Long-Term Follow-Up Guidelines
for Survivors of Childhood, Adolescent,and Young Adult Cancers

Version 1.2 – March 2004

Appendix
Health Links
Healthy living after treatment for childhood cancer

Long-Term Follow-Up Guidelines for Survivors ofChildhood, Adolescent, and Young Adult Cancers
Version 1.2 – March 2004

APPENDIX
Patient Education Materials – “Health Links”
Health Link
Avascular Necrosis
Bleomycin Alert
Bone Health: Keeping Your Bones Healthy after Treatment forChildhood Cancer
Breast Cancer following Treatment for Childhood Cancer
Central Adrenal Insufficiency
Dental Health following Childhood Cancer Treatment
Educational Issues following Treatment for Childhood Cancer
Emotional Issues after Childhood Cancer
Eye Problems after Treatment for Childhood Cancer
Female Health Issues after Childhood Cancer
Finding Appropriate Healthcare after Childhood Cancer
Growth Hormone Deficiency
Health Promotion through Diet and Physical Activity
Hearing Problems after Childhood Cancer
Heart Problems following Treatment for Childhood Cancer
Hepatitis after Childhood Cancer
Hyperprolactinemia
Hypopituitarism
Introduction to Long-Term Follow-Up
Kidney Health
Limb Salvage after Bone Cancer
Liver HealthMale Health Issues after Childhood Cancer
Peripheral Neuropathy
Precocious Puberty
Pulmonary Health
Raynaud’s Phenomenon
Reducing the Risk of Second Cancers
Scoliosis and Kyphosis after Treatment for Childhood Cancer
Single Kidney Precautions
Skin Health
Splenic Precautions
Thyroid Problems after Childhood Cancer

Associated Guideline Topic(s)262317, 25, 100
63, 10443
3, 48, 49
1, 15, 20, 36, 91
1
7, 27, 51
4, 45, 74, 75
240
14, 46, 65
11, 5222, 6570, 81, 82
41
40, 42, 43, 45
1
10, 13, 18, 68, 86, 90
89
16, 19, 24, 69, 97
4, 45, 79, 92, 93
12, 2944
6, 23, 66, 94, 98
30
5, 9, 21, 31, 33, 34, 70, 73, 78,
101, 105-112
60, 61
90
32, 34, 102, 111
67, 9542, 53, 54, 55, 56

Avascular Necrosis
Version 1.2- 3/04

Avascular Necrosis (AVN)
What is Avascular Necrosis?
Avascular necrosis (AVN) is a disorder resulting from a temporary or permanent loss ofblood supply to the bone. Blood carries essential nutrients and oxygen to the bones.
When the blood supply is disrupted (avascular), the bone tissues begin to break down
(necrosis). This can weaken the bone and eventually result in its collapse. If this occurs
near a joint, it can lead to the collapse of the joint surface, resulting in pain andinflammation (arthritis). AVN is also referred to as osteonecrosis, aseptic necrosis, andischemic bone necrosis.
AVN can occur in any bone, but most commonly affects the ends (epiphysis) of longbones such as the thigh bone (femur), causing hip and knee problems. Other common
sites include the bones of the upper arms, shoulders, and ankles. AVN can occur in asingle bone, but more commonly occurs in several bones at one time (multifocal AVN).
AVN can sometimes be disabling, depending on what part of the bone is affected, howlarge an area is involved, and how well the bone rebuilds itself. Normal bone
continuously breaks down and rebuilds itself. This process keeps the bones strong.
AVN is the result of bone tissues breaking down faster than the body can repair them. If
the disorder progresses, it can lead to pain and arthritis.
What causes AVN?

Healthy living after treatment for childhood cancer

Health Link

AVN is caused by interruption of the blood supply to the bone. If blood vessels areblocked with fat, become too thick or too small, or get too weak, they may not be able toprovide the amount of blood necessary for the bone tissue to survive.
Corticosteroids (such as prednisone and dexamethasone) given during cancer treatment
can affect the bone and blood vessels, resulting in AVN. Other factors that increase therisk of AVN in people who received corticosteroid therapy include treatment with highdoses of radiation to weight bearing bones, treatment with orthovoltage radiation(commonly used before 1970), being older than 10 at the time of treatment, and having
sickle cell disease. AVN is most likely to occur during cancer treatment, but it cansometimes happen after completion of cancer therapy.
Steroids and AVN
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 AVN, 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 tonarrow. This reduces the amount of blood that gets into the bone.
What are the symptoms of AVN?
People in the early stages of AVN may not have any symptoms. However, as thedisorder progresses, most people will experience some joint pain. At first, the person
may only experience pain when bearing weight on the affected bone or joint. As the
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Avascular Necrosis
Version 1.2- 3/04

disorder progresses, symptoms may be present even at rest.
gradually and its intensity can range from mild to severe.

Pain may develop

If AVN progresses and the bone and surrounding joint surfaces collapse, the pain can
increase considerably and may become severe enough to limit movement in theaffected joint. The period of time between the first symptoms of AVN and the loss ofjoint function is different for each person and ranges from several months to years.
How is AVN diagnosed?
An x-ray is usually the first test to be done when AVN is suspected. It can help
distinguish AVN from other causes of bone pain, such as fracture. In the early stages of
AVN, an x-ray may appear normal, so other tests may need to be done to establish thediagnosis. Once the diagnosis has been made, and in the later stages of AVN, x-rays
are useful in monitoring the course of the condition. MRI is one of the most useful tools
in diagnosing AVN because it can detect AVN in the earliest stages, when symptoms
are not yet present. Bone scans are sometimes used to diagnose AVN. They areuseful because one scan can show all the areas in the body affected by AVN.
However, bone scans do not detect AVN at the earliest stages. A CT scan provides athree-dimensional image of the bone and can be useful in determining the extent ofbone damage. Surgical procedures such as a bone biopsy can conclusively diagnose
AVN, but are not commonly done.
How is AVN treated?
The goals of treatment for AVN are to improve the person’s use of the affected joint,
reduce pain, stop bone damage, and ensure joint survival. Treatment can be
categorized as conservative or surgical. In order to determine the most appropriate
treatment, the following factors are taken into consideration:•

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
to maintain movement and increase circulation in the joints. This can promotehealing 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 notprovide lasting improvement. Some people may require surgery to permanently repair
or replace the joint.

Health Link
Healthy living after treatment for childhood cancer

Page 2 of 4

Avascular Necrosis
Version 1.2- 3/04

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 bloodvessels 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 early stages of AVN and should help relieve pain and promotehealing.

•

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.

•

Arthroplasty – is also referred to as joint replacement. The affected bone isremoved and replaced with an artificial joint. This treatment may be needed in
the late stages of AVN 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 AVN are swimming and bicycling.

•

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•

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, PNP, from “Health Topics: Questions and Answers about
Avascular Necrosis” by the National Institute of Arthritis and Musculoskeletal and Skin Diseases,
January 2001, used with permission; and “Avascular Necrosis – Do You Know” by St. JudeChildren’s Research Hospital, used with permission.
Katherine Myint-Hpu, MSN, MPH, PNP is a pediatric nurse practitioner and coordinates the
Leukemia/Lymphoma Clinic at Georgetown University Hospital, Washington, D.C.
Reviewed by Neyssa Marina MD, Joan Darling PhD, Melissa Hudson MD and Smita Bhatia MD,
MPH.

Health Link
Healthy living after treatment for childhood cancer

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Avascular Necrosis
Version 1.2- 3/04

Note: Throughout this Health Links series, the term “childhood cancer” is used to designate pediatriccancers that may occur during childhood, adolescence, or young adulthood. Health Links are designed toprovide 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 ofChildhood, 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 madeavailable from by the Children’s Oncology Group relating to late effects of cancer treatment and care or containing thetitle "Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers" or the title“Health Link”, 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 otherqualified health provider with any questions you may have regarding 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 yourindependent 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 acourtesy, but not intended as a sole source of guidance in the evaluation of childhood cancer survivors. The
Children’s Oncology Group recognizes that specific patient care decisions are the prerogative of the patient, family,
and healthcare 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 the date 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 your own 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 and all claims, causes of action, suits, proceedings, ordemands 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 excusive copyright and otherright, 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.

Health Link
Healthy living after treatment for childhood cancer

Page 4 of 4

Bleomycin Alert
Version 1.2 – 3/04

Bleomycin Alert
The lungs are very important organs that are responsible for supplying oxygen to thebody 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 levels ofoxygen given over several hours.

Healthy living after treatment for childhood cancer

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What is pulmonary fibrosis?
Pulmonary fibrosis is the formation of scar tissue in the small air sacs (alveoli) of thelungs. This scarring makes the lungs stiffer and affects the exchange of oxygen andcarbon 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 levels ofoxygen and large amounts of intravenous fluid given during surgery. However, the riskof 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)

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Bleomycin Alert
Version 1.2 – 3/04•••

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)Smoking

What 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 findout if there are any problems. Your healthcare provider can decide if further
testing is needed based on these results.

•

The chest x-ray and pulmonary function tests should be repeated before
any scheduled surgery that requires general anesthesia to check forchanges 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.

•

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, pediatric nurse practitioner in the
Department of Hematology/Oncology at The Children’s Medical Center, Dayton, Ohio.
Reviewed by: Emmett J. Broxson, Jr. MD, Edward Walz MD, Karen Stormer, RN, CNS,
CPON®, Melissa Hudson MD, Debra Friedman MD, Neyssa Marina MD, and Smita
Bhatia MD, MPH.
Note: Throughout this Health Links series, the term “childhood cancer” is used to designate pediatriccancers that may occur during childhood, adolescence, or young adulthood. Health Links are designed toprovide health information for survivors of pediatric cancer, regardless of whether the cancer occurred
during childhood, adolescence, or young adulthood.

Health Link
Healthy living after treatment for childhood cancer

Page 2 of 3

Bleomycin Alert
Version 1.2 – 3/04

Disclaimer and Notice of Proprietary Rights
Introduction to Late Effects Guidelines and Health Links: The “Long-Term Follow-Up Guidelines for Survivors ofChildhood, 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 madeavailable from by the Children’s Oncology Group relating to late effects 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 “Health
Link”, whether available in print or electronic format (including any digital format, e-mail transmission, or download fromthe 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 ortreatment 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 otherqualified health provider with any questions you may have regarding 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 yourindependent 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 in the 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 the date 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, atyour own 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 and all claims, causes of action, suits, proceedings, ordemands 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 excusive copyright and otherright, 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 andlegal documents and limiting dissemination or reproduction of Informational Content.

Health Link
Healthy living after treatment for childhood cancer

Page 3 of 3

Bone Health
Version 1.2 – 3/04

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 formation or
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 and leg bones. The vertebrae of the spine often
collapse, leading to loss of height, spinal curvature, and chronic pain.
How is osteoporosis diagnosed?

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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•

Lack of weight-bearing exercise•

Too much caffeine, alcohol, or soda•

A diet high in salt

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Bone Health
Version 1.2 – 3/04

Additional causes of osteoporosis in people who have been treated for cancer include:• Corticosteroids (such as prednisone and dexamethasone)•

Methotrexate•

Radiation to weight-bearing bones (legs, hips, spine)•

Low levels of female or male hormones as a result of treatment, such asradiation therapy to the brain, radiation therapy to the testicles or ovaries,
surgical removal of the testicles or ovaries, or high doses of alkylating
chemotherapy (such as cyclophosphamide, ifosfamide, nitrogen mustard,
melphalan, busulfan, BCNU, CCNU, and procarbazine)•

Growth hormone deficiency resulting from treatment, such as radiation therapy
to the brain•

High levels of thyroid hormone (hyperthyroidism) resulting from treatments suchas radiation therapy to the brain, neck, or chest•

High doses of thyroid hormone•

Certain anticonvulsants (phenytoin and barbiturates)•

Aluminum-containing antacids (such as Maalox or Amphogel)•

Gonadotropin-releasing hormone agonists such as Lupron (used for treatment ofearly puberty and endometriosis)•

High doses of heparin (used to prevent blood clots), especially with prolonged
use•

Cholestyramine (used to control blood cholesterol)•

Chronic graft-versus-host disease requiring prolonged therapy withcorticosteroids (such as prednisone) following stem cell or bone marrowtransplant•

Prolonged periods of inactivity (bed rest)

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,
and they do not help to build strong bones. Exercises that are especially good forbone 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 painfulbones or joints, be sure to discuss your individual health status and cancer
treatment history with your healthcare provider before starting any new exercise
program.

Health Link
Healthy living after treatment for childhood cancer

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Bone Health
Version 1.2 – 3/04

A diet high in calcium also is important in preventing osteoporosis. Most doctors
recommend 1000-1500 mg a day, which means a diet rich in dairy products (milk,cheese, yogurt) and leafy green vegetables. Talking with a nutritionist may help you
design a healthy diet. Over- the-counter calcium supplements also may be useful.
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 bonedensity scan is generally done at age 18, but this can be done at an earlier age if
needed, and the timing of the test is based on evaluation of each individual patient.
Follow-up scans may be needed for ongoing monitoring of bone density in somepatients.

Written by Julie Blatt MD, Professor of Pediatrics, Division of Pediatric HematologyOncology, University of North Carolina, Chapel Hill, NC.
Reviewed by Charles Sklar MD, Melissa Hudson MD, Debra L. Friedman MD, Joan
Darling PhD, and Wendy Landier CPNP.
Note: Throughout this Health Links series, the term “childhood cancer” is used to designate pediatriccancers that may occur during childhood, adolescence, or young adulthood. Health Links are designed toprovide health information for survivors of pediatric cancer, regardless of whether the cancer occurred
during childhood, adolescence, or young adulthood.

Health Link
Healthy living after treatment for childhood cancer

Page 3 of 4

Bone Health
Version 1.2 – 3/04
Disclaimer and Notice of Proprietary Rights
Introduction to Late Effects Guidelines and Health Links: The “Long-Term Follow-Up Guidelines for Survivors ofChildhood, 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 madeavailable from by the Children’s Oncology Group relating to late effects of cancer treatment and care or containing thetitle "Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers" or the title“Health Link”, 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 otherqualified health provider with any questions you may have regarding 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 yourindependent 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 acourtesy, but not intended as a sole source of guidance in the evaluation of childhood cancer survivors. The
Children’s Oncology Group recognizes that specific patient care decisions are the prerogative of the patient, family,
and healthcare 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 the date 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 your own 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 and all claims, causes of action, suits, proceedings, ordemands 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 excusive copyright and otherright, 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.

Health Link
Healthy living after treatment for childhood cancer

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Breast Cancer
Version 1.2 – 3/04

Breast Cancer Following Treatment for Childhood 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 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 thegeneral 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.

Healthy living after treatment for childhood cancer

Health Link

Other known risk factors for developing breast cancer 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
In addition, 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 time
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, the best way for you to protect yourPage 1 of 3
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Breast Cancer
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health is by taking steps to closely monitor your breasts. That way, if a cancer develops,
it will be detected in its earliest stages, when treatment is most effective.
What monitoring is recommended?
If you were treated with chest radiation therapy during childhood, adolescence, or young
adulthood, you should:
1. Perform monthly breast self-examination. Report any lumps or changes toyour 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).
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 the risks
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 canbest protect your health, be sure to discuss this with your healthcare provider.
Written by Melissa Hudson MD and Wendy Landier CPNP.
Newsletter Winter 2001, used with permission.

Portions adapted from CCSS

Melissa Hudson, MD directs the After Completion of therapy (ACT) clinic at St. Jude Children’s
Research Hospital in Memphis, TN.
Wendy Landier, RN, MSN, CPNP, CPON®, is clinical director of the Survivorship Clinic in the
Division of Pediatrics at City of Hope National Medical Center in Duarte, CA.
Reviewed by Smita Bhatia MD, MPH, Louis S. Constine MD, Debra Friedman MD, and Fran
Wiley RN, MN.
Note: Throughout this Health Links series, the term “childhood cancer” is used to designate pediatriccancers that may occur during childhood, adolescence, or young adulthood. Health Links are designed toprovide health information for survivors of pediatric cancer, regardless of whether the cancer occurred
during childhood, adolescence, or young adulthood.

Health Link
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Breast Cancer
Version 1.2 – 3/04
Disclaimer and Notice of Proprietary Rights
Introduction to Late Effects Guidelines and Health Links: The “Long-Term Follow-Up Guidelines for Survivors ofChildhood, 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 madeavailable from by the Children’s Oncology Group relating to late effects 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 “Health
Link”, whether available in print or electronic format (including any digital format, e-mail transmission, or download fromthe 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 ortreatment 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 otherqualified health provider with any questions you may have regarding 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 yourindependent 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 in the 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 the date 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, atyour own 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 and all claims, causes of action, suits, proceedings, ordemands 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 excusive copyright and otherright, 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 andlegal documents and limiting dissemination or reproduction of Informational Content.

Health Link
Healthy living after treatment for childhood cancer

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Central Adrenal Insufficiency
Version 1.2- 3/04

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 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.
Pituitary
Hypothalamus

ThyroidHealthy living after treatment for childhood cancer

Health Link

Pancreas

AdrenalGlandsOvaries

TestesWhat 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.
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 the

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Central Adrenal Insufficiency
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kidneys) 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 doses of 30 Gy (3000 cGy/rads) or higher,
including the following fields:
Cranial (whole brain)
Craniospinal
Nasopharyngeal (nose and throat)
Oropharyngeal (mouth and throat)
OrbitalEye
Ear
Infratemporal (midfacial area behind the cheekbones)
Total body irradiation (TBI)• 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 30 Gy or higher to the central area of thebrain (hypothalamic-pituitary axis), or people who are having symptoms suggestive ofcentral adrenal insufficiency, should have a blood test done to check the cortisol
level. This test should be done at least once following the completion of cancer
treatment (and is usually done at least 2 years following completion of therapy). This
test is usually done first thing in the morning, because the cortisol level varies
throughout the day and is usually highest early in the morning.
If your morning cortisol level is abnormal, 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 central adrenal insufficiency treated?
Central adrenal insufficiency is treated with hydrocortisone, a medication that is given
by mouth everyday on a regular schedule. In times of increased stress, such as illness
or surgery, the dose of hydrocortisone is increased and can be administered byinjection if necessary. If you have central adrenal insufficiency, you should wear a
medical alert bracelet so that in case of accident or sudden illness, emergency medical
workers will be aware of your special health needs.

Health Link
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Central Adrenal Insufficiency
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Written by Debra Eshelman CPNP and Wendy Landier CPNP.
Debra Eshelman RN, MSN, CPNP, is a pediatric nurse practitioner and coordinates the After theCancer Experience (ACE) Pediatric and Young Adult Survivor Programs at Children’s Medical
Center of Dallas and the University of Texas Southwestern Medical Center, Dallas, TX.
Wendy Landier RN, MSN, CPNP, CPON®, is a pediatric nurse practitioner and clinical director of
the Survivorship Clinic, Division of Pediatrics, City of Hope National Medical Center, Duarte, CA.
Reviewed by Charles Sklar MD and Smita Bhatia MD, MPH.
Illustrated by Devika Bhatia.
Note: Throughout this Health Links series, the term “childhood cancer” is used to designate pediatriccancers that may occur during childhood, adolescence, or young adulthood. Health Links are designed toprovide health information for survivors of pediatric cancer, regardless of whether the cancer occurred
during childhood, adolescence, or young adulthood.

Health Link
Healthy living after treatment for childhood cancer

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Central Adrenal Insufficiency
Version 1.2- 3/04

Disclaimer and Notice of Proprietary Rights
Introduction to Late Effects Guidelines and Health Links: The “Long-Term Follow-Up Guidelines for Survivors ofChildhood, 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 madeavailable from by the Children’s Oncology Group relating to late effects of cancer treatment and care or containing thetitle "Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers" or the title“Health Link”, 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 otherqualified health provider with any questions you may have regarding 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 yourindependent 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 acourtesy, but not intended as a sole source of guidance in the evaluation of childhood cancer survivors. The
Children’s Oncology Group recognizes that specific patient care decisions are the prerogative of the patient, family,
and healthcare 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 the date 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 your own 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 and all claims, causes of action, suits, proceedings, ordemands 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 excusive copyright and otherright, 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.

Health Link
Healthy living after treatment for childhood cancer

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Dental Health
Version 1.2- 3/04

Dental Health FollowingChildhood Cancer Treatment
Treatment for cancer during childhood often increases the risk for dental problems. As achildhood cancer survivor, it is important for you to understand the reasons why dental
care is especially important for maintaining your health.

Healthy living after treatment for childhood cancer

Health Link

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, such as thefollowing:
Cranial (whole brain)
Craniospinal
Nasopharyngeal (nose and throat)
Oropharyngeal (mouth and throat)
OrbitalEye
Ear
Infratemporal (midfacial area behind the cheekbones)
Cervical (neck)
Cervical spine (spine in the neck area)
Mantle (neck and chest areas)
Total body irradiation (TBI)

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
discolored patches on the teeth, grooves and pits in the teeth, and/or
easy staining of the teeth

Because teeth develop slowly, these problems are more likely to develop in people
who received chemotherapy over a prolonged period (several years) duringchildhood.
•

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

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Dental Health
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Faulty development of tooth enamel resulting in white or discoloredpatches on the teeth, grooves and pits in the teeth, and/or easy stainingof 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
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
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 the roots. Thisbone can dissolve away slowly, causing the teeth to become loose. This condition iscalled periodontitis, which simply means an inflammation surrounding a tooth.
Periodontitis can be prevented be proper brushing of your teeth and gums and byflossing between your teeth at least once a day. Taking good care of your teeth andgums, combined with routine visits to your dentist, can prevent the development ofcavities and gum disease.
If your permanent teeth do not develop normally, you may need caps or crowns in orderto 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 can sometimes
make it difficult to open your mouth fully (trismus), or cause some scarring andhardening 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 crooked or
small teeth, this may be improved by bonding. If braces are needed, your dentist will doa panorex x-ray of the teeth to see if the teeth, roots and supporting bone 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 a bone-healing
problem (osteoradionecrosis) after the surgery. Your dentist should discuss thispotential problem with a radiation oncologist prior to any dental surgery. If you had an
allogeneic bone marrow or stem cell transplant (from a donor other than yourself), it isimportant to let your dentist know, so that the dentist can check for long-term
complications indicating chronic graft versus host disease

Health Link
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Dental Health
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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 thesaliva, 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 and othersweets. 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 more resistant todecay. 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 (30 Gy – 3000 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 may be atincreased 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. If you notice any of the following, notify yourdentist 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.

Health Link
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Dental Health
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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 toevaluate the root development of your teeth and determine if any modifications
need to be made 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 gentle touch, since vigorous brushing could irritate your gums.
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).

•

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.

Health Link
Healthy living after treatment for childhood cancer

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Dental Health
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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®, from "Save Your Smile" by Melissa
Hudson MD, St Jude Children's Research Hospital, After Completion of Therapy (ACT) Clinic,
used with permission.
Debbie Lafond is a pediatric nurse practitioner at Children’s National Medical Center in
Washington, D.C.
Melissa Hudson, MD directs the After Completion of Therapy (ACT) clinic at St. Jude Children’s
Research Hospital in Memphis, TN.
Reviewed by Man Wai Ng, DDS, Revonda Mosher, MS, CPNP, CPON®, Joan Darling PhD, LouisS. Constine MD, and Smita Bhatia MD, MPH.
Note: Throughout this Health Links series, the term “childhood cancer” is used to designate pediatriccancers that may occur during childhood, adolescence, or young adulthood. Health Links are designed toprovide health information for survivors of pediatric cancer, regardless of whether the cancer occurred
during childhood, adolescence, or young adulthood.

Health Link
Healthy living after treatment for childhood cancer

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Dental Health
Version 1.2- 3/04

Disclaimer and Notice of Proprietary Rights
Introduction to Late Effects Guidelines and Health Links: The “Long-Term Follow-Up Guidelines for Survivors ofChildhood, 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 madeavailable from by the Children’s Oncology Group relating to late effects 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 “Health
Link”, whether available in print or electronic format (including any digital format, e-mail transmission, or download fromthe 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 ortreatment 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 otherqualified health provider with any questions you may have regarding 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 yourindependent 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 in the 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 the date 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, atyour own 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 and all claims, causes of action, suits, proceedings, ordemands 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 excusive copyright and otherright, 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 andlegal documents and limiting dissemination or reproduction of Informational Content.

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Educational Issues
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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 to cancer
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

Healthy living after treatment for childhood cancer

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• Cancer therapy that includes treatment to the central nervous system (seebelow).
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 treatment for thesetypes of cancer varies widely, not everyone who was treated for these cancers is atincreased risk.
•

Brain tumors•

Tumors located in the eye or eye socket, head, or facial area•

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)•

Cytarabine – if given in high doses intravenously (IV)•Surgery involving the brain

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Radiation to any of the following areas:- Head or brain (cranial)- Brain and upper spine (craniospinal)- Eye or eye socket (orbital)- Ear- Face (including the sinuses, nose and mouth)- Total body (TBI)

What testing is recommended?
Any young person who has had any of the above cancer treatments, or who is having
difficulties in school, should undergo a specialized evaluation by a pediatric psychologist(neuropsychological testing) at the time of entry into long-term follow-up. Even if theinitial neuropsychological evaluation is normal, it is important for parents and teachers toremain watchful. Further neuropsychological evaluations may be necessary if the childor 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• Organization• Problem-solving• Social skills
What can be done to help with learning problems?
If a problem is identified, special accommodations or services can be requested to help
maximize the student’s learning potential. The first step is usually to schedule a meetingwith the school in order to develop a specialized educational plan. Examples of

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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 Americans with Disabilities Act (ADA)The ADA law (PL 101-336) protects against discrimination in employment,
transportation, communication, government and public accommodations for people
with disabilities.
It guarantees equal access to public spaces, event, andopportunities and may be particularly helpful for students seeking higher education or
employment.
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 such an
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 foraccommodations under this law, and all educational institutions receiving federal
funding (including colleges and universities) are required to comply.
Accommodations may include modifications in the curriculum (such as allowing theuse of a calculator and extra time for assignments or test-taking) and the environment(such as seating near the front of the classroom or allowing 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

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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 underthe 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.
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).
Written by Wendy Landier, RN, MSN, CPNP, CPON®, pediatric nurse practitioner andclinical director of the Survivorship Clinic, Division of Pediatrics, City of Hope National
Medical Center, Duarte, CA.
Reviewed by: Debra L. Friedman MD, Melissa M. Hudson MD, Julie Blatt MD, and Joan
Darling PhD.
Note: Throughout this Health Links series, the term “childhood cancer” is used to designate pediatriccancers that may occur during childhood, adolescence, or young adulthood. Health Links are designed toprovide health information for survivors of pediatric cancer, regardless of whether the cancer occurred
during childhood, adolescence, or young adulthood.

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Disclaimer and Notice of Proprietary Rights
Introduction to Late Effects Guidelines and Health Links: The “Long-Term Follow-Up Guidelines for Survivors ofChildhood, 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 madeavailable from by the Children’s Oncology Group relating to late effects 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 “Health
Link”, whether available in print or electronic format (including any digital format, e-mail transmission, or download fromthe 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 ortreatment 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 otherqualified health provider with any questions you may have regarding 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 yourindependent 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 in the 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 the date 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, atyour own 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 and all claims, causes of action, suits, proceedings, ordemands 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 excusive copyright and otherright, 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 andlegal documents and limiting dissemination or reproduction of Informational Content.

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Emotional Issues
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Emotional Issues after Childhood Cancer
The Cancer Experience
The diagnosis and treatment of childhood cancer is a stressful time for the patient andfamily.
Patients must endure painful procedures, frequent hospitalizations andseparation from their family and friends. Families worry about whether their loved one
will be cured and how to prevent suffering. Often those affected may experience anger,sadness, or helplessness. Brothers and sisters may feel neglected because their family’sworld revolves around their sibling with cancer. Patients and families handle the stressof the cancer experience in different ways, and periods of anxiety or depression arecommon.
After the Cancer Experience

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For survivors and their families, the end of treatment brings an entirely new set of
emotions as they face the possible consequences of the cancer treatment. There aremany different feelings after treatment ends. These feeling are as unique as eachsurvivor. Persistent late effects may be constant reminders of the stressful events at
diagnosis. The diagnosis of a new health problem can cause discouragement, anger,
anxiety, or depression. Many survivors and their families fear recurrence of their cancer.
Anniversaries of important dates, such as the diagnosis date, can bring on a variety ofemotions, including happiness, relief, sadness, painful memories or a combination ofthese feelings. There may be feelings of grief or loss of the normalcy of childhood.
“Survivor guilt” may exist if friends undergoing treatment died. Survivors, especially
teenagers, may feel “invincible” and believe that since they survived cancer, they cansurvive anything. This can lead to the development of unhealthy or risky behaviors.
Other survivors may feel especially vulnerable because of experiences they have had.
Reacting to the stresses of survivorship
For the most part, the majority of survivors and families cope well with the lifelong effectsof cancer treatment. Sometimes physical problems and emotional stress may lead toanxiety and/or depression that require medical attention. Survivors may also experience
periods of intense anxiety triggered by upsetting memories related to treatment, referred
to as “posttraumatic stress”. Posttraumatic stress symptoms may develop many years
after the traumatic event and are similar to symptoms observed in people who haveseen painful life-changing events, such as wars, bombings, or natural disasters. In
severe cases, symptoms of depression or posttraumatic stress may negatively affectpersonal relationships, school or work.
Risk factors for emotional issues
Several risk factors may affect your chances of developing emotional issues afterchildhood cancer treatment. These risk factors include:• Being female• Having a family history of depression, anxiety or mental illness• Having emotional or learning difficulties prior to the diagnosis of cancer• Having a cancer of the central nervous system (brain and spinal tumors)• Having cancer therapy involving the central nervous system (such as brain
radiation or chemotherapy given into the spinal fluid)

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When you should seek help
The table below lists common symptoms of depression and posttraumatic stress.
Patients or family members with symptoms lasting two or more weeks should call theirhealthcare provider to discuss the need for a referral to a mental health professional.
Because cancer treatments occasionally result in hormone deficiencies or otherproblems that can affect mood and create these symptoms, we also recommend athorough check-up by your primary healthcare provider.
SYMPTOMS OF DEPRESSION AND POST-TRAUMATIC STRESS
Symptom
Overeating, weight gain
Poor appetite, weight loss
Crying easily or unable to cry
Chronic fatigue, poor energy
Sleeping a lot
Difficulty making decisions
Hopelessness/thoughts of death, escape,suicideDifficulty concentrating
Not sleeping well
Increased irritability
Decreased interest in activities
Re-living painful memories of illness
Becoming upset, scared or angry when
thinking about illness
Physical reactions (like rapid heart rate,nausea) when thinking about illness
Staying away from medical visits
Refusing to talk about illness

Depression
X
X
X
X
X
X
X

Post Traumatic Stress

X
X
X
X

X
X
X
X
X
X
X
X
X

Treatment options
Mental health professionals (including social workers, psychologists, or psychiatrists)
work in a variety of community settings. Some families prefer to start with counselingservices offered by clergy at their place of worship. Another option is to ask yourhealthcare provider to help you find a mental health counselor. Treatments fordepression and anxiety include individual or group counseling and medication.
Medication usually works best in combination with some form of counseling.
Share your concerns with your healthcare professional
If concerns about complications after cancer treatment are causing feelings of anxiety
or depression, discuss these feelings with your primary healthcare provider or cancer
specialist to find out if they are related to your treatment. Anxiety may result from otherevents in your life not related to your illness. In any case, ask about what you can do to

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reduce the risks of health problems as your get older. It is important to remember thatmany people who have never been treated for a serious illness commonly suffer fromanxiety and depression, and even from post-traumatic stress. Help is available to treat
these problems. Talking with others about your concerns is a first step in gaining
control over those aspects of your life that you are having difficulties with. Support fromothers can help cancer survivors and families cope with their emotions in a positiveway.
Resources
There are many organizations and online networks of support available to cancer
survivors. Those listed here are just a few of the many resources available:• Candlelighters Childhood Cancer Foundationwww.candlelighters.org, 800-366-CCCF•

Association of Cancer Online Resources, Inc (ACOR)
www.acor.org, includes a listing of dozens of Internet support groups.

•

Oncolink
www.oncolink.upenn.edu/psychosocial/support/•

American Cancer Society’s Cancer Survivors Networkwww.cancersurvivorsnetwork.org•

Patient Centered Guides
www.patientcenters.com/survivors
A comprehensive listing of support resources can be found in the book Childhood
Cancer Survivors: A Practical Guide to Your Future (2000) by Nancy Keene, Wendy
Hobbie and Kathy Ruccione, published by O’Reilly and Associates, Inc. (Seechapter 2 and pages 444-457). This book provides an exceptional series of survivor
excerpts about their personal cancer experiences.

Adapted by Debra Eshelman CPNP, from “Dealing with Emotions after Childhood Illness” by
Melissa Hudson MD, used with permission.
Melissa Hudson, MD directs the After Completion of therapy (ACT) clinic at St. Jude Children’s
Research Hospital in Memphis, TN.
Debra Eshelman, RN, MSN, CPNP is a pediatric nurse practitioner and coordinates the After theCancer Experience (ACE) Pediatric and Young Adult Survivor Programs at Children’s Medical
Center of Dallas and the University of Texas Southwestern Medical Center, Dallas, TX.
Reviewed by: Joe Don Cavender, MSN, RN, CPNP, Daniel Armstrong PhD, Joan Darling PhD,
Catherine L. Woodman MD, and Octavio Zavala.
Note: Throughout this Health Links series, the term “childhood cancer” is used to designate pediatriccancers that may occur during childhood, adolescence, or young adulthood. Health Links are designed toprovide health information for survivors of pediatric cancer, regardless of whether the cancer occurred
during childhood, adolescence, or young adulthood.

Health Link
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Disclaimer and Notice of Proprietary Rights
Introduction to Late Effects Guidelines and Health Links: The “Long-Term Follow-Up Guidelines for Survivors ofChildhood, 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 madeavailable from by the Children’s Oncology Group relating to late effects of cancer treatment and care or containing thetitle "Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers" or the title“Health Link”, 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 otherqualified health provider with any questions you may have regarding 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 yourindependent 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 acourtesy, but not intended as a sole source of guidance in the evaluation of childhood cancer survivors. The
Children’s Oncology Group recognizes that specific patient care decisions are the prerogative of the patient, family,
and healthcare 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 the date 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 your own 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 and all claims, causes of action, suits, proceedings, ordemands 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 excusive copyright and otherright, 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.

Health Link
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Eye Problems after Treatment for Childhood Cancer
Childhood cancer treatment sometimes requires the use of medications or radiation that
can affect the eyes. Because vision can have a significant impact on daily living, it isimportant for survivors who received these treatments to have their eyes checked
regularly.

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How do the eyes work?
The eyes are remarkable organs, allowing light to beconverted into impulses that are transmitted to thebrain, where images are perceived. The eyes arelocated in the area of the skull known as the orbit oreye socket.
A thin layer of tissue called the
conjunctiva covers and protects the eye andeyelids. Tears are produced in the lacrimal gland,
located in the outer corner of 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 of tissue known
as the cornea. The cornea bends and focuses thelight, 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 the lens of
the eye, which focuses the light onto the retina, themembrane along the back wall of the eye. The nerve
cells in the retina change the light into electricalimpulses and send them through the optic nerve tothe brain, where the image is perceived.

LacrimalGland
Lacrimal
Lacrimal
Duct
Duct

Orbit

Pupil
Lens

Optic
Nerve

RetinaWhat 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 ofvision, 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.
Keratoconjunctivitis sicca: Inflammation of the cornea (the clear, outer surface of theeye) and the conjunctiva (the membrane covering the eye and eyelids) due to dryness.
This occurs when radiation or graft-versus-host disease reduces the amount of tears
produced by the lacrimal gland. Symptoms include pain at the surface of the eye andlight sensitivity.
Other eye problems:
The following eye problems are less common and are usually seen only in survivors who
had radiation treatments directed at the eye or orbit:
Orbital hypoplasia: Underdevelopment of the eye and surrounding tissues, causedby radiation to the eye or to the area surrounding the eye. This can result in a small
eye and orbit (orbital hypoplasia).

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Lacrimal duct atrophy: Shrinking of the lacrimal duct, which drains tears from theeye. Lacrimal duct atrophy can result in problems with increased tearing.
Xerophthalmia: Scarring of the tear (lacrimal) glands following radiation to the eyeor orbit. This can result in dry eyes (xerophthalmia).
Keratitis: Inflammation of the cornea (the clear, outer surface of the eye). This cancause 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.
Optic chiasm neuropathy: Damage to the nerves that send visual information fromthe eye to the brain. This can result in vision loss.
Enophthalmos: Sunken eyeball within the orbit.
What cancer therapies increase the risk of developing these eye complications?
•Certain medications increase the risk of cataracts, but do not usually increase
the risk of developing other eye complications. These include:- Busulfan- Corticosteroids, such as prednisone and dexamethasone•

Radiation therapy to the following areas is responsible for most treatment-related
eye problems:- Eye- Orbits- Brain (cranial) or brain and spine (craniospinal)- Total body irradiation (TBI)
Radiation doses less than 30 Gy (3000 cGy/rads) increase the risk of cataracts,
but do not usually increase the risk of developing other eye complications.
The risk for cataracts caused by radiation increases with:•-

Radiation dose of 2 Gy (200 cGy/rads) or higher during a single treatment(fraction)-

Total radiation dose of 10 Gy (1000 cGy/rads) or higher-

TBI given as a single dose (unfractionated TBI)-

The passage of time (the longer off therapy the survivor is)

The risk for other long-term complications affecting the eye is usuallyassociated with a radiation dose of 30 Gy (3000 cGy/rads) or more to the eye ororbit.

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Other factors that may increase the risk for developing certain eye problems include:-

Chronic graft versus host disease following allogeneic (from a donor otherthan yourself) bone marrow or stem cell transplant (increased risk for
keratoconjunctivitis sicca)-

Diabetes mellitus (increased risk for retinopathy and optic chiasm neuropathy)-

High blood pressure (increased risk of optic chiasm neuropathy)-

Frequent exposure to sunlight (increased risk for cataracts)

What monitoring is recommended?
The chart below provides recommendations for ongoing monitoring:
Treatment

Dose

Monitoring Required

How often

Any

Evaluation of vision during regular
medical checkup – including
evaluation of vision (visual acuity)and examination for cataracts(funduscopic examination)

Total body
irradiation (TBI)

AnyExamination by ophthalmologist

Yearly(If any eye problems aredetected you shouldhave an evaluation doneby an ophthalmologist)
YearlyRadiation to thebrain, eye, orbit

30 Gy(3000 cGy)or higher

Examination by ophthalmologist

YearlyLess than
30 Gy(3000 cGy)

Examination by ophthalmologist

Every 3 years, plus
yearly vision andfunduscopic exams
during regular medical
checkups

BusulfanCorticosteroids(such as prednisone
or dexamethasone)

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 a vision
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.
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 eyes

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How 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 surgicalremoval of the lens and replacement with an artificial lens. Today, cataract surgery
is a low-risk procedure that 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.
Lacrimal duct atrophy: A surgical procedure to widen the tear drainage system canbe performed if heavy tearing is a significant problem.
Xerophthalmia: Treatment of dry eye includes the frequent use of artificial tears(eye drops) or ointments to moisten the surface of the eye. In severe cases, the teardrainage system can be blocked by surgery to reduce the drainage of tears from theeye.
Keratitis and keratoconjunctivitis sicca: The frequent use of artificial tears (eyedrops) or ointments to moisten the surface of the eye is recommended. Patching theaffected eye during sleep may also promote healing. Keratitis caused by infection istreated with antibiotic eye drops or ointment. Rarely, surgical replacement(transplant) of the cornea is necessary.
Telangiectasias: No treatment is necessary.
Retinopathy: Retinopathy may require laser or photocoagulation (heat) treatment of
the retina. Rarely, surgery to remove the eye is necessary in severe cases.
Optic chiasm neuropathy: No treatment available.
Enophthalmos: Plastic surgery can be done to build up the orbit.
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 of age
through the local public school district or referral agencies (available under the
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.

Health Link
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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 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.

•

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, pediatric nurse practitioner in the After
Completion of Therapy (ACT) Clinic at St. Jude Children’s Research Hospital in
Memphis, TN.
Reviewed by Julie Blatt MD, Debra Friedman MD, Melissa Hudson MD and Lise Yasui.
Illustrated by Devika Bhatia.
Note: Throughout this Health Links series, the term “childhood cancer” is used to designate pediatriccancers that may occur during childhood, adolescence, or young adulthood. Health Links are designed toprovide health information for survivors of pediatric cancer, regardless of whether the cancer occurred
during childhood, adolescence, or young adulthood.

Health Link
Healthy living after treatment for childhood cancer

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Disclaimer and Notice of Proprietary Rights
Introduction to Late Effects Guidelines and Health Links: The “Long-Term Follow-Up Guidelines for Survivors ofChildhood, 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 madeavailable from by the Children’s Oncology Group relating to late effects of cancer treatment and care or containing thetitle "Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers" or the title“Health Link”, 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 otherqualified health provider with any questions you may have regarding 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 yourindependent 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 acourtesy, but not intended as a sole source of guidance in the evaluation of childhood cancer survivors. The
Children’s Oncology Group recognizes that specific patient care decisions are the prerogative of the patient, family,
and healthcare 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 the date 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 your own 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 and all claims, causes of action, suits, proceedings, ordemands 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 excusive copyright and otherright, 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.

Health Link
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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 person’s age at the time of cancer therapy, the specific typeand location of the cancer, and the treatment that was given. It is important tounderstand how the ovaries and female reproductive organs function and how they may
be affected by therapy given to treat cancer during childhood.
The female reproductive organs

Healthy living after treatment for childhood cancer

Health Link

At birth, a girl’s ovaries contain all the eggs they
will ever have. When it is time for a girl to begin
pubertal development, the pituitary gland in thebrain signals the ovaries by releasing two
hormones (FSH and LH). The ovaries secretethefemalehormones,
estrogenandprogesterone, necessary for reproductivefunction. During each menstrual cycle, at least
one egg usually matures and is released fromthe ovaries.
If the egg is not fertilized,
menstruation begins. The cycle then repeats
itself about every 28 days.
With eachmenstrual cycle, the supply of eggs decreases.
When most of the eggs are depleted from awoman’s ovaries, menopause begins. During
menopause, the menstrual cycles stop, theovaries stop making hormones, and the woman
is no longer able to become pregnant.

UterusOvary

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
used during 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 for childhood cancer included a combination of both radiation andalkylating 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 and thetotal 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, doses of 10-20 Gy (1000 – 2000 cGy/rads) or higher usually cause theovaries to stop functioning in most females of any age.
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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 ovarian function.
Radiation to the brain, especially at doses of 30 Gy (3000 cGy/rads) or higher candamage the pituitary gland, leading to low levels of these hormones.
Surgery. If both ovaries were removed during cancer therapy, this always results inovarian failure. This type of ovarian failure is sometimes called “surgicalmenopause”.
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:
Abdomen (including para-aortic)
Pelvis (including iliac/inguinal)
Spine“Inverted Y” or total lymphoid radiation
TBI (total body irradiation)
Cranial radiation at doses of 30 Gy (3000 cGy/rads) or higher• Chemotherapy - the class of drugs called “alkylators” can cause ovarian failure
when given in high doses. Examples of these drugs are:
Cyclophosphamide (Cytoxan®)
Ifosfamide
Nitrogen mustard
Procarbazine
MelphalanBusulfan
Chlorambucil
Lomustine (CCNU)
Carmustine (BCNU)
Thiotepa
Dacarbazine (DTIC®)
Temozolamide
Carboplatin
Cisplatin• Surgery:
Removal of both ovaries

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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
resulted in ovarian failure will need hormonal therapy (hormones prescribed by adoctor) in order to progress through puberty. It is important for young girls who hadcancer treatment that can affect ovarian function to have their hormone levels checked
before the expected onset of puberty. If a problem is detected, they should be referred
to an endocrinologist (hormone doctor) 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
the timing of this is unpredictable. In some cases, it may take up to several years torestart menstruation. Since eggs are released before the menstrual cycles, pregnancy
can occur before the menstrual periods resume. If pregnancy is undesired, birthcontrol (contraception) should be used, even if the menstrual cycles have notresumed.
3. Permanent cessation of menstrual cycles (premature menopause). Menopause(the permanent cessation of menstrual cycles) generally occurs in women between theages of 45 and 55. Females who were already menstruating prior to their cancer
therapy sometimes develop ovarian failure as a result of their cancer treatment andnever resume menstrual cycles. Others may resume menstrual cycles, but then stop
menstruating much earlier than would normally be expected. If a woman who received
alkylating chemotherapy agents or abdominal radiation during her cancer treatment iscurrently having menstrual periods, she may still be at risk for entering menopause at
an early age. If a woman at risk for premature menopause desires to havechildren, it is best not to delay childbearing beyond the early thirties, because theperiod of fertility may be shortened after having cancer therapy.
4. Lack of female hormones. Females with ovarian failure do not make enoughestrogen. Estrogen isn’t just needed for reproduction – it’s also a very important
hormone that is necessary for maintaining strong healthy bones, a healthy heart, andoverall 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 year of
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 the use of supplemental hormones, or if she had to take hormones in order to enteror progress through puberty, she is likely to be infertile.

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Women who had surgical removal of both ovaries will be infertile. Women who had
surgical removal of the uterus (hysterectomy) will also be unable to bear a child.
Women who are infertile should discuss their options with a fertility specialist and their
oncologist. The use of donor eggs (surrogacy) may be an alternative for some women.
Additional options may include adoption of a biologically unrelated child or child-freeliving.
6. Pregnancy risks. Certain therapies used during treatment for childhood cancer cansometimes 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 abdomen (including para-aortic areas), pelvis(including iliac/inguinal areas), or total body (TBI) may have an increased risk of
miscarriage, premature delivery, or problems during labor.

•

Women who received anthracycline chemotherapy (such as doxorubicin or
daunorubicin), and women who received radiation to the left side of the abdomen or
to the chest may be at risk for heart problems that can worsen with pregnancy andlabor (see related Health Link: “Heart Problems Following Treatment for Childhood
Cancer”).

•

A small percentage of women who had a diagnosis of Wilms tumor may have an
increased risk of problems with the uterus during pregnancy.

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 menstrual history,
hormonal status, and progression through puberty. Blood may be tested for hormone
levels (FSH, LH, and estradiol). If any problems are detected, a referral to an
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, Coordinator, 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 Hudson MD, Smita
Bhatia MD, MPH, and Peggy Kulm RN, MA.
Illustrated by Devika Bhatia.
Note: Throughout this Health Links series, the term “childhood cancer” is used to designate pediatriccancers that may occur during childhood, adolescence, or young adulthood. Health Links are designed toprovide health information for survivors of pediatric cancer, regardless of whether the cancer occurred
during childhood, adolescence, or young adulthood.

Health Link
Healthy living after treatment for childhood cancer

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Female Health Issues
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Disclaimer and Notice of Proprietary Rights
Introduction to Late Effects Guidelines and Health Links: The “Long-Term Follow-Up Guidelines for Survivors ofChildhood, 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 madeavailable from by the Children’s Oncology Group relating to late effects of cancer treatment and care or containing thetitle "Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers" or the title“Health Link”, 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 otherqualified health provider with any questions you may have regarding 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 yourindependent 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 acourtesy, but not intended as a sole source of guidance in the evaluation of childhood cancer survivors. The
Children’s Oncology Group recognizes that specific patient care decisions are the prerogative of the patient, family,
and healthcare 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 the date 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 your own 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 and all claims, causes of action, suits, proceedings, ordemands 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 excusive copyright and otherright, 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.

Health Link
Healthy living after treatment for childhood cancer

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Finding Appropriate Healthcare
After Treatment for Childhood Cancer
As a childhood cancer survivor, it is important for you to have regular medical checkups,
particularly since some of the treatments that you received may increase your risk forhealth problems as you get older. Sometimes it is challenging 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.

Healthy living after treatment for childhood cancer

Health Link

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 are usually designed to
optimize healthcare for survivors by screening for late effects and educating survivors
about ways to lower their health-related risks. They are generally an excellent place to
get a comprehensive health evaluation, usually on a yearly basis. But long-term followup programs are not usually designed to meet the everyday healthcare needs ofsurvivors, and most programs require that you also have a primary healthcare provider
to take care of your ongoing medical needs. In addition, some long-term follow-up
programs are only able to follow survivors until they reach adulthood, which may meanthat they can see survivors only until they reach age 18 or 21. Therefore, even if you areattending a long-term follow-up clinic, it is also important to find a primary healthcare
provider who is interested in taking care of your ongoing medical needs.
Choose a primary healthcare provider in your community. The best primary
healthcare providers for adults are usually family practitioners or internists. The chanceof 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 are practicing in your area. Make an appointment for ageneral check-up and discuss your past 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 andmanagement 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
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 and provide
referrals for their services.

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Share your medical records with all the members of your medical team. Ask thehospital or clinic to send copies of your treatment records to all your new healthcare
providers. If possible, ask the doctor who treated your childhood cancer to provide youwith a summary of your diagnosis and treatment, future health risks, and recommended
screening. Keep a copy of the summary and important sections of your pediatric
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 havebecause 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.
adequate care, ask yourself the following questions:

To find out if you are getting•

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 seemto 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 orsocial 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 talk to yourhealthcare 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 healthdepartment. 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 itis worth the effort!!

Health Link
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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.
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 ordisability.
Begin applications.
Avoid lapses in coverage. Plan for transitions in health insurance coverage that
occur with college graduation or job changes.

Health Link
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Be aware of the laws that help you keep insurance benefits:
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.
Follow through with applications.
Appeal denials with letters of support from your healthcare provider.
Begin new applications.
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 forcancer 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,
http://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
State Insurance Commissioners. Contact information for insurance commissioners ofeach state is also listed on the HIPAA site at:
http://cms.hhs.gov/hipaa/hipaa1/content/contacts.asp#ContactCMS
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. 800-366-CCCF (800-366-2223)
http://www.candlelighters.org/
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). http://www.cancercare.org/

Health Link
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Written by Melissa Hudson, MD, Sally Wiard, MSW, LCSW, and Allison Hester, RN, MSN,
CPNP. Adapted from the CCSS Newsletter, Spring 2003, used with permission.
Melissa Hudson, MD directs the After Completion of therapy (ACT) clinic at St. Jude Children’s
Research Hospital in Memphis, TN.
Sally Wiard, MSW, LCSW is a social worker in the After Completion of therapy (ACT) clinic at St.
Jude Children’s Research Hospital in Memphis, TN.
Allison Hester, RN, MSN, CPNP is a pediatric nurse practitioner in the After Completion oftherapy (ACT) clinic at St. Jude Children’s Research Hospital in Memphis, TN.
Reviewed by Leslie L. Robison PhD, Kevin Oeffinger MD, Peggy Kulm RN, MA, and Octavio
Zavala.
Note: Throughout this Health Links series, the term “childhood cancer” is used to designate pediatriccancers that may occur during childhood, adolescence, or young adulthood. Health Links are designed toprovide health information for survivors of pediatric cancer, regardless of whether the cancer occurred
during childhood, adolescence, or young adulthood.

Health Link
Healthy living after treatment for childhood cancer

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Finding Healthcare
Version 1.2 – 3/04
Disclaimer and Notice of Proprietary Rights
Introduction to Late Effects Guidelines and Health Links: The “Long-Term Follow-Up Guidelines for Survivors ofChildhood, 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 madeavailable from by the Children’s Oncology Group relating to late effects of cancer treatment and care or containing thetitle "Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers" or the title“Health Link”, 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 otherqualified health provider with any questions you may have regarding 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 yourindependent 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 acourtesy, but not intended as a sole source of guidance in the evaluation of childhood cancer survivors. The
Children’s Oncology Group recognizes that specific patient care decisions are the prerogative of the patient, family,
and healthcare 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 the date 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 your own 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 and all claims, causes of action, suits, proceedings, ordemands 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 excusive copyright and otherright, 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.

Health Link
Healthy living after treatment for childhood cancer

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Growth Hormone Deficiency
Version 1.2 – 3/04

Endocrine Problems after Childhood Cancer:
Growth Hormone (GH) 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 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.

Pituitary
Hypothalamus

ThyroidHealthy living after treatment for childhood cancer

Health Link

Pancreas

AdrenalGlandsOvaries

TestesWhat 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.
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
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Growth Hormone Deficiency
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hormone, exercise, proper nutrition, and rest to help children and teenagers grow. GH
also helps maintain normal blood sugar levels and is necessary 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 stimulating andcontrolling areas of the brain that regulate mood and emotion.
Cancer treatments, such as radiation or surgical procedures to structures in the head orbrain, may cause 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
A noticeable 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 peers, but theyusually have normal body proportions.
Adults who have GH deficiency may have a variety of different physical symptoms, suchas thinning of the bones, decreased muscle strength, increased body fat, or high blood
cholesterol levels. Adults may also have emotional symptoms such as feeling tired,anxious, irritable, pessimistic, 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 if you were very young
age at the time of cancer treatment•

Radiation to the head or brain, especially in doses of 18 Gy (1800 cGy/rads) or
higher, including the following fields:
Cranial (whole brain), especially if given before bone marrow or stem celltransplant
Craniospinal
Nasopharyngeal (nose and throat)
Oropharyngeal (mouth and throat)
Eye and Orbit
Ear
Infratemporal (midfacial area behind the cheekbones)
Total body irradiation (TBI), especially at a dose of 10 Gy (1000 cGy/rads) or
higher in a single fraction or 12 Gy (1200 cGy/rads) or higher in fractionated(split) doses•

Surgery to the brain, especially the central region of the brain where the pituitary
gland is located (suprasellar region)

Health Link
Healthy living after treatment for childhood cancer

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Growth Hormone Deficiency
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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 aresigns of poor growth, an x-ray of the wrist (bone age x-ray) should be done.
Evaluation for other potential causes of growth problems, such as low thyroid function,
should also be explored.
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 for you.
Usually this involves supplementing or replacing the GH that your pituitary gland is not
making on its own. Synthetic GH is given by injection. GH is usually given for several
years, until the person reaches acceptable adult height or maximum potential. Your
endocrinologist can provide you with a realistic expectation about your growth potential.
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, pediatric nurse practitioner andcoordinator for the After the Cancer Experience (ACE) Pediatric and Young Adult
Survivor Programs at Children’s Medical Center of Dallas and the 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 Hudson MD, and Winnie Kittiko RN, MS.
Note: Throughout this Health Links series, the term “childhood cancer” is used to designate pediatriccancers that may occur during childhood, adolescence, or young adulthood. Health Links are designed toprovide health information for survivors of pediatric cancer, regardless of whether the cancer occurred
during childhood, adolescence, or young adulthood.

Health Link
Healthy living after treatment for childhood cancer

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Growth Hormone Deficiency
Version 1.2 – 3/04

Disclaimer and Notice of Proprietary Rights
Introduction to Late Effects Guidelines and Health Links: The “Long-Term Follow-Up Guidelines for Survivors ofChildhood, 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 madeavailable from by the Children’s Oncology Group relating to late effects of cancer treatment and care or containing thetitle "Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers" or the title“Health Link”, 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 otherqualified health provider with any questions you may have regarding 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 yourindependent 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 acourtesy, but not intended as a sole source of guidance in the evaluation of childhood cancer survivors. The
Children’s Oncology Group recognizes that specific patient care decisions are the prerogative of the patient, family,
and healthcare 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 the date 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 your own 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 and all claims, causes of action, suits, proceedings, ordemands 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 excusive copyright and otherright, 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.

Health Link
Healthy living after treatment for childhood cancer

Page 4 of 4

Diet & Physical Activity
Version 1.2 – 3/04

Health Promotion through Diet and Physical Activity
Good nutrition and physical exercise offer many benefits to childhood cancer survivors.
These include:• Healing 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

Healthy living after treatment for childhood cancer

Health Link

The effects of childhood cancer on nutrition and physical activity will be different for eachindividual survivor. Nutrition can be affected in a number of ways. Some people may
have aversions to certain foods due to tastes, smells, or sights associated with their priortherapy. Others may have developed intolerance to certain foods, such as milk
products. People who have had radiation to the face or neck may have a lack of salivathat can cause foods to taste pasty and dry. Dental problems can cause problems withchewing food. People who have had radiation to the abdomen or who have chronic
graft-versus-host disease after stem cell transplant may have trouble absorbing certain
foods. Any of these problems can result in poor nutrition and trouble maintaining ahealthy weight.
Other survivors may have problems with gaining too much weight. Treatments forchildhood cancer that can result in problems with excess weight gain include radiation to
the brain, head, or total body. This is more likely to occur if the radiation was given inhigh doses, or if the person also received treatment with corticosteroids (prednisone or
dexamethasone). Associated health problems that may result from radiation andcontribute to weight gain include low levels of growth hormone or thyroid hormone.
There are many factors that can influence a survivor’s ability to perform physicalexercise. Individuals who have had an amputation, bone graft or joint replacement
surgery, high dosages of radiation to a bone, or joint damage as a result of treatment
may have restrictions or limitations in their activities. Heart or lung damage from cancer
treatment may also limit the ability to be physically active. Nerve damage from cancer
therapy can sometimes impair sensation and coordination. Individuals who havesurvived brain tumors often have problems with balance and coordination as a result of
their tumor, surgery, or therapy. (See related Health Links: Limb Salvage after Bone
Cancer, Avascular Necrosis, Peripheral Neuropathy, Pulmonary Health, and Heart
Problems Following Treatment for Childhood Cancer).
Childhood cancer and its treatment should not be used as an excuse for not eating ahealthy diet or staying physically active. However, many survivors, like many people
who have never experienced cancer, make lifestyle choices (such as what they eat andhow they exercise) that are not always in their best interest. Now is a good time to begin
making healthy choices about diet and exercise. These choices can have a positiveeffect on your health for many years to come.

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Diet & Physical Activity
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Developing 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 to help choose foods for a well-balanced meal plan.
• Eat at least 5 servings a day of fruits and vegetables, including citrus fruits
and dark-green and deep-yellow vegetables.
• When drinking juice, choose 100% fruit or vegetable juice.
• Eat plenty of high-fiber foods, such as whole grain breads, rice, pasta andcereals. Avoid foods high in sugars or refined carbohydrates.
• Buy a new fruit, vegetable, low-fat food, or wholegrain product each time you
shop for groceries.
• Decrease the amount of fat in your meals by baking or boiling foods.
• 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.

The Food Guide
Pyramid
Milk, yogurt, cheese
2-3 SERVINGS

Vegetables
3-5 SERVINGS

Fats, oils, sweets, alcohol
USE SPARINGLY
Meat, poultry, fish, eggs, nuts
2-3 SERVINGS

Fruits
2-4 SERVINGS

Bread, cereal, rice, pasta,
beans, starchy vegetables
6 OR MORE SERVINGS

If you need to lose weight, it is advisable to consult with your health care team and anutritionist to develop a nutrition plan. Herbal or dietary supplements should be
discussed to determine 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,
not just 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 yourweight loss?

Health Link
Healthy living after treatment for childhood cancer

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Diet & Physical Activity
Version 1.2 – 3/04

Developing a Healthy Physical Exercise Plan
Check with your healthcare team before starting a physical exercise plan or engaging in
new sports and recreational activities. It is important to be aware of activities that you
can participate in actively and those you should avoid.
When selecting an exercise plan, ask yourself these questions:• Do you have reasonable goals based on your present strength andendurance?
• 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 modifications 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 attempt activities that are too strenuous or put you at risk
for muscle strain.
• 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 workon those muscles• Balance exercises between 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 intensity exercise at least
30 minutes per day on most days of the week. If you don’t have the time for a 30-minutesession 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 engage in atleast 60 minutes per day of moderate to vigorous physical activity at least 5 days per
week. Here are some practical suggestions to try to incorporate physical activity in yourdaily schedule.
• Park a good distance from your place of work and walk the extra distanceeach day.
• 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 andtake a walk during your lunch or break.
• Ride a bike to work or for running errands.

Health Link
Healthy living after treatment for childhood cancer

Page 3 of 5

Diet & Physical Activity
Version 1.2 – 3/04

•
•
•
•
•

Plant a garden, wash your car yourself, mow the lawn, paint furniture, cleanout the garage and catch up on all those chores you have been meaning to do– instead of watching 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 participate in most activities, but the assistanceof a physical or occupational therapist may be necessary to help adapt the activity forsuccess. A social worker may be able to assist with obtaining medical reimbursement
or provide suggestions for obtaining funding for special equipment. Specialized
programs for individuals with special needs, organizations and other resources areoften available through your healthcare center or in your local community.

Adapted by Sharon Frierdich CPNP from “Staying Physically Healthy, Play Safely, Play Well,”St. Jude Children’s Research Hospital, used with permission.
Sharon Frierdich, RN, MS, CPNP is a pediatric nurse practitioner,
Hematology/Oncology, University of Wisconsin Children’s Hospital, Madison, WI.

Pediatric

Reviewed by Kevin Oeffinger MD, Missy Layfield and Octavio Zavala.
Note: Throughout this Health Links series, the term “childhood cancer” is used to designate pediatriccancers that may occur during childhood, adolescence, or young adulthood. Health Links are designed toprovide health information for survivors of pediatric cancer, regardless of whether the cancer occurred
during childhood, adolescence, or young adulthood.

Health Link
Healthy living after treatment for childhood cancer

Page 4 of 5

Diet & Physical Activity
Version 1.2 – 3/04

Disclaimer and Notice of Proprietary Rights
Introduction to Late Effects Guidelines and Health Links: The “Long-Term Follow-Up Guidelines for Survivors ofChildhood, 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 madeavailable from by the Children’s Oncology Group relating to late effects of cancer treatment and care or containing thetitle "Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers" or the title“Health Link”, 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 otherqualified health provider with any questions you may have regarding 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 yourindependent 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 acourtesy, but not intended as a sole source of guidance in the evaluation of childhood cancer survivors. The
Children’s Oncology Group recognizes that specific patient care decisions are the prerogative of the patient, family,
and healthcare 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 the date 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 your own 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 and all claims, causes of action, suits, proceedings, ordemands 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 excusive copyright and otherright, 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.

Health Link
Healthy living after treatment for childhood cancer

Page 5 of 5

Hearing Problems
Version 1.2 – 3/04

Hearing Problems 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 partof the ear that can be seen outside the body iscalled the pinna. The pinna collects and funnels
sound into the auditory (ear) canal. The
auditory canal is like a tunnel. It makes thesound louder and directs it toward the middle
ear.

OUTER EARMIDDLEEAR

INNER EAR

Auditory Nerve

Healthy living after treatment for childhood cancer

Health Link

Middle Ear

Cochlea

The eardrum separates the outer ear from the
middle ear, a chamber that is normally filledwith air. Inside the middle ear are three tinybones (ossicles) that form a chain connecting
the eardrum to the opening of the inner ear.
Sound waves cause the eardrum to vibrate.
These vibrations cause the three tiny bones in
the middle ear to move, transmitting the soundto the inner ear.

OssiclesEar Drum
Pinna
Auditory Canal

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 theeighth 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.

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Hearing Problems
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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 haircells in the inner ear from chemotherapy. Even though sound waves still move throughthe inner ear fluid, they can no longer be changed into nerve impulses, so the sounddoes not reach the brain. Sensory hair cells that process high-pitched sounds areusually damaged first, followed by damage to the sensory hair cells that process lowerpitched 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 and carboplatin•

Antibiotics from the “aminoglycoside” group, such as gentamicin or tobramycin•

Diuretics from the “loop” classification, such as furosemide (Lasix) or ethacrynicacid (Edecrin)•

Radiation to the head, especially when the beam is directed at the brainstem or
ear•

Surgery involving the brain, ear or auditory (eighth cranial) nerve

Which survivors are most likely to have hearing loss?
Survivors at highest risk for hearing loss are those who:•

Had other risk factors for hearing loss before the diagnosis of cancer (such asprior treatment with aminoglycoside antibiotics, low birth weight, or meningitis)•

Were younger than 4 years of age at the time that they received treatments thatcan cause damage to the ear•

Received cisplatin in a total (cumulative) dose of 360 mg/m2 or higher.
(Information about the dose of carboplatin that places survivors at highest risk forhearing loss is not definitive; however, carboplatin doses of about 2000 mg/m2
have been associated with significant hearing loss).

•

Received radiation to the ear, brain, nose, sinuses, throat, or midfacial area
behind the cheekbones, especially at doses of 30 Gy (3000 cGy/rads) or higher•

Had a tumor, surgery, or severe infection that involved the brain, ear or auditory
nerve, or required placement of a VP shunt•

Received more than one type of treatment that can cause hearing loss (such as
the combination of brain radiation and cisplatin chemotherapy, or treatment withboth cisplatin and carboplatin chemotherapy)•

Had poor kidney function at the time that they received chemotherapy or othermedications that can damage hearing

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What are the effects of childhood cancer treatment on hearing?
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 the eardrum or middle earbones. Any of these problems can result in conductive hearing loss. Radiation canalso damage the sensory hair cells in the inner ear, causing sensorineural hearing loss.
Damage from radiation may affect one or both ears, depending on the area of radiation
treatment. Conductive hearing loss may improve over time, but sensorineural hearing
loss is usually permanent.
Platinum chemotherapy and aminoglycoside antibiotics damage sensory hair cells in
the inner ear, causing sensorineural hearing loss. Most often, the effect is similar inboth ears and is permanent.
Damage from loop diuretics is caused by changes in the balance of fluids and salts
within the inner ear, resulting in tissue swelling and problems with transmission of nerve
signals. Fortunately, this type of hearing loss is usually temporary, but sometimes it canbe permanent, especially when the diuretic is given in combination with platinum
chemotherapy or aminoglycoside antibiotics.
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)•

Some people may have no symptoms at all

What 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. An audiogram is done in asoundproof room. The person being tested wears earphones and listens forsounds of different pitches and different degrees of loudness. Even very young
children can usually have an audiogram done by an experienced pediatricaudiologist using a game format.

•

People who are not able to have an audiogram (such as those who are unable
to understand the test instructions) can have their hearing tested using
Brainstem Auditory Evoked Response (BAER). The person having this test
is usually given medicine so that they go to sleep. Then the brainwaves arerecorded while sounds are delivered to the sleeping person through earphones.

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How often should hearing be tested?
The chart below provides recommendations for monitoring:
Treatment
Cisplatin
Carboplatin

Dose

How often hearing should be tested

Any• Once, at entry into long-term follow-up (at least
2 years after completion of cancer therapy).
• If problems are detected, repeat yearly until
stable.
• If there is evidence of progressive hearing loss,
test more frequently as needed, until stable.

Radiation field:• Ear• Brain (cranial)• Infratemporal (areabehind thecheekbones)• Nasopharyngeal (nose,
sinuses and/or throat)

30 Gy(3000 cGy)or higher• Yearly for 5 years after completion of cancer
treatment (and if younger than age 10, continue
yearly testing until reaching age 10). Then:- If no hearing problem is detected, test every 5 years.
- If a hearing problem is present, test at least yearly or asrecommended by a hearing specialist.

Less than
30 Gy(3000 cGy)

Aminoglycosideantibiotics or loop
diuretics

Any• Once, at entry into long-term follow-up (at least
2 years after completion of cancer therapy).
• Repeat as needed, if problems are detected.
• If there is any suspicion of a hearing problem, testat least once following completion of therapy.

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 have asignificant impact on a person’s ability to communicate and carry out daily activities.
Younger children are at significant risk for school, learning, and social difficulties andproblems with language development. It is therefore very important for a person withhearing loss to find the services and assistance that will best help to maximize theirpotential to communicate effectively. There are many options available, and these canbe 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.

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Other assistive devices are also available for people with hearing loss. These
include and telephone amplifiers and teletypewriters (TTYs – sometimes also
referred to as Telephone Devices for the Deaf or TDDs). Specialized appliances
designed for people 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 photo transmission.
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 tocommunicate 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 theauditory 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 they 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

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medications that have the potential to cause further hearing loss, including
aminoglycoside antibiotics, loop diuretics, salicylates (such as aspirin) and chelating
agents (such as deferoxamine).
You should also take care to protect your ears from loud noises. In fact, loud noises
can cause significant damage to your ears. Examples of items and activities that canbe hazardous to your hearing include:
Appliances

Occupations

Recreation

Hair dryers

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

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,® pediatric nurse practitioner and clinicaldirector of the Survivorship Clinic, Division of Pediatrics, City of Hope National Medical Center,
Duarte, CA.
Portions adapted from “Noise and Hearing Loss; Do You Know. . .An Educational Series forPatients and Their Families,” St. Jude Children’s Research Hospital, Memphis, TN (used withpermission).
Reviewed by Kathleen Ruccione RN, MPH, FAAN, CPON,® Debra Friedman MD, Smita Bhatia
MD, MPH, Louis S. Constine MD, and Melissa Hudson MD.
Illustrated by Devika Bhatia.
Note: Throughout this Health Links series, the term “childhood cancer” is used to designate pediatriccancers that may occur during childhood, adolescence, or young adulthood. Health Links are designed toprovide health information for survivors of pediatric cancer, regardless of whether the cancer occurred
during childhood, adolescence, or young adulthood.

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Disclaimer and Notice of Proprietary Rights
Introduction to Late Effects Guidelines and Health Links: The “Long-Term Follow-Up Guidelines for Survivors ofChildhood, 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 madeavailable from by the Children’s Oncology Group relating to late effects of cancer treatment and care or containing thetitle "Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers" or the title“Health Link”, 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 otherqualified health provider with any questions you may have regarding 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 yourindependent 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 acourtesy, but not intended as a sole source of guidance in the evaluation of childhood cancer survivors. The
Children’s Oncology Group recognizes that specific patient care decisions are the prerogative of the patient, family,
and healthcare 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 the date 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 your own 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 and all claims, causes of action, suits, proceedings, ordemands 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 excusive copyright and otherright, 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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Heart Problems Following Treatment
for Childhood Cancer
Most childhood cancer survivors do not develop heart problems; however, certain typesof cancer treatment given during childhood can sometimes result in problems with theheart. 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.

Healthy living after treatment for childhood cancer

Health Link

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 withoxygen 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 ofblood through the heart chambers and into
the blood vessels. The rhythm of heart
contraction and rate of the heartbeat arecoordinated by nerves that send electricalimpulses to different parts of the heart. A
thin membrane (pericardium) surrounds andprotects the heart and anchors it within thechest.

Blood
vessels

Atria
ValvesPericardium

Ventricles

ElectricalsystemWhat 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. Commonly usedanthracyclines include:•

Doxorubicin (Adriamycin)•Daunorubicin (daunomycin, Cerubidine)•

Idarubicin (Idamycin)•Mitoxantrone (Novantrone)•Epirubicin

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Heart Problems
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Radiation 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” and “mediastinal” treatment fields)

•

Lungs

•

Spine (chest or “thoracic” portion)•

Whole or upper abdomen•

Left kidney region (left flank or left upper abdomen)•

Total body (TBI)

What 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 (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) 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(cardiomyopathy) and abnormal heart rhythms (arrhythmias).

musclefunction

Radiation therapy may result in scarring and stiffening of heart tissues, causing
abnormal heart rhythm (arrhythmia) 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).

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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 orfunction that have not gotten worse over time. Only a small number of survivors havedeveloped 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, especiallythose 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 withthe heart develops, it can be detected and treated early.
The highest risk factors for anthracyclines and radiation are listed below separately,
although there is overlap:
What factors are associated with increased risk for heart problems after
anthracycline chemotherapy?
•

Receiving a total anthracycline dose of 300 mg/m2 (milligrams per square meterof body surface area) or more when younger than 18 years of age•

Receiving a total anthracycline dose of 550 mg/m2 or more when 18 years or
older

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Being female•

Being of African descent•

Being younger at the time of treatment. (Anyone treated before the age of 5
years, and especially those treated as infants, are at increased risk.)•

Receiving high doses of cyclophosphamide (Cytoxan) before a bone marrow orstem cell transplant•Receiving treatment with Amsacrine, another chemotherapy drug that may affectthe heart•

Receiving treatment with radiation to the heart or surrounding tissues

What factors are associated with increased risk for heart problems after treatment
with radiation?
•

Receiving radiation at doses of 20 Gy (2000 cGy/rads) or more to the following
areas (fields):- Chest/thorax- Mantle (from the chin to the upper abdomen)- Mediastinal (central part of the chest)- Lung- Whole or upper abdomen- Left kidney region (left upper abdomen or left flank)•

Receiving radiation to the spine at doses of 30 Gy (3000 cGy/rads) or higher•

Receiving total body irradiation (TBI)•

Receiving high doses of cyclophosphamide (Cytoxan) before a bone marrow orstem cell transplant•Receiving anthracycline chemotherapy•

Receiving treatment with Amsacrine, another chemotherapy drug that may affectthe heart•

Receiving treatment many years ago. (Modern radiation techniques using lower
total doses and better heart shielding are less likely to cause damage.)

What are the symptoms of heart problems?
•

Shortness of breath•

Dizziness•

Lightheadedness, near fainting or fainting•

Severe fatigue preventing exercise or normal play•

Chest pain that feels like a heavy pressure or fullness and travels to the arm,chin or face.

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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 thearea 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)

What other conditions or activities can make these 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, orvolume of blood in the circulatory system. These changes may occur during pregnancy
or during illnesses with high fevers. If your cancer treatment included medicines that
can affect heart function, be sure that your doctor is aware, so that steps can be taken to
reduce the stress on your heart.
Some drugs may cause stress on the circulatory system, including cocaine, diet pills,
ephedra, mahuang, and performance enhancing drugs. These types of drugs havebeen associated with worsening of heart function and even death in childhood cancer
survivors who received anthracycline chemotherapy.
Exercise is usually good for the heart, but some types of exercise are particularly
stressful to the heart. These include intensive isometric activities, such as heavy
weight lifting and wrestling. When a person is squatting to lift a very heavy weight,
the heart must work harder because the blood pressure in the circulatory systemincreases as a person strains. Using lower amounts of weights to perform an exercise
no more than 15 to 20 times in a row with ease (limited high repetition weight lifting) ismuch less stressful to the heart and is more likely to be safe.
Aerobic exercise (brisk walking, running) is also generally safe and actually healthy forthe heart. To be safe, survivors treated with anthracyclines or chest radiation therapy
should check with their healthcare provider before beginning any exercise program.
Those who choose to engage in strenuous or varsity team sports should discussappropriate guidelines and a plan for ongoing monitoring with their cardiologist.
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 that should include specific evaluation of any symptoms
relating to the heart. In addition, an electrocardiogram (ECG, EKG) should be done at
the time the survivor enters long-term follow-up (usually about 5 years from diagnosis or
2 years from completion of therapy). 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 your healthcare provider):Health Link
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Schedule for Echocardiogram or MUGA Scans
Age at treatment*

Chest radiationYes< 1 yearNo
Yes

1 to 4 years oldNoYes>5 years old

Totalanthracycline
dose**

Recommended
frequency of
ECHO or MUGA

Any

Every year
2<200 mg/m

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
No

Every 5 years
2>200 to <300 mg/m

Every 2 years

2>300 mg/m

Every year

* 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

Survivors who received radiation at a dose of 40 Gy (4000 cGy) or higher to the heartor surrounding tissues or radiation at a dose of 30 Gy (3000 cGy) or higher plus
anthracycline chemotherapy should have an evaluation by a cardiologist for stresstesting 5 to 10 years following radiation, then 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.
Additional evaluation by a cardiologist is recommended for female survivors who are
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 at any dose to the heart or surrounding tissues, if the patient also
received anthracycline chemotherapy•

Total body irradiation (TBI) plus high doses of cyclophosphamide (Cytoxan)prior to bone marrow or stem cell transplant•

Total body irradiation (TBI) plus anthracycline chemotherapy

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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 these 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 theheart and 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 appliedon the transducer and can sometimes cause discomfort. The test results are
displayed on videotape and photographed for the doctor to study later. Manymeasurements are done during this test to help find out if the heart muscle ispumping blood well. The ultrasound tests also looks at the valves of the heart to seethat they open and close normally. Electrodes are usually placed on the chest to
monitor the heart’s electrical impulses 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 are also 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.
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, and highblood cholesterol. You can reduce your risk of heart problems by:Health Link
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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, Melissa M. Hudson MD and Wendy Landier, CPNP.
Debra L. Friedman MD directs the ACCESS Cancer Survivorship Program at Children’s Hospitaland Regional Medical Center in Seattle WA
Melissa M. Hudson MD directs the After Completion of therapy (ACT) clinic at St. Jude Children’s
Research Hospital in Memphis, TN.
Wendy Landier RN, MSN, CPNP, CPON®, is a pediatric nurse practitioner and clinical director of
the Survivorship Clinic at City of Hope National Medical Center in Duarte, CA
Reviewed by: Roberta G. Williams MD, Julie Blatt MD and Joan Darling PhD.
Illustrated by: Devika Bhatia

Note: Throughout this Health Links series, the term “childhood cancer” is used to designate pediatriccancers that may occur during childhood, adolescence, or young adulthood. Health Links are designed toprovide health information for survivors of pediatric cancer, regardless of whether the cancer occurred
during childhood, adolescence, or young adulthood.

Health Link
Healthy living after treatment for childhood cancer

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Disclaimer and Notice of Proprietary Rights
Introduction to Late Effects Guidelines and Health Links: The “Long-Term Follow-Up Guidelines for Survivors ofChildhood, 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 madeavailable from by the Children’s Oncology Group relating to late effects 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 “Health
Link”, whether available in print or electronic format (including any digital format, e-mail transmission, or download fromthe 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 ortreatment 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 otherqualified health provider with any questions you may have regarding 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 yourindependent 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 in the 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 the date 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, atyour own 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 and all claims, causes of action, suits, proceedings, ordemands 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 excusive copyright and otherright, 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 andlegal documents and limiting dissemination or reproduction of Informational Content.

Health Link
Healthy living after treatment for childhood cancer

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Hepatitis
Version 1.2 – 3/04

Hepatitis after Childhood Cancer
Treatment for childhood cancer often requires transfusion of blood and blood products.
Unfortunately, some of these life-saving blood products may also have contained viruses
that can infect the liver. Infection of the liver is called “hepatitis”. There are two maintypes of hepatitis (hepatitis B and hepatitis C) that can be transmitted through blood
products. Before the blood supply was routinely screened for these infections, people
who received blood products may have been infected with these viruses. In the UnitedStates, routine screening of blood donors for hepatitis B began in 1971. The mostaccurate screening test for hepatitis C became available in 1992. Survivors who
received blood products before these dates may have been infected by these viruses.
(Note: the dates that other countries began screening donors for hepatitis may bedifferent.)
Hepatitis B and C can also be spread through other types of blood contact (such as
needle sharing among drug users, tattoos, body piercing, hemodialysis and organtransplantation). These infections can also occur as a result of sexual contact with aninfected person, or from an infected mother to a newborn baby at birth, although thismethod of infection occurs much more commonly 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 andmetabolism, and producing many important substances including blood-clotting proteins.

Healthy living after treatment for childhood cancer

Health Link

What are the signs and symptoms of hepatitis?
Most people do not experience symptoms of hepatitis B or C when first (acutely)
infected. Some people have symptoms similar to the flu, such as fatigue, loss ofappetite, nausea, vomiting, or low-grade fever. Some people may experience symptoms
more directly related to the liver, such as jaundice (yellowish eyes and skin), dark urine,
severe itching, or pale (clay-colored) stools. In rare cases, people may become very ill(fulminant hepatitis) 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 infections may have no symptoms
and feel well, but they are at risk for scarring (cirrhosis) of the liver and othercomplications. 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 along 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 low blood clotting factors.

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Hepatitis
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What tests are done to check for hepatitis?
A blood test can be done to check for viral hepatitis:•

People with chronic hepatitis B infection will test positive for hepatitis B surface
antigen (HbsAg) and usually also test positive for hepatitis B core antibody (HbcAb
or anti-HBc).

•

People with chronic hepatitis C infection usually test positive for the hepatitis C
antibody (HCAb). If the test for hepatitis C antibody is positive, or if the person has
impaired immunity (immunosuppression), the hepatitis C “PCR” test may also bedone to check the level of hepatitis C virus in the blood.

Who is at risk for hepatitis B and C?
Anyone who received the following blood or serum products are at risk for hepatitis B (iftransfused 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 thanyourself)
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• High-risk sexual behavior, multiple sexual partners, unprotected sexualintercourse
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 your blood tests show evidence of chronic hepatitis infection you should:− Have blood tests (ALT, AST, bilirubin, AFP, prothrombin time) at least
yearly to monitor the status of the liver.
− Receive ongoing evaluation (and in many cases treatment) by a liver
specialist.

Health Link
Healthy living after treatment for childhood cancer

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Hepatitis
Version 1.2 – 3/04

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.
• Be careful about using herbs and natural supplements, especially whencombined with medications.
• If you are sexually active, use barrier protection (such as latex condoms) during
intimate sexual contact to prevent infection by viruses that can harm 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.
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.
• Avoid alcohol.
• Avoid over-the-counter pain or fever-reducing medications containing
acetaminophen (such as Tylenol or “aspirin-free” products).
• Female patients who are pregnant should discuss their hepatitis status with theirhealthcare providers (including their obstetrician and the infant’s pediatrician).
How can the spread of infection 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, or
acupuncture. Never share needles.

Health Link
Healthy living after treatment for childhood cancer

Page 3 of 5

Hepatitis
Version 1.2 – 3/04•••

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 betested for hepatitis C.

Written by Wendy Landier, RN, MSN, CPNP, CPON®, pediatric nurse practitioner andclinical director of the Survivorship Clinic, Division of Pediatrics, City of Hope National
Medical Center, Duarte, CA.
Reviewed by: Melissa Hudson MD and Smita Bhatia MD, MPH.
Note: Throughout this Health Links series, the term “childhood cancer” is used to designate pediatriccancers that may occur during childhood, adolescence, or young adulthood. Health Links are designed toprovide health information for survivors of pediatric cancer, regardless of whether the cancer occurred
during childhood, adolescence, or young adulthood.

Health Link
Healthy living after treatment for childhood cancer

Page 4 of 5

Hepatitis
Version 1.2 – 3/04

Disclaimer and Notice of Proprietary Rights
Introduction to Late Effects Guidelines and Health Links: The “Long-Term Follow-Up Guidelines for Survivors ofChildhood, 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 madeavailable from by the Children’s Oncology Group relating to late effects of cancer treatment and care or containing thetitle "Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers" or the title“Health Link”, 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 otherqualified health provider with any questions you may have regarding 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 yourindependent 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 acourtesy, but not intended as a sole source of guidance in the evaluation of childhood cancer survivors. The
Children’s Oncology Group recognizes that specific patient care decisions are the prerogative of the patient, family,
and healthcare 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 the date 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 your own 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 and all claims, causes of action, suits, proceedings, ordemands 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 excusive copyright and otherright, 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.

Health Link
Healthy living after treatment for childhood cancer

Page 5 of 5

Hyperprolactinemia
Version 1.2 – 3/04

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 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.
Pituitary
Hypothalamus

ThyroidHealthy living after treatment for childhood cancer

Health Link

Pancreas

AdrenalGlandsOvaries

TestesWhat 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.
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 secreted by the pituitary gland.

Page 1 of 3
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Hyperprolactinemia
Version 1.2 – 3/04

Its main function is to enhance breast development in females during pregnancy and to
induce lactation (milk production) after childbirth. Too much prolactin can affect the
reproductive system, resulting in 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 andteens, excess prolactin 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 doses of
50 Gy (5000 cGy/rads) or higher, the development of a second tumor (usually noncancerous) in the pituitary region, pregnancy, and certain medications and drugs (suchas marijuana and alcohol). Rarely, thyroid failure (a condition in which the thyroid gland
fails to secrete enough thyroid hormone) can cause hyperprolactinemia. Correcting the
thyroid problem may correct 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 are sometimes needed. The length and type of treatment
varies for each patient and should be discussed with your doctor.

Written by Debra Eshelman, RN, MSN, CPNP, pediatric nurse practitioner andcoordinator of the After the Cancer Experience (ACE) Pediatric and Young Adult
Survivor Programs at Children’s Medical Center of Dallas and the University of Texas
Southwestern Medical Center, Dallas, TX.
Reviewed by Lillian R. Meacham MD, Charles Sklar MD, Julie Blatt MD, and Winnie
Kittiko RN, MS.
Illustrated by Devika Bhatia.
Note: Throughout this Health Links series, the term “childhood cancer” is used to designate pediatriccancers that may occur during childhood, adolescence, or young adulthood. Health Links are designed toprovide health information for survivors of pediatric cancer, regardless of whether the cancer occurred
during childhood, adolescence, or young adulthood.

Health Link
Healthy living after treatment for childhood cancer

Page 2 of 3

Hyperprolactinemia
Version 1.2 – 3/04
Disclaimer and Notice of Proprietary Rights
Introduction to Late Effects Guidelines and Health Links: The “Long-Term Follow-Up Guidelines for Survivors ofChildhood, 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 madeavailable from by the Children’s Oncology Group relating to late effects of cancer treatment and care or containing thetitle "Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers" or the title“Health Link”, 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 otherqualified health provider with any questions you may have regarding 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 yourindependent 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 acourtesy, but not intended as a sole source of guidance in the evaluation of childhood cancer survivors. The
Children’s Oncology Group recognizes that specific patient care decisions are the prerogative of the patient, family,
and healthcare 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 the date 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 your own 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 and all claims, causes of action, suits, proceedings, ordemands 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 excusive copyright and otherright, 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.

Health Link
Healthy living after treatment for childhood cancer

Page 3 of 3

Hypopituitarism
Version 1.2 – 3/04

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 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.
Pituitary
Hypothalamus

ThyroidHealthy living after treatment for childhood cancer

Health Link

Pancreas

AdrenalGlandsOvaries

TestesWhat 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.
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.

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Hypopituitarism
Version 1.2 – 3/04

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 breastfeeding

What causes hypopituitarism?
Risk factors related to childhood cancer treatment include:• Radiation to the brain, especially in doses of 30 Gy (3000 cGy/rads) or higher,
including the following fields:
Cranial (whole brain)
Craniospinal
Nasopharyngeal (nose and throat)
Oropharyngeal (mouth and throat)
OrbitalEye
Ear
Infratemporal (midfacial area behind the cheekbones)
Total body irradiation (TBI)• Surgical removal of the pituitary gland
Other risk factors for pituitary problems include infections, severe head trauma, or
the lack 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 toproduce 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 body deal with physical stress, such as fever or injury. For more information
about ACTH deficiency, see the related Health Link: Central Adrenal Insufficiency.

Health Link
Healthy living after treatment for childhood cancer

Page 2 of 4

Hypopituitarism
Version 1.2 – 3/04

Growth hormone (GH) deficiency:
Growth hormone affects the growth of body tissues and bone as well as fat, muscle,and sugar metabolism. For more information about growth hormone problems, see
the related 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 developmentof sexual characteristics during puberty. If the body doesn’t have enough LH andFSH during puberty, there can be problems with pubertal development. For more
information about male and female hormonal issues, see the related Health Links:
Male Health Issues after Childhood 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 metabolic balance. People with too little thyroxin may
develop the following 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 after Childhood 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
specialized in hormone problems).

Written by Debra Eshelman, RN, MSN, CPNP, pediatric nurse practitioner and coordinator of theAfter the Cancer Experience (ACE) Pediatric and Young Adult Survivor Programs at Children’s
Medical Center of Dallas and the University of Texas Southwestern Medical Center, Dallas, TX.
Reviewed by Lillian R. Meacham MD, Charles Sklar MD, Julie Blatt MD, and Winnie Kittiko, RN,
MS.
Illustrated by Devika Bhatia.
Note: Throughout this Health Links series, the term “childhood cancer” is used to designate pediatriccancers that may occur during childhood, adolescence, or young adulthood. Health Links are designed toprovide health information for survivors of pediatric cancer, regardless of whether the cancer occurred
during childhood, adolescence, or young adulthood.

Health Link
Healthy living after treatment for childhood cancer

Page 3 of 4

Hypopituitarism
Version 1.2 – 3/04
Disclaimer and Notice of Proprietary Rights
Introduction to Late Effects Guidelines and Health Links: The “Long-Term Follow-Up Guidelines for Survivors ofChildhood, 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 madeavailable from by the Children’s Oncology Group relating to late effects of cancer treatment and care or containing thetitle "Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers" or the title“Health Link”, 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 otherqualified health provider with any questions you may have regarding 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 yourindependent 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 acourtesy, but not intended as a sole source of guidance in the evaluation of childhood cancer survivors. The
Children’s Oncology Group recognizes that specific patient care decisions are the prerogative of the patient, family,
and healthcare 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 the date 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 your own 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 and all claims, causes of action, suits, proceedings, ordemands 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 excusive copyright and otherright, 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.

Health Link
Healthy living after treatment for childhood cancer

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Long-Term Follow-Up
Version 1.2 – 3/04

Introduction to Long-Term Follow-Up After Treatment forChildhood, 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 atwork.
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, orfrom a provider who is closer to your home. No matter where you receive your care, it isimportant that you learn what you need to know about your treatment and the follow-up
care that you need so that you can stay in the very best health possible.

Healthy living after treatment for childhood cancer

Health Link

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 Cancer Treatment
Summary, 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) and other
health team members responsible for your care
• Names of all the chemotherapy medicines that you received and how they were
given (such as by mouth or into the vein)• Specific information about certain chemotherapy drugs as follows:- Total doses of the following types of chemotherapy:
Alkylators
Anthracyclines
Bleomycin- Designation of “high dose” (1000 mg/m2 or more in any single dose)versus “standard dose” for cytarabine and methotrexate- Total doses of other chemotherapy agents should be included if available• Name and dates of any surgeries that you had and the name of the surgeon(s)• Radiation therapy summary, including type, dates, site(s), total dose, dose pertreatment (fraction), and fractions of any radiation that you received• Name, address and phone number of the doctor supervising your radiation
treatments• Dates and types of any bone marrow or stem cell transplant(s) and the name,address and phone number of the doctor supervising your transplant(s)Page 1 of 4
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Long-Term Follow-Up
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Type of conditioning (chemotherapy and/or radiation) received for bone marrowor stem cell transplant
Any treatment or preventive measures used for graft-versus-host disease (apotential complication of bone marrow or stem cell transplant)
Names and dates of any significant complication(s), and treatments received forcomplication(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 thesevisits, it is important to talk about your progress and check for problems that canhappen after treatment for cancer. Talk with your healthcare provider about yourindividual situation and determine a schedule for the follow-up care that will meet yourneeds.
Between visits
Once you “graduate” to long-term follow-up care, you will usually need to identify a local
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.
GrowthTreatment for cancer during childhood, especially radiation to the brain or spine, cansometimes 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 theirheart finished growing. Your healthcare provider may recommended tests to checkyour heart function, and may arrange for a cardiologist (heart specialist) to see you if
the tests show any sign of these problems.

Health Link
Healthy living after treatment for childhood cancer

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Long-Term Follow-Up
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Fertility
Radiation to the abdomen or 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.
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
person than you were before you were diagnosed with cancer. As you move forward
into your future, use those strengths to your advantage. Make healthy choices. Keepyour follow-up appointments. And always remember that YOU are the most importantmember of your healthcare team!

Health Link
Healthy living after treatment for childhood cancer

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Long-Term Follow-Up
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Written by Wendy Landier, RN, MSN, CPNP, CPON®, pediatric nurse practitioner and clinicaldirector of the Survivorship Clinic in the Division of Pediatrics, City of Hope National Medical
Center, Duarte, California.
Portions adapted from “Introduction to the After Completion of Therapy Clinic,” St. JudeChildren’s Hospital, Memphis, TN, used with permission.
Reviewed by Melissa Hudson MD and Smita Bhatia MD, MPH.
Note: Throughout this Health Links series, the term “childhood cancer” is used to designate pediatriccancers that may occur during childhood, adolescence, or young adulthood. Health Links are designed toprovide 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 ofChildhood, 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 madeavailable from by the Children’s Oncology Group relating to late effects of cancer treatment and care or containing thetitle "Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers" or the title“Health Link”, 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 otherqualified health provider with any questions you may have regarding 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 yourindependent 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 acourtesy, but not intended as a sole source of guidance in the evaluation of childhood cancer survivors. The
Children’s Oncology Group recognizes that specific patient care decisions are the prerogative of the patient, family,
and healthcare 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 the date 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 your own 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 and all claims, causes of action, suits, proceedings, ordemands 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 excusive copyright and otherright, 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.

Health Link
Healthy living after treatment for childhood cancer

Page 4 of 4

Kidney Health
Version 1.2 – 3/04

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 the sizeof an adult fist, located below the ribcage near the middle of the back.
The kidneys filter about 200 quarts of blood each day, removing harmfulwaste products and excess water, and returning important elements(such as calcium, sodium and potassium) to the blood. Filtering occurs
in tiny units inside the kidneys, known as nephrons. Each kidney has
approximately one million nephrons. After the blood is filtered by thenephrons, the excess water and waste products become urine. The
urine flows from the kidneys to the bladder through tubes called ureters.
The bladder then stores the urine until it is full, at which time the waste
is emptied from the body through the urethra.

Healthy living after treatment for childhood cancer

Health Link

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 lead a 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 ofhealth 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
that can begin years after completion of therapy. There may also be other risk factors
present that can increase the chance of kidney problems. If you have any of thefollowing risk factors, you should take extra care to keep your kidneys healthy:
Radiation involving the kidneys, including:• Kidney (renal) radiation• Whole abdominal radiation• Para-aortic radiation• Spinal radiation at doses of 15Gy (1500 cGy/rads) or higher• Total Body Irradiation (TBI)
Certain medications that can cause kidney damage, including:• Cisplatin (especially if total of all doses was 200 mg/m2 or higher)• Carboplatin• Methotrexate

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Kidney Health
Version 1.2 – 3/04•••

Ifosfamide (especially if total of all doses was 60 grams/m2 or higher).
Treatment with Ifosfamide at a young age (under the age of 5 years)
increases the likelihood of kidney problems.
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 bloodpressure, 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 chronicurinary 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
blood count, and hypertension, may also have other symptoms, including
fatigue, nausea and vomiting, drowsiness, itchy skin, or headaches.
What follow up is recommended?
If you had treatment with ifosfamide, cisplatin, or carboplatin, you should:•

Have a medical check-up at least yearly. This should include a blood pressurecheck, blood tests for kidney function (BUN, creatinine), and a urinalysis.

•

Have a blood test for electrolytes (blood salts and minerals) at your first longterm follow-up visit (at least 2 years after completing cancer treatment), thenevery 5 years (and more often if problems are detected). People with low levels ofblood salts and minerals may need to take supplements (prescribed by a healthcare
provider). This can be important for long-term health. For example, persistently low
levels of blood magnesium can lead to heart problems.

•Have a baseline check of kidney function at least once (at least 2 years after
completing cancer treatment). This should be either a timed urine test (creatinine
clearance) or a GFR scan (special x-ray that measures kidney function using asmall amount of radioactive material injected through a vein). If any problems aredetected, this test should be repeated periodically to monitor your kidney function.
Your healthcare provider may also refer you to a nephrologist (kidney specialist) for
additional evaluation.

Health Link
Healthy living after treatment for childhood cancer

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Kidney Health
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If you had treatment with radiation involving the kidneys or cystectomy, you should:•

Have a medical check-up at least yearly. This should include a blood pressurecheck, blood tests for kidney function (BUN, creatinine), and a urinalysis.

•

If you have high blood pressure or abnormal BUN, creatinine, or urinalysis,
you should have a blood test for electrolytes (blood salts and minerals) and acreatinine clearance test or GFR scan. The creatinine clearance test is a timed
urine collection. The GFR scan is a special x-ray that measures kidney function
using a small amount of radioactive material injected through a vein. If any problems
are detected, these tests should be repeated periodically to monitor your kidney
function. Your healthcare provider may also refer you to a nephrologist (kidneyspecialist) for additional evaluation.

•

If you have had a cystectomy (bladder removal), you should also have a urine
culture and an evaluation by a urologist (urinary tract specialist) at least once ayear.

If you had treatment with methotrexate (and did not receive any of the other treatments
listed above), you should:•

Have a medical check-up, including blood pressure check, at least yearly.

•

Have blood tests for kidney function (BUN, creatinine) and a urinalysis at yourfirst long-term follow-up visit (at least 2 years after completing cancer treatment).

•

If you have high blood pressure or abnormal BUN, creatinine, or urinalysis,
you should have a blood test for electrolytes (blood salts and minerals) and acreatinine clearance test or GFR scan. The creatinine clearance test is a timed
urine collection. The GFR scan is a special x-ray that measures kidney function
using a small amount of radioactive material injected through a vein. If any problems
are detected, these tests should be repeated periodically to monitor your kidney
function. Your healthcare provider may also refer you to a nephrologist (kidneyspecialist) for additional evaluation.

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 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 in excessive
doses or when two or more of these medications are combined with caffeine orcodeine and taken over long periods of time. If you require long-term medications
for management of pain, be sure to discuss the alternatives with your healthcare
provider, and to choose medications that are not harmful to your kidneys.

•

Have a health checkup at least once a year including the tests recommended
above based on the cancer treatment you received.

Health Link
Healthy living after treatment for childhood cancer

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Kidney Health
Version 1.2 – 3/04

Summary of Recommendations for Follow-Up
Treatment received• Ifosfamide• Cisplatin• Carboplatin

Recommended Follow-Up
Medical check-up including bloodpressure check
Blood tests to check kidney function(BUN & creatinine)
Urinalysis
Blood test for electrolytes (blood salts
and minerals)
Kidney function test (creatinine
clearance or GFR)

• Radiation involving
the kidneys• Cystectomy• Cystectomy(also refer to above
recommendations)• Methotrexate

Medical check-up including bloodpressure check
Blood tests to check kidney function(BUN & creatinine)
Urinalysis
Blood test for electrolytes (blood salts
and minerals) and kidney function test
(creatinine clearance or GFR)
Urine culture
Check-up by urologist
Medical check-up including bloodpressure check
Blood tests to check kidney function(BUN & creatinine)
Urinalysis
Blood test for electrolytes (blood salts
and minerals) and kidney function test
(creatinine clearance or GFR)How Often
YearlyYearlyYearlyFirst long-term follow-up visit,*
then every 5 years
First long-term follow-up visit,*
repeated periodically if
problems are detected
YearlyYearlyYearlyIf high blood pressure, proteinin the urine, or abnormal BUN
or creatinine. Repeat
periodically if problems
detected.
YearlyYearlyYearlyFirst long-term follow-up visit*

First long-term follow-up visit*
If high blood pressure, proteinin the urine, or abnormal BUN
or creatinine. Repeat
periodically if problems
detected.
* First long-term follow-up visit should be at least 2 years after completing cancer therapy

Written by Anne Mauck, RN, MSN, CPNP, pediatric nurse practitioner in the Division of PediatricHematology 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
Hudson MD, Smita Bhatia, MD, MPH, and Catherine L. Woodman MD.
Illustrated by Devika Bhatia.
Note: Throughout this Health Links series, the term “childhood cancer” is used to designate pediatriccancers that may occur during childhood, adolescence, or young adulthood. Health Links are designed toprovide health information for survivors of pediatric cancer, regardless of whether the cancer occurred
during childhood, adolescence, or young adulthood.

Health Link
Healthy living after treatment for childhood cancer

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Kidney Health
Version 1.2 – 3/04
Disclaimer and Notice of Proprietary Rights
Introduction to Late Effects Guidelines and Health Links: The “Long-Term Follow-Up Guidelines for Survivors ofChildhood, 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 madeavailable from by the Children’s Oncology Group relating to late effects of cancer treatment and care or containing thetitle "Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers" or the title“Health Link”, 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 otherqualified health provider with any questions you may have regarding 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 yourindependent 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 acourtesy, but not intended as a sole source of guidance in the evaluation of childhood cancer survivors. The
Children’s Oncology Group recognizes that specific patient care decisions are the prerogative of the patient, family,
and healthcare 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 the date 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 your own 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 and all claims, causes of action, suits, proceedings, ordemands 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 excusive copyright and otherright, 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.

Health Link
Healthy living after treatment for childhood cancer

Page 5 of 5

Limb Salvage
Version 1.2 – 3/04

Limb Salvage After Bone Cancer
What is “limb salvage”?
Limb salvage is a surgical procedure that replaces a diseased boneand reconstructs a functional limb by using a metal implant, a bone
graft from another person (allograft), or a combination bone graft
and metal implant (allo-prosthetic composite).
What are the goals of this procedure?
The goals are the complete resection of the tumor with minimal
complications while maintaining acceptable function, durability, andappearance of the limb.

Healthy living after treatment for childhood cancer

Health Link

What are the potential late effects after a limb salvage
procedure?
•

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

•

Limb-length discrepancy - Bones are constantly growing throughout 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 salvage procedure. Since thereconstructed section of bone cannot grow, a limb-length discrepancy may occur.
Surgeries or other procedures may be necessary to accommodate 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. If you notice any looseningof the implant notify your healthcare provider.

•

Contractures - After a limb salvage procedure, muscles, tendons and ligaments
sometimes stiffen or shrink, forming contractures (permanent tightening of the joint).
This is more likely to occur in people who are not physically active. Periodic followup with a physical and/or occupational therapist is helpful in order to prevent theformation of contractures.

.
What is the recommended follow-up care after a limb salvage procedure?
•

Follow-up visits are usually done by the orthopedic surgeon (bone specialist)
every 6 months until the person is full-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.

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Limb Salvage
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What can you do to promote health after limb salvage surgery?
•Physical and occupational therapy play an important role in successful
rehabilitation after limb salvage surgery. Both passive and active range-ofmotion exercises are important in maintaining optimal 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, 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 blood stream during theseprocedures and become attached to the internal metal components (screws, plates,rods, joints).

•

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 have had bone cancer and a metal implant.

Written by Asako Komiya, RN, MSN, PNP, Pediatric Nurse Practitioner, Division of Pediatrics,
City of Hope National Medical Center, Duarte, CA.
Reviewed by J. Dominic Femino MD, Neyssa Marina MD, Winnie Kittiko RN, MS, and Catherine
L. Woodman MD.
Illustrated by Devika Bhatia.
Note: Throughout this Health Links series, the term “childhood cancer” is used to designate pediatriccancers that may occur during childhood, adolescence, or young adulthood. Health Links are designed toprovide health information for survivors of pediatric cancer, regardless of whether the cancer occurred
during childhood, adolescence, or young adulthood.

Health Link
Healthy living after treatment for childhood cancer

Page 2 of 3

Limb Salvage
Version 1.2 – 3/04
Disclaimer and Notice of Proprietary Rights
Introduction to Late Effects Guidelines and Health Links: The “Long-Term Follow-Up Guidelines for Survivors ofChildhood, 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 madeavailable from by the Children’s Oncology Group relating to late effects of cancer treatment and care or containing thetitle "Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers" or the title“Health Link”, 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 otherqualified health provider with any questions you may have regarding 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 yourindependent 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 acourtesy, but not intended as a sole source of guidance in the evaluation of childhood cancer survivors. The
Children’s Oncology Group recognizes that specific patient care decisions are the prerogative of the patient, family,
and healthcare 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 the date 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 your own 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 and all claims, causes of action, suits, proceedings, ordemands 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 excusive copyright and otherright, 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.

Health Link
Healthy living after treatment for childhood cancer

Page 3 of 3

Liver Health
Version 1.2 – 3/04

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 theright side of the body. In an average adult, the liver is about the sizeof a football and weighs about three pounds. The liver is responsible
for filtering out toxins from the blood, aiding with digestion andmetabolism, 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 theesophagus or stomach. Very rarely, liver cancer may develop.

Healthy living after treatment for childhood cancer

Health Link

Who is at risk?
People who had radiation to the following areas may be at risk for liver problems:• Total Body Irradiation (TBI)• Radiation to the whole abdomen• Radiation to the liver, especially at doses of 20 Gy (2000 cGy/rads) or higher
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• Dactinomycin
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”

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Liver Health
Version 1.2 – 3/04••

History of multiple transfusions- see related Health Link: “Hepatitis after Childhood Cancer”
Chronic graft-versus-host disease (as a result of bone marrow or stem celltransplant)

What tests are done to monitor the liver?
There are three main types of blood tests 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.

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 (usually about 5 years fromdiagnosis or 2 years following completion of therapy). The liver should also bechecked for enlargement by a healthcare professional during yearly physicalexaminations. 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”).
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.

Health Link
Healthy living after treatment for childhood cancer

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Liver Health
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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®, pediatric nurse practitioner and clinicaldirector of the Survivorship Clinic, Division of Pediatrics, City of Hope National Medical Center,
Duarte, CA.
Reviewed by: Melissa Hudson MD and Smita Bhatia MD, MPH.
Illustrated by Devika Bhatia.
Note: Throughout this Health Links series, the term “childhood cancer” is used to designate pediatriccancers that may occur during childhood, adolescence, or young adulthood. Health Links are designed toprovide health information for survivors of pediatric cancer, regardless of whether the cancer occurred
during childhood, adolescence, or young adulthood.

Health Link
Healthy living after treatment for childhood cancer

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Liver Health
Version 1.2 – 3/04

Disclaimer and Notice of Proprietary Rights
Introduction to Late Effects Guidelines and Health Links: The “Long-Term Follow-Up Guidelines for Survivors ofChildhood, 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 madeavailable from by the Children’s Oncology Group relating to late effects of cancer treatment and care or containing thetitle "Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers" or the title“Health Link”, 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 otherqualified health provider with any questions you may have regarding 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 yourindependent 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 acourtesy, but not intended as a sole source of guidance in the evaluation of childhood cancer survivors. The
Children’s Oncology Group recognizes that specific patient care decisions are the prerogative of the patient, family,
and healthcare 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 the date 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 your own 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 and all claims, causes of action, suits, proceedings, ordemands 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 excusive copyright and otherright, 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.

Health Link
Healthy living after treatment for childhood cancer

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Male Health Issues
Version 1.2 – 3/04

Male Health Issues after Treatment for Childhood Cancer
The effects of childhood cancer therapy on male reproductive function depend on manyfactors, including the person’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 organs function and how they may be affected by therapy
given to treat cancer during childhood.

Healthy living after treatment for childhood cancer

Health Link

The male reproductive organs
The male reproductive system is made upof the scrotum, testicles, vas deferens,
epididymis, seminal vesicles, prostate
Bladdergland, penis, and urethra, and is
Seminal
Vesiclecontrolled by the pituitary gland in thebrain. The testicles are located in the
Prostate
scrotum (the loose pouch of skin that
Penis
Gland
hangs behind the penis). The testicles
are made up of Leydig cells (cells that
UrethraVas Deferens
produce the male hormone - testosterone)and germ cells (cells that produce sperm).
Epididymis
When a boy enters puberty, the pituitary
gland releases two hormones (FSH and
TesticleLH) that signal the testicles to begin
Scrotum
producing sperm and testosterone. As
puberty progresses, testosterone causes
deepening of the voice, enlargement of
the penis and testicles, growth of facial
and body hair, and muscular development of the body. Sperm produced by the testicles
mature in the epididymis (a coiled tube that sits on top of each testicle) and then travel
into the vas deferens (sperm storage area). The seminal vesicles and prostate glandproduce fluids that mix with the sperm to create semen. When a man ejaculates, sperm
are pumped out through the vas deferens, mixed with fluids from the prostate andseminal vesicles, and exit the body through the urethra (tube that carries fluids out of thepenis).
How does cancer therapy affect the male reproductive system?
The most common effect of cancer therapy on the male reproductive system is infertility(the inability to initiate a pregnancy). Infertility can occur as a result of certain types ofchemotherapy, radiation to the brain or testicles, or surgery involving the male
reproductive system.
Another possible effect of cancer therapy on the male reproductive system is
testosterone deficiency, also known as “hypogonadism” or “Leydig cell failure.” This is
the inability to produce enough of the male hormone, testosterone, and can result fromdamage to the Leydig cells or pituitary gland caused by radiation to the testicles orbrain. If this occurs in a young boy, he will not be able to go into puberty without thehelp of hormones prescribed by a doctor. Males who develop testosterone deficiency
after puberty will need hormonal therapy in order to maintain their musculardevelopment, bone and muscle strength, proper distribution of body fat, sperm
production, sex drive, and potency.
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Male Health Issues
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What are the causes of male reproductive problems after childhood cancer
treatment?
Chemotherapy of the “alkylator” type (such as cyclophosphamide, nitrogenmustard and procarbazine) may cause infertility. The total dose of alkylators usedduring cancer therapy is important in determining the likelihood of damage to spermproducing cells. The higher the total dose, the more potential for developing
infertility. If alkylating chemotherapy was used in combination with radiation, the riskof infertility may be increased.
Radiation therapy can affect testicular function in two ways:• Radiation aimed directly at or near the testicles. The sperm-forming cells(germ cells) are very sensitive to the effects of radiation therapy.
Most males
who receive radiation to the testicles at doses of 6 Gy (600 cGy/rads) or higher
will be infertile. Even radiation doses of 3 Gy (300 cGy/rads) or lower may
cause a drop in the number and quality of sperm produced. This reduction in
sperm production may be temporary, but infertility can sometimes occur even atvery low radiation doses. Testosterone production often continues even if the
sperm-forming cells are no longer functioning, because the cells that produce
testosterone (Leydig cells) are not as sensitive to radiation. However, testicularradiation in doses of 20 Gy (2000 cGy/rads) or higher often causes the Leydig
cells to stop functioning, resulting in testosterone deficiency.
• 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 withlow levels of these hormones will need to take testosterone for the rest of theirlives. However, it is sometimes possible for these men to attain fertility with theuse of specialized hormone treatments. Men who have infertility as a result ofbrain radiation and wish to achieve fertility should see a fertility specialist.
Surgery that involves removal of both testicles will result in infertility and testosterone
deficiency. Surgery such as retroperitoneal lymph node dissection (RPLD) may cause
damage to the nerves in the pelvic area and may prevent the ejaculation of sperm.
Removal of the prostate or bladder may result in 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.
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. Examples of these drugs are:
Cyclophosphamide (Cytoxan)
Ifosfamide
Nitrogen mustard
Procarbazine
MelphalanBusulfan
Chlorambucil
Lomustine (CCNU)

Health Link

Healthy living after treatment for childhood cancer

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Male Health Issues
Version 1.2 – 3/04

Carmustine (BCNU)
Thiotepa
Dacarbazine (DTIC)
Temozolamide
Carboplatin
Cisplatin•

Radiation therapy to any of the following areas may cause infertility.
Testicles
Pelvis“Inverted Y” or total nodal radiation
Inguinal/femoral areas
TBI (total body irradiation)
Spinal - if dose was 24 Gy (2400 cGy/rads) or higher
Cranial (brain) - if dose was 30 Gy (3000 cGy/rads) or higher
In addition to causing infertility, high doses of radiation to the testicles (usually
20 Gy or higher) or brain (usually 30 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)
Cystectomy (removal of the bladder)
Prostatectomy (removal of the prostate)
In addition, removal of both testicles will also result in testosterone deficiency.
What monitoring is recommended?
Males who have had any cancer treatments placing them at risk for problems with thereproductive system should 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 be recommended.
What can be done for testosterone deficiency?
Males with low testosterone levels should receive testosterone replacement therapy.
Testosterone is available in several forms, including gels, skin patches, and injections.
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. In some men with infertility, there may be adecrease 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, andinfertility will be permanent. In other males, the only sure 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 a likely
indicator of infertility.

Health Link

Healthy living after treatment for childhood cancer

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Male Health Issues
Version 1.2 – 3/04

In men who have azoospermia as a result of radiation, return of sperm production isunlikely. However, in men who have azoospermia as a result of chemotherapy, theeffect on male fertility is highly variable. Recovery of sperm production may occur
months or years after the completion of chemotherapy in some men. For others, thedamage may be permanent. It may be impossible to determine if sperm production will
resume at some time in the future, especially if chemotherapy ended only a few years
prior to the semen analysis. For this reason, always assume that you can makesomeone pregnant unless you are absolutely sure that you cannot!!
When should I get a semen analysis?
Any sexually mature male who is concerned about fertility should have a semen
analysis performed.
Most hospitals or clinics that have an adult urology orobstetric/gynecology department will have the facilities to perform a semen analysis.
Not all insurance companies cover the cost of this analysis, so you should check withyour insurance company to be sure, or check with the hospital or clinic regarding thecosts of this procedure. If the results are within normal limits, there is no need to do
anything further.
What if the sperm count is very low?
If the results show no sperm (azoospermia) or very low sperm counts, the test should
be repeated several times. Sperm recovery following chemotherapy may take as longas 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 varyconsiderably from day to day, so sub-normal test results may improve if additional
samples are checked after waiting for a month or two. Sperm production and quality
may continue to improve as more time passes from the chemotherapy 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 various assisted reproductive techniques such as artificial insemination or
in-vitro fertilization (IVF).
What are my options if I have no sperm in the sample?
If semen analysis shows no sperm, and fertility is 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 have been able to locate areasof active sperm production in the testes of men who were thought to be azoospermic.
Surgical harvesting of the sperm has allowed conception with techniques devised formen with absent or very low sperm counts. Occasionally, azoospermia may beunrelated to chemotherapy altogether, and treatment for another disorder may be
indicated.
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.
Another option for males who produce no sperm may be donor insemination. This
results in pregnancy with a child that is biologically related only to the mother. Additional
options include adoption of a biologically unrelated child or child-free living.

Health Link

Healthy living after treatment for childhood cancer

Page 4 of 6

Male Health Issues
Version 1.2 – 3/04

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, Coordinator, 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, andMissy Layfield.
Illustrated by Devika Bhatia.
Note: Throughout this Health Links series, the term “childhood cancer” is used to designate pediatriccancers that may occur during childhood, adolescence, or young adulthood. Health Links are designed toprovide health information for survivors of pediatric cancer, regardless of whether the cancer occurred
during childhood, adolescence, or young adulthood.

Health Link
Healthy living after treatment for childhood cancer

Page 5 of 6

Male Health Issues
Version 1.2 – 3/04
Disclaimer and Notice of Proprietary Rights
Introduction to Late Effects Guidelines and Health Links: The “Long-Term Follow-Up Guidelines for Survivors ofChildhood, 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 madeavailable from by the Children’s Oncology Group relating to late effects of cancer treatment and care or containing thetitle "Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers" or the title“Health Link”, 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 otherqualified health provider with any questions you may have regarding 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 yourindependent 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 acourtesy, but not intended as a sole source of guidance in the evaluation of childhood cancer survivors. The
Children’s Oncology Group recognizes that specific patient care decisions are the prerogative of the patient, family,
and healthcare 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 the date 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 your own 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 and all claims, causes of action, suits, proceedings, ordemands 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 excusive copyright and otherright, 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.

Health Link
Healthy living after treatment for childhood cancer

Page 6 of 6

Peripheral Neuropathy
Version 1.2 – 3/04

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.

Healthy living after treatment for childhood cancer

Health Link

Symptoms of peripheral neuropathy:• 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
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.

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Peripheral Neuropathy
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Recommended screening
Anyone who has received cancer treatment during childhood should have a yearly
comprehensive medical check-up. If peripheral neuropathy is suspected, a thoroughneurological examination should be included in this check-up. If a significant problem is
detected, a referral to a neurologist (doctor who specializes in problems of the nervous
system) may be needed for further testing. People with peripheral neuropathy may also
benefit from physical and/or occupational therapy.
Treatment
Rehabilitation services
Since there is no treatment that can cure or reverse nerve damage, treatment isdirected toward symptom management. Physical therapy is often helpful in providing
exercises to improve strength, balance, and coordination. Occupational therapy canprovide 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.

•

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 E-mail: info@neuropathy.org Phone: 212 692-0662

Health Link
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Peripheral Neuropathy
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Written by Susan Shannon, RN, MSN, CPNP, CPON®, pediatric nurse practitioner andcoordinator of the “STAR” Late Effects program at Miller Children’s Hospital in Long Beach, CA.
Reviewed by Thanh Le, MD, Joetta Deswarte-Wallace RN, MSN, Neyssa Marina MD, and DebraFriedman MD.
Note: Throughout this Health Links series, the term “childhood cancer” is used to designate pediatriccancers that may occur during childhood, adolescence, or young adulthood. Health Links are designed toprovide 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 ofChildhood, 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 madeavailable from by the Children’s Oncology Group relating to late effects of cancer treatment and care or containing thetitle "Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers" or the title“Health Link”, 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 otherqualified health provider with any questions you may have regarding 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 yourindependent 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 acourtesy, but not intended as a sole source of guidance in the evaluation of childhood cancer survivors. The
Children’s Oncology Group recognizes that specific patient care decisions are the prerogative of the patient, family,
and healthcare 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 the date 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 your own 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 and all claims, causes of action, suits, proceedings, ordemands 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 excusive copyright and otherright, 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.

Health Link
Healthy living after treatment for childhood cancer

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Precocious Puberty
Version 1.2 – 3/04

Endocrine Problems after Childhood Cancer:
Precocious Puberty
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.
Pituitary
Hypothalamus

ThyroidHealthy living after treatment for childhood cancer

Health Link

Pancreas

AdrenalGlandsOvaries

TestesWhat 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.
What are the normal ages when puberty occurs?
Puberty occurs at different ages in different children. In fact, there is a wide range ofages at which puberty first begins. The timing of puberty is influenced by a person’s

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Precocious Puberty
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genetic background, and the onset of puberty at a young age may run in families. Girls
usually begin to develop breasts and then pubic hair at around 10 or 11 years of age,
but the range of normal is between 8 and 13 years old. Menstrual periods usually startaround 12 to 13 years of age, but may occur earlier or later and still be normal. Boys
usually develop enlarging testicles and then pubic hair between 11 and 12 years of age,
but the range of normal is between 9 and 14 years old.
What is precocious puberty?
Precocious puberty means having signs of puberty (such as pubic hair or breast growth)at an age younger than the normal range. Early puberty causes the development ofsexual traits earlier than expected, and leads to rapid bone growth that can result inshort stature. 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.
What are the risk factors for developing precocious puberty?
Risk factors related to childhood cancer treatment include:
•

•
•
•

Radiation to the head or brain, especially in doses of 18 Gy (1800 cGy/rads) or
higher, including the following fields:
Cranial (whole brain)
Craniospinal
Nasopharyngeal (nose and throat)
Oropharyngeal (mouth and throat)
OrbitalEye
Ear
Infratemporal (midfacial area behind the cheekbones)
Total body irradiation (TBI)
Female gender
Younger age at treatment

Early puberty is also more common in overweight children. Excess weight may or may
not be related to cancer treatment.
Why does precocious puberty happen?
The hypothalamus and pituitary glands may signal the ovaries (in girls) or testicles (inboys) to make female or male hormones at an earlier time. In other cases, signs ofpuberty occur early because of abnormalities in the ovaries, testicles or adrenal glands.
Tests are done to learn if the cause of precocious puberty is in the brain or in anotherpart 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.

Health Link
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Precocious Puberty
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If the survivor has any of the risk factors described above, or if there are signs ofaccelerated growth or early puberty, the following tests are recommended:•

A blood test for FSH (follicle stimulating hormone), LH (luteinizing hormone) andsex hormone (estradiol or testosterone) level•

Bone age x-ray (an x-ray that measures the developmental age or maturation ofbone)

How is precocious puberty treated?
If a problem is detected, a referral may be made to an endocrinologist (doctor who
specializes in hormone problems). Medications may be used to temporarily stop
puberty and to decrease the rate of bone maturation. It is also important to evaluate
and manage the psychological effects of beginning puberty too early. Although children
with precocious puberty may have a mature physical appearance, their thoughts,
emotions and behaviors are still that of their actual (chronological) age.
Written by Debra Eshelman, RN, MSN, CPNP, pediatric nurse practitioner and coordinator of theAfter the Cancer Experience (ACE) Pediatric and Young Adult Survivor Programs at Children’s
Medical Center of Dallas and the 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, and Peggy Kulm RN, MA.
Illustrated by Devika Bhatia.
Note: Throughout this Health Links series, the term “childhood cancer” is used to designate pediatriccancers that may occur during childhood, adolescence, or young adulthood. Health Links are designed toprovide health information for survivors of pediatric cancer, regardless of whether the cancer occurred
during childhood, adolescence, or young adulthood.

Health Link
Healthy living after treatment for childhood cancer

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Precocious Puberty
Version 1.2 – 3/04
Disclaimer and Notice of Proprietary Rights
Introduction to Late Effects Guidelines and Health Links: The “Long-Term Follow-Up Guidelines for Survivors ofChildhood, 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 madeavailable from by the Children’s Oncology Group relating to late effects of cancer treatment and care or containing thetitle "Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers" or the title“Health Link”, 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 otherqualified health provider with any questions you may have regarding 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 yourindependent 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 acourtesy, but not intended as a sole source of guidance in the evaluation of childhood cancer survivors. The
Children’s Oncology Group recognizes that specific patient care decisions are the prerogative of the patient, family,
and healthcare 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 the date 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 your own 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 and all claims, causes of action, suits, proceedings, ordemands 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 excusive copyright and otherright, 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.

Health Link
Healthy living after treatment for childhood cancer

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Pulmonary Health
Version 1.2 – 3/04

Pulmonary Health
The lungs are very important organs that are responsible for supplying oxygen to thebody and ridding it of carbon dioxide. Sometimes, treatments given for childhood cancer
can cause lung damage. If you received any treatments that have the potential to causelung problems, it is important to learn about the lungs, and what you can do to keepthem as healthy as possible.
How the lungs function
The lungs transfer oxygen from the air to the blood, where it iscirculated to the vital organs in the body. The lungs also get rid ofcarbon dioxide, a waste product made by the body’s cells. In orderfor oxygen 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, andless oxygen reaches the blood. The person may then need tobreathe faster in order to get enough oxygen. This can make theperson feel short of breath. Other lung problems can be caused byinflammation (swelling) of the air passages in the lungs 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?

Healthy living after treatment for childhood cancer

Health Link

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 (including mantle, mediastinal, or whole lung fields)•

Radiation to the abdomen (including whole abdomen or any upper abdominal
field)•

Radiation to the spine in doses of 30 Gy (3000 cGy/rads) or higher•

Total body irradiation (TBI)•

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 thanyourself (allogeneic transplant), if you then developed chronic graft versus hostdisease (chronic GVHD)

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.

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Pulmonary Health
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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 smoke
What problems can develop?
Problems can include scarring of the lungs (pulmonary fibrosis), repeated lunginfections (such as chronic bronchitis or recurrent pneumonia), and rupture of the tiny
air sacs in the lungs or thickening and blockage of air passages within the lungs(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 andspirometry) 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
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.

•

In some cases, your healthcare provider may recommend repeating the chest xray 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 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.

What can I do to prevent lung problems?
•

If you don’t smoke, dip, or chew tobacco, DON’T START.

•

If you smoke or use tobacco, quitting is the most important thing you can do
to maintain and improve your overall health.

•Avoid second-hand smoke.

Health Link
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Pulmonary Health
Version 1.2 – 3/04•

Get regular physical exercise.

•

Avoid breathing toxic fumes from chemicals, solvents, and paints.

•

Follow all safety precautions 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 and yourhealthcare 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 1-800-ACS-2345
American Heart Association 1-800-AHA-USA1
American Lung Association 1-800-LUNG-USA
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.
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. Charlene Maxen is a
Pediatric Subspecialty Manager and Dr. Sarah Friebert is the Director of the Pediatric Palliative
Care Program in the Division of Hematology/Oncology at Childrens Hospital Medical Center of
Akron in Akron, Ohio.
Reviewed by: Melissa Hudson MD, Debra Friedman MD, John R. Mussman, Neyssa Marina
MD, and Kevin Oeffinger MD.
Illustrated by Devika Bhatia.

Health Link
Healthy living after treatment for childhood cancer

Page 3 of 4

Pulmonary Health
Version 1.2 – 3/04

Note: Throughout this Health Links series, the term “childhood cancer” is used to designate pediatriccancers that may occur during childhood, adolescence, or young adulthood. Health Links are designed toprovide 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 ofChildhood, 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 madeavailable from by the Children’s Oncology Group relating to late effects of cancer treatment and care or containing thetitle "Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers" or the title“Health Link”, 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 otherqualified health provider with any questions you may have regarding 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 yourindependent 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 acourtesy, but not intended as a sole source of guidance in the evaluation of childhood cancer survivors. The
Children’s Oncology Group recognizes that specific patient care decisions are the prerogative of the patient, family,
and healthcare 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 the date 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 your own 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 and all claims, causes of action, suits, proceedings, ordemands 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 excusive copyright and otherright, 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.

Health Link
Healthy living after treatment for childhood cancer

Page 4 of 4

Raynaud’s Phenomenon
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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 andblood flow 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 thumb) and toes (usually withoutpain)• Occasional episodes of pain (described as throbbing) and swelling

Healthy living after treatment for childhood cancer

Health Link

What 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:••

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.

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Raynaud’s Phenomenon
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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 withyour healthcare provider regarding possible alternatives.
Certain over-the-counter cold or diet pills can make symptoms worse and should 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.

Written by Susan Shannon, RN, MSN, CPNP, CPON®, pediatric nurse practitioner andcoordinator of the “STAR” Late Effects program at Miller Children’s Hospital in Long Beach, CA.
Reviewers: Thanh Le MD, Joetta Deswarte-Wallace RN, MSN, Neyssa Marina MD, DebraFriedman MD, Melissa Hudson MD, Rebecca D. Pentz PhD, and John R. Mussman.
Note: Throughout this Health Links series, the term “childhood cancer” is used to designate pediatriccancers that may occur during childhood, adolescence, or young adulthood. Health Links are designed toprovide health information for survivors of pediatric cancer, regardless of whether the cancer occurred
during childhood, adolescence, or young adulthood.

Health Link
Healthy living after treatment for childhood cancer

Page 2 of 3

Raynaud’s Phenomenon
Version 1.2 – 3/04
Disclaimer and Notice of Proprietary Rights
Introduction to Late Effects Guidelines and Health Links: The “Long-Term Follow-Up Guidelines for Survivors ofChildhood, 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 madeavailable from by the Children’s Oncology Group relating to late effects of cancer treatment and care or containing thetitle "Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers" or the title“Health Link”, 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 otherqualified health provider with any questions you may have regarding 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 yourindependent 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 acourtesy, but not intended as a sole source of guidance in the evaluation of childhood cancer survivors. The
Children’s Oncology Group recognizes that specific patient care decisions are the prerogative of the patient, family,
and healthcare 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 the date 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 your own 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 and all claims, causes of action, suits, proceedings, ordemands 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 excusive copyright and otherright, 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.

Health Link
Healthy living after treatment for childhood cancer

Page 3 of 3

Reducing Risk of Cancers
Version 1.2 – 3/04

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 bereminded about is the risk of developing a second cancer during adulthood. For avariety of reasons, the risk of cancer increases for everyone as they age. Several
studies have shown that as childhood cancer survivors become older, they have aslightly 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 therapy, their specific treatment, and their genetic and family history.

Healthy living after treatment for childhood cancer

Health Link

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 to children at a young
age. Newer equipment and techniques allow radiation oncologists to treat just theareas involved by cancer and shield normal tissues.

•

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 and accountfor less than 10 percent of patients with cancer. Doctors suspect the presence of acancer gene when a family history shows multiple cancers among young people inevery generation, or when cancer occurs in both sides of paired organs (such as theeyes, breasts, kidneys, etc.) If you have any questions or think that cancer may “runin 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.

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.

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Reducing Risk of Cancers
Version 1.2 – 3/04

What monitoring is recommended?
By practicing health maintenance behaviors, you can improve your awareness ofchanges 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, and surgery,is vital to your future health. This information should be available to you or yourhealthcare 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• 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 tobacco andshould 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.

Health Link
Healthy living after treatment for childhood cancer

Page 2 of 4

Reducing Risk of Cancers
Version 1.2 – 3/04

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 colon cancer;
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 inother 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 containpreservatives like nitrites can increase the risk of cancer in the stomach andesophagus. Some of these foods, especially lunchmeats, are also high in fat. Foods ofthis kind should 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 Hudson MD and Allison Hester, RN, MSN, CPNP. Portions adapted fromCCSS Newsletter, Fall 1999 and Winter 2001, used with permission.
Melissa Hudson, MD directs the After Completion of therapy (ACT) clinic at St. Jude Children’s
Research Hospital in Memphis, TN.
Allison Hester, RN, MSN, CPNP is a pediatric nurse practitioner in the After Completion oftherapy (ACT) clinic at St. Jude Children’s Research Hospital in Memphis, TN.
Reviewed by Smita Bhatia MD, MPH, Debra Friedman MD, and Fran Wiley RN, MN.
Note: Throughout this Health Links series, the term “childhood cancer” is used to designate pediatriccancers that may occur during childhood, adolescence, or young adulthood. Health Links are designed toprovide health information for survivors of pediatric cancer, regardless of whether the cancer occurred
during childhood, adolescence, or young adulthood.

Health Link
Healthy living after treatment for childhood cancer

Page 3 of 4

Reducing Risk of Cancers
Version 1.2 – 3/04
Disclaimer and Notice of Proprietary Rights
Introduction to Late Effects Guidelines and Health Links: The “Long-Term Follow-Up Guidelines for Survivors ofChildhood, 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 madeavailable from by the Children’s Oncology Group relating to late effects of cancer treatment and care or containing thetitle "Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers" or the title“Health Link”, 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 otherqualified health provider with any questions you may have regarding 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 yourindependent 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 acourtesy, but not intended as a sole source of guidance in the evaluation of childhood cancer survivors. The
Children’s Oncology Group recognizes that specific patient care decisions are the prerogative of the patient, family,
and healthcare 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 the date 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 your own 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 and all claims, causes of action, suits, proceedings, ordemands 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 excusive copyright and otherright, 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.

Health Link
Healthy living after treatment for childhood cancer

Page 4 of 4

Scoliosis & Kyphosis
Version 1.2 – 3/04

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 for childhood
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 ofappearing as a straight line when viewed from theback, 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?

Healthy living after treatment for childhood cancer

Health Link

Kyphosis is an abnormal rounding of the upper part ofthe back. When viewed from the side, it may appear
as if the person is slouching or has a “hump” on theback.

KYPHOSISSCOLIOSIS

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, are atincreased 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:- 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.

•

Orthovoltage type radiation (commonly used before 1970)•

A tumor in or near the spine•

A diagnosis of neurofibromatosis

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Scoliosis & Kyphosis
Version 1.2 – 3/04

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 thorax (including mantle, mediastinal, whole lung, wholeabdomen, or any upper abdominal field), especially in doses of 20 Gy(2000 cGy/rads) or higher•

Total body irradiation (TBI)•

Spinal radiation at a dose of 30 Gy (3000 cGy/rads) or higher•

Orthovoltage type radiation (commonly used before 1970)•

A tumor in or near the spine•

A diagnosis of neurofibromatosis

How 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 is usually“observation.” During this stage, the curve is closely monitored, especially during
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 brace worn under
the clothing). The goal of bracing is to halt progression or help correct the abnormal
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.
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®, pediatric nurse practitioner and clinicaldirector of the Survivorship Clinic at City of Hope National Medical Center in Duarte, CA.
Reviewed by Melissa Hudson MD, Debra Friedman MD, Smita Bhatia MD, MPH, and Louis S.
Constine, MD.
Illustrated by Devika Bhatia.

Health Link
Healthy living after treatment for childhood cancer

Page 2 of 3

Scoliosis & Kyphosis
Version 1.2 – 3/04

Note: Throughout this Health Links series, the term “childhood cancer” is used to designate pediatriccancers that may occur during childhood, adolescence, or young adulthood. Health Links are designed toprovide 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 ofChildhood, 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 madeavailable from by the Children’s Oncology Group relating to late effects 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 “Health
Link”, whether available in print or electronic format (including any digital format, e-mail transmission, or download fromthe 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 ortreatment 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 otherqualified health provider with any questions you may have regarding 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 yourindependent 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 in the 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 the date 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, atyour own 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 and all claims, causes of action, suits, proceedings, ordemands 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 excusive copyright and otherright, 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 andlegal documents and limiting dissemination or reproduction of Informational Content.

Health Link
Healthy living after treatment for childhood cancer

Page 3 of 3

Single Kidney
Version 1.2 – 3/04

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 forchildhood cancer sometimes requires removal of one kidney (nephrectomy). Although
you can live a healthy life with only one kidney, it is important that you take steps toprotect your remaining 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 bloodpressure check, blood tests for kidney function (BUN, creatinine), and aurinalysis.

•

If you have high blood pressure, or abnormal BUN, creatinine, or
urinalysis, you should have a blood test for electrolytes (blood salts andminerals) and a creatinine clearance test or GFR scan. The creatinine
clearance test is a timed urine collection. The GFR scan is a special x-ray thatmeasures kidney function using a small amount of radioactive material injected
through a vein. If any problems are detected, these tests should be
repeated periodically to monitor your kidney function.

•

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).

Healthy living after treatment for childhood cancer

Health Link

What can I do to keep my kidney healthy?
•

Drink plenty of water, especially when playing sports, while out in the sun,and during hot weather.

•Call your healthcare provider immediately if you have symptoms of aurinary 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 yourhealthcare 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 containaspirin, ibuprofen, acetaminophen or naproxen. These medications have been
known to cause kidney damage (analgesic nephropathy), especially whentaken in excessive doses or when two or more of these medications are
combined with caffeine or codeine and taken over long periods of time. If you
require long-term medications for management of pain, be sure to discuss thealternatives with your healthcare provider, and to choose medications that are
not harmful to your kidney.

•

Have a health checkup at least once a year that includes a blood pressure
measurement, a urine test for protein, and blood tests measuring kidney
function.

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Single Kidney
Version 1.2 – 3/04•

Some healthcare providers recommend that people with only one kidney
should avoid contact sports or use a kidney guard if participating in contact
sports. We urge you to discuss your kidney status with your healthcare
provider before making decisions about participation in sports andrecreational 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 touse common sense when bicycling (avoid racing and stunt riding), in order toprevent 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®, pediatric nurse practitioner and clinicaldirector of the Survivorship Clinic, Division of Pediatrics, City of Hope National Medical Center,
Duarte, California.
Reviewed by Smita Bhatia MD, MPH, Daniel Green MD, Rebecca L. Pentz PhD, Melissa
Hudson MD, Kevin Oeffinger MD, and Michael L. Ritchey MD.
Note: Throughout this Health Links series, the term “childhood cancer” is used to designate pediatriccancers that may occur during childhood, adolescence, or young adulthood. Health Links are designed toprovide health information for survivors of pediatric cancer, regardless of whether the cancer occurred
during childhood, adolescence, or young adulthood.

Health Link
Healthy living after treatment for childhood cancer

Page 2 of 3

Single Kidney
Version 1.2 – 3/04
Disclaimer and Notice of Proprietary Rights
Introduction to Late Effects Guidelines and Health Links: The “Long-Term Follow-Up Guidelines for Survivors ofChildhood, 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 madeavailable from by the Children’s Oncology Group relating to late effects of cancer treatment and care or containing thetitle "Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers" or the title“Health Link”, 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 otherqualified health provider with any questions you may have regarding 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 yourindependent 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 acourtesy, but not intended as a sole source of guidance in the evaluation of childhood cancer survivors. The
Children’s Oncology Group recognizes that specific patient care decisions are the prerogative of the patient, family,
and healthcare 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 the date 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 your own 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 and all claims, causes of action, suits, proceedings, ordemands 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 excusive copyright and otherright, 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.

Health Link
Healthy living after treatment for childhood cancer

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Skin Health
Version 1.2 – 3/04

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 body temperaturenormal and stores water, fat and vitamin D. Such an important organ requires care andmonitoring. 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). People at highest risk include those who received:− Radiation before reaching puberty− Radiation dose of 2 Gy (200 cGy/rads) or more during a single radiation
treatment (fraction)− Orthovoltage-type radiation (commonly used before 1970)•

Survivors who have chronic graft versus host disease following allogeneic(from a donor other than yourself) bone marrow or stem cell transplant

What problems can occur?

Healthy living after treatment for childhood cancer

Health Link

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 to as“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
Another effect of radiation to the skin is called fibrosis. This is caused by scarring of
the lining of blood vessels, resulting in a “woody” skin texture (fibrosis). 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 and avoidance 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 had a bone marrow or stem cell transplant from an allogeneic donor(someone other than themselves), and who have chronic graft versus host disease(GVHD), 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
the body, 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.
Vitiligo
Vitiligo is loss of pigment on patches of the skin. This can occur after allogeneic bonemarrow or stem cell transplant and may be due to graft versus host disease (GVHD)
or other autoimmune reactions seen after transplant.
In this situation, thePage 1 of 4
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white blood cells do not recognize certain normal skin cells (melanocytes) and sothey attack and destroy them. Melanoctyes are the cells in the body that control skincolor. Without melanocytes, the skin has a milky white appearance. Vitiligo usuallyoccurs only in patches. The therapy for vitiligo is treatment of the underlying GVHD
or autoimmune process. Even if this therapy is successful, the color may not returnto the skin because the damage to the melanocytes may be permanent. While all
skin should be protected from sun, skin that 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, 5flourouracil, hydroxyurea and methotrexate. The dark discoloration can occur on theskin or nails. There is no specific treatment for hyperpigmentation associated withcancer 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 anulcerated 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)

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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.

•

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 whenswimming or perspiring heavily. This will not only help to protect you fromdeveloping skin problems, but will also help you to maintain a youthfulappearance.

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®, Coordinator, Long Term Follow-up Program, Johns
Hopkins University, Baltimore, MD.
Reviewed by Julie Blatt MD, Louis S. Constine MD, Rebecca D. Pentz PhD, and DebraFriedman MD.
Note: Throughout this Health Links series, the term “childhood cancer” is used to designate pediatriccancers that may occur during childhood, adolescence, or young adulthood. Health Links are designed toprovide health information for survivors of pediatric cancer, regardless of whether the cancer occurred
during childhood, adolescence, or young adulthood.

Health Link
Healthy living after treatment for childhood cancer

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Skin Health
Version 1.2 – 3/04
Disclaimer and Notice of Proprietary Rights
Introduction to Late Effects Guidelines and Health Links: The “Long-Term Follow-Up Guidelines for Survivors ofChildhood, 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 madeavailable from by the Children’s Oncology Group relating to late effects of cancer treatment and care or containing thetitle "Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers" or the title“Health Link”, 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 otherqualified health provider with any questions you may have regarding 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 yourindependent 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 acourtesy, but not intended as a sole source of guidance in the evaluation of childhood cancer survivors. The
Children’s Oncology Group recognizes that specific patient care decisions are the prerogative of the patient, family,
and healthcare 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 the date 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 your own 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 and all claims, causes of action, suits, proceedings, ordemands 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 excusive copyright and otherright, 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.

Health Link
Healthy living after treatment for childhood cancer

Page 4 of 4

Splenic Precautions
Version 1.2 – 3/04

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 bodyto fight infections.
What are the risks of a non-functioning spleen?
Because your spleen was removed or you received a high dose ofradiation to the spleen (30 Gy - 3000 cGy/rads or higher) during
your cancer treatment, you are more likely than other people todevelop serious infections. These infections can be fatal if nottreated immediately. The types of infections most likely to occur inpeople without a functioning spleen are those caused byencapsulated bacteria (germs with an outer coating that protect
them from the body’s immune system). Some common types of
encapsulated bacteria include Streptococcus pneumoniae,
Haemophilus influenzae, and Neisseria meningitidis.

SpleenHealthy living after treatment for childhood cancer

Health Link

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 cause of afever 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 ofinfection 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.
What should I do if I get a fever?
If your temperature is 101°F (38.3°C) 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 the
blood culture results are available.
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Splenic Precautions
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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 at least one booster ofPneumococcal vaccine, given 3 to 5 years after the first shot. Some healthcare
providers recommend additional boosters.
Many healthcare providers also
recommend yearly influenza (flu) vaccine, in order to reduce the risk of bacterial
infections that can sometimes occur as a complication of the flu. It’s also important toknow 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 aprescription 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 evena 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 otherprotective measures, such as netting and protective clothing.
Dog Bites: Dog bites can result in serious bacterial infections. If you receive a dog
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 mostcommonly 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.

Health Link
Healthy living after treatment for childhood cancer

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Splenic Precautions
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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.
Written by Teresa Sweeney, RN, MSN, CPNP, Pediatric Nurse Practitioner in the After
Completion of Therapy (ACT) Clinic at St. Jude Children’s Research Hospital in Memphis,
Tennessee.
Reviewed by Smita Bhatia, MD, MPH, Julie Blatt, MD, Melissa Hudson MD, Kevin Oeffinger, MD,
Lise Yasui, Wendy Landier, CPNP, and the COG Late Effects Committee.
Illustrated by Devika Bhatia.
Note: Throughout this Health Links series, the term “childhood cancer” is used to designate pediatriccancers that may occur during childhood, adolescence, or young adulthood. Health Links are designed toprovide health information for survivors of pediatric cancer, regardless of whether the cancer occurred
during childhood, adolescence, or young adulthood.

Wallet Card for Patients Without a Functioning Spleen

MEDICAL ALERT:
Asplenic Patient
Name: _______________________________
Primary Physician: _____________________
Physician Phone: ______________________(See other side for suggested management)
Medical Alert: Asplenic PatientThis patient is asplenic and at risk for potentially fatal, overwhelming
infections. Immediate medical attention is required for fever of >101°F(38.3°C) 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 >104°F; meningitis, pneumonia, or other serious
focus of infection; signs of septic shock; or previous history ofserious infection.

Health Link
Healthy living after treatment for childhood cancer

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Splenic Precautions
Version 1.2 – 3/04
Disclaimer and Notice of Proprietary Rights
Introduction to Late Effects Guidelines and Health Links: The “Long-Term Follow-Up Guidelines for Survivors ofChildhood, 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 madeavailable from by the Children’s Oncology Group relating to late effects 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 “Health
Link”, whether available in print or electronic format (including any digital format, e-mail transmission, or download fromthe 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 ortreatment 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 otherqualified health provider with any questions you may have regarding 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 yourindependent 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 in the 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 the date 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, atyour own 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 and all claims, causes of action, suits, proceedings, ordemands 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 excusive copyright and otherright, 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 andlegal documents and limiting dissemination or reproduction of Informational Content.

Health Link
Healthy living after treatment for childhood cancer

Page 4 of 4

Thyroid Problems
Version 1.2 – 3/04

Thyroid Problems After Childhood Cancer
Some treatments given for childhood cancer may affect the thyroid gland. These effects
are usually very easy to treat. Regular check-ups may help find thyroid problems earlyso that the proper treatment can be started.
What is the thyroid gland?
The thyroid gland is located in the lower part of the neck in front of
the windpipe. The gland makes two hormones, thyroxine (T4) andtriiodothyronine (T3), that play an important role in growth andmental development, and help to regulate the body’s metabolism.
The thyroid gland is controlled by the pituitary, a gland in the brain
which makes thyroid stimulating hormone (TSH). TSH is released
from the 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.

Thyroid
gland

Healthy living after treatment for childhood cancer

Health Link

The possible late effects
Damage to the thyroid gland after childhood cancer is usually the result of radiation to
the brain or neck. This damage may not show up for years after treatment. 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) or malignant (cancer).
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 the thyroid gland.
Blood tests in people with primary hypothyroidism show a high TSH because thepituitary 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 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 enough 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. Thismay 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.

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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 skinBrittle hairMuscle and joint aches
Slowing of the heart rate
Low blood pressure
High cholesterol level
Poor exercise tolerance

Hyperthyroidism occurs when the thyroid gland is too active. In this condition thyroid
hormone levels are high and the body’s metabolism speeds up.
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 theneck. Most thyroid growths do not usually cause any symptoms.

Health Link
Healthy living after treatment for childhood cancer

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Thyroid Problems
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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, hyperthyroidism, thyroid
nodules, and/or thyroid cancer. The following radiation fields have the potential to affectthe thyroid gland directly:
•
•
•
•
•
•
•

Neck (cervical or mantle)
Head/brain (cranial)
Head/brain/spine (craniospinal)
Spine
Nose, mouth, and/or throat (nasopharyngeal, oropharyngeal)
Chest (mediastinal, whole lung)
Total body irradiation (TBI)

People who received radiation that may have affected the pituitary gland in the brain are
at risk for central hypothyroidism. The following radiation fields have the potential toaffect the pituitary gland:
•
•
•
•
•
•

Head/brain (cranial)
Head/brain/spine (craniospinal)
Eye/orbit
Ear/infratemporal region (midfacial area behind the cheekbones)
Nose, mouth, and/or throat (nasopharyngeal, oropharyngeal)
Total body irradiation (TBI)

Other factors that have been shown to increase the risk of thyroid problems afterchildhood cancer include being:•••

FemaleTreated 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 check-up
is recommended for survivors who are at risk of developing thyroid problems. This
check-up should include evaluation of growth in children and teens, palpation (feeling) of
the thyroid gland, and a blood test to measure the levels of TSH and T4. During periodsof rapid 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.

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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.
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 thehormone-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 with adaily thyroid pill.
Thyroid nodules. Thyroid growths that are felt on physical exam need additional
testing. This is generally done with an ultrasound (picture made using sound waves) andbiopsy (sampling the thyroid tissue to check for cancer cells). Surgery may be done toremove 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 Hudson MD and Wendy Landier CPNP.
Melissa Hudson, MD directs the After Completion of therapy (ACT) clinic at St. Jude Children’s
Research Hospital in Memphis, TN.
Wendy Landier, RN, MSN, CPNP, CPON®, is a pediatric nurse practitioner and clinical director of
the Survivorship Clinic at City of Hope National Medical Center in Duarte, CA
Reviewed by Charles Sklar MD, Debra L. Friedman MD, Julie Blatt MD, and Joan Darling PhD.
Illustrated by Devika Bhatia.
Note: Throughout this Health Links series, the term “childhood cancer” is used to designate pediatriccancers that may occur during childhood, adolescence, or young adulthood. Health Links are designed toprovide health information for survivors of pediatric cancer, regardless of whether the cancer occurred
during childhood, adolescence, or young adulthood.

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Disclaimer and Notice of Proprietary Rights
Introduction to Late Effects Guidelines and Health Links: The “Long-Term Follow-Up Guidelines for Survivors ofChildhood, 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 madeavailable from by the Children’s Oncology Group relating to late effects 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 “Health
Link”, whether available in print or electronic format (including any digital format, e-mail transmission, or download fromthe 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 ortreatment 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 otherqualified health provider with any questions you may have regarding 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
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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 in the evaluation of childhood cancer survivors. The Children’s
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