancer can sometimes cause kidney problems.
These include radiation to the kidney, chemotherapy that can affect the kidney(cisplatin, carboplatin, methotrexate and/or ifosfamide), or other medications that canaffect the kidney (certain antibiotics or medications used for treatment of graft-versushost disease). In addition, other risk factors that may increase the chance of kidney
problems include medical conditions, such as high blood pressure or diabetes, urinary
tract problems such as frequent urinary infections or back-flow of urine into the kidney(reflux), or bladder removal (cystectomy). If you have any of these risk factors, please
read the related Health Link, "Kidney Health."

Written by Wendy Landier, RN, MSN, CPNP, CPON®, Survivorship Clinic, City of Hope
National Medical Center, Duarte, California.
Reviewed by Smita Bhatia MD, MPH, Daniel Green MD, Rebecca L. Pentz PhD, Melissa
M. Hudson MD, Kevin Oeffinger MD, Michael L. Ritchey MD, and Josee Pacifico RN,
BSc (N).

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Healthy living after treatment for childhood cancer

Single Kidney Health
Version 2.0 - 3/06

Additional health information for childhood cancer survivors is available atwww.survivorshipguidelines.org
Note: Throughout this Health Links series, the term "childhood cancer" is used to designate pediatric cancers that may
occur during childhood, adolescence, or young adulthood. Health Links are designed to provide health information
for survivors of pediatric cancer, regardless of whether the cancer occurred during childhood, adolescence, or young
adulthood.
Disclaimer and Notice of Proprietary Rights
Introduction to Late Effects Guidelines and Health Links: The "Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers" and accompanying"Health Links" were developed by the Children’s Oncology Group as a collaborative effort of the Late Effects Committee and Nursing Discipline.
For Informational Purposes Only: The information and contents of each document or series of documents made available from by the Children’s Oncology Group relating to lateeffects of cancer treatment and care or containing the title "Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers" or the title "HealthLink", whether available in print or electronic format (including any digital format, e-mail transmission, or download from the website), shall be known hereinafter as "Informational
Content". All Informational Content is for informational purposes only. The Informational Content is not intended to substitute for medical advice, medical care, diagnosis or treatment obtained from a physician or health care provider.
To cancer patients (if children, their parents or legal guardians): Please seek the advice of a physician or other qualified health provider with any questions you may haveregarding a medical condition and do not rely on the Informational Content. The Children’s Oncology Group is a research organization and does not provide individualized
medical care or treatment.
To physicians and other healthcare providers: The Informational Content is not intended to replace your independent clinical judgment, medical advice, or to exclude
other legitimate criteria for screening, health counseling, or intervention for specific complications of childhood cancer treatment. Neither is the Informational Content intended
to exclude other reasonable alternative follow-up procedures. The Informational Content is provided as a courtesy, but not intended as a sole source of guidance inthe evaluation of childhood cancer survivors. The Children’s Oncology Group recognizes that specific patient care decisions are the prerogative of the patient, family, andhealthcare provider.
No endorsement of any specific tests, products, or procedures is made by Informational Content, the Children’s Oncology Group, or affiliated party or member of the Children’s
Oncology Group.
No Claim to Accuracy or Completeness: While the Children's Oncology Group has made every attempt to assure that the Informational Content is accurate and complete as of thedate of publication, no warranty or representation, express or implied, is made as to the accuracy, reliability, completeness, relevance, or timeliness of such Informational Content.
No Liability on Part of Children’s Oncology Group and Related Parties/ Agreement to Indemnify and Hold Harmless the Children’s Oncology Group and Related Parties:
No liability is assumed by the Children's Oncology Group or any affiliated party or member thereof for damage resulting from the use, review, or access of the Informational Content.
You agree to the following terms of indemnification: (i) "Indemnified Parties" include authors and contributors to the Informational Content, all officers, directors, representatives,
employees, agents, and members of the Children’s Oncology Group and affiliated organizations; (ii) by using, reviewing, or accessing the Informational Content, you agree, at yourown expense, to indemnify, defend and hold harmless Indemnified Parties from any and all losses, liabilities, or damages (including attorneys' fees and costs) resulting from any andall claims, causes of action, suits, proceedings, or demands related to or arising out of use, review or access of the Informational Content.
Proprietary Rights: The Informational Content is subject to protection under the copyright law and other intellectual property law in the United States and worldwide. The Children's
Oncology Group retains excursive copyright and other right, title, and interest to the Informational Content and claims all intellectual property rights available under law. You hereby agree to help the Children’s Oncology Group secure all copyright and intellectual property rights for the benefit of the Children’s Oncology Group by taking additional action
at a later time, action which could include signing consents and legal documents and limiting dissemination or reproduction of Informational Content.

Copyright 2006 © Children’s Oncology GroupAll rights reserved worldwide

Page 3 of 3

Health Link

Healthy living after treatment for childhood cancer

Skin Health
Version 2.0 - 3/06

Skin Health after Childhood Cancer
Very few people realize that the skin is the largest organ in the body. The skin is
the body’s first line of defense against outside invaders. It also keeps the bodytemperature normal and stores water, fat and vitamin D. Such an important organ
requires care and monitoring. Treatment for childhood cancer sometimes causes
damage to the skin.
Who is at risk?
Survivors who received radiation to any part of the body, including total body
irradiation (TBI).
 Survivors with chronic graft versus host disease (GVHD) following bonemarrow or stem cell transplantWhat problems can occur?
The following are possible long-term skin effects that may be seen after cancer therapy.
Telangiectasias
These small blood vessels on the surface of the skin are commonly referred toas "spider veins," and in the cancer survivor they can occur in the field of radiation.
Telangiectasias are caused by changes to the lining of blood vessels resulting fromradiation. These do not typically cause any health problems and require no specificcare.
Fibrosis
Fibrosis is caused by scarring of the lining of blood vessels, resulting in a"woody" skin texture. The skin may not be as flexible in the fibrotic area and may
be more easily injured. Care of fibrotic skin should include routine moisturizing andavoidance of trauma. Because the blood supply is not as good in fibrotic skin,healing may be slow after cuts and scrapes, so avoiding these when at all possible
is important.
Scleroderma
People who have chronic GVHD following bone marrow or stem cell transplant
sometimes develop scleroderma. In this condition, the donor white blood cells do
not recognize the patient’s skin cells as their own, and begin to attack them. This
causes the skin to become stiff and inflexible. This may happen anywhere on thebody, but if it happens to the skin around joints, it can make the joints less mobile.
The therapy for scleroderma is treatment of the underlying GVHD. It is also
important to avoid injury to this skin, since healing time will be prolonged.
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Vitiligo
Vitiligo is loss of pigment on patches of the skin. This can occur after bone marrowor stem cell transplant from a person other than yourself (allogeneic transplant) andmay be due to GVHD or other autoimmune reactions seen after transplant. In thissituation, the white blood cells do not recognize certain normal skin cells(melanocytes) and so they attack and destroy them. Melanoctyes are the cells inthe body that control skin color. Without melanocytes, the skin has a milky white
appearance. Vitiligo usually occurs only in patches. The therapy for vitiligo istreatment of the underlying GVHD or autoimmune process. Even if this therapy is
successful, the color may not return to the skin because the damage to themelanocytes may be permanent. While all skin should be protected from sun, skinthat has lost its pigment is very vulnerable, and sunscreen should always be applied
to these areas before going outdoors.
Hyperpigmentation
Hyperpigmentation is a darkening of the skin that may occur after radiation or some
types of chemotherapy. The chemotherapy agents most commonly associated withhyperpigmenation include bleomycin, busulfan, cyclophosphamide, dactinomycin,
5-flourouracil, hydroxyurea and methotrexate. The dark discoloration can occur
on the skin or nails. There is no specific treatment for hyperpigmentation
associated with cancer therapy, but it usually continues to fade over time without
any treatment.
Skin Cancers
People who have received radiation are at risk for developing skin cancers, usually inthe radiation field. Other risk factors include light skin color, chronic sun exposure,severe sunburn, atypical moles or a large number of moles on the body, and a family
history of skin cancer. The good news about skin cancer is that if it is diagnosed early,
it is usually very treatable. There are three major forms of skin cancer.
Basal Cell Carcinoma (BCC) is the most frequent form of skin cancer. BCC usuallyappears as a rough, raised, area of skin. As the BCC progresses, it may become an
ulcer or sore that does not heal. BCC can occur anywhere on the skin, but is seen
most frequently in areas of sun and/or radiation exposure. Protecting your skin fromthe sun is the most important thing you can do to avoid developing BCC. Treatment
for BCC is surgical removal of the affected skin. BCC can spread to surrounding
tissues but does not usually spread throughout the body and is not usually life
threatening.
Squamous cell carcinoma (SCC) is another form of skin cancer that can develop
from exposure to sun or radiation. Its appearance is similar to BCC, usually an
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Skin Health
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ulcerated sore that does not heal. SCC can be more aggressive than BCC and canspread more readily to surrounding tissues and even to other parts of the body. With
early surgical treatment SCC is usually curable, so it is important to report any
suspicious sores to your healthcare provider right away.
Melanoma is a much more serious form of skin cancer. Unlike BCC, left untreated it
can spread to other organs and can be lethal. Melanoma often arises from moles.
The key to successful treatment of melanoma is early diagnosis. Moles should bemonitored for the changes. Monitoring of moles can be remembered using the"ABCD" warning signs:
A is for Asymmetry (one half of the mole looks different than the other half)
B is for Border (moles that have an irregular, scalloped or poorly defined border)
C is for Color (variations in color from one area of the mole to another, such as
different shades of tan and brown or black, or colors such as white, red or blue
within a mole)
D is for Diameter (moles larger than 6 millimeters – about the diameter of a pencil
eraser – should be evaluated).
If you notice any of the "ABCD" changes, have your healthcare provider check the mole.
Moles that have any of these changes usually need to be removed.
What monitoring is needed?
If you have any of the following risk factors, you should check your skin monthly
for changes, and have a thorough skin examination by a healthcare provider at
least once a year: You received radiation to any area, including total body irradiation (TBI) You have ever had skin cancer or melanoma, or you have a family history of skincancer or melanoma
 You have "dysplastic" (atypical) moles You had a severe sunburn at a young age
What can I do to keep my skin healthy?
The most important thing to remember in caring for your skin is to protect it from thesun. Here are some things you can do:Wear protective clothing or sunscreen at all times when your skin is exposed tothe sun, even on cloudy or hazy days. The American Cancer Society recommends
a sunscreen with an SPF (sun protection factor) of 15 or higher.

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Skin Health
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Sand, snow, concrete, water and high altitudes all increase the risk of sun
damage – take extra caution to protect your skin in these environments.
 Do not attempt to tan your skin - avoid tanning booths.
 Avoid outdoor activities from 10am to 2pm when the sun’s rays are most intense(11am to 3pm during daylight savings time). Plan outdoor activities in the earlymorning or late afternoon hours.
 Reapply sunscreen frequently or use a water resistant sunscreen when swimmingor perspiring heavily. This will not only help to protect you from developing skinproblems, but will also help you to maintain a youthful appearance.


If you have any questions or concerns about your skin, contact your healthcare provider.
Take good care of your skin and it will take care of you!

Written by Kathy Ruble, RN, CPNP, AOCN®, Long Term Follow-up Program, Johns
Hopkins University, Baltimore, MD.
Reviewed by Julie Blatt MD, Louis S. Constine MD, Rebecca D. Pentz PhD, Wendy
Landier CPNP, and Debra Friedman MD.

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Healthy living after treatment for childhood cancer

Skin Health
Version 2.0 - 3/06

Additional health information for childhood cancer survivors is available atwww.survivorshipguidelines.org
Note: Throughout this Health Links series, the term "childhood cancer" is used to designate pediatric cancers that may
occur during childhood, adolescence, or young adulthood. Health Links are designed to provide health information
for survivors of pediatric cancer, regardless of whether the cancer occurred during childhood, adolescence, or young
adulthood.
Disclaimer and Notice of Proprietary Rights
Introduction to Late Effects Guidelines and Health Links: The "Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers" and accompanying"Health Links" were developed by the Children’s Oncology Group as a collaborative effort of the Late Effects Committee and Nursing Discipline.
For Informational Purposes Only: The information and contents of each document or series of documents made available from by the Children’s Oncology Group relating to lateeffects of cancer treatment and care or containing the title "Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers" or the title "HealthLink", whether available in print or electronic format (including any digital format, e-mail transmission, or download from the website), shall be known hereinafter as "Informational
Content". All Informational Content is for informational purposes only. The Informational Content is not intended to substitute for medical advice, medical care, diagnosis or treatment obtained from a physician or health care provider.
To cancer patients (if children, their parents or legal guardians): Please seek the advice of a physician or other qualified health provider with any questions you may haveregarding a medical condition and do not rely on the Informational Content. The Children’s Oncology Group is a research organization and does not provide individualized
medical care or treatment.
To physicians and other healthcare providers: The Informational Content is not intended to replace your independent clinical judgment, medical advice, or to exclude
other legitimate criteria for screening, health counseling, or intervention for specific complications of childhood cancer treatment. Neither is the Informational Content intended
to exclude other reasonable alternative follow-up procedures. The Informational Content is provided as a courtesy, but not intended as a sole source of guidance inthe evaluation of childhood cancer survivors. The Children’s Oncology Group recognizes that specific patient care decisions are the prerogative of the patient, family, andhealthcare provider.
No endorsement of any specific tests, products, or procedures is made by Informational Content, the Children’s Oncology Group, or affiliated party or member of the Children’s
Oncology Group.
No Claim to Accuracy or Completeness: While the Children's Oncology Group has made every attempt to assure that the Informational Content is accurate and complete as of thedate of publication, no warranty or representation, express or implied, is made as to the accuracy, reliability, completeness, relevance, or timeliness of such Informational Content.
No Liability on Part of Children’s Oncology Group and Related Parties/ Agreement to Indemnify and Hold Harmless the Children’s Oncology Group and Related Parties:
No liability is assumed by the Children's Oncology Group or any affiliated party or member thereof for damage resulting from the use, review, or access of the Informational Content.
You agree to the following terms of indemnification: (i) "Indemnified Parties" include authors and contributors to the Informational Content, all officers, directors, representatives,
employees, agents, and members of the Children’s Oncology Group and affiliated organizations; (ii) by using, reviewing, or accessing the Informational Content, you agree, at yourown expense, to indemnify, defend and hold harmless Indemnified Parties from any and all losses, liabilities, or damages (including attorneys' fees and costs) resulting from any andall claims, causes of action, suits, proceedings, or demands related to or arising out of use, review or access of the Informational Content.
Proprietary Rights: The Informational Content is subject to protection under the copyright law and other intellectual property law in the United States and worldwide. The Children's
Oncology Group retains excursive copyright and other right, title, and interest to the Informational Content and claims all intellectual property rights available under law. You hereby agree to help the Children’s Oncology Group secure all copyright and intellectual property rights for the benefit of the Children’s Oncology Group by taking additional action
at a later time, action which could include signing consents and legal documents and limiting dissemination or reproduction of Informational Content.

Copyright 2006 © Children’s Oncology GroupAll rights reserved worldwide

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Healthy living after treatment for childhood cancer

Splenic Precautions
Version 2.0 - 3/06

Precautions for People
Without a Functioning Spleen
What is the spleen?
The spleen is an organ located in the upper left side of theabdomen, tucked under the rib cage, behind the stomach. It is
normally about the size of a person’s fist. The spleen produces
antibodies and filters bacteria from the blood. This helps the
body to fight infections.
What are the risk factors for a non-functioning spleen?
Surgical removal of the spleen (splenectomy)
 High dose of radiation (at least 40 Gy/4000 cGy) to thespleen Chronic graft versus host disease (cGVHD) followingbone marrow or stem cell transplantWhat problems can occur in people with a non-functioning spleen?
People without a spleen or those who have a spleen that is non-functioning are atincreased risk for developing serious infections. These infections can be fatal if nottreated immediately. The types of infections most likely to occur in people without afunctioning spleen are those caused by encapsulated bacteria (germs with an outercoating that protect them from the body’s immune system). Some common types of
encapsulated bacteria include Streptococcus pneumoniae, Haemophilus influenzae,
and Neisseria meningitidis.
What are the signs of infection?
Fever is a sign of infection. Often, fever is caused by a virus (like the flu) and not by
dangerous bacteria. However, there is no way to know if bacteria are the causeof a fever unless a blood culture is done (by taking a blood sample and testing it for thepresence of bacteria). Unfortunately, it takes anywhere from a few hours to a few days
for the blood culture results to become available. Therefore, whenever you have afever you must be treated with antibiotics as if you had a serious infection, at least
until the blood culture results are known.
Other symptoms of infection include unusual tiredness, muscle aches, chills, headache,vomiting, diarrhea, and abdominal pain. These symptoms can be warning signs of

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Splenic Precautions
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infection even if you do not have a fever. Check with your healthcare provider if you
develop these symptoms. Take your temperature regularly any time that you develop
symptoms of illness. If you are having symptoms that you are not sure are related to an
infection, contact your healthcare provider for further recommendations.
What should I do if I get a fever?
If your temperature is 101ºF (38.3ºC) or higher you should:
Seek immediate medical attention (even if you are taking antibiotics).
 Tell your healthcare provider that you do not have a functioning spleen.
 Report any symptoms that you are experiencing (such as those listed above).
 Have a blood sample taken for blood count and culture.
 Receive a strong antibiotic (by injection into a vein or muscle), at least until theblood culture results are available.
Is there anything I can do to prevent infections?
Vaccines: Vaccines may reduce your chances of a serious infection. We recommendthat you receive the Pneumococcal, Meningococcal, and HIB (Haemophilus
influenzae type B) vaccines. Check with your healthcare provider to see whether you
have had all of these vaccines and whether you need booster doses (additional doses
given after the original vaccine). Everyone should have a booster dose of
Pneumococcal vaccine, which should be given at least 5 years after the first shot andwhen the person is at least 10 years old. Many healthcare providers also recommend
yearly influenza (flu) vaccine, in order to reduce the risk of bacterial infections that cansometimes occur as a complication of the flu. It’s also important to know that even if
you have received vaccines, you are still at risk for infection, because vaccination
is not 100% protective.
Antibiotics: Some healthcare providers may recommend that you take daily preventive(prophylactic) antibiotic pills, such as penicillin, with the hope of preventing serious bacterial infections. Others may give you a prescription to have on hand and instruct you
to start taking antibiotics at the first sign of illness. Still others may recommend a prescription for antibiotics only if you are traveling to an area where it will be difficult toobtain medical care. In any case, whether or not you are taking antibiotics, it isessential that you seek immediate medical attention any time that you develop
fever, chills, or other symptoms of serious illness. Delaying a medical visit for even

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a few hours can be very dangerous for you, because if you do have a bacterial infection,
it can worsen rapidly.
Other precautions:Because you do not have a functioning spleen, you are also at increased risk forproblems with the following infections:
Malaria: If you travel to countries where malaria is common, take special
precautions to avoid getting malaria. Ask your healthcare provider for anti-malarial
medications before you travel to infested areas. During travel, use insect
repellants and other protective measures, such as netting and protective clothing.
Animal/Human Bites: Animal and human bites can result in serious bacterial
infections. If you receive a bite that breaks the skin, you should seek immediate
medical attention for treatment with antibiotics.
Ticks: People without a functioning spleen are at increased risk for an infection
caused by Babesia, a germ transmitted by deer ticks. These ticks are most commonly found in the northeastern United States and in some European countries.
(Note: this is not the type of germ that causes lyme disease). You should wear
protective clothing and use insect repellants when going outdoors in tick-infested
areas. If you receive a tick bite while in an area infested with Babesia, you should
remove the tick and talk to your healthcare provider about what to do.
How will my healthcare providers know about my non-functioning spleen?
Be sure to tell all of your doctors, dentists, and other healthcare providers that you do
not have a functioning spleen. You should also wear a medical alert emblem (braceletor necklace) so that in case you are unable to communicate in a medical emergency,
you will be readily identified as not having a functioning spleen.
We also recommend that you carry a wallet card, such as the one below, with guidelines
for healthcare professionals regarding the management of fever in people without afunctioning spleen.

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Splenic Precautions
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Wallet Card for Patients Without a Functioning Spleen

MEDICAL ALERT:
Asplenic Patient
Patient Name:________________________

Physician Name:________________________

Physician Phone:________________________

Medical Alert: Asplenic PatientThis patient is asplenic and at risk for potentially fatal, overwhelming
infections. Immediate medical attention is required for fever of >101GF(38.3GC) or other signs of serious illness. Suggested management
includes:1) Physical exam, CBC and blood culture.
2) Administration of a long-acting, broad-spectrum parenteral antibiotic(e.g., ceftriaxone) accompanied by close clinical monitoring while
awaiting blood culture results.
3) Hospitalization and broadening of antimicrobial coverage (e.g.,
addition of vancomycin) may be necessary under certain
circumstances, such as the presence of marked leukocytosis,
neutropenia, or significant change from baseline CBC; toxic clinicalappearance; fever >104GF; meningitis, pneumonia, or other serious
focus of infection; signs of septic shock; or previous history ofserious infection.

Written by Teresa Sweeney, RN, MSN, CPNP, After Completion of Therapy (ACT) Clinic, St. JudeChildren’s Research Hospital, Memphis, TN.
Reviewed by Smita Bhatia, MD, MPH, Julie Blatt, MD, Melissa M. Hudson, MD, Kevin Oeffinger, MD, Lise
Yasui, Wendy Landier, CPNP, Lisa Bashore, MS, RN, CPNP, CPON® and the COG Late Effects Committee.
Illustrated by Devika Bhatia.

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Additional health information for childhood cancer survivors is available atwww.survivorshipguidelines.org
Note: Throughout this Health Links series, the term "childhood cancer" is used to designate pediatric cancers that may
occur during childhood, adolescence, or young adulthood. Health Links are designed to provide health information
for survivors of pediatric cancer, regardless of whether the cancer occurred during childhood, adolescence, or young
adulthood.
Disclaimer and Notice of Proprietary Rights
Introduction to Late Effects Guidelines and Health Links: The "Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers" and accompanying"Health Links" were developed by the Children’s Oncology Group as a collaborative effort of the Late Effects Committee and Nursing Discipline.
For Informational Purposes Only: The information and contents of each document or series of documents made available from by the Children’s Oncology Group relating to lateeffects of cancer treatment and care or containing the title "Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers" or the title "HealthLink", whether available in print or electronic format (including any digital format, e-mail transmission, or download from the website), shall be known hereinafter as "Informational
Content". All Informational Content is for informational purposes only. The Informational Content is not intended to substitute for medical advice, medical care, diagnosis or treatment obtained from a physician or health care provider.
To cancer patients (if children, their parents or legal guardians): Please seek the advice of a physician or other qualified health provider with any questions you may haveregarding a medical condition and do not rely on the Informational Content. The Children’s Oncology Group is a research organization and does not provide individualized
medical care or treatment.
To physicians and other healthcare providers: The Informational Content is not intended to replace your independent clinical judgment, medical advice, or to exclude
other legitimate criteria for screening, health counseling, or intervention for specific complications of childhood cancer treatment. Neither is the Informational Content intended
to exclude other reasonable alternative follow-up procedures. The Informational Content is provided as a courtesy, but not intended as a sole source of guidance inthe evaluation of childhood cancer survivors. The Children’s Oncology Group recognizes that specific patient care decisions are the prerogative of the patient, family, andhealthcare provider.
No endorsement of any specific tests, products, or procedures is made by Informational Content, the Children’s Oncology Group, or affiliated party or member of the Children’s
Oncology Group.
No Claim to Accuracy or Completeness: While the Children's Oncology Group has made every attempt to assure that the Informational Content is accurate and complete as of thedate of publication, no warranty or representation, express or implied, is made as to the accuracy, reliability, completeness, relevance, or timeliness of such Informational Content.
No Liability on Part of Children’s Oncology Group and Related Parties/ Agreement to Indemnify and Hold Harmless the Children’s Oncology Group and Related Parties:
No liability is assumed by the Children's Oncology Group or any affiliated party or member thereof for damage resulting from the use, review, or access of the Informational Content.
You agree to the following terms of indemnification: (i) "Indemnified Parties" include authors and contributors to the Informational Content, all officers, directors, representatives,
employees, agents, and members of the Children’s Oncology Group and affiliated organizations; (ii) by using, reviewing, or accessing the Informational Content, you agree, at yourown expense, to indemnify, defend and hold harmless Indemnified Parties from any and all losses, liabilities, or damages (including attorneys' fees and costs) resulting from any andall claims, causes of action, suits, proceedings, or demands related to or arising out of use, review or access of the Informational Content.
Proprietary Rights: The Informational Content is subject to protection under the copyright law and other intellectual property law in the United States and worldwide. The Children's
Oncology Group retains excursive copyright and other right, title, and interest to the Informational Content and claims all intellectual property rights available under law. You hereby agree to help the Children’s Oncology Group secure all copyright and intellectual property rights for the benefit of the Children’s Oncology Group by taking additional action
at a later time, action which could include signing consents and legal documents and limiting dissemination or reproduction of Informational Content.

Copyright 2006 © Children’s Oncology GroupAll rights reserved worldwide

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Healthy living after treatment for childhood cancer

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Thyroid Problems after Childhood Cancer
Some people who were treated for cancer during childhood may develop endocrine(hormone) problems as a result of changes in the function of a complex system ofglands known as the endocrine system.
What is the endocrine system?
The endocrine system is a group of glands that regulate many body functions including
growth, puberty, energy level, urine production, and stress response. Glands of theendocrine system include the pituitary, hypothalamus, thyroid, adrenals, pancreas,ovaries (in females), and testes (in males). The hypothalamus and pituitary aresometimes called the "master glands" because they control many of the other glands inthe endocrine system. Unfortunately, some treatments given for childhood cancer candamage the endocrine system, resulting in a variety of problems.

What are hormones?
Hormones are chemical messengers that carry information from the endocrine glands
through the bloodstream to the body’s cells. The endocrine system makes many
hormones (such as growth hormone, sex hormones, adrenal and thyroid hormones) thatwork together to maintain specific bodily functions.

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What is the thyroid gland?
The thyroid gland is located in the lower part of the neckin front of the windpipe. The gland makes two hormones,
thyroxine (T4) and triiodothyronine (T3), that play an important role in growth and mental development, and help toregulate the body’s metabolism. The thyroid gland iscontrolled by the pituitary, a gland in the brain that makes
thyroid stimulating hormone (TSH). TSH is released fromthe pituitary in response to the levels of T4 and T3 in the
blood. If the levels are low, the pituitary makes more TSH tosignal the thyroid to increase the production of thyroid
hormones. If T4 and T3 are high, the pituitary makes less TSH to signal the thyroid
gland to slow down production.
The possible late effects
Damage to the thyroid gland after childhood cancer is usually the result of radiation to
the head, brain or neck. This damage is usually very easy to treat, although it may notshow up for years after treatment. Regular check-ups may help find thyroid problems
early so that the proper treatment can be started. Several different types of thyroid
problems may develop including an underactive thyroid (hypothyroidism), overactive
thyroid (hyperthyroidism), and growths on the thyroid that may be benign (nodules) ormalignant (cancer). Surgical removal of the thyroid gland (thyroidectomy), radioiodine
treatments (I-131 thyroid ablation), and high doses of MIBG (sometimes used in thetreatment of neuroblastoma) may also result in low or absent levels of thyroid hormone,depending on the amount of thyroid tissue removed or destroyed.
Hypothyroidism occurs when the thyroid gland is not active enough. This is the mostcommon thyroid problem seen in childhood cancer survivors. When the thyroid gland isunderactive, thyroid hormone levels are low and the body’s metabolism slows down.
There are three different types of hypothyroidism seen in childhood cancer survivors:Primary hypothyroidism is caused by direct damage to (or surgical removal of)
the thyroid gland. Blood tests in people with primary hypothyroidism show ahigh TSH because the pituitary gland is responding to the lower than normal
levels of T3 and T4 produced by the damaged thyroid gland.

Central hypothyroidism is caused by damage to the hypothalamus or pituitary
gland in the brain. Blood tests in people with central hypothyroidism show low
TSH, T3 and T4 levels because the pituitary gland does not produce enoughCopyright 2006 © Children’s Oncology GroupAll rights reserved worldwide

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TSH to signal the thyroid gland to keep the proper levels of T3 and T4 in the
blood.
Compensated hypothyroidism occurs when the pituitary gland has to overwork
the thyroid gland to keep the level of thyroid hormones normal in the blood.
This may be a temporary problem after radiation, or it may be a sign that the
thyroid gland is beginning to fail. Blood tests in people with compensatedhypothyroidism show higher than normal TSH levels and normal T3 and T4
levels. Some survivors with compensated hypothyroidism may be treated withthyroid hormone in order to decrease the workload on the thyroid gland.

Signs and symptoms of hypothyroidism may include:
Feeling tired and listless Hoarse voice Problems concentrating
 Feeling sad/depressed Mood changes
 Constipation
 Weakness
 Feeling cold all of the time Puffiness around the eyes
 Slowing of normal growth Delayed onset of puberty
 Puffiness of the face and hands
 Weight gain Dry skin Brittle hair
 Muscle and joint aches
 Slowing of the heart rate
 Low blood pressure High cholesterol level Poor exercise toleranceHyperthyroidism occurs when the thyroid gland is too active. In this condition thyroid
hormone levels are high and the body’s metabolism speeds up.

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Signs and symptoms of hyperthyroidism may include:
Jitteriness Anxiety Problems concentrating
 Feeling tired
 Muscle weakness
 Tremors Fast or irregular heartbeat
 Increased sweating
 Feeling hot all of the time Diarrhea
 Weight loss Irregular menstrual periods
 Bulging or protruding eyes Neck tenderness and swelling Poor exercise tolerance

Thyroid nodules and thyroid cancer are growths that may occur many years afterradiation to the thyroid gland. Both usually begin as slow-growing, painless lumps in
the neck. Most thyroid growths do not usually cause any symptoms.
Who is at risk for thyroid problems?
People who received radiation that may have affected the thyroid gland directly are at
risk for primary hypothyroidism, compensated hypothyroidism, thyroid nodules, and/or
thyroid cancer. People who received radiation to the thyroid gland in high doses (at least
40 Gy or 4000 cGy/rads) are also at risk for hyperthyroidism. The following radiation
fields have the potential to affect the thyroid gland directly:
Head/brain (cranial) Nose, mouth, and/or throat (nasopharyngeal, oropharyngeal) Neck (cervical, supraclavicular, mantle, or mini-mantle)
 Spine (cervical/neck portion)
 Total body irradiation (TBI)In addition, people who received radioiodine therapy (I-131), high doses of MIBG, or had
their thyroid gland surgically removed (thyroidectomy) are also at risk for primary
hypothyroidism.

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People who received radiation that may have affected the pituitary gland in the brain are
at risk for central hypothyroidism. Radiation in high doses (at least 40 Gy or 4000
cGy/rads) to the following fields have the potential to affect the pituitary gland:
Head/brain (cranial)
 Eye/orbit
 Ear/infratemporal region (midfacial area behind the cheekbones)
 Nose, mouth, and/or throat (nasopharyngeal, oropharyngeal)

Other factors that have been shown to increase the risk of thyroid problems afterchildhood cancer include being:
Female Treated with higher radiation doses
 Treated at a young age
Thyroid problems may occur soon after radiation, but generally do not occur until
several years later. If treated promptly, thyroid problems are easily managed.
What follow up is needed for those at risk?
Since thyroid problems may occur many years after cancer treatment, a yearly checkup is recommended for survivors who are at risk of developing thyroid problems. This
check-up should include evaluation of growth in children and teens, examination of the
thyroid gland, and a blood test to measure the levels of TSH and T4. During periods ofrapid growth, healthcare providers may recommend more frequent monitoring of thyroid
levels.
Female survivors at risk for thyroid problems who are planning to become pregnant
should have their thyroid levels checked before attempting pregnancy. It is important to
do this before becoming pregnant, because mothers with thyroid disease have a higher
chance of having babies with developmental problems. It is also important to monitor
thyroid levels periodically during pregnancy.
How are thyroid problems treated?
If problems with thyroid levels are identified, you may be referred to an endocrinologist(hormone specialist) for continuing treatment. If a lump is detected on the thyroid, you
may be referred to a surgeon or other specialist for evaluation and management.

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All types of hypothyroidism are treated with daily thyroid pills. Treatment is usually forlife. In some cases of compensated hypothyroidism, treatment may be stopped if the
thyroid gland begins to work normally.
Hyperthyroidism may be treated in several ways. Sometimes medication is given on atemporary basis to prevent thyroid hormone production. Thyroid ablation (destroying
the hormone-producing cells in the gland by drinking a radioactive liquid iodine called
I-131) may be done. Surgery to remove the thyroid gland is another treatment. Your
healthcare provider will determine which treatment option is the best choice for you.
Treatment for hyperthyroidism may result in hypothyroidism, which is then treated witha daily thyroid pill.
Thyroid nodules. Thyroid growths need additional testing. This is generally donewith an ultrasound (picture made using sound waves) and biopsy (sampling the thyroid
tissue to check for cancer cells). Surgery may be done to remove enlarging nodules
because of the concern about thyroid cancer.
Thyroid cancer. Treatment for thyroid cancer involves surgery to remove the cancer
and as much additional normal thyroid tissue as the surgeon feels is necessary. After
surgery, additional treatment with radioactive iodine (I-131) may be needed to destroy
any remaining thyroid tissue. After treatment for thyroid cancer, most individuals willneed to take daily thyroid pills.

Written by Melissa M. Hudson, MD After Completion of Therapy (ACT) Clinic, St. JudeChildren’s Research Hospital, Memphis, TN and Wendy Landier, RN, MSN, CPNP,
CPON®, Survivorship Clinic, City of Hope National Medical Center, Duarte, CA
Reviewed by Charles Sklar MD, Debra L. Friedman MD, Julie Blatt MD, Joan Darling PhD
and Susan Shaw, RN, MS, PNP.
Illustrated by Devika Bhatia.

Copyright 2006 © Children’s Oncology GroupAll rights reserved worldwide

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Healthy living after treatment for childhood cancer

Thyroid Problems
Version 2.0 - 3/06

Additional health information for childhood cancer survivors is available atwww.survivorshipguidelines.org
Note: Throughout this Health Links series, the term "childhood cancer" is used to designate pediatric cancers that may
occur during childhood, adolescence, or young adulthood. Health Links are designed to provide health information
for survivors of pediatric cancer, regardless of whether the cancer occurred during childhood, adolescence, or young
adulthood.
Disclaimer and Notice of Proprietary Rights
Introduction to Late Effects Guidelines and Health Links: The "Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers" and accompanying"Health Links" were developed by the Children’s Oncology Group as a collaborative effort of the Late Effects Committee and Nursing Discipline.
For Informational Purposes Only: The information and contents of each document or series of documents made available from by the Children’s Oncology Group relating to lateeffects of cancer treatment and care or containing the title "Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers" or the title "HealthLink", whether available in print or electronic format (including any digital format, e-mail transmission, or download from the website), shall be known hereinafter as "Informational
Content". All Informational Content is for informational purposes only. The Informational Content is not intended to substitute for medical advice, medical care, diagnosis or treatment obtained from a physician or health care provider.
To cancer patients (if children, their parents or legal guardians): Please seek the advice of a physician or other qualified health provider with any questions you may haveregarding a medical condition and do not rely on the Informational Content. The Children’s Oncology Group is a research organization and does not provide individualized
medical care or treatment.
To physicians and other healthcare providers: The Informational Content is not intended to replace your independent clinical judgment, medical advice, or to exclude
other legitimate criteria for screening, health counseling, or intervention for specific complications of childhood cancer treatment. Neither is the Informational Content intended
to exclude other reasonable alternative follow-up procedures. The Informational Content is provided as a courtesy, but not intended as a sole source of guidance inthe evaluation of childhood cancer survivors. The Children’s Oncology Group recognizes that specific patient care decisions are the prerogative of the patient, family, andhealthcare provider.
No endorsement of any specific tests, products, or procedures is made by Informational Content, the Children’s Oncology Group, or affiliated party or member of the Children’s
Oncology Group.
No Claim to Accuracy or Completeness: While the Children's Oncology Group has made every attempt to assure that the Informational Content is accurate and complete as of thedate of publication, no warranty or representation, express or implied, is made as to the accuracy, reliability, completeness, relevance, or timeliness of such Informational Content.
No Liability on Part of Children’s Oncology Group and Related Parties/ Agreement to Indemnify and Hold Harmless the Children’s Oncology Group and Related Parties:
No liability is assumed by the Children's Oncology Group or any affiliated party or member thereof for damage resulting from the use, review, or access of the Informational Content.
You agree to the following terms of indemnification: (i) "Indemnified Parties" include authors and contributors to the Informational Content, all officers, directors, representatives,
employees, agents, and members of the Children’s Oncology Group and affiliated organizations; (ii) by using, reviewing, or accessing the Informational Content, you agree, at yourown expense, to indemnify, defend and hold harmless Indemnified Parties from any and all losses, liabilities, or damages (including attorneys' fees and costs) resulting from any andall claims, causes of action, suits, proceedings, or demands related to or arising out of use, review or access of the Informational Content.
Proprietary Rights: The Informational Content is subject to protection under the copyright law and other intellectual property law in the United States and worldwide. The Children's
Oncology Group retains excursive copyright and other right, title, and interest to the Informational Content and claims all intellectual property rights available under law. You hereby agree to help the Children’s Oncology Group secure all copyright and intellectual property rights for the benefit of the Children’s Oncology Group by taking additional action
at a later time, action which could include signing consents and legal documents and limiting dissemination or reproduction of Informational Content.

Copyright 2006 © Children’s Oncology GroupAll rights reserved worldwide

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