Childhood Cancer Survivor
Long-Term Follow-Up Guidelines
Version 1.1 - September 2003

Appendix
Health Links
Healthy living after treatment for childhood cancer

Childhood Cancer Survivor
Long-Term Follow-Up Guidelines
Version 1.1 – September 2003

APPENDIX
Patient Education Materials – “Health Links”
Health Link
Avascular Necrosis
Bleomycin Alert
Bone Health
Breast Cancer after Treatment for Childhood Cancer
Central Adrenal Insufficiency
Dental Health
Emotional Issues after Childhood Cancer
Eye Problems after 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
The Heart and Anthracyclines
The Heart and Radiation
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
School and Learning Issues after Childhood Cancer
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
7, 27, 51
4, 45, 74, 75
240
14, 46, 65
11, 5222
65
70, 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
15, 20, 36, 91
60, 61
90
32, 34, 102, 111
67, 9542, 53, 54, 55, 56

Avascular Necrosis
Version 1.1- 9/03

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.

Healthy living after treatment for childhood cancer

Health Link

What causes AVN?
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 the risk of AVN in people who received corticosteroid therapy include
treatment with high doses of radiation to weight bearing bones, treatment withorthovoltage radiation (commonly used before 1970), being older than 10 at the time oftreatment, and having sickle cell disease. AVN is most likely to occur during cancer
treatment, but it can sometimes 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 1.1- 9/03

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

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Avascular Necrosis
Version 1.1- 9/03

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

Page 3 of 4

Avascular Necrosis
Version 1.1- 9/03

Disclaimer: This document referred to as Health Link, entitled, “Health Link, Healthy living after treatment
for childhood cancer”, and information contained within this Health Link document, whether available inprint format (such as a brochure) or electronic format (such as a document posted on a website) (with such
document and information hereinafter known as the “Site”) does NOT provide medical advice. This Site(including text and related graphics) is for informational purposes only. Such information is not intended foruse in the diagnosis, medical treatment, or care of any person; nor is this information intended to substitutefor professional medical advice, diagnosis or treatment. Always seek the advice of your physician or otherqualified health provider with any questions you may have regarding a medical condition and do not rely on
this Site. No endorsement of any specific tests, products, or procedures is made by the Children’s
Oncology Group, by any contributor to the Site, or by any Children’s Oncology Group affiliated party andreliance on the information contained within this Site is at your own risk. While the Children’s Oncology
Group has made every attempt to assure that the content of this Site is accurate and complete as of thedate of publication, no warranty or representation, express or implied, is made as to the validity or
sufficiency of the information contained herein. No liability is assumed by the Children’s Oncology Group or
any affiliated party thereof. You acknowledge that the Children’s Oncology Group and any contributors to
the Site are not engaged in the practice of medicine and that all decisions made using the medical
information provided at this site shall be your sole and exclusive responsibility. You agree, at yourexpense, to indemnify, defend and hold the Children’s Oncology Group, its officers, directors, employees,
agents, members, affiliated organizations and contributors to this Site (collectively the “Indemnified Parties”)
harmless from any and all losses, liabilities, or damages (including attorneys' fees and costs) resulting fromany and all claims, causes of action, suits, proceedings, or demands against the Indemnified Parties related
to reliance on this Site for information or based on related medical care, treatment and decisions or
recommendations made using the information available on this Site. Information and content contained inthis Site is subject to protection under copyright as noted below and to other intellectual property protectionin the United States and worldwide. The Children’s Oncology Group retains excusive right, title, andinterest to the copyright and related intellectual property contained on this Site.

Health Link
Healthy living after treatment for childhood cancer

Page 4 of 4

Bleomycin Alert
Version 1.1 – 9/03

BLEOMYCIN ALERTThe 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)

Healthy living after treatment for childhood cancer

Health Link

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 lunginfections, such as pneumonia. Interstitial pneumonitis that occurs as a result of
therapy with bleomycin sometimes develops after exposure to toxic fumes, tobacco,or high levels of oxygen given over several hours.
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 andcan no longer provide oxygen to the body. People who received bleomycin in thepast may be at risk for developing ARDS, usually as a result of a combination of highlevels of oxygen and large amounts of intravenous fluid given during surgery.
However, the risk of developing ARDS is very low. If you need a medical procedurerequiring oxygen or general anesthesia, be sure to tell your surgeon,
anesthesiologist, and other healthcare providers that you have received bleomycin in
the past for treatment of childhood cancer.
What are factors that increase the risk of developing lung problems after
treatment with bleomycin?
•
High total doses of bleomycin (400 units/m2 or more in all doses combined)• Radiation to the chest or lungs, or total body irradiation (TBI)• Treatment with other chemotherapy drugs that can also damage the lungs(see related Health Link: “Pulmonary Health”)

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Bleomycin Alert
Version 1.1 – 9/03••

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 thesetests done at least once (at least 2 years after completing cancer treatment) tofind out 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 pressuresand high 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.

Health Link
Healthy living after treatment for childhood cancer

Page 2 of 3

Bleomycin Alert
Version 1.1 – 9/03

Disclaimer: This document referred to as Health Link, entitled, “Health Link, Healthy living after treatment
for childhood cancer”, and information contained within this Health Link document, whether available inprint format (such as a brochure) or electronic format (such as a document posted on a website) (with such
document and information hereinafter known as the “Site”) does NOT provide medical advice. This Site(including text and related graphics) is for informational purposes only. Such information is not intended foruse in the diagnosis, medical treatment, or care of any person; nor is this information intended to substitutefor professional medical advice, diagnosis or treatment. Always seek the advice of your physician or otherqualified health provider with any questions you may have regarding a medical condition and do not rely on
this Site. No endorsement of any specific tests, products, or procedures is made by the Children’s
Oncology Group, by any contributor to the Site, or by any Children’s Oncology Group affiliated party andreliance on the information contained within this Site is at your own risk. While the Children’s Oncology
Group has made every attempt to assure that the content of this Site is accurate and complete as of thedate of publication, no warranty or representation, express or implied, is made as to the validity or
sufficiency of the information contained herein. No liability is assumed by the Children’s Oncology Group or
any affiliated party thereof. You acknowledge that the Children’s Oncology Group and any contributors to
the Site are not engaged in the practice of medicine and that all decisions made using the medical
information provided at this site shall be your sole and exclusive responsibility. You agree, at yourexpense, to indemnify, defend and hold the Children’s Oncology Group, its officers, directors, employees,
agents, members, affiliated organizations and contributors to this Site (collectively the “Indemnified Parties”)
harmless from any and all losses, liabilities, or damages (including attorneys' fees and costs) resulting fromany and all claims, causes of action, suits, proceedings, or demands against the Indemnified Parties related
to reliance on this Site for information or based on related medical care, treatment and decisions or
recommendations made using the information available on this Site. Information and content contained inthis Site is subject to protection under copyright as noted below and to other intellectual property protectionin the United States and worldwide. The Children’s Oncology Group retains excusive right, title, andinterest to the copyright and related intellectual property contained on this Site.

Health Link
Healthy living after treatment for childhood cancer

Page 3 of 3

Bone Health
Version 1.1- 9/03

Bone Health After Childhood Cancer
Strong bones are the foundation of a healthy body. They support our muscles andprotect our internal organs. Treatment for childhood cancer sometimes damages thebones, causing an increased risk for developing osteoporosis (weak bones).
Fortunately, there are several things you can do to strengthen your bones and avoid or
minimize this problem.
Bone Mass (Strength) and Osteoporosis
Bones are made of calcium and other minerals. Throughout life, new bone tissue iscontinually being formed and old bone tissue is being removed, so calcium is always
needed. During childhood and into young adulthood, bone formation usually occurs
faster than bone loss, causing bones to grow and become heavier (more dense). In
fact, nearly half of the bone in an adult’s body is formed during the teen years. The
average person reaches their peak bone density (bone strength) in the young adultyears, usually between the ages of 25 and 30. As a person gets older, the process ofbone removal gradually overtakes bone formation, and bones slowly lose strength aspart of the normal aging process.

Healthy living after treatment for childhood cancer

Health Link

Osteoporosis: A Silent Disease
When not enough new bone tissue is formed, or when too much bone tissue isremoved, the bones can become weak (brittle) and less dense (thin). If this happens,there is a much higher risk for breaking a bone of the hip, wrist, ribs, or other bones,
from a simple fall. Also, the bones of the spine can collapse, which makes the person
shorter and can lead to a curvature of the spine. This often causes many problems,
including chronic pain. Weakening of the bones is called osteoporosis (osteo = bone;
porosis = porous). Osteoporosis is sometimes called a “silent bone disease” because
people often don’t know that their bones have weakened until they break one or haveback pain.
Risk Factors for Osteoporosis
There are certain factors that you cannot change that may affect your chances ofdeveloping osteoporosis. Genes are important—if you have someone in your family withosteoporosis, you are more likely to develop it. Women, especially those who havegone through menopause, are more likely to have this disease than men. People who
are Caucasian or Asian, or people who are short or have small, thin frames, are also
more likely to have osteoporosis. And the chances of developing osteoporosis increase
for all people as they get older.
There are several things that can lead to osteoporosis at a young age. Smoking, a diet
low in calcium, and lack of weight-bearing exercise can all increase the risk ofosteoporosis. Consuming too much caffeine, drinking a lot of alcohol or carbonatedbeverages, and eating too much salt may also increase the risk.

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Bone Health
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Certain medications, when taken on a regular basis, can also increase the risk ofosteoporosis. These include:
•
•
•
•
•
•
•

Glucocorticoids (steroids such as prednisone and dexamethasone)High doses of thyroid hormone
Certain anticonvulsants (phenytoin and barbiturates)
Aluminum-containing antacids (such as Maalox or Amphogel)
Gonadotropin-releasing hormone agonists (used for treatment of early puberty
and endometriosis)
High doses of heparin (used to prevent blood clots)
Cholestyramine (used to control blood cholesterol)

Many of these medications are essential treatments for certain medical conditions. If
you are taking any of these medications, do not change your dosage or stop taking your
medication without consulting with your healthcare provider.
Childhood Cancer Survivors and Their Bones
Some survivors of childhood cancer have an increased chance of getting osteoporosis.
We know that treatment can affect the bones in two different ways. First, because ofcancer treatment during childhood or adolescence, the survivor may never reach anormal peak bone density during the young adult years. This is shown in the figure
below (Example 1), illustrating what happens to bone mineral density (bone strength)with aging. Note that in the average person, after reaching peak strength in young
adulthood, the bone density gradually decreases with age. But the survivor may neverreach normal peak bone density, and as a result, may develop osteoporosis at a
younger age.
Another way that cancer treatment can affect the chances of getting osteoporosis is bycausing the loss of bone at a faster rate than normal, as shown in the next figure(Example 2).
Some survivors may have both problems—a lower peak bone density and a faster rateof bone loss, which may lead to osteoporosis at a much younger age.

Lower Peak Bone Density

20

30

40

50
60
Age (years)

Average Person

Bone Mineral Density

Bone Mineral Density

Average Person

70

80

Example 1: Lower Peak Bone Density

Increased Rate of Calcium Loss

20

30

40

50
60
Age (years)

70

80

Example 2: Increased Rate of Calcium Loss

Health Link
Healthy living after treatment for childhood cancer

Page 2 of 6

Bone Health
Version 1.1- 9/03

Osteoporosis and Childhood Cancer Treatment
Survivors who received cancer treatment that included any of the following may be atincreased risk for osteoporosis:•

Methotrexate.

•

Steroids (glucocorticoids), such as prednisone and dexamethasone.

•

Stem cell or bone marrow transplant, especially with associated chronic graftversus-host disease.

•

Treatments for premature (early) puberty (such as gonadotropin-releasing
hormone agonists).

•

Treatments that result in ovarian or testicular failure, such as radiation therapy
to the brain, radiation therapy to the testicles or ovaries, surgical removal of thetesticles or ovaries, or high doses of alkylating chemotherapy(cyclophosphamide, ifosfamide, nitrogen mustard, melphalan, busulfan, BCNU,
CCNU, and procarbazine).

•

Treatments, such as radiation therapy to the brain, that result in growth
hormone deficiency.

•

Treatments, such as radiation therapy to the brain, neck, or chest that result inhigh levels of thyroid hormone (hyperthyroidism).

•

Treatments that result in premature (early) menopause.

•

Radiation to the bones.

•

Prolonged periods of inactivity (bed rest).

What Lowers the Risk of Osteoporosis?
Fortunately, there are many things you can do to reduce the risk of osteoporosis. If you
could pick the one thing that would have the greatest impact on your life and lower yourrisk for a number of late effects and common adult health problems, it would be to makea lifetime habit of being physically active. Regular weight-bearing exercise helps todevelop and maintain healthy bones. Bicycling and swimming are excellent exercisesfor general fitness, but these are NOT weight-bearing exercises, and they do not help tobuild strong bones. Exercises that are especially good for bone health include higherimpact weight-bearing activities, such as hopping, jogging and jumping rope.
Resistance exercises, such as light weight lifting, also help to build strong bones andare especially important for bones of the upper body, including the arms and shoulders.
Suggestions for exercise:•

Brisk walking, dancing, jazzercise and jogging are all excellent forms of
exercise.

•If you are not active, begin slowly and build up each week.

•

Exercise for short periods several times a day.

•

Alternate the types of exercise to keep it fun.

•Find other ways to increase your activity level: Use the stairs rather than theelevator; When weather permits, park a few blocks from your destination andwalk; Mow your own lawn; Take an exercise break at work or between classes.

Health Link
Healthy living after treatment for childhood cancer

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Bone Health
Version 1.1- 9/03

Some people are limited to certain types of activity because of surgeries or othertreatments for their cancer, including those that can affect the heart. In addition, people
who have bone or joint problems may be limited from participating in certain types of
exercise. Before starting any new exercise program, be sure to discuss yourindividual health status and cancer treatment history with your healthcare
provider.
Most people do not have an adequate amount of calcium in their diet. The National
Osteoporosis Foundation recommends that all adults have a daily dietary intake of 1000
to 1200 mg of calcium each day. Some healthcare providers recommend that survivorsof childhood cancer get 1500 mg a day. The main sources of calcium in the diet are
dairy products (milk, yogurt, cheese) and green, leafy vegetables.
Food
Milk
YogurtCheeseBroccoli
Pinto beans

Calcium in Foods
Serving Size
8 ounces
8 ounces
1 ounce
½ cup
½ cup

Calcium
300 mg
400 mg
200 mg
47 mg
40 mg

If your diet is low in calcium and you are unable to consume 1200 to 1500 mg per day,then a calcium supplement pill is recommended. A wide variety of calcium supplements
are available at the grocery or health food store.
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 can beharmful, so it’s best to check with your healthcare provider before taking any vitamin D
supplements.
Other important things that you can do to lower the risk for osteoporosis:•

Don’t smoke, dip, or chew tobacco products (if you do now, quit!)•

Don’t drink more than one alcoholic beverage per day (for example, 12 ouncesof beer, 5 ounces of wine or 1.5 ounces of 80-proof distilled spirits)•

Avoid excessive intake of caffeinated products (such as coffee, cola, or tea)•

Avoid excessive consumption of carbonated soft drinks

What Follow-Up is Needed for Those at Risk?
Peak bone mass can be measured by a number of different methods. Dual energy x-ray
absorptiometry (DEXA) is the most widely used technique. From this special x-ray of
two or three sites (hip, wrist, low back), the bone density can be calculated. DEXA has a
low radiation dose and is fairly precise and accurate. The bone mineral density isreported as a “T-score,” which is a comparison to the peak bone mass of young adults
in the general population. Osteopenia (low bone mass) is a T-score between –1.0 and

Health Link
Healthy living after treatment for childhood cancer

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Bone Health
Version 1.1- 9/03

-2.5 SD (standard deviations—a unit of variation), while osteoporosis is defined as a Tscore of –2.5 SD or more.
A single test, such as a DEXA, evaluates bone mass only at one point in time andtherefore does not tell you how rapidly bone loss is occurring. A follow-up DEXA,
generally one or two years later, can show how the bone density is changing over time.
After reviewing your treatment history and risk factors, your healthcare provider canadvise you regarding the need for bone density testing. Generally, a baseline test isdone at age 18, but this can be done at an earlier age if needed, and the timing of thetest is based on evaluation of each individual patient.
People who have osteopenia or osteoporosis should discuss treatment options with
their healthcare provider. Medications, such as bisphosphonates and calcitonin, areavailable specifically for the treatment of low bone density. In addition, if you have lowlevels of male or female hormones, or low levels of growth hormone, you may also
benefit from hormone replacement therapy.

Adapted by Wendy Landier, CPNP, March 2003, from: “Bone Health After Childhood Cancer” by
Nancy Keene and Kevin Oeffinger MD, Candlelighters Quarterly, Spring 2002, with permission
from Candlelighters Childhood Cancer Foundation (phone: 800-366-2223, internet:
www.candlelighters.org), and “Strong Bones: A Foundation for Life”, St. Jude Children’s
Research Hospital, After Completion of Therapy (ACT) Clinic, with permission.
Nancy Keene is co-author of Childhood Cancer Survivors: A Practical Guide to Your Future(O’Reilly & Associates, Sebastopol, CA, 2000)
Kevin Oeffinger, MD directs the After the Cancer Experience Young Adult Program for childhood
cancer survivors and is a Professor at the University of Texas Southwestern Medical Center in
Dallas, TX
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 assistant directorof the Survivorship Clinic at City of Hope National Medical Center in Duarte, CA
Reviewed by Charles Sklar MD, Melissa Hudson MD, and Smita Bhatia MD, MPH.

Health Link
Healthy living after treatment for childhood cancer

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Bone Health
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Disclaimer: This document referred to as Health Link, entitled, “Health Link, Healthy living after treatment
for childhood cancer”, and information contained within this Health Link document, whether available inprint format (such as a brochure) or electronic format (such as a document posted on a website) (with such
document and information hereinafter known as the “Site”) does NOT provide medical advice. This Site(including text and related graphics) is for informational purposes only. Such information is not intended foruse in the diagnosis, medical treatment, or care of any person; nor is this information intended to substitutefor professional medical advice, diagnosis or treatment. Always seek the advice of your physician or otherqualified health provider with any questions you may have regarding a medical condition and do not rely on
this Site. No endorsement of any specific tests, products, or procedures is made by the Children’s
Oncology Group, by any contributor to the Site, or by any Children’s Oncology Group affiliated party andreliance on the information contained within this Site is at your own risk. While the Children’s Oncology
Group has made every attempt to assure that the content of this Site is accurate and complete as of thedate of publication, no warranty or representation, express or implied, is made as to the validity or
sufficiency of the information contained herein. No liability is assumed by the Children’s Oncology Group or
any affiliated party thereof. You acknowledge that the Children’s Oncology Group and any contributors to
the Site are not engaged in the practice of medicine and that all decisions made using the medical
information provided at this site shall be your sole and exclusive responsibility. You agree, at yourexpense, to indemnify, defend and hold the Children’s Oncology Group, its officers, directors, employees,
agents, members, affiliated organizations and contributors to this Site (collectively the “Indemnified Parties”)
harmless from any and all losses, liabilities, or damages (including attorneys' fees and costs) resulting fromany and all claims, causes of action, suits, proceedings, or demands against the Indemnified Parties related
to reliance on this Site for information or based on related medical care, treatment and decisions or
recommendations made using the information available on this Site. Information and content contained inthis Site is subject to protection under copyright as noted below and to other intellectual property protectionin the United States and worldwide. The Children’s Oncology Group retains excusive right, title, andinterest to the copyright and related intellectual property contained on this Site.

Health Link
Healthy living after treatment for childhood cancer

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Breast Cancer
Version 1.1 – 9/03

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.

Healthy living after treatment for childhood cancer

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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.
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 assistant 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.

Health Link
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Breast Cancer
Version 1.1 – 9/03

Disclaimer: This document referred to as Health Link, entitled, “Health Link, Healthy living after treatment
for childhood cancer”, and information contained within this Health Link document, whether available in print
format (such as a brochure) or electronic format (such as a document posted on a website) (with such
document and information hereinafter known as the “Site”) does NOT provide medical advice. This Site(including text and related graphics) is for informational purposes only. Such information is not intended foruse in the diagnosis, medical treatment, or care of any person; nor is this information intended to substitutefor professional medical advice, diagnosis or treatment. Always seek the advice of your physician or otherqualified health provider with any questions you may have regarding a medical condition and do not rely on
this Site. No endorsement of any specific tests, products, or procedures is made by the Children’s Oncology
Group, by any contributor to the Site, or by any Children’s Oncology Group affiliated party and reliance on
the information contained within this Site is at your own risk. While the Children’s Oncology Group has
made every attempt to assure that the content of this Site is accurate and complete as of the date of
publication, no warranty or representation, express or implied, is made as to the validity or sufficiency of theinformation contained herein. No liability is assumed by the Children’s Oncology Group or any affiliatedparty thereof. You acknowledge that the Children’s Oncology Group and any contributors to the Site are notengaged in the practice of medicine and that all decisions made using the medical information provided at
this site shall be your sole and exclusive responsibility. You agree, at your expense, to indemnify, defend
and hold the Children’s Oncology Group, its officers, directors, employees, agents, members, affiliatedorganizations and contributors to this Site (collectively the “Indemnified Parties”) harmless from any and all
losses, liabilities, or damages (including attorneys' fees and costs) resulting from any and all claims, causesof action, suits, proceedings, or demands against the Indemnified Parties related to reliance on this Site for
information or based on related medical care, treatment and decisions or recommendations made using theinformation available on this Site. Information and content contained in this Site is subject to protection
under copyright as noted below and to other intellectual property protection in the United States andworldwide. The Children’s Oncology Group retains excusive right, title, and interest to the copyright andrelated intellectual property contained on this Site.

Health Link
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Central Adrenal Insufficiency
Version 1.1- 9/03

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)
that work 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.

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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 assistant directorof 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.

Disclaimer: This document referred to as Health Link, entitled, “Health Link, Healthy living after treatment
for childhood cancer”, and information contained within this Health Link document, whether available inprint format (such as a brochure) or electronic format (such as a document posted on a website) (with such
document and information hereinafter known as the “Site”) does NOT provide medical advice. This Site(including text and related graphics) is for informational purposes only. Such information is not intended foruse in the diagnosis, medical treatment, or care of any person; nor is this information intended to substitutefor professional medical advice, diagnosis or treatment. Always seek the advice of your physician or otherqualified health provider with any questions you may have regarding a medical condition and do not rely on
this Site. No endorsement of any specific tests, products, or procedures is made by the Children’s
Oncology Group, by any contributor to the Site, or by any Children’s Oncology Group affiliated party andreliance on the information contained within this Site is at your own risk. While the Children’s Oncology
Group has made every attempt to assure that the content of this Site is accurate and complete as of thedate of publication, no warranty or representation, express or implied, is made as to the validity or
sufficiency of the information contained herein. No liability is assumed by the Children’s Oncology Group or
any affiliated party thereof. You acknowledge that the Children’s Oncology Group and any contributors to
the Site are not engaged in the practice of medicine and that all decisions made using the medical
information provided at this site shall be your sole and exclusive responsibility. You agree, at yourexpense, to indemnify, defend and hold the Children’s Oncology Group, its officers, directors, employees,
agents, members, affiliated organizations and contributors to this Site (collectively the “Indemnified Parties”)
harmless from any and all losses, liabilities, or damages (including attorneys' fees and costs) resulting fromany and all claims, causes of action, suits, proceedings, or demands against the Indemnified Parties related
to reliance on this Site for information or based on related medical care, treatment and decisions or
recommendations made using the information available on this Site. Information and content contained inthis Site is subject to protection under copyright as noted below and to other intellectual property protectionin the United States and worldwide. The Children’s Oncology Group retains excusive right, title, andinterest to the copyright and related intellectual property contained on this Site.

Health Link
Healthy living after treatment for childhood cancer

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Dental Health
Version 1.1- 9/03

Dental Health Following Childhood Cancer Treatment
Treatment for cancer during childhood often increases the risk for dental problems. Asa childhood cancer survivor, it is important for you to understand the reasons why
dental care is especially important for maintaining your health.
What are the risk factors for dental problems after childhood cancer treatment?
•

Treatment with chemotherapy before your permanent teeth were fully formed,
especially if you were younger than 5 years old at the time of your treatment.

•

Radiation that included the mouth and/or salivary glands, 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)

Healthy living after treatment for childhood cancer

Health Link

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
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
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Dental Health
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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.
This bone can dissolve away slowly, causing the teeth to become loose. This conditionis called 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
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 andother sweets. Your dentist may recommend application of a fluoride gel to your teeth atleast once a day. The fluoride acts on the enamel of your teeth to make it more resistantto decay. Ask your dentist about whether you should use daily fluoride.

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Healthy living after treatment for childhood cancer

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Dental Health
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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 “Radiation and the Heart”).
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
your dentist immediately:•

A sore that does not heal or that bleeds easily•

A change in the color of your mouth tissues•

A lump, thickening or rough spot in the mouth•

Pain, tenderness or numbness anywhere in the mouth or on the lips

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

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

•

Have a panorex x-ray done before dental/orthodontic procedures 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.

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Dental Health
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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
plaque between 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 (checkwith your healthcare provider to see if you should drink alcohol at all, sincealcohol may increase other problems following childhood cancer treatment).

•

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

For more information about dental health issues following childhood cancer treatment:•

American Dental Association website (click on “Oral Health Topics”)
www.ada.org•

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

Adapted by Debbie Lafond, MS, RNCS, PNP, CPON®, 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,Louis S. Constine MD, and Smita Bhatia MD, MPH.

Health Link
Healthy living after treatment for childhood cancer

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Dental Health
Version 1.1- 9/03

Disclaimer: This document referred to as Health Link, entitled, “Health Link, Healthy living after treatment
for childhood cancer”, and information contained within this Health Link document, whether available inprint format (such as a brochure) or electronic format (such as a document posted on a website) (with such
document and information hereinafter known as the “Site”) does NOT provide medical advice. This Site(including text and related graphics) is for informational purposes only. Such information is not intended foruse in the diagnosis, medical treatment, or care of any person; nor is this information intended to substitutefor professional medical advice, diagnosis or treatment. Always seek the advice of your physician or otherqualified health provider with any questions you may have regarding a medical condition and do not rely on
this Site. No endorsement of any specific tests, products, or procedures is made by the Children’s
Oncology Group, by any contributor to the Site, or by any Children’s Oncology Group affiliated party andreliance on the information contained within this Site is at your own risk. While the Children’s Oncology
Group has made every attempt to assure that the content of this Site is accurate and complete as of thedate of publication, no warranty or representation, express or implied, is made as to the validity or
sufficiency of the information contained herein. No liability is assumed by the Children’s Oncology Group or
any affiliated party thereof. You acknowledge that the Children’s Oncology Group and any contributors to
the Site are not engaged in the practice of medicine and that all decisions made using the medical
information provided at this site shall be your sole and exclusive responsibility. You agree, at yourexpense, to indemnify, defend and hold the Children’s Oncology Group, its officers, directors, employees,
agents, members, affiliated organizations and contributors to this Site (collectively the “Indemnified Parties”)
harmless from any and all losses, liabilities, or damages (including attorneys' fees and costs) resulting fromany and all claims, causes of action, suits, proceedings, or demands against the Indemnified Parties related
to reliance on this Site for information or based on related medical care, treatment and decisions or
recommendations made using the information available on this Site. Information and content contained inthis Site is subject to protection under copyright as noted below and to other intellectual property protectionin the United States and worldwide. The Children’s Oncology Group retains excusive right, title, andinterest to the copyright and related intellectual property contained on this Site.

Health Link
Healthy living after treatment for childhood cancer

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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 theirfamily’s world revolves around their sibling with cancer. Patients and families handle
the stress of the cancer experience in different ways, and periods of anxiety or
depression are common.

Healthy living after treatment for childhood cancer

Health Link

After the Cancer Experience
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 theircancer. Anniversaries of important dates, such as the diagnosis date, can bring on avariety of emotions, including happiness, relief, sadness, painful memories or a
combination of these feelings. There may be feelings of grief or loss of the normalcy ofchildhood. “Survivor guilt” may exist if friends undergoing treatment died. Survivors,
especially teenagers, may feel “invincible” and believe that since they survived cancer,
they can survive 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
effects of cancer treatment. Sometimes physical problems and emotional stress maylead to anxiety and/or depression that require medical attention. Survivors may also
experience periods of intense anxiety triggered by upsetting memories related totreatment, referred to as “posttraumatic stress”. Posttraumatic stress symptoms may
develop many years after the traumatic event and are similar to symptoms observed inpeople who have seen painful life-changing events, such as wars, bombings, or natural
disasters. In severe cases, symptoms of depression or posttraumatic stress may
negatively affect personal 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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Emotional Issues
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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

Health Link
Healthy living after treatment for childhood cancer

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Emotional Issues
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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.

Health Link
Healthy living after treatment for childhood cancer

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Emotional Issues
Version 1.1- 9/03

Disclaimer: This document referred to as Health Link, entitled, “Health Link, Healthy living after treatment
for childhood cancer”, and information contained within this Health Link document, whether available inprint format (such as a brochure) or electronic format (such as a document posted on a website) (with such
document and information hereinafter known as the “Site”) does NOT provide medical advice. This Site(including text and related graphics) is for informational purposes only. Such information is not intended foruse in the diagnosis, medical treatment, or care of any person; nor is this information intended to substitutefor professional medical advice, diagnosis or treatment. Always seek the advice of your physician or otherqualified health provider with any questions you may have regarding a medical condition and do not rely on
this Site. No endorsement of any specific tests, products, or procedures is made by the Children’s
Oncology Group, by any contributor to the Site, or by any Children’s Oncology Group affiliated party andreliance on the information contained within this Site is at your own risk. While the Children’s Oncology
Group has made every attempt to assure that the content of this Site is accurate and complete as of thedate of publication, no warranty or representation, express or implied, is made as to the validity or
sufficiency of the information contained herein. No liability is assumed by the Children’s Oncology Group or
any affiliated party thereof. You acknowledge that the Children’s Oncology Group and any contributors to
the Site are not engaged in the practice of medicine and that all decisions made using the medical
information provided at this site shall be your sole and exclusive responsibility. You agree, at yourexpense, to indemnify, defend and hold the Children’s Oncology Group, its officers, directors, employees,
agents, members, affiliated organizations and contributors to this Site (collectively the “Indemnified Parties”)
harmless from any and all losses, liabilities, or damages (including attorneys' fees and costs) resulting fromany and all claims, causes of action, suits, proceedings, or demands against the Indemnified Parties related
to reliance on this Site for information or based on related medical care, treatment and decisions or
recommendations made using the information available on this Site. Information and content contained inthis Site is subject to protection under copyright as noted below and to other intellectual property protectionin the United States and worldwide. The Children’s Oncology Group retains excusive right, title, andinterest to the copyright and related intellectual property contained on this Site.

Health Link
Healthy living after treatment for childhood cancer

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Eye Problems
Version 1.1- 9/03

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.

Healthy living after treatment for childhood cancer

Health Link

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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CorneaConjunctiva

Eye Problems
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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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Eye Problems
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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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Healthy living after treatment for childhood cancer

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Eye Problems
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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: “School and Learning
Problems after Childhood Cancer”).
The Americans with Disabilities Act (ADA, PL 101-336) guarantees people with visual
impairment equal access to public events, spaces and opportunities.

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Eye Problems
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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.
Disclaimer: This document referred to as Health Link, entitled, “Health Link, Healthy living after treatment
for childhood cancer”, and information contained within this Health Link document, whether available inprint format (such as a brochure) or electronic format (such as a document posted on a website) (with such
document and information hereinafter known as the “Site”) does NOT provide medical advice. This Site(including text and related graphics) is for informational purposes only. Such information is not intended foruse in the diagnosis, medical treatment, or care of any person; nor is this information intended to substitutefor professional medical advice, diagnosis or treatment. Always seek the advice of your physician or otherqualified health provider with any questions you may have regarding a medical condition and do not rely on
this Site. No endorsement of any specific tests, products, or procedures is made by the Children’s
Oncology Group, by any contributor to the Site, or by any Children’s Oncology Group affiliated party andreliance on the information contained within this Site is at your own risk. While the Children’s Oncology
Group has made every attempt to assure that the content of this Site is accurate and complete as of thedate of publication, no warranty or representation, express or implied, is made as to the validity or
sufficiency of the information contained herein. No liability is assumed by the Children’s Oncology Group or
any affiliated party thereof. You acknowledge that the Children’s Oncology Group and any contributors to
the Site are not engaged in the practice of medicine and that all decisions made using the medical
information provided at this site shall be your sole and exclusive responsibility. You agree, at yourexpense, to indemnify, defend and hold the Children’s Oncology Group, its officers, directors, employees,
agents, members, affiliated organizations and contributors to this Site (collectively the “Indemnified Parties”)
harmless from any and all losses, liabilities, or damages (including attorneys' fees and costs) resulting fromany and all claims, causes of action, suits, proceedings, or demands against the Indemnified Parties related
to reliance on this Site for information or based on related medical care, treatment and decisions or
recommendations made using the information available on this Site. Information and content contained inthis Site is subject to protection under copyright as noted below and to other intellectual property protectionin the United States and worldwide. The Children’s Oncology Group retains excusive right, title, andinterest to the copyright and related intellectual property contained on this Site.

Health Link
Healthy living after treatment for childhood cancer

Page 5 of 5

Female Health Issues
Version 1.1 – 9/03

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.

Healthy living after treatment for childhood cancer

Health Link

The female reproductive organs
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
the ovaries, reducing the reserve supply of eggs. When the ovaries are not able toproduce 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 andthe total radiation dose can affect whether or not ovarian failure occurs. Generally,
younger girls tend to have less damage to the ovaries than people who received
equal doses but who were teenagers or young adults at the time of radiation.
However, 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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Female Health Issues
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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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Female Health Issues
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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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Female Health Issues
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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 Links: “The Heart and Anthracyclines” and “The Heart andRadiation”).

•

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.

Health Link
Healthy living after treatment for childhood cancer

Page 4 of 5

Female Health Issues
Version 1.1 – 9/03

Disclaimer: This document referred to as Health Link, entitled, “Health Link, Healthy living after treatment
for childhood cancer”, and information contained within this Health Link document, whether available inprint format (such as a brochure) or electronic format (such as a document posted on a website) (with such
document and information hereinafter known as the “Site”) does NOT provide medical advice. This Site(including text and related graphics) is for informational purposes only. Such information is not intended foruse in the diagnosis, medical treatment, or care of any person; nor is this information intended to substitutefor professional medical advice, diagnosis or treatment. Always seek the advice of your physician or otherqualified health provider with any questions you may have regarding a medical condition and do not rely on
this Site. No endorsement of any specific tests, products, or procedures is made by the Children’s
Oncology Group, by any contributor to the Site, or by any Children’s Oncology Group affiliated party andreliance on the information contained within this Site is at your own risk. While the Children’s Oncology
Group has made every attempt to assure that the content of this Site is accurate and complete as of thedate of publication, no warranty or representation, express or implied, is made as to the validity or
sufficiency of the information contained herein. No liability is assumed by the Children’s Oncology Group or
any affiliated party thereof. You acknowledge that the Children’s Oncology Group and any contributors to
the Site are not engaged in the practice of medicine and that all decisions made using the medical
information provided at this site shall be your sole and exclusive responsibility. You agree, at yourexpense, to indemnify, defend and hold the Children’s Oncology Group, its officers, directors, employees,
agents, members, affiliated organizations and contributors to this Site (collectively the “Indemnified Parties”)
harmless from any and all losses, liabilities, or damages (including attorneys' fees and costs) resulting fromany and all claims, causes of action, suits, proceedings, or demands against the Indemnified Parties related
to reliance on this Site for information or based on related medical care, treatment and decisions or
recommendations made using the information available on this Site. Information and content contained inthis Site is subject to protection under copyright as noted below and to other intellectual property protectionin the United States and worldwide. The Children’s Oncology Group retains excusive right, title, andinterest to the copyright and related intellectual property contained on this Site.

Health Link
Healthy living after treatment for childhood cancer

Page 5 of 5

Finding Healthcare
Version 1.1- 9/03

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
are attending 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 fora general check-up and discuss your past medical history and health risks during thisvisit. 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.childrensoncologygroup.org/disc/le/. This comprehensive set of healthcare
screening and management guidelines is designed for use by healthcare professionals
who are providing 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 write a lettersummarizing your diagnosis and treatment, future health risks, and recommended
screening. Keep a copy of the letter 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 have because ofyour 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!!

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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.

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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/

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Written by Melissa Hudson, MD, Sally Wiard, MSW, LCSW, and Allison Hester, RN, MSN,
CRNP. 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, CRNP 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.

Disclaimer: This document referred to as Health Link, entitled, “Health Link, Healthy living after treatment
for childhood cancer”, and information contained within this Health Link document, whether available inprint format (such as a brochure) or electronic format (such as a document posted on a website) (with such
document and information hereinafter known as the “Site”) does NOT provide medical advice. This Site(including text and related graphics) is for informational purposes only. Such information is not intended foruse in the diagnosis, medical treatment, or care of any person; nor is this information intended to substitutefor professional medical advice, diagnosis or treatment. Always seek the advice of your physician or otherqualified health provider with any questions you may have regarding a medical condition and do not rely on
this Site. No endorsement of any specific tests, products, or procedures is made by the Children’s
Oncology Group, by any contributor to the Site, or by any Children’s Oncology Group affiliated party andreliance on the information contained within this Site is at your own risk. While the Children’s Oncology
Group has made every attempt to assure that the content of this Site is accurate and complete as of thedate of publication, no warranty or representation, express or implied, is made as to the validity or
sufficiency of the information contained herein. No liability is assumed by the Children’s Oncology Group or
any affiliated party thereof. You acknowledge that the Children’s Oncology Group and any contributors to
the Site are not engaged in the practice of medicine and that all decisions made using the medical
information provided at this site shall be your sole and exclusive responsibility. You agree, at yourexpense, to indemnify, defend and hold the Children’s Oncology Group, its officers, directors, employees,
agents, members, affiliated organizations and contributors to this Site (collectively the “Indemnified Parties”)
harmless from any and all losses, liabilities, or damages (including attorneys' fees and costs) resulting fromany and all claims, causes of action, suits, proceedings, or demands against the Indemnified Parties related
to reliance on this Site for information or based on related medical care, treatment and decisions or
recommendations made using the information available on this Site. Information and content contained inthis Site is subject to protection under copyright as noted below and to other intellectual property protectionin the United States and worldwide. The Children’s Oncology Group retains excusive right, title, andinterest to the copyright and related intellectual property contained on this Site.

Health Link
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Growth Hormone Deficiency
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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

Healthy living after treatment for childhood cancer

Health Link

Thyroid

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)
that work 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)

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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.

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Disclaimer: This document referred to as Health Link, entitled, “Health Link, Healthy living after treatment
for childhood cancer”, and information contained within this Health Link document, whether available inprint format (such as a brochure) or electronic format (such as a document posted on a website) (with such
document and information hereinafter known as the “Site”) does NOT provide medical advice. This Site(including text and related graphics) is for informational purposes only. Such information is not intended foruse in the diagnosis, medical treatment, or care of any person; nor is this information intended to substitutefor professional medical advice, diagnosis or treatment. Always seek the advice of your physician or otherqualified health provider with any questions you may have regarding a medical condition and do not rely on
this Site. No endorsement of any specific tests, products, or procedures is made by the Children’s
Oncology Group, by any contributor to the Site, or by any Children’s Oncology Group affiliated party andreliance on the information contained within this Site is at your own risk. While the Children’s Oncology
Group has made every attempt to assure that the content of this Site is accurate and complete as of thedate of publication, no warranty or representation, express or implied, is made as to the validity or
sufficiency of the information contained herein. No liability is assumed by the Children’s Oncology Group or
any affiliated party thereof. You acknowledge that the Children’s Oncology Group and any contributors to
the Site are not engaged in the practice of medicine and that all decisions made using the medical
information provided at this site shall be your sole and exclusive responsibility. You agree, at yourexpense, to indemnify, defend and hold the Children’s Oncology Group, its officers, directors, employees,
agents, members, affiliated organizations and contributors to this Site (collectively the “Indemnified Parties”)
harmless from any and all losses, liabilities, or damages (including attorneys' fees and costs) resulting fromany and all claims, causes of action, suits, proceedings, or demands against the Indemnified Parties related
to reliance on this Site for information or based on related medical care, treatment and decisions or
recommendations made using the information available on this Site. Information and content contained inthis Site is subject to protection under copyright as noted below and to other intellectual property protectionin the United States and worldwide. The Children’s Oncology Group retains excusive right, title, andinterest to the copyright and related intellectual property contained on this Site.

Health Link
Healthy living after treatment for childhood cancer

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Diet & Physical Activity
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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 foreach individual 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 prior therapy. 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 ofsaliva that can cause foods to taste pasty and dry. Dental problems can cause
problems with chewing 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 a healthy 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, The Heart andAnthracyclines and The Heart and Radiation).
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 tobegin making healthy choices about diet and exercise. These choices can have apositive effect on your health for many years to come.

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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
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Diet & Physical Activity
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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.

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•
•
•
•
•

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.

Disclaimer: This document referred to as Health Link, entitled, “Health Link, Healthy living after treatment
for childhood cancer”, and information contained within this Health Link document, whether available inprint format (such as a brochure) or electronic format (such as a document posted on a website) (with such
document and information hereinafter known as the “Site”) does NOT provide medical advice. This Site(including text and related graphics) is for informational purposes only. Such information is not intended foruse in the diagnosis, medical treatment, or care of any person; nor is this information intended to substitutefor professional medical advice, diagnosis or treatment. Always seek the advice of your physician or otherqualified health provider with any questions you may have regarding a medical condition and do not rely on
this Site. No endorsement of any specific tests, products, or procedures is made by the Children’s
Oncology Group, by any contributor to the Site, or by any Children’s Oncology Group affiliated party andreliance on the information contained within this Site is at your own risk. While the Children’s Oncology
Group has made every attempt to assure that the content of this Site is accurate and complete as of thedate of publication, no warranty or representation, express or implied, is made as to the validity or
sufficiency of the information contained herein. No liability is assumed by the Children’s Oncology Group or
any affiliated party thereof. You acknowledge that the Children’s Oncology Group and any contributors to
the Site are not engaged in the practice of medicine and that all decisions made using the medical
information provided at this site shall be your sole and exclusive responsibility. You agree, at yourexpense, to indemnify, defend and hold the Children’s Oncology Group, its officers, directors, employees,
agents, members, affiliated organizations and contributors to this Site (collectively the “Indemnified Parties”)
harmless from any and all losses, liabilities, or damages (including attorneys' fees and costs) resulting fromany and all claims, causes of action, suits, proceedings, or demands against the Indemnified Parties related
to reliance on this Site for information or based on related medical care, treatment and decisions or
recommendations made using the information available on this Site. Information and content contained inthis Site is subject to protection under copyright as noted below and to other intellectual property protectionin the United States and worldwide. The Children’s Oncology Group retains excusive right, title, andinterest to the copyright and related intellectual property contained on this Site.

Health Link
Healthy living after treatment for childhood cancer

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Hearing Problems
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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

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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
the eighth cranial nerve). In the cochlea, the sensory hair cells are arranged in order ofpitch, from low-pitched sounds (such as a man’s voice) to very high-pitched sounds(such as a bird’s chirping). Each hair cell is sensitive to a specific range of pitches.
What are the types of hearing loss?
Hearing loss that occurs in the outer or middle ear is called a conductive hearing loss.
This means that the hearing loss is due to a problem in transmission of sound from the
air to the inner ear. An example of this would be changes in hearing because of fluid
collection in the middle ear. Sometimes this happens when people have ear infections.
The fluid “muffles” the sound when it is traveling through the middle ear.

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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- 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• Yearly for 5 years after completion of cancer
treatment (and if younger than age 10, continue
yearly testing until reaching age 10). Then: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: “School and Learning Problems after 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 access to public
events, spaces and opportunities, including text telephones and telephone amplifiersin 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 assistantdirector 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.

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Disclaimer: This document referred to as Health Link, entitled, “Health Link, Healthy living after treatment
for childhood cancer”, and information contained within this Health Link document, whether available inprint format (such as a brochure) or electronic format (such as a document posted on a website) (with such
document and information hereinafter known as the “Site”) does NOT provide medical advice. This Site(including text and related graphics) is for informational purposes only. Such information is not intended foruse in the diagnosis, medical treatment, or care of any person; nor is this information intended to substitutefor professional medical advice, diagnosis or treatment. Always seek the advice of your physician or otherqualified health provider with any questions you may have regarding a medical condition and do not rely on
this Site. No endorsement of any specific tests, products, or procedures is made by the Children’s
Oncology Group, by any contributor to the Site, or by any Children’s Oncology Group affiliated party andreliance on the information contained within this Site is at your own risk. While the Children’s Oncology
Group has made every attempt to assure that the content of this Site is accurate and complete as of thedate of publication, no warranty or representation, express or implied, is made as to the validity or
sufficiency of the information contained herein. No liability is assumed by the Children’s Oncology Group or
any affiliated party thereof. You acknowledge that the Children’s Oncology Group and any contributors to
the Site are not engaged in the practice of medicine and that all decisions made using the medical
information provided at this site shall be your sole and exclusive responsibility. You agree, at yourexpense, to indemnify, defend and hold the Children’s Oncology Group, its officers, directors, employees,
agents, members, affiliated organizations and contributors to this Site (collectively the “Indemnified Parties”)
harmless from any and all losses, liabilities, or damages (including attorneys' fees and costs) resulting fromany and all claims, causes of action, suits, proceedings, or demands against the Indemnified Parties related
to reliance on this Site for information or based on related medical care, treatment and decisions or
recommendations made using the information available on this Site. Information and content contained inthis Site is subject to protection under copyright as noted below and to other intellectual property protectionin the United States and worldwide. The Children’s Oncology Group retains excusive right, title, andinterest to the copyright and related intellectual property contained on this Site.

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Heart & Anthracyclines
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The Heart & Anthracyclines
Anthracyclines
Anthracyclines are a type of chemotherapy used to treat many childhood cancers.
Included in the anthracycline group are doxorubicin (Adriamycin), daunorubicin(daunomycin, Cerubidine), idarubicin (Idamycin), mitoxantrone (Novantrone), andepirubicin. The use of anthracyclines has resulted in significant improvement in survival
for children and adolescents with cancer, but it has also sometimes led to problems withthe heart that may not become apparent until many years after treatment is completed.
It is therefore important for each childhood cancer survivor who has received
anthracyclines to continue to have regular medical check-ups so that if a problem withthe heart develops, it can be detected and treated early.
The Heart
The heart is a large muscle that is divided into four chambers and is designed to pumpblood throughout the body. The upper chambers are called “atria” and the lower
chambers are called “ventricles.” The blood returning from the body enters the rightatrium, is squeezed into the right ventricle, and then is pumped into the blood vessels in
the lungs. It is here that the oxygen we breathe is transferred into the many small bloodvessels in the lungs. The oxygen-rich blood returns to the left atrium and is thensqueezed into the left ventricle, the largest and most powerful of the chambers. The left
ventricle contracts to circulate the blood to the entire body.

Healthy living after treatment for childhood cancer

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The Problem
The cells of the heart muscle are called cardiomyocytes (cardio=heart, myo=muscle,cytes=cells). In ways that are not well understood, anthracyclines can damage thecardiomyocytes of the left ventricle. Over time, this can lead to thinning of the outside
wall or muscle of the left ventricle, resulting in a stiff, noncompliant (loss of normal
resiliency) left ventricle. The medical term for this condition is cardiomyopathy(cardio=heart, myo=muscle, pathy=abnormal, weakened).
Generally, this is not a problem while at rest, but when the heart needs to work harder,
such as during exercise or strenuous physical activity, the stiff left ventricle may not becapable of increased pumping action. If this happens, the blood that is being pumped
through the left side of the heart (atrium and ventricle) does not get pumped out fastenough and some of it “backlogs” in the small blood vessels of the lungs. Because theoxygen in the lungs is transferred to these small blood vessels, when the vessels
become engorged with the backlogged blood, the oxygen cannot be transferredproperly. Though this problem (called congestive heart failure) can be quite serious,
there are medications that can help.
Who is at Risk?
Many childhood cancer survivors who received anthracyclines have no heart damage atall. Others may have mild changes in heart functioning, but no progressive weakeningof the heart muscle. However, some survivors experience progressive weakening of the
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heart muscle (cardiomyopathy), and may also develop congestive heart failure.
Survivors treated with a total anthracycline dose of 300 mg/m2 (milligrams per square
meter of body surface area) or more when younger than 18 years of age, or 550 mg/m2
or more when 18 years or older, are at highest risk. Other risk factors are:
•
•
•
•

•
•

Female gender.
African American race.
Young age when treated. Anyone treated before the age of 5 years, andespecially those treated as infants, are at increased risk.
Treatment with both anthracyclines and radiation to the heart. The types ofradiation that can damage the heart are chest/thorax, mantle, mediastinal, lung,total body, whole or upper abdominal, left abdominal, left flank, or higher dose(>30 Gy) spinal radiation.
High doses of cyclophosphamide (Cytoxan) given as conditioning for stem celltransplant
Treatment with Amsacrine.

In addition, a history of congenital heart disease (heart problems present at birth), or afamily history of heart disease may also increase the risk of heart problems after
treatment for childhood cancer.
What are the symptoms of anthracycline-related heart problems?
Possible symptoms of congestive heart failure include:
•
•
•
•
•
•
•
•
•

Increasing shortness of breath or difficulty breathing during exercise
Shortness of breath when lying flat, especially at night
Chest pain (generally a smothering-type sensation)
Increasing fatigue
Poor appetite
Swelling of the feet or ankles
Persistent cough (which may produce white or pink-tinged phlegm)
Wheezing
Rapid heartbeat (feeling of heart racing or throbbing)

These symptoms may be caused by a variety of other medical conditions, so it is very
important to see your healthcare provider if you have any of these symptoms.
Is there anything that could worsen the weakened heart muscle or cause
symptoms to occur?
Yes, the following things can potentially worsen a weakened heart:Pregnancy: During pregnancy, the increased volume of blood can stress the heart.
Thus, the first time a female survivor may develop symptoms of heart problems may
be during pregnancy or labor. It is therefore very important that pregnant women who
received high doses of anthracyclines (300 mg/m2 or more) be cared for by aspecialist who can monitor their heart function.

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High fevers: High fevers can cause the heart to pump faster and can place extra
strain on a weakened heart.
Cocaine, diet pills, ephedra, mahuang: Use of these drugs can cause lifethreatening heart rhythm disturbances in a person whose heart has been weakened
by an anthracycline.
Weight lifting/exercise: Isometric exercises, such as weight lifting, can cause asudden worsening of heart function. Heavy weight lifting, or any vigorous isometric
exercise (especially if associated with breath holding) can be dangerous if a survivor
already has some weakening of the heart muscle. Limited high repetition weight lifting(using low weights to perform an exercise no more than 15 to 20 times in a row withease) is much less stressful to the heart and is more likely to be safe. Aerobic
exercise (brisk walking, running) is generally safe and actually healthy for the heart.
However, survivors who have received anthracyclines should check with theirhealthcare provider before beginning any exercise program.
What monitoring is required for potential heart problems?
Anyone who has received anthracycline chemotherapy to treat childhood cancer shouldhave a yearly medical evaluation, which should include specific evaluation of any
symptoms relating to the heart. In addition, an electrocardiogram (ECG, EKG) should bedone at the time the survivor enters long-term follow-up (usually about 5 years fromdiagnosis 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):Age at treatment*

Chest radiationYes< 1 yearNo
Yes

1 to 4 years oldNoYes>5 years old
No

Total
anthracycline
dose**

Recommended
frequency of
ECHO or MUGA

Any

Every year

<200 mg/m2
2

Every 2 years>200 mg/m

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

2

Every year

2<200 mg/m

Every 5 years>200 to <300 mg/m2

Every 2 years>300 mg/m2

Every year

>300 mg/m* 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

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Heart & Anthracyclines
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In addition, female survivors who are pregnant or planning pregnancy may also requireevaluation by a cardiologist. Cardiac monitoring during pregnancy/delivery may benecessary due to the extra strain on the heart that pregnancy (and especially labor) can
produce.
How are these 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 is an ultrasound of the heart that measures the thickness of themuscle of the left ventricle (main pumping chamber) and evaluates the pumping ability of
the heart. The two primary measures are the ejection fraction and the shortening
fraction. The ejection fraction is a ratio, calculated by measuring the amount of bloodthat is pumped out with each beat and dividing it by the amount of blood that waits forthe next cycle. The normal value for the ejection fraction depends on sex and age, but isgenerally 55% or higher. The shortening fraction is also a ratio, determined by thediameter change of the left ventricle between the relaxation and the contraction phases
divided by the diameter of the left ventricle in the relaxation phase. Generally a value of
30% or higher is considered normal. A decrease in the shortening fraction is usuallyseen before a decrease in the ejection fraction.
A technician, nurse, or doctor administers the echocardiogram. The survivor lies on atable and has conductive jelly applied to the chest. Then the technician puts atransducer (which emits the ultrasound waves) on the jelly and moves the device aroundon the chest to obtain different views of the heart. Slight pressure is applied on thetransducer and can sometimes cause discomfort. The test results are displayed onvideotape and photographed for later interpretation.
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 survivor then lies on a table and a special
camera moves above the table to obtain pictures of the heart in motion. Electrodes arealso placed on the chest to monitor the heart’s electrical impulses during the test.
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 other types of heart disease (such as heart attacks andhardening of the arteries) also increases. Factors that can increase the risk of heart
problems include smoking, being overweight, eating a high fat diet, and not exercising.

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Medical conditions that increase the risk include diabetes, high blood pressure, and highblood cholesterol. You can reduce your risk of heart problems by:••••

Not smoking (or quitting if you currently smoke).
Maintaining a healthy body weight.
Limiting the fat in your diet to no more than 30% of calories.
Exercising moderately for at least 30 minutes 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.

Adapted by Wendy Landier, CPNP, March 2003, from “Anthracyclines and the Heart” by Nancy
Keene and Kevin Oeffinger MD, Candlelighters Quarterly, Autumn 2000, with permission from
CandlelightersChildhood
CancerFoundation(phone:800-366-2223,
internet:www.candlelighters.org); and “Staying Healthy: Know Your Risk” by Melissa Hudson MD,
Childhood Cancer Survivor Study Newsletter, Summer 2001, used with permission.
Nancy Keene is co-author of Childhood Cancer Survivors: A Practical Guide to Your Future(O’Reilly & Associates, Sebastopol, CA, 2000)
Kevin Oeffinger, MD directs the After the Cancer Experience Young Adult Program for childhood
cancer survivors and is a Professor at the University of Texas Southwestern Medical Center in
Dallas, TX
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 assistant directorof the Survivorship Clinic at City of Hope National Medical Center in Duarte, CA
Reviewed by Smita Bhatia MD, MPH.

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Heart & Anthracyclines
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Disclaimer: This document referred to as Health Link, entitled, “Health Link, Healthy living after treatment
for childhood cancer”, and information contained within this Health Link document, whether available in print
format (such as a brochure) or electronic format (such as a document posted on a website) (with such
document and information hereinafter known as the “Site”) does NOT provide medical advice. This Site(including text and related graphics) is for informational purposes only. Such information is not intended foruse in the diagnosis, medical treatment, or care of any person; nor is this information intended to substitutefor professional medical advice, diagnosis or treatment. Always seek the advice of your physician or otherqualified health provider with any questions you may have regarding a medical condition and do not rely on
this Site. No endorsement of any specific tests, products, or procedures is made by the Children’s Oncology
Group, by any contributor to the Site, or by any Children’s Oncology Group affiliated party and reliance on
the information contained within this Site is at your own risk. While the Children’s Oncology Group has
made every attempt to assure that the content of this Site is accurate and complete as of the date of
publication, no warranty or representation, express or implied, is made as to the validity or sufficiency of theinformation contained herein. No liability is assumed by the Children’s Oncology Group or any affiliatedparty thereof. You acknowledge that the Children’s Oncology Group and any contributors to the Site are notengaged in the practice of medicine and that all decisions made using the medical information provided at
this site shall be your sole and exclusive responsibility. You agree, at your expense, to indemnify, defend
and hold the Children’s Oncology Group, its officers, directors, employees, agents, members, affiliatedorganizations and contributors to this Site (collectively the “Indemnified Parties”) harmless from any and all
losses, liabilities, or damages (including attorneys' fees and costs) resulting from any and all claims, causesof action, suits, proceedings, or demands against the Indemnified Parties related to reliance on this Site for
information or based on related medical care, treatment and decisions or recommendations made using theinformation available on this Site. Information and content contained in this Site is subject to protection
under copyright as noted below and to other intellectual property protection in the United States andworldwide. The Children’s Oncology Group retains excusive right, title, and interest to the copyright andrelated intellectual property contained on this Site.

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Heart & Radiation
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The Heart & Radiation
Radiation therapy is often an important part of the treatment for many childhood cancers.
The use of radiation has made a tremendous difference in treating cancer in children
and adolescents, leading to improved survival rates. Unfortunately, radiation given inchildhood also has the potential to cause problems with the heart many years after
treatment. Therefore it is important for each childhood cancer survivor who has received
radiation to the heart to continue to have regular medical check-ups so that if a problem
with the heart develops, it can be detected and treated early.
The Heart

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The heart is a large muscle that is divided into four chambers and is designed to pumpblood throughout the body. The upper chambers are called “atria” and the lower
chambers are called “ventricles”. The blood returning from the body enters the rightatrium, is squeezed into the right ventricle, and then is pumped into the blood vessels in
the lungs. It is here that the oxygen we breathe is transferred into the many small bloodvessels in the lungs. Then the oxygen-rich blood returns to the left atrium and is thensqueezed into the left ventricle, the largest and most powerful of the chambers. The left
ventricle contracts to circulate the blood to the entire body.
Blood flow between the heart chambers is controlled by four valves: aortic, mitral,pulmonary, and tricuspid. Each valve opens as blood flows into its respective chamber
and then closes as the chamber contracts and squeezes the blood out. On the outside of
the heart is a network of blood vessels (coronary arteries) that carry oxygen andnutrients to the hard-working heart muscle.
The Problem with Radiation
Most survivors who received radiation do not develop heart problems. But sometimes
radiation can damage the heart in one of several ways, including damage to the heart
muscle, the valves, or the coronary arteries. Each of these problems is quite different, so
let’s discuss them one at a time.
Damage to the heart muscle is called cardiomyopathy (cardio = heart, myo = muscle,
pathy = abnormal, weakened). This term is used when the muscle does not work as wellas it should. It generally affects the left ventricle more than the other parts of the heart,causing it to be stiff and less responsive to changes. Usually when someone is at rest
the heart does not have to work hard. But when the heart needs to work harder, such as
during pregnancy or strenuous physical activity, the stiff left ventricle may not be able toincrease its pumping action. If this happens, the blood that is being pumped through theleft side of the heart (atrium and ventricle) does not get pumped out fast enough andsome of it “backlogs” in the small blood vessels of the lungs. The oxygen in the lungs istransferred to these small blood vessels, and so when the vessels become engorgedwith the backlogged blood, the oxygen cannot be transferred properly. Though thisproblem—called congestive heart failure—can be quite serious, there are medications
that can help.
Radiation can also damage the valves in the heart, especially the two valves on the left
side of the heart (mitral and aortic). If a valve is damaged, it can either become “leaky”
so that blood flows backwards into the chamber it came from, or it can become “stiff” andPage 1 of 7
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Heart & Radiation
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not open very well, slowing the flow of blood. Problems with valves can cause the heart
to work too hard, and lead to congestive heart failure and other heart problems.
A third problem that can be caused by radiation is premature coronary artery disease.
The network of small blood vessels on the outside of the heart feeds the heart muscle
with oxygen and nutrition. The interior of normal, healthy blood vessels is smooth.
Radiation can scar the inside of blood vessels, and these scarred areas are sites where
fatty deposits (plaques) may develop. Calcium deposits can harden the plaques,
resulting in atherosclerosis (hardening of the arteries). Coronary artery disease(coronary = heart; artery = blood vessel) is when one or more of the blood vessels
becomes clogged with plaque. It is similar to a clogged pipe that does not allow much
liquid to flow through it. If this happens, the heart muscle cannot get enough oxygen andnutrition for all of its work. So when the heart needs to work harder and it cannot getenough oxygen or nutrition, a person may experience chest pain (angina), which will lasta few minutes until the oxygen gets through the partially clogged artery. If the bloodvessel is fully blocked, the part of the muscle that was depending upon the oxygen fromthat vessel dies (a heart attack). If it is a small blood vessel supplying a small amount ofheart muscle, then the person has a small or minor heart attack. But if it is a larger
vessel feeding a larger amount of heart muscle, the heart attack is serious and can belife-threatening.
Occasionally, other radiation-related problems affecting the heart can occur, including
pericarditis (an inflammation of the thin membrane that surrounds the heart), pericardial
fibrosis (scarring of the thin membrane that surrounds the heart) and arrhythmias(abnormal heart rhythms).
Who is at risk of radiation-related heart problems?
Children or teens who received total body irradiation (TBI) or radiation at doses of 20 Gy(2000 cGy/rads) or more to the following areas (fields) may be at risk:• Chest/thorax• Mantle (from the chin to the upper abdomen)• Mediastinal (central part of the chest)• Lung• Spine, if dose was 30 Gy (3000 cGy/rads) or higher• Whole or upper abdomen• Left abdomen or left flank
Whether the heart sustains injury after radiation treatment depends on several factors
including:•••

Total radiation dose  Survivors who received doses of 40 Gy(4000 cGy/rads) or more are at highest risk.
Amount and areas of the heart treated.
Chemotherapy drugs used. Anthracyclines such as doxorubicin(Adriamycin), daunorubicin (daunomycin, Cerubidine), idarubicin(Idamycin), mitoxantrone (Novantrone), and epirubicin increase the risk.
Dactinomycin (Actinomycin-D) also can increase the risk, especially if
combined with radiation doses of 30 Gy (3000 cGy/rads) or higher.

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Modern radiation techniques using lower total doses and cardiac (subcarinal) shielding
are less likely to cause damage.
Other factors that may also increase the risk of subsequent heart problems include:• Young age when treated. Anyone treated before the age of 5 years, andespecially those treated as infants are at increased risk.
• Family history of high blood cholesterol or coronary artery disease• Smoking• Obesity• High blood pressure• High blood cholesterol levels• Diabetes• Premature menopause (if not taking hormone replacement therapy)
What are the symptoms of a heart problem from radiation?
The signs and symptoms of radiation-induced heart damage vary widely. Possible
symptoms of congestive heart failure (resulting from a weakened heart or valve
problems) include:• Increasing shortness of breath or difficulty breathing during exercise• Shortness of breath when lying flat, especially at night• Chest pain (generally a smothering-type sensation)• Increasing fatigue• Poor appetite• Swelling of the feet or ankles• Persistent cough (which may produce white or pink-tinged phlegm)• Wheezing• Rapid heartbeat (feeling of heart racing or throbbing)
These symptoms may be caused by a variety of other medical conditions, so it is very
important to see your healthcare provider if you have any of these symptoms.
Possible symptoms of coronary artery disease (resulting from clogged blood vessels in
the heart) include:• Uncomfortable pressure, fullness, squeezing or pain in the center of the chestthat lasts a few minutes, or goes away and comes back.
• Pain that spreads to the shoulders, neck or arms.
• Chest discomfort with lightheadedness, fainting, sweating, nausea or
shortness of breath.
Possible symptoms of other heart problems (such as pericarditis or arrhythmia) include:••

Sharp piercing pain in the center or the left side of the chest (often worsens
with a deep breath).
Rapid heartbeat, palpitations, dizziness, fainting or near fainting.

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These symptoms may indicate a serious heart problem and require immediate medical
attention. It is important for the childhood cancer survivor to have regular check-ups,
including tests of heart function, in order to catch problems early when they may beeasier to correct.
Is there anything that could worsen weakened heart muscle or cause symptoms tooccur?
Yes, the following things can potentially worsen a weakened heart:Pregnancy: During pregnancy, the increased volume of blood can stress the heart.
Thus, the first time a female survivor may develop symptoms of heart problems may
be during pregnancy or labor. It is very important that pregnant women who received
any of the following be cared for by a specialist who can monitor their heart function:• Chest radiation at a dose of 30 Gy (3000 rads/cGy) or higher.
• Any dose of chest radiation if the survivor also received anthracycline
chemotherapy.
• Total body irradiation (TBI) - if the survivor also received anthracycline or
cyclophosphamide chemotherapy.
High fevers: High fevers can cause the heart to pump faster and can place extra
strain on a weakened heart.
Cocaine, diet pills, ephedra, mahuang: Use of these drugs can cause lifethreatening rhythm disturbances in a person whose heart has been weakened bychest radiation.
Weight lifting/exercise: Isometric exercises, such as weight lifting, can cause
sudden worsening of heart function. Heavy weight lifting, or any vigorous isometric
exercise (especially if associated with breath holding) may be dangerous if a survivor
already has some weakening of the heart muscle. Limited high repetition weight lifting(using low weights to perform an exercise no more than 15 to 20 times in a row withease) is less stressful to the heart and more likely to be safe. Aerobic exercise (brisk
walking, running) is generally safe and actually healthy for the heart. However,survivors with any symptoms of heart weakening or heart disease should check with
their healthcare provider before beginning any exercise program.
What monitoring is required for potential heart problems?
Anyone who has received radiation during treatment for childhood cancer should have ayearly medical evaluation (which should include specific evaluation of any symptoms
relating to the heart). In addition, an electrocardiogram (ECG, EKG) should be done at
the time of entry into long-term follow-up (usually about 5 years from diagnosis or 2
years after completion of therapy), and then as recommended by your healthcare
provider. A blood test to check for diabetes and high cholesterol levels (fasting glucose
and lipid profile) should be done every 3 to 5 years. An echocardiogram 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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Total
anthracycline
dose**

Recommended
frequency of
ECHO

None

Every 2 years

Any

Every year

< 30 Gy

None

Every 5 years> 30 Gy

None

Age at treatment*

Chest radiationdose< 5 years oldAny> 5 years old

Every 2 years2

Any<300 mg/m

Every 2 years>300 mg/m2

Every year

* age at time of 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

Childhood cancer survivors who received a radiation dose of 40 Gy (4000 cGy/rads) or
higher to fields involving the heart (as listed above), or those who received a radiationdose of 30 Gy (3000 cGy/rads) or higher plus anthracycline chemotherapy, should also
see a cardiologist (heart specialist) for baseline cardiac stress testing 5 to 10 years after
the radiation was given.
In addition, female survivors who are pregnant or planning pregnancy may also requireevaluation by a cardiologist. Cardiac monitoring during pregnancy/delivery may benecessary due to the extra strain on the heart that pregnancy (and especially labor) can
produce.
How are these 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 is an ultrasound of the heart that measures the thickness of themuscle of the left ventricle (main pumping chamber) and evaluates the pumping ability of
the heart. The two primary measures are the ejection fraction and the shortening
fraction. The ejection fraction is a ratio, calculated by measuring the amount of bloodthat is pumped out with each beat and dividing it by the amount of blood that waits forthe next cycle. The normal value for the ejection fraction depends on sex and age, but isgenerally 55% or higher. The shortening fraction is also a ratio, determined by thediameter change of the left ventricle between the relaxation and the contraction phases
divided by the diameter of the left ventricle in the relaxation phase. Generally a value of
30% or higher is considered normal. A decrease in the shortening fraction is usuallyseen before a decrease in the ejection fraction.
A technician, nurse, or doctor administers the echocardiogram. The survivor lies on atable and has conductive jelly applied to the chest. Then the technician puts atransducer (which emits the ultrasound waves) on the jelly and moves the device around

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on the chest to obtain different views of the heart. Slight pressure is applied on thetransducer and can sometimes cause discomfort. The test results are displayed onvideotape and photographed for later interpretation.
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 is needed for additional evaluation and/or treatment withmedications
What can be done to prevent heart problems?
With increasing age, the risk of other types of heart disease (such as heart attacks andhardening of the arteries) also increases. Factors that can 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:• Not smoking or quitting if you currently smoke.
• Maintaining a healthy body weight.
• Limiting the fat in your diet to no more than 30% of calories.
• Exercising moderately for at least 30 minutes 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.
Adapted by Wendy Landier, CPNP, March 2003, from “Radiation and the Heart” by Nancy Keeneand Kevin Oeffinger MD, Candlelighters Quarterly, Winter 2000, with permission from
CandlelightersChildhood
CancerFoundation(phone:800-366-2223,
internet:www.candlelighters.org); and “Staying Healthy: Know Your Risk” by Melissa Hudson MD,
Childhood Cancer Survivor Study Newsletter, Summer 2001, used with permission.
Nancy Keene is co-author of Childhood Cancer Survivors: A Practical Guide to Your Future(O’Reilly & Associates, Sebastopol, CA, 2000)
Kevin Oeffinger, MD directs the After the Cancer Experience Young Adult Program for childhood
cancer survivors and is a Professor at the University of Texas Southwestern Medical Center in
Dallas, TX
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 assistant directorof the Survivorship Clinic at City of Hope National Medical Center in Duarte, CA
Reviewed by Smita Bhatia MD, MPH.

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Disclaimer: This document referred to as Health Link, entitled, “Health Link, Healthy living after treatment
for childhood cancer”, and information contained within this Health Link document, whether available in print
format (such as a brochure) or electronic format (such as a document posted on a website) (with such
document and information hereinafter known as the “Site”) does NOT provide medical advice. This Site(including text and related graphics) is for informational purposes only. Such information is not intended foruse in the diagnosis, medical treatment, or care of any person; nor is this information intended to substitutefor professional medical advice, diagnosis or treatment. Always seek the advice of your physician or otherqualified health provider with any questions you may have regarding a medical condition and do not rely on
this Site. No endorsement of any specific tests, products, or procedures is made by the Children’s Oncology
Group, by any contributor to the Site, or by any Children’s Oncology Group affiliated party and reliance on
the information contained within this Site is at your own risk. While the Children’s Oncology Group has
made every attempt to assure that the content of this Site is accurate and complete as of the date of
publication, no warranty or representation, express or implied, is made as to the validity or sufficiency of theinformation contained herein. No liability is assumed by the Children’s Oncology Group or any affiliatedparty thereof. You acknowledge that the Children’s Oncology Group and any contributors to the Site are notengaged in the practice of medicine and that all decisions made using the medical information provided at
this site shall be your sole and exclusive responsibility. You agree, at your expense, to indemnify, defend
and hold the Children’s Oncology Group, its officers, directors, employees, agents, members, affiliatedorganizations and contributors to this Site (collectively the “Indemnified Parties”) harmless from any and all
losses, liabilities, or damages (including attorneys' fees and costs) resulting from any and all claims, causesof action, suits, proceedings, or demands against the Indemnified Parties related to reliance on this Site for
information or based on related medical care, treatment and decisions or recommendations made using theinformation available on this Site. Information and content contained in this Site is subject to protection
under copyright as noted below and to other intellectual property protection in the United States andworldwide. The Children’s Oncology Group retains excusive right, title, and interest to the copyright andrelated intellectual property contained on this Site.

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Hepatitis
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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 twomain types of hepatitis (hepatitis B and hepatitis C) that can be transmitted throughblood 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
United States, routine screening of blood donors for hepatitis B began in 1971. The
most accurate 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.

Healthy living after treatment for childhood cancer

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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
three pounds. It is responsible for filtering out toxins from the blood, aiding withdigestion and metabolism, and producing many important substances including bloodclotting proteins.
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.

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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.

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Hepatitis
Version 1.1 – 9/03•••

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 andassistant 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.
Disclaimer: This document referred to as Health Link, entitled, “Health Link, Healthy living after treatment
for childhood cancer”, and information contained within this Health Link document, whether available inprint format (such as a brochure) or electronic format (such as a document posted on a website) (with such
document and information hereinafter known as the “Site”) does NOT provide medical advice. This Site(including text and related graphics) is for informational purposes only. Such information is not intended foruse in the diagnosis, medical treatment, or care of any person; nor is this information intended to substitutefor professional medical advice, diagnosis or treatment. Always seek the advice of your physician or otherqualified health provider with any questions you may have regarding a medical condition and do not rely on
this Site. No endorsement of any specific tests, products, or procedures is made by the Children’s
Oncology Group, by any contributor to the Site, or by any Children’s Oncology Group affiliated party andreliance on the information contained within this Site is at your own risk. While the Children’s Oncology
Group has made every attempt to assure that the content of this Site is accurate and complete as of thedate of publication, no warranty or representation, express or implied, is made as to the validity or
sufficiency of the information contained herein. No liability is assumed by the Children’s Oncology Group or
any affiliated party thereof. You acknowledge that the Children’s Oncology Group and any contributors to
the Site are not engaged in the practice of medicine and that all decisions made using the medical
information provided at this site shall be your sole and exclusive responsibility. You agree, at yourexpense, to indemnify, defend and hold the Children’s Oncology Group, its officers, directors, employees,
agents, members, affiliated organizations and contributors to this Site (collectively the “Indemnified Parties”)
harmless from any and all losses, liabilities, or damages (including attorneys' fees and costs) resulting fromany and all claims, causes of action, suits, proceedings, or demands against the Indemnified Parties related
to reliance on this Site for information or based on related medical care, treatment and decisions or
recommendations made using the information available on this Site. Information and content contained inthis Site is subject to protection under copyright as noted below and to other intellectual property protectionin the United States and worldwide. The Children’s Oncology Group retains excusive right, title, andinterest to the copyright and related intellectual property contained on this Site.

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Hyperprolactinemia
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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

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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)
that work 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.

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Hyperprolactinemia
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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.

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Disclaimer: This document referred to as Health Link, entitled, “Health Link, Healthy living after treatment
for childhood cancer”, and information contained within this Health Link document, whether available inprint format (such as a brochure) or electronic format (such as a document posted on a website) (with such
document and information hereinafter known as the “Site”) does NOT provide medical advice. This Site(including text and related graphics) is for informational purposes only. Such information is not intended foruse in the diagnosis, medical treatment, or care of any person; nor is this information intended to substitutefor professional medical advice, diagnosis or treatment. Always seek the advice of your physician or otherqualified health provider with any questions you may have regarding a medical condition and do not rely on
this Site. No endorsement of any specific tests, products, or procedures is made by the Children’s
Oncology Group, by any contributor to the Site, or by any Children’s Oncology Group affiliated party andreliance on the information contained within this Site is at your own risk. While the Children’s Oncology
Group has made every attempt to assure that the content of this Site is accurate and complete as of thedate of publication, no warranty or representation, express or implied, is made as to the validity or
sufficiency of the information contained herein. No liability is assumed by the Children’s Oncology Group or
any affiliated party thereof. You acknowledge that the Children’s Oncology Group and any contributors to
the Site are not engaged in the practice of medicine and that all decisions made using the medical
information provided at this site shall be your sole and exclusive responsibility. You agree, at yourexpense, to indemnify, defend and hold the Children’s Oncology Group, its officers, directors, employees,
agents, members, affiliated organizations and contributors to this Site (collectively the “Indemnified Parties”)
harmless from any and all losses, liabilities, or damages (including attorneys' fees and costs) resulting fromany and all claims, causes of action, suits, proceedings, or demands against the Indemnified Parties related
to reliance on this Site for information or based on related medical care, treatment and decisions or
recommendations made using the information available on this Site. Information and content contained inthis Site is subject to protection under copyright as noted below and to other intellectual property protectionin the United States and worldwide. The Children’s Oncology Group retains excusive right, title, andinterest to the copyright and related intellectual property contained on this Site.

Health Link
Healthy living after treatment for childhood cancer

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Hypopituitarism
Version 1.1 – 9/03

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

Healthy living after treatment for childhood cancer

Health Link

Thyroid

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)
that work 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
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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

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Hypopituitarism
Version 1.1 – 9/03

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.

Health Link
Healthy living after treatment for childhood cancer

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Hypopituitarism
Version 1.1 – 9/03

Disclaimer: This document referred to as Health Link, entitled, “Health Link, Healthy living after treatment for childhood
cancer”, and information contained within this Health Link document, whether available in print format (such as abrochure) or electronic format (such as a document posted on a website) (with such document and information
hereinafter known as the “Site”) does NOT provide medical advice. This Site (including text and related graphics) is for
informational purposes only. Such information is not intended for use in the diagnosis, medical treatment, or care of any
person; nor is this information intended to substitute for professional medical advice, diagnosis or treatment. Always
seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical
condition and do not rely on this Site. No endorsement of any specific tests, products, or procedures is made by theChildren’s Oncology Group, by any contributor to the Site, or by any Children’s Oncology Group affiliated party andreliance on the information contained within this Site is at your own risk. While the Children’s Oncology Group has madeevery attempt to assure that the content of this Site is accurate and complete as of the date of publication, no warranty or
representation, express or implied, is made as to the validity or sufficiency of the information contained herein. No
liability is assumed by the Children’s Oncology Group or any affiliated party thereof. You acknowledge that theChildren’s Oncology Group and any contributors to the Site are not engaged in the practice of medicine and that all
decisions made using the medical information provided at this site shall be your sole and exclusive responsibility. You
agree, at your expense, to indemnify, defend and hold the Children’s Oncology Group, its officers, directors, employees,
agents, members, affiliated organizations and contributors to this Site (collectively the “Indemnified Parties”) harmlessfrom any and all losses, liabilities, or damages (including attorneys' fees and costs) resulting from any and all claims,
causes of action, suits, proceedings, or demands against the Indemnified Parties related to reliance on this Site for
information or based on related medical care, treatment and decisions or recommendations made using the information
available on this Site. Information and content contained in this Site is subject to protection under copyright as noted
below and to other intellectual property protection in the United States and worldwide. The Children’s Oncology Groupretains excusive right, title, and interest to the copyright and related intellectual property contained on this Site.

Health Link
Healthy living after treatment for childhood cancer

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Long-Term Follow-Up
Version 1.1 – 9/03

Introduction to Long-Term Follow-Up
After Treatment for Childhood Cancer
Congratulations! You have “graduated” to long-term follow-up. You can now think ofyourself as a cancer survivor, not as a cancer patient! In long-term follow-up, thegoal is to help you stay as healthy as possible—to stay well and to do well in school or
at work.
Even though you are a cancer survivor, it is still important that you continue to haveregular medical care. In some cases, your care may continue at the same hospital or
clinic where you received your treatment, but you may be seen by different doctors andnurses in a special Long-Term Follow-Up Program. In other cases, you may receive
care from a healthcare provider working in partnership with your treatment center, orfrom a provider who is closer to your home. No matter where you receive your care, it
is important that you learn what you need to know about your treatment and the followup 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 and the date when you were diagnosed• Date(s) and description(s) of any relapses• Name, address, and phone number of hospital(s) or clinic(s) where you received
your care• Name, address, and phone numbers of your cancer doctor (oncologist) andother health team members responsible for your care
• Names of all the chemotherapy medicines that you received and how they were
given (such as by mouth or into the vein)• Total (cumulative) doses of certain chemotherapy drugs (alkylators andanthracyclines) and the dates when you received the first dose of each• Name and dates of any surgeries that you had and the name of the surgeon(s)• Dates, areas (fields), total doses, and number of treatments (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)• Type of conditioning (chemotherapy and/or radiation) received for bone marrowor stem cell transplant• Blood products received and date when you received the first blood product.
• 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.
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Long-Term Follow-Up
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Your follow-up schedule
Most childhood cancer survivors need long-term follow-up visits about once a year.
During these visits, it is important to talk about your progress and check for problems
that can happen after treatment for cancer. Talk with your healthcare provider about
your individual situation and determine a schedule for the follow-up care that will meetyour needs.
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 cancer
Problems that happen after treatment for childhood 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 childhood cancer. Some of the morecommon 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.
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.

Health Link
Healthy living after treatment for childhood cancer

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Long-Term Follow-Up
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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 childhood 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 during childhood 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!

Written by Wendy Landier, RN, MSN, CPNP, CPON®, pediatric nurse practitioner and assistantdirector 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. Jude’sChildren’s Hospital, Memphis, TN, used with permission.
Reviewed by Melissa Hudson MD and Smita Bhatia MD, MPH.

Health Link
Healthy living after treatment for childhood cancer

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Long-Term Follow-Up
Version 1.1 – 9/03

Disclaimer: This document referred to as Health Link, entitled, “Health Link, Healthy living after treatment
for childhood cancer”, and information contained within this Health Link document, whether available inprint format (such as a brochure) or electronic format (such as a document posted on a website) (with such
document and information hereinafter known as the “Site”) does NOT provide medical advice. This Site(including text and related graphics) is for informational purposes only. Such information is not intended foruse in the diagnosis, medical treatment, or care of any person; nor is this information intended to substitutefor professional medical advice, diagnosis or treatment. Always seek the advice of your physician or otherqualified health provider with any questions you may have regarding a medical condition and do not rely on
this Site. No endorsement of any specific tests, products, or procedures is made by the Children’s
Oncology Group, by any contributor to the Site, or by any Children’s Oncology Group affiliated party andreliance on the information contained within this Site is at your own risk. While the Children’s Oncology
Group has made every attempt to assure that the content of this Site is accurate and complete as of thedate of publication, no warranty or representation, express or implied, is made as to the validity or
sufficiency of the information contained herein. No liability is assumed by the Children’s Oncology Group or
any affiliated party thereof. You acknowledge that the Children’s Oncology Group and any contributors to
the Site are not engaged in the practice of medicine and that all decisions made using the medical
information provided at this site shall be your sole and exclusive responsibility. You agree, at yourexpense, to indemnify, defend and hold the Children’s Oncology Group, its officers, directors, employees,
agents, members, affiliated organizations and contributors to this Site (collectively the “Indemnified Parties”)
harmless from any and all losses, liabilities, or damages (including attorneys' fees and costs) resulting fromany and all claims, causes of action, suits, proceedings, or demands against the Indemnified Parties related
to reliance on this Site for information or based on related medical care, treatment and decisions or
recommendations made using the information available on this Site. Information and content contained inthis Site is subject to protection under copyright as noted below and to other intellectual property protectionin the United States and worldwide. The Children’s Oncology Group retains excusive right, title, andinterest to the copyright and related intellectual property contained on this Site.

Health Link
Healthy living after treatment for childhood cancer

Page 4 of 4

Kidney Health
Version 1.1- 9/03

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 1.1- 9/03•••

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
Version 1.1- 9/03

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 1.1- 9/03

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.

Health Link
Healthy living after treatment for childhood cancer

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Kidney Health
Version 1.1- 9/03

Disclaimer: This document referred to as Health Link, entitled, “Health Link, Healthy living after treatment
for childhood cancer”, and information contained within this Health Link document, whether available inprint format (such as a brochure) or electronic format (such as a document posted on a website) (with such
document and information hereinafter known as the “Site”) does NOT provide medical advice. This Site(including text and related graphics) is for informational purposes only. Such information is not intended foruse in the diagnosis, medical treatment, or care of any person; nor is this information intended to substitutefor professional medical advice, diagnosis or treatment. Always seek the advice of your physician or otherqualified health provider with any questions you may have regarding a medical condition and do not rely on
this Site. No endorsement of any specific tests, products, or procedures is made by the Children’s
Oncology Group, by any contributor to the Site, or by any Children’s Oncology Group affiliated party andreliance on the information contained within this Site is at your own risk. While the Children’s Oncology
Group has made every attempt to assure that the content of this Site is accurate and complete as of thedate of publication, no warranty or representation, express or implied, is made as to the validity or
sufficiency of the information contained herein. No liability is assumed by the Children’s Oncology Group or
any affiliated party thereof. You acknowledge that the Children’s Oncology Group and any contributors to
the Site are not engaged in the practice of medicine and that all decisions made using the medical
information provided at this site shall be your sole and exclusive responsibility. You agree, at yourexpense, to indemnify, defend and hold the Children’s Oncology Group, its officers, directors, employees,
agents, members, affiliated organizations and contributors to this Site (collectively the “Indemnified Parties”)
harmless from any and all losses, liabilities, or damages (including attorneys' fees and costs) resulting fromany and all claims, causes of action, suits, proceedings, or demands against the Indemnified Parties related
to reliance on this Site for information or based on related medical care, treatment and decisions or
recommendations made using the information available on this Site. Information and content contained inthis Site is subject to protection under copyright as noted below and to other intellectual property protectionin the United States and worldwide. The Children’s Oncology Group retains excusive right, title, andinterest to the copyright and related intellectual property contained on this Site.

Health Link
Healthy living after treatment for childhood cancer

Page 5 of 5

Limb Salvage
Version 1.1 – 9/03

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

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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
and adolescence 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
Version 1.1 – 9/03

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 M.D. Neyssa Marina MD, Winnie Kittiko RN, MS, and Catherine
L. Woodman MD.
Illustrated by Devika Bhatia.
Disclaimer: This document referred to as Health Link, entitled, “Health Link, Healthy living after treatment
for childhood cancer”, and information contained within this Health Link document, whether available inprint format (such as a brochure) or electronic format (such as a document posted on a website) (with such
document and information hereinafter known as the “Site”) does NOT provide medical advice. This Site(including text and related graphics) is for informational purposes only. Such information is not intended foruse in the diagnosis, medical treatment, or care of any person; nor is this information intended to substitutefor professional medical advice, diagnosis or treatment. Always seek the advice of your physician or otherqualified health provider with any questions you may have regarding a medical condition and do not rely on
this Site. No endorsement of any specific tests, products, or procedures is made by the Children’s
Oncology Group, by any contributor to the Site, or by any Children’s Oncology Group affiliated party andreliance on the information contained within this Site is at your own risk. While the Children’s Oncology
Group has made every attempt to assure that the content of this Site is accurate and complete as of thedate of publication, no warranty or representation, express or implied, is made as to the validity or
sufficiency of the information contained herein. No liability is assumed by the Children’s Oncology Group or
any affiliated party thereof. You acknowledge that the Children’s Oncology Group and any contributors to
the Site are not engaged in the practice of medicine and that all decisions made using the medical
information provided at this site shall be your sole and exclusive responsibility. You agree, at yourexpense, to indemnify, defend and hold the Children’s Oncology Group, its officers, directors, employees,
agents, members, affiliated organizations and contributors to this Site (collectively the “Indemnified Parties”)
harmless from any and all losses, liabilities, or damages (including attorneys' fees and costs) resulting fromany and all claims, causes of action, suits, proceedings, or demands against the Indemnified Parties related
to reliance on this Site for information or based on related medical care, treatment and decisions or
recommendations made using the information available on this Site. Information and content contained inthis Site is subject to protection under copyright as noted below and to other intellectual property protectionin the United States and worldwide. The Children’s Oncology Group retains excusive right, title, andinterest to the copyright and related intellectual property contained on this Site.

Health Link
Healthy living after treatment for childhood cancer

Page 2 of 2

Liver Health
Version 1.1 – 9/03

Liver Health after Childhood Cancer
Treatment for childhood cancer can sometimes damage the liver. It is important toknow 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.

Healthy living after treatment for childhood cancer

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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.
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 1.1 – 9/03••

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.

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Liver Health
Version 1.1 – 9/03•••

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 assistantdirector 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.

Disclaimer: This document referred to as Health Link, entitled, “Health Link, Healthy living after treatment
for childhood cancer”, and information contained within this Health Link document, whether available inprint format (such as a brochure) or electronic format (such as a document posted on a website) (with such
document and information hereinafter known as the “Site”) does NOT provide medical advice. This Site(including text and related graphics) is for informational purposes only. Such information is not intended foruse in the diagnosis, medical treatment, or care of any person; nor is this information intended to substitutefor professional medical advice, diagnosis or treatment. Always seek the advice of your physician or otherqualified health provider with any questions you may have regarding a medical condition and do not rely on
this Site. No endorsement of any specific tests, products, or procedures is made by the Children’s
Oncology Group, by any contributor to the Site, or by any Children’s Oncology Group affiliated party andreliance on the information contained within this Site is at your own risk. While the Children’s Oncology
Group has made every attempt to assure that the content of this Site is accurate and complete as of thedate of publication, no warranty or representation, express or implied, is made as to the validity or
sufficiency of the information contained herein. No liability is assumed by the Children’s Oncology Group or
any affiliated party thereof. You acknowledge that the Children’s Oncology Group and any contributors to
the Site are not engaged in the practice of medicine and that all decisions made using the medical
information provided at this site shall be your sole and exclusive responsibility. You agree, at yourexpense, to indemnify, defend and hold the Children’s Oncology Group, its officers, directors, employees,
agents, members, affiliated organizations and contributors to this Site (collectively the “Indemnified Parties”)
harmless from any and all losses, liabilities, or damages (including attorneys' fees and costs) resulting fromany and all claims, causes of action, suits, proceedings, or demands against the Indemnified Parties related
to reliance on this Site for information or based on related medical care, treatment and decisions or
recommendations made using the information available on this Site. Information and content contained inthis Site is subject to protection under copyright as noted below and to other intellectual property protectionin the United States and worldwide. The Children’s Oncology Group retains excusive right, title, andinterest to the copyright and related intellectual property contained on this Site.

Health Link
Healthy living after treatment for childhood cancer

Page 3 of 3

Male Health Issues
Version 1.1 – 9/03

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

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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 thetesticles mature in the epididymis (a coiled tube that sits on top of each testicle) andthen travel into the vas deferens (sperm storage area). The seminal vesicles andprostate gland produce 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 theprostate and seminal vesicles, and exit the body through the urethra (tube that carries
fluids out of the penis).
How does cancer therapy affect the male reproductive system?
The most common effect of cancer therapy on the male reproductive system isinfertility (the inability to initiate a pregnancy). Infertility can occur as a result of certain
types of chemotherapy, radiation to the brain or testicles, or surgery involving themale 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)

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Male Health Issues
Version 1.1 – 9/03

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.

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Page 3 of 5

Male Health Issues
Version 1.1 – 9/03

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.

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Page 4 of 5

Male Health Issues
Version 1.1 – 9/03

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.

Disclaimer: This document referred to as Health Link, entitled, “Health Link, Healthy living after treatment
for childhood cancer”, and information contained within this Health Link document, whether available inprint format (such as a brochure) or electronic format (such as a document posted on a website) (with such
document and information hereinafter known as the “Site”) does NOT provide medical advice. This Site(including text and related graphics) is for informational purposes only. Such information is not intended foruse in the diagnosis, medical treatment, or care of any person; nor is this information intended to substitutefor professional medical advice, diagnosis or treatment. Always seek the advice of your physician or otherqualified health provider with any questions you may have regarding a medical condition and do not rely on
this Site. No endorsement of any specific tests, products, or procedures is made by the Children’s
Oncology Group, by any contributor to the Site, or by any Children’s Oncology Group affiliated party andreliance on the information contained within this Site is at your own risk. While the Children’s Oncology
Group has made every attempt to assure that the content of this Site is accurate and complete as of thedate of publication, no warranty or representation, express or implied, is made as to the validity or
sufficiency of the information contained herein. No liability is assumed by the Children’s Oncology Group or
any affiliated party thereof. You acknowledge that the Children’s Oncology Group and any contributors to
the Site are not engaged in the practice of medicine and that all decisions made using the medical
information provided at this site shall be your sole and exclusive responsibility. You agree, at yourexpense, to indemnify, defend and hold the Children’s Oncology Group, its officers, directors, employees,
agents, members, affiliated organizations and contributors to this Site (collectively the “Indemnified Parties”)
harmless from any and all losses, liabilities, or damages (including attorneys' fees and costs) resulting fromany and all claims, causes of action, suits, proceedings, or demands against the Indemnified Parties related
to reliance on this Site for information or based on related medical care, treatment and decisions or
recommendations made using the information available on this Site. Information and content contained inthis Site is subject to protection under copyright as noted below and to other intellectual property protectionin the United States and worldwide. The Children’s Oncology Group retains excusive right, title, andinterest to the copyright and related intellectual property contained on this Site.

Health Link
Healthy living after treatment for childhood cancer

Page 5 of 5

Peripheral Neuropathy
Version 1.1- 9/03

Peripheral Neuropathy
What is peripheral neuropathy?

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Peripheral neuropathy, or damage to the peripheral nerves (nerves outside the brain or
spinal cord), is a potential side effect of chemotherapy drugs and may cause the hands
or feet to hurt, tingle, and feel numb or weak. Though the discomfort is felt in a muscle
or joint, the real damage is to the nerves that control the muscles. Nerves are made upof special cells that carry messages to and from the brain and spinal cord. Damage tothe nerve is often caused by a breakdown of the myelin sheath, the coating aroundnerve fibers that acts as an electrical insulator. There may also be direct damage to thenerve cells from pressure or trauma (for example from a tumor or surgery). Symptoms
usually start during treatment and persist, and are not late in onset. Symptoms often
improve once treatment has stopped, but for some survivors symptoms may persist formonths or years.
Symptoms 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 tonerve damage.

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Peripheral Neuropathy
Version 1.1- 9/03

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
Version 1.1- 9/03

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.

Disclaimer: This document referred to as Health Link, entitled, “Health Link, Healthy living after treatment
for childhood cancer”, and information contained within this Health Link document, whether available inprint format (such as a brochure) or electronic format (such as a document posted on a website) (with such
document and information hereinafter known as the “Site”) does NOT provide medical advice. This Site(including text and related graphics) is for informational purposes only. Such information is not intended foruse in the diagnosis, medical treatment, or care of any person; nor is this information intended to substitutefor professional medical advice, diagnosis or treatment. Always seek the advice of your physician or otherqualified health provider with any questions you may have regarding a medical condition and do not rely on
this Site. No endorsement of any specific tests, products, or procedures is made by the Children’s
Oncology Group, by any contributor to the Site, or by any Children’s Oncology Group affiliated party andreliance on the information contained within this Site is at your own risk. While the Children’s Oncology
Group has made every attempt to assure that the content of this Site is accurate and complete as of thedate of publication, no warranty or representation, express or implied, is made as to the validity or
sufficiency of the information contained herein. No liability is assumed by the Children’s Oncology Group or
any affiliated party thereof. You acknowledge that the Children’s Oncology Group and any contributors to
the Site are not engaged in the practice of medicine and that all decisions made using the medical
information provided at this site shall be your sole and exclusive responsibility. You agree, at yourexpense, to indemnify, defend and hold the Children’s Oncology Group, its officers, directors, employees,
agents, members, affiliated organizations and contributors to this Site (collectively the “Indemnified Parties”)
harmless from any and all losses, liabilities, or damages (including attorneys' fees and costs) resulting fromany and all claims, causes of action, suits, proceedings, or demands against the Indemnified Parties related
to reliance on this Site for information or based on related medical care, treatment and decisions or
recommendations made using the information available on this Site. Information and content contained inthis Site is subject to protection under copyright as noted below and to other intellectual property protectionin the United States and worldwide. The Children’s Oncology Group retains excusive right, title, andinterest to the copyright and related intellectual property contained on this Site.

Health Link
Healthy living after treatment for childhood cancer

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Precocious Puberty
Version 1.1- 9/03

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

Healthy living after treatment for childhood cancer

Health Link

Thyroid

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)
that work 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
Version 1.1- 9/03

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.

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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.
Disclaimer: This document referred to as Health Link, entitled, “Health Link, Healthy living after treatment
for childhood cancer”, and information contained within this Health Link document, whether available inprint format (such as a brochure) or electronic format (such as a document posted on a website) (with such
document and information hereinafter known as the “Site”) does NOT provide medical advice. This Site(including text and related graphics) is for informational purposes only. Such information is not intended foruse in the diagnosis, medical treatment, or care of any person; nor is this information intended to substitutefor professional medical advice, diagnosis or treatment. Always seek the advice of your physician or otherqualified health provider with any questions you may have regarding a medical condition and do not rely on
this Site. No endorsement of any specific tests, products, or procedures is made by the Children’s
Oncology Group, by any contributor to the Site, or by any Children’s Oncology Group affiliated party andreliance on the information contained within this Site is at your own risk. While the Children’s Oncology
Group has made every attempt to assure that the content of this Site is accurate and complete as of thedate of publication, no warranty or representation, express or implied, is made as to the validity or
sufficiency of the information contained herein. No liability is assumed by the Children’s Oncology Group or
any affiliated party thereof. You acknowledge that the Children’s Oncology Group and any contributors to
the Site are not engaged in the practice of medicine and that all decisions made using the medical
information provided at this site shall be your sole and exclusive responsibility. You agree, at yourexpense, to indemnify, defend and hold the Children’s Oncology Group, its officers, directors, employees,
agents, members, affiliated organizations and contributors to this Site (collectively the “Indemnified Parties”)
harmless from any and all losses, liabilities, or damages (including attorneys' fees and costs) resulting fromany and all claims, causes of action, suits, proceedings, or demands against the Indemnified Parties related
to reliance on this Site for information or based on related medical care, treatment and decisions or
recommendations made using the information available on this Site. Information and content contained inthis Site is subject to protection under copyright as noted below and to other intellectual property protectionin the United States and worldwide. The Children’s Oncology Group retains excusive right, title, andinterest to the copyright and related intellectual property contained on this Site.

Health Link
Healthy living after treatment for childhood cancer

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Pulmonary Health
Version 1.1 - 9/03

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 cause lung problems, it is important to learn about the lungs, and what you can do to
keep them as healthy as possible.
How the lungs function
The lungs transfer oxygen from the air to the blood, where it iscirculated to the 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.

Healthy living after treatment for childhood cancer

Health Link

Am I at risk for lung problems?
If you received any of the following treatments during your cancer therapy, you may be
at risk for developing lung problems:•Bleomycin (See the “Bleomycin Alert” Health Link for more information)•

Carmustine (also known as BCNU)•

Lomustine (also known as CCNU)•

Busulfan•

Radiation to the chest (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
host disease (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
Healthy living after treatment for childhood cancer

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Pulmonary Health
Version 1.1 - 9/03•

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 1.1 - 9/03

Disclaimer: This document referred to as Health Link, entitled, “Health Link, Healthy living after treatment
for childhood cancer”, and information contained within this Health Link document, whether available inprint format (such as a brochure) or electronic format (such as a document posted on a website) (with such
document and information hereinafter known as the “Site”) does NOT provide medical advice. This Site(including text and related graphics) is for informational purposes only. Such information is not intended foruse in the diagnosis, medical treatment, or care of any person; nor is this information intended to substitutefor professional medical advice, diagnosis or treatment. Always seek the advice of your physician or otherqualified health provider with any questions you may have regarding a medical condition and do not rely on
this Site. No endorsement of any specific tests, products, or procedures is made by the Children’s
Oncology Group, by any contributor to the Site, or by any Children’s Oncology Group affiliated party andreliance on the information contained within this Site is at your own risk. While the Children’s Oncology
Group has made every attempt to assure that the content of this Site is accurate and complete as of thedate of publication, no warranty or representation, express or implied, is made as to the validity or
sufficiency of the information contained herein. No liability is assumed by the Children’s Oncology Group or
any affiliated party thereof. You acknowledge that the Children’s Oncology Group and any contributors to
the Site are not engaged in the practice of medicine and that all decisions made using the medical
information provided at this site shall be your sole and exclusive responsibility. You agree, at yourexpense, to indemnify, defend and hold the Children’s Oncology Group, its officers, directors, employees,
agents, members, affiliated organizations and contributors to this Site (collectively the “Indemnified Parties”)
harmless from any and all losses, liabilities, or damages (including attorneys' fees and costs) resulting fromany and all claims, causes of action, suits, proceedings, or demands against the Indemnified Parties related
to reliance on this Site for information or based on related medical care, treatment and decisions or
recommendations made using the information available on this Site. Information and content contained inthis Site is subject to protection under copyright as noted below and to other intellectual property protectionin the United States and worldwide. The Children’s Oncology Group retains excusive right, title, andinterest to the copyright and related intellectual property contained on this Site.

Health Link
Healthy living after treatment for childhood cancer

Page 4 of 4

Raynaud’s Phenomenon
Version 1.1 – 9/03

Raynaud’s Phenomenon
What is Raynaud’s Phenomenon?
Raynaud’s is a condition that may cause some areas of your body to feel numb andcool in 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
body is exposed to cold, the hands and feet lose heat rapidly. In order to conserve
heat, the body 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 the small 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 skincolor and temperature. The first sign is often pallor (or whiteness), in response to thespasm. The skin may then appear blue (cyanotic) and feel numb or cold, because of alack of oxygen-rich blood. Finally, the skin may turn red and become swollen, as thesmall blood vessels relax and dilate, and blood flow returns. Commonly, throbbing andtingling may occur in the fingers and toes as the attack ends. Raynaud’s attacks canlast 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.

Health Link
Healthy living after treatment for childhood cancer

Page 2 of 3

Raynaud’s Phenomenon
Version 1.1 – 9/03

Disclaimer: This document referred to as Health Link, entitled, “Health Link, Healthy living after treatment
for childhood cancer”, and information contained within this Health Link document, whether available inprint format (such as a brochure) or electronic format (such as a document posted on a website) (with such
document and information hereinafter known as the “Site”) does NOT provide medical advice. This Site(including text and related graphics) is for informational purposes only. Such information is not intended foruse in the diagnosis, medical treatment, or care of any person; nor is this information intended to substitutefor professional medical advice, diagnosis or treatment. Always seek the advice of your physician or otherqualified health provider with any questions you may have regarding a medical condition and do not rely on
this Site. No endorsement of any specific tests, products, or procedures is made by the Children’s
Oncology Group, by any contributor to the Site, or by any Children’s Oncology Group affiliated party andreliance on the information contained within this Site is at your own risk. While the Children’s Oncology
Group has made every attempt to assure that the content of this Site is accurate and complete as of thedate of publication, no warranty or representation, express or implied, is made as to the validity or
sufficiency of the information contained herein. No liability is assumed by the Children’s Oncology Group or
any affiliated party thereof. You acknowledge that the Children’s Oncology Group and any contributors to
the Site are not engaged in the practice of medicine and that all decisions made using the medical
information provided at this site shall be your sole and exclusive responsibility. You agree, at yourexpense, to indemnify, defend and hold the Children’s Oncology Group, its officers, directors, employees,
agents, members, affiliated organizations and contributors to this Site (collectively the “Indemnified Parties”)
harmless from any and all losses, liabilities, or damages (including attorneys' fees and costs) resulting fromany and all claims, causes of action, suits, proceedings, or demands against the Indemnified Parties related
to reliance on this Site for information or based on related medical care, treatment and decisions or
recommendations made using the information available on this Site. Information and content contained inthis Site is subject to protection under copyright as noted below and to other intellectual property protectionin the United States and worldwide. The Children’s Oncology Group retains excusive right, title, andinterest to the copyright and related intellectual property contained on this Site.

Health Link
Healthy living after treatment for childhood cancer

Page 3 of 3

Reducing Risk of Cancers
Version 1.1 – 9/03

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 ormore years after treatment. The risk of developing a secondary solid tumor isincreased when radiation is delivered at high doses and over large fields to children
at a young age. Newer equipment and techniques allow radiation oncologists totreat just the areas involved by cancer and shield normal tissues.

•

People who have a history of cancer in their family. Some cancer patients
have inherited gene changes (mutations) that increase the chances of getting asecond cancer. But overall, these inherited changes are relatively uncommon andaccount for less than 10 percent of patients with cancer. Doctors suspect thepresence of a cancer gene when a family history shows multiple cancers among
young people in every generation, or when cancer occurs in both sides of pairedorgans (such as the eyes, breasts, kidneys, etc.) If you have any questions or thinkthat cancer may “run in your family” you should talk to your healthcare provider. A
review of your family medical history will tell whether genetic counseling or testingis 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
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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.

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Reducing Risk of Cancers
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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, CRNP. 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, CRNP 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.

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Reducing Risk of Cancers
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Disclaimer: This document referred to as Health Link, entitled, “Health Link, Healthy living after treatment
for childhood cancer”, and information contained within this Health Link document, whether available inprint format (such as a brochure) or electronic format (such as a document posted on a website) (with such
document and information hereinafter known as the “Site”) does NOT provide medical advice. This Site(including text and related graphics) is for informational purposes only. Such information is not intended foruse in the diagnosis, medical treatment, or care of any person; nor is this information intended to substitutefor professional medical advice, diagnosis or treatment. Always seek the advice of your physician or otherqualified health provider with any questions you may have regarding a medical condition and do not rely on
this Site. No endorsement of any specific tests, products, or procedures is made by the Children’s
Oncology Group, by any contributor to the Site, or by any Children’s Oncology Group affiliated party andreliance on the information contained within this Site is at your own risk. While the Children’s Oncology
Group has made every attempt to assure that the content of this Site is accurate and complete as of thedate of publication, no warranty or representation, express or implied, is made as to the validity or
sufficiency of the information contained herein. No liability is assumed by the Children’s Oncology Group or
any affiliated party thereof. You acknowledge that the Children’s Oncology Group and any contributors to
the Site are not engaged in the practice of medicine and that all decisions made using the medical
information provided at this site shall be your sole and exclusive responsibility. You agree, at yourexpense, to indemnify, defend and hold the Children’s Oncology Group, its officers, directors, employees,
agents, members, affiliated organizations and contributors to this Site (collectively the “Indemnified Parties”)
harmless from any and all losses, liabilities, or damages (including attorneys' fees and costs) resulting fromany and all claims, causes of action, suits, proceedings, or demands against the Indemnified Parties related
to reliance on this Site for information or based on related medical care, treatment and decisions or
recommendations made using the information available on this Site. Information and content contained inthis Site is subject to protection under copyright as noted below and to other intellectual property protectionin the United States and worldwide. The Children’s Oncology Group retains excusive right, title, andinterest to the copyright and related intellectual property contained on this Site.

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School & Learning Issues
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School and Learning Issues After Childhood Cancer:
Information for Parents and Teachers
As treatment for childhood cancer has improved, more and more children are becoming
long-term survivors. Often, treatment received for childhood cancer includes therapy tocontrol or prevent spread of the disease to the brain and/or spinal cord (central nervous
system). Although very effective for treatment of cancer, chemotherapy, radiation, or
surgery to the brain sometimes causes problems with thinking, remembering, andlearning. These types of problems are called “cognitive late effects.” Very young
children (less than 5 and particularly less than 2 years old at the time of treatment),
whose brains are growing and developing, are more at risk than older children or teens.
Each child is unique, and many will not have any cognitive late effects. However, it iswise for parents and teachers to be aware of the potential for these problems, so thatchildren and teens at risk can be monitored closely and provided with extra help if theneed arises.

Healthy living after treatment for childhood cancer

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What learning problems are associated with childhood cancer treatment?
The brain is a very complex structure that continues to grow and develop throughout
childhood and adolescence. Although problems are occasionally evident right away
(such as after brain surgery or high doses of brain radiation), many problems do not
become apparent until years after therapy is completed.
Signs of common learning problems include trouble with:• Handwriting (ability to write quickly and accurately).
• Spelling.
• Reading (particularly reading comprehension).
• Understanding math concepts, remembering math facts, comprehending
math symbols, sequencing, and working with columns and graphs• Difficulty in using calculators or computers.
• Auditory or visual language processing (trouble with vocabulary, blending
sounds, and syntax).
• Concentration or attention span (“spacing out”). Some children become either
inattentive or hyperactive or both.
• Slow processing speed (taking longer to comprehend and respond to new
information), including trouble keeping pace with new material and trouble
completing tasks within allotted time.
• Memory, especially problems with short-term memory, storage of new
information, and information retrieval (such as trouble following multi-part
instructions).
• Planning and organizational skills (sequencing).
• Coordination of visual and motor abilities (such as problems rememberingand copying shapes).
• Social maturity and social skills (such as problems detecting social cues).
• Problem-solving (particularly when the problem has not been previously
encountered).
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School & Learning Issues
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These late effects can cause changes in learning style as well as social behavior. Somechildren and teens will have an overall decline in intellectual ability (IQ) over time, butmany survivors do not. Significant declines in IQ scores are usually associated with highradiation doses, such as those given for brain tumors, especially when given to a very
young child.
For children with brain tumors, the tumor location also influences the type and severity oflearning disabilities that may develop. For example, children with temporal lobe tumors
may have problems with memory. Surgery to the brain can also cause many late effects,
and can vary in severity depending on the part of the brain that was operated on, theamount of healthy tissue removed, and complications occurring after surgery. Learning
may also be affected by hydrocephalus, vision problems, hearing problems, and by
medications used to treat seizures.
Cognitive late effects can affect survivors’ education, social life, relationships, and job
performance. The effect on individual children is quite variable. Some children have nolate effects, and some develop very subtle disabilities, while others develop life-altering
problems.
What testing is recommended?
Any child who has had any of the following treatment(s) for childhood cancer should
undergo a formal neuropsychological evaluation by a pediatric psychologist at entry into
long-term follow-up:••••

Methotrexate. High-dose intravenous (IV) or intrathecal (IT)Cytarabine. High-dose intravenous (IV)
Neurosurgery. Surgery involving the brain or spinal cord
Radiation to the head, brain (cranial), or total body (TBI).

These tests usually take four to six hours, and can be done over two days for younger
children or those who fatigue easily. The psychologist gives a series of general tests
appropriate for age level, then another series of more and more specific subtests basedon the results of the general ones. Pediatric psychologists usually make the testing fun
for children. Parent(s) are usually interviewed separately. Neuropsychological tests arevery different from tests that measure educational level. If problems are identified,referrals for appropriate educational interventions can then be initiated.
Even if the baseline neuropsychological evaluation is normal and the child is having nolearning problems, it is important for parents and teachers to remain vigilant. Further
neuropsychological evaluations may be indicated if:••••

The child begins experiencing any of the learning problems listed earlier
The child’s school performance is declining
It takes much longer than usual for the child to complete assignments
The child is becoming frustrated with school

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It is sometimes difficult to recognize the need for evaluation because children affected byradiation and/or chemotherapy can often think clearly and reason well and they may be
above average academically in several areas. They may fall behind their classmates,
however, on tasks that rely on processing skills, short-term memory, sequential
operations, and organizational ability (especially visual). If a learning problem is
identified, special accommodations or services can be requested to help maximize thechild’s learning potential. Many children with learning problems do extremely well inschool with appropriate accommodations.
What can be done to help with learning problems?
The first step is usually to schedule a meeting with the child’s school in order to develop
a plan. An Individualized Educational Plan (IEP) will probably be needed (see further
information about this below). Examples of strategies that are often helpful for children
with learning problems related to cancer treatment include:
•
•

•
•
•
•
•

•
•

Seating near the front of the classroom to diminish distraction.
Minimizing the amount of written work required. Children with learning
difficulties are often better able to demonstrate their knowledge verbally rather
than in written form.
Use of tape-recorded (audio) textbooks.
Tape-recording classroom lectures instead of taking notes.
Use of a computer keyboard instead of handwriting.
Use of a calculator for math.
Modification of test requirements, including extending or eliminating time limits
and avoiding computerized answer sheets (such as “scan sheets” or“bubbles”).
Assignment of a classroom aide.
Extra help with math, spelling, reading, and organizational skills.

Legal rights related to appropriate public education (in the United States)
In the United States, three public laws protect rights of people with disabilities, including
learning problems related to cancer treatment. These laws are:
The Americans with Disabilities Act (ADA)
This law protects against discrimination in employment, transportation,communication, government and public accommodations for people with disabilities.
Children who have had cancer are protected from discrimination under this law.
The Individuals with Disabilities Education Act (IDEA)IDEA requires that every public school must provide free and appropriate education in
the least restrictive environment to all eligible individuals between the ages of 3 and21 years. This means that for children who qualify, the school must provide (free ofcharge) special education programs, speech therapy, occupational therapy, physicaltherapy, psychological services, augmentative communication techniques andtechnology, and other interventions as needed to help the child learn. The major
provisions of these laws are as follows:

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All children, regardless of disability, are entitled to a free and appropriate
public education and necessary related services. Schools are required toprovide an individually designed instructional program for every eligible
child, including early intervention programs for at-risk infants and toddlers.
• Children will receive fair testing to determine if they need special education
services.
• Parents of children with disabilities may participate in the planning anddecision-making for their child’s special education.
• Children with disabilities will be educated in the least restrictive
environment, usually with children who are not disabled.
• Parents have the right to challenge the decisions of the school system, withdisputes being resolved by an impartial third party.
See http://www.ed.gov/offices/OSERS/IDEA/ for the full text of the IDEA act, withrelated information and updates.
The Rehabilitation Act (“Section 504”)
Childhood cancer survivors may also be eligible for services and accommodations
under Section 504 of the federal Rehabilitation Act. This law applies when the childdoes not meet the eligibility requirements for specially designed instruction, but stillneeds accommodations to perform successfully in school. For example, special
accommodations to address health needs can include a water bottle on the desk,
additional time to get to class, more time to finish written assignments, or eliminationof timed test requirements.
These laws cover survivors of cancer whose medical problems affect theireducational performance, under the categories known as “other health impaired”(OHI), “traumatically brain injured,” or “learning disabled.” Special education services
are also available for children with visual or hearing impairments or if the child’s
medical condition limits energy, alertness, or strength. Many survivors do not needspecial help in school, but those who do have a legal right to it.
If special educational services are needed, how can they be obtained?
Several steps are necessary in order to obtain specialized educational services: The
steps needed are: (1) referral, (2) evaluation, (3) eligibility, (4) developing an
individualized education plan (IEP) and (5) annual review.
Referral: Parents, teachers, or healthcare providers can make a referral by
writing to the school principal to request special education testing. The request
should state that the child is “health impaired” due to treatment for cancer,
provide an outline of relevant problems, and request assessments and an IEP
meeting.
Evaluation: Once the referral is made, an evaluation is necessary to determine if
the child needs additional help, and if so, what types of help would be mostbeneficial. Neuropsychological testing (if not yet performed) should be done at
this time.

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School & Learning Issues
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Eligibility: After the evaluation, a conference is held to discuss the results andreach conclusions about what actions will be necessary in the future.
Individualized Education Plan (IEP): This is a written document describing thespecial education program and any other related services specifically designed tomeet the individual needs of the child identified with learning problems. Parents
and professional educators develop it together. Any specific accommodations
needed by the child should be included.
Annual Review: The written IEP plan should be reviewed and updated annuallyto assure that it continues to meet the child’s educational needs.
Early intervention services for preschoolers
Federal law also mandates early intervention services for disabled infants and toddlers,and in some cases, children at risk of having developmental delays. Infants, toddlers, orpreschoolers with cancer may be eligible for these services in order to avoid
developmental delays caused by cancer treatments. These services are administeredeither by the school system or the state health department. You can find out which
agency to contact by asking the hospital social worker or by calling the special education
director for your school district. The law requires services not only for the infants orpreschoolers, but for the family as well. Therefore, instead of an IEP, an Individualized
Family Service Plan (IFSP) is developed.
Services for older students
Transition planning (for college or job training) should begin in the early years of middle
school, when the student’s peers are beginning to gain work skills and accumulatecredits toward high school graduation. For some survivors, extra support will be needed
to help make the transition from high school to adulthood go smoothly. The writtentransition plan is contained in the Individual Transition Plan (ITP). Students planning toattend trade school, a two-year community college program, or a four-year college
program need information far in advance regarding which high school courses will be
required for entry. This is especially important for those students with disabilities whocarry a lighter course load, as they may need to make up some credits in summer schoolor via correspondence courses.
Transition programs should address the move from high school to trade school,community college, or a four-year college program. Students are eligible for publicly
funded education and/or services until age 22 if needed. Tuition in some programs may
be covered for some students, in full or in part. Special education services and help forstudents with learning disabilities are available on campus and in the dormitories atmany colleges.
Additional information from the National Information Center for Children and Youth with
Disabilities (phone: 1-800-695-0285, website: www.nichcy.org).

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Adapted by Wendy Landier, CPNP, March 2003, from “Cognitive Late Effects in Leukemia
Survivors” by Nancy Keene and Kevin Oeffinger MD, Candlelighters Quarterly, Summer 2001,
and “Cognitive Late Effects to the Brain, Part II”, by Nancy Keene and Kevin Oeffinger MD,
Candlelighters Quarterly, Fall 2001, with permission from Candlelighters Childhood Cancer
Foundation (phone: 800-366-2223, internet: www.candlelighters.org.)
Nancy Keene is co-author of Childhood Cancer Survivors: A Practical Guide to Your Future(O’Reilly & Associates, Sebastopol, CA, 2000)
Kevin Oeffinger, MD directs the After the Cancer Experience Young Adult Program for childhood
cancer survivors and is a Professor at the University of Texas Southwestern Medical Center in
Dallas, TX
Wendy Landier, RN, MSN, CPNP, CPON®, is a pediatric nurse practitioner and assistant directorof the Survivorship Clinic at City of Hope National Medical Center in Duarte, CA
Reviewed by Melissa Hudson MD and Smita Bhatia MD, MPH.

Disclaimer: This document referred to as Health Link, entitled, “Health Link, Healthy living after treatment
for childhood cancer”, and information contained within this Health Link document, whether available in print
format (such as a brochure) or electronic format (such as a document posted on a website) (with such
document and information hereinafter known as the “Site”) does NOT provide medical advice. This Site(including text and related graphics) is for informational purposes only. Such information is not intended foruse in the diagnosis, medical treatment, or care of any person; nor is this information intended to substitutefor professional medical advice, diagnosis or treatment. Always seek the advice of your physician or otherqualified health provider with any questions you may have regarding a medical condition and do not rely on
this Site. No endorsement of any specific tests, products, or procedures is made by the Children’s Oncology
Group, by any contributor to the Site, or by any Children’s Oncology Group affiliated party and reliance on
the information contained within this Site is at your own risk. While the Children’s Oncology Group has
made every attempt to assure that the content of this Site is accurate and complete as of the date of
publication, no warranty or representation, express or implied, is made as to the validity or sufficiency of theinformation contained herein. No liability is assumed by the Children’s Oncology Group or any affiliatedparty thereof. You acknowledge that the Children’s Oncology Group and any contributors to the Site are notengaged in the practice of medicine and that all decisions made using the medical information provided at
this site shall be your sole and exclusive responsibility. You agree, at your expense, to indemnify, defend
and hold the Children’s Oncology Group, its officers, directors, employees, agents, members, affiliatedorganizations and contributors to this Site (collectively the “Indemnified Parties”) harmless from any and all
losses, liabilities, or damages (including attorneys' fees and costs) resulting from any and all claims, causesof action, suits, proceedings, or demands against the Indemnified Parties related to reliance on this Site for
information or based on related medical care, treatment and decisions or recommendations made using theinformation available on this Site. Information and content contained in this Site is subject to protection
under copyright as noted below and to other intellectual property protection in the United States andworldwide. The Children’s Oncology Group retains excusive right, title, and interest to the copyright andrelated intellectual property contained on this Site.

Health Link
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Scoliosis & Kyphosis
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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

Healthy living after treatment for childhood cancer

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What is kyphosis?
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
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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 assistantdirector 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.

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Scoliosis & Kyphosis
Version 1.1 – 9/03

Disclaimer: This document referred to as Health Link, entitled, “Health Link, Healthy living after treatment
for childhood cancer”, and information contained within this Health Link document, whether available in print
format (such as a brochure) or electronic format (such as a document posted on a website) (with such
document and information hereinafter known as the “Site”) does NOT provide medical advice. This Site(including text and related graphics) is for informational purposes only. Such information is not intended foruse in the diagnosis, medical treatment, or care of any person; nor is this information intended to substitutefor professional medical advice, diagnosis or treatment. Always seek the advice of your physician or otherqualified health provider with any questions you may have regarding a medical condition and do not rely on
this Site. No endorsement of any specific tests, products, or procedures is made by the Children’s Oncology
Group, by any contributor to the Site, or by any Children’s Oncology Group affiliated party and reliance on
the information contained within this Site is at your own risk. While the Children’s Oncology Group has
made every attempt to assure that the content of this Site is accurate and complete as of the date of
publication, no warranty or representation, express or implied, is made as to the validity or sufficiency of theinformation contained herein. No liability is assumed by the Children’s Oncology Group or any affiliatedparty thereof. You acknowledge that the Children’s Oncology Group and any contributors to the Site are notengaged in the practice of medicine and that all decisions made using the medical information provided at
this site shall be your sole and exclusive responsibility. You agree, at your expense, to indemnify, defend
and hold the Children’s Oncology Group, its officers, directors, employees, agents, members, affiliatedorganizations and contributors to this Site (collectively the “Indemnified Parties”) harmless from any and all
losses, liabilities, or damages (including attorneys' fees and costs) resulting from any and all claims, causesof action, suits, proceedings, or demands against the Indemnified Parties related to reliance on this Site for
information or based on related medical care, treatment and decisions or recommendations made using theinformation available on this Site. Information and content contained in this Site is subject to protection
under copyright as noted below and to other intellectual property protection in the United States andworldwide. The Children’s Oncology Group retains excusive right, title, and interest to the copyright andrelated intellectual property contained on this Site.

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Single Kidney
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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.

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What follow up is recommended?
•

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.

•

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

What can I do to keep my kidney healthy?
•

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

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

•

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

•

Use non-steroidal anti-inflammatory drugs with caution. These include pain or
fever medicines (over-the-counter and by prescription) that contain aspirin,
ibuprofen, acetaminophen or naproxen. These medications have been known tocause kidney damage (analgesic nephropathy), especially when taken 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 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.

•

Some healthcare providers recommend that people with only one kidney should
avoid contact sports or use a kidney guard if participating in contact sports. Weurge you to discuss your kidney status with your healthcare provider before
making decisions about participation in sports and recreational activities.
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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 (lapbelts should be worn across the hips, not around the waist), and to use common
sense when bicycling (avoid racing and stunt riding), in order to prevent kidney
injury whenever possible. If you are involved in an accident and a kidney injury issuspected, 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 assistantdirector 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.

Health Link
Healthy living after treatment for childhood cancer

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Single Kidney
Version 1.1- 9/03

Disclaimer: This document referred to as Health Link, entitled, “Health Link, Healthy living after treatment
for childhood cancer”, and information contained within this Health Link document, whether available inprint format (such as a brochure) or electronic format (such as a document posted on a website) (with such
document and information hereinafter known as the “Site”) does NOT provide medical advice. This Site(including text and related graphics) is for informational purposes only. Such information is not intended foruse in the diagnosis, medical treatment, or care of any person; nor is this information intended to substitutefor professional medical advice, diagnosis or treatment. Always seek the advice of your physician or otherqualified health provider with any questions you may have regarding a medical condition and do not rely on
this Site. No endorsement of any specific tests, products, or procedures is made by the Children’s
Oncology Group, by any contributor to the Site, or by any Children’s Oncology Group affiliated party andreliance on the information contained within this Site is at your own risk. While the Children’s Oncology
Group has made every attempt to assure that the content of this Site is accurate and complete as of thedate of publication, no warranty or representation, express or implied, is made as to the validity or
sufficiency of the information contained herein. No liability is assumed by the Children’s Oncology Group or
any affiliated party thereof. You acknowledge that the Children’s Oncology Group and any contributors to
the Site are not engaged in the practice of medicine and that all decisions made using the medical
information provided at this site shall be your sole and exclusive responsibility. You agree, at yourexpense, to indemnify, defend and hold the Children’s Oncology Group, its officers, directors, employees,
agents, members, affiliated organizations and contributors to this Site (collectively the “Indemnified Parties”)
harmless from any and all losses, liabilities, or damages (including attorneys' fees and costs) resulting fromany and all claims, causes of action, suits, proceedings, or demands against the Indemnified Parties related
to reliance on this Site for information or based on related medical care, treatment and decisions or
recommendations made using the information available on this Site. Information and content contained inthis Site is subject to protection under copyright as noted below and to other intellectual property protectionin the United States and worldwide. The Children’s Oncology Group retains excusive right, title, andinterest to the copyright and related intellectual property contained on this Site.

Health Link
Healthy living after treatment for childhood cancer

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Skin Health
Version 1.1 – 9/03

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 offibrotic 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 andscrapes, 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 hostdisease (GVHD), sometimes develop scleroderma. In this condition, the donor whiteblood 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 thejoints 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
bone marrow 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.

Health Link
Healthy living after treatment for childhood cancer

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Skin Health
Version 1.1 – 9/03

Disclaimer: This document referred to as Health Link, entitled, “Health Link, Healthy living after treatment
for childhood cancer”, and information contained within this Health Link document, whether available inprint format (such as a brochure) or electronic format (such as a document posted on a website) (with such
document and information hereinafter known as the “Site”) does NOT provide medical advice. This Site(including text and related graphics) is for informational purposes only. Such information is not intended foruse in the diagnosis, medical treatment, or care of any person; nor is this information intended to substitutefor professional medical advice, diagnosis or treatment. Always seek the advice of your physician or otherqualified health provider with any questions you may have regarding a medical condition and do not rely on
this Site. No endorsement of any specific tests, products, or procedures is made by the Children’s
Oncology Group, by any contributor to the Site, or by any Children’s Oncology Group affiliated party andreliance on the information contained within this Site is at your own risk. While the Children’s Oncology
Group has made every attempt to assure that the content of this Site is accurate and complete as of thedate of publication, no warranty or representation, express or implied, is made as to the validity or
sufficiency of the information contained herein. No liability is assumed by the Children’s Oncology Group or
any affiliated party thereof. You acknowledge that the Children’s Oncology Group and any contributors to
the Site are not engaged in the practice of medicine and that all decisions made using the medical
information provided at this site shall be your sole and exclusive responsibility. You agree, at yourexpense, to indemnify, defend and hold the Children’s Oncology Group, its officers, directors, employees,
agents, members, affiliated organizations and contributors to this Site (collectively the “Indemnified Parties”)
harmless from any and all losses, liabilities, or damages (including attorneys' fees and costs) resulting fromany and all claims, causes of action, suits, proceedings, or demands against the Indemnified Parties related
to reliance on this Site for information or based on related medical care, treatment and decisions or
recommendations made using the information available on this Site. Information and content contained inthis Site is subject to protection under copyright as noted below and to other intellectual property protectionin the United States and worldwide. The Children’s Oncology Group retains excusive right, title, andinterest to the copyright and related intellectual property contained on this Site.

Health Link
Healthy living after treatment for childhood cancer

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Splenic Precautions
Version 1.1 – 9/03

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, atleast 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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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, CRNP, 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.

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

Page 3 of 4

Splenic Precautions
Version 1.1 – 9/03

Disclaimer: This document referred to as Health Link, entitled, “Health Link, Healthy living after treatment
for childhood cancer”, and information contained within this Health Link document, whether available in print
format (such as a brochure) or electronic format (such as a document posted on a website) (with such
document and information hereinafter known as the “Site”) does NOT provide medical advice. This Site(including text and related graphics) is for informational purposes only. Such information is not intended foruse in the diagnosis, medical treatment, or care of any person; nor is this information intended to substitutefor professional medical advice, diagnosis or treatment. Always seek the advice of your physician or otherqualified health provider with any questions you may have regarding a medical condition and do not rely on
this Site. No endorsement of any specific tests, products, or procedures is made by the Children’s Oncology
Group, by any contributor to the Site, or by any Children’s Oncology Group affiliated party and reliance on
the information contained within this Site is at your own risk. While the Children’s Oncology Group has
made every attempt to assure that the content of this Site is accurate and complete as of the date of
publication, no warranty or representation, express or implied, is made as to the validity or sufficiency of theinformation contained herein. No liability is assumed by the Children’s Oncology Group or any affiliatedparty thereof. You acknowledge that the Children’s Oncology Group and any contributors to the Site are notengaged in the practice of medicine and that all decisions made using the medical information provided at
this site shall be your sole and exclusive responsibility. You agree, at your expense, to indemnify, defend
and hold the Children’s Oncology Group, its officers, directors, employees, agents, members, affiliatedorganizations and contributors to this Site (collectively the “Indemnified Parties”) harmless from any and all
losses, liabilities, or damages (including attorneys' fees and costs) resulting from any and all claims, causesof action, suits, proceedings, or demands against the Indemnified Parties related to reliance on this Site for
information or based on related medical care, treatment and decisions or recommendations made using theinformation available on this Site. Information and content contained in this Site is subject to protection
under copyright as noted below and to other intellectual property protection in the United States andworldwide. The Children’s Oncology Group retains excusive right, title, and interest to the copyright andrelated intellectual property contained on this Site.

Health Link
Healthy living after treatment for childhood cancer

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Thyroid Problems
Version 1.1 – 9/03

Thyroid Problems After Childhood Cancer
Treatment for childhood cancer sometimes damages the thyroid gland. Fortunately, lateeffects to the thyroid gland are usually very easy to treat. It is therefore important to findout if you are at risk so that problems can be identified early and treated appropriately.
What is the thyroid gland?

Healthy living after treatment for childhood cancer

Health Link

The thyroid is a small butterfly-shaped gland located in front of the trachea (windpipe) in
the lower part of the neck. It is a very sensitive gland that enlarges and becomes more
active during puberty, pregnancy, or times of great stress.
Some glands produce chemical messengers, called “hormones,” that travel throughout
the body to coordinate complicated processes such as growth, puberty, and reaction tostress. Disruptions in the balance of these chemical messengers can profoundly affectboth health and quality of life.
Two hormones secreted by the thyroid gland, thyroxine (T4) and triiodothyronine (T3),have far-reaching effects on almost all tissues in the body and are intimately involved inphysical growth, metabolism, and mental development. Basically, the thyroid hormones,
T3 and T4, can be thought of as regulators of metabolism. Thus, when the thyroid
hormones are low, the body’s metabolism slows, resulting in fatigue, a lowered heart
rate and blood pressure, slowing of the intestines (leading to constipation), and aconstant feeling of being cold. On the other hand, when one or both of the thyroid
hormone levels is high, the body’s metabolism is increased, resulting in an increased
heart rate and blood pressure, increased activity of the intestines (leading to diarrhea),
and a constant feeling of being hot.
The pituitary, a gland in the brain, makes a chemical called thyroid-stimulating hormone(TSH), which travels in the bloodstream to the thyroid. As you might guess from thename, thyroid-stimulating hormone stimulates the thyroid gland to make the thyroid
hormones T3 and T4. When levels of T3 and T4 are low, then the brain increases the
production of TSH, which in turn stimulates the thyroid gland to produce more T3 andT4. Conversely, if the level of either T3 or T4 is too high, the brain senses this anddecreases the production of TSH, which leads to less production of T3 and T4.
The possible late effects
Damage to the thyroid gland resulting from childhood cancer therapy is usually the
result of radiation to the brain or neck. Several different types of thyroid problems candevelop.
Primary hypothyroidism. (primary = damage to the thyroid gland; hypo = low;
thyroidism = disease of the thyroid). In this type of hypothyroidism, the TSH is elevatedin response to low levels of thyroid hormone (T3 and T4), resulting from direct damage
to the thyroid gland.

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Central hypothyroidism. (central = damage in the pituitary gland/brain). In this type of
hypothyroidism, both the TSH and T4 levels are low due to damage to the thyroid’scontrol center (pituitary gland) in the brain.
Compensated hypothyroidism. This occurs when the thyroid is working too hard trying
to maintain the correct hormone levels. There are usually no symptoms, but blood tests
show normal T4 with elevated TSH levels. Survivors with compensated hypothyroidism
are sometimes given supplemental thyroid hormone to allow the gland to rest.
Hyperthyroidism. (hyper = high) This occurs when too much T3 or T4 is produced,
causing the body to use energy faster than it should.
Thyroid nodules and thyroid cancer. Radiation to the neck can cause abnormal
growths (nodules) of the thyroid gland. These nodules can be benign (not cancerous) ormalignant (thyroid cancer).
What are the symptoms of thyroid damage?
Signs and symptoms of an under active thyroid (hypothyroidism) can include:
•
•
•
•
•
•
•
•
•
•
•
•
•
•
•
•
•
•
•

Fatigue or lethargy
HoarsenessDifficulty concentrating
Depression or mood changes
Constipation
Weakness
Intolerance to cold
Swelling around the eyes
Poor growth
Delayed puberty
Puffy face and hands
Weight gain
Dry or rough skin
Brittle hair
Joint or muscle aches
Slow heart rate
Low blood pressure
High cholesterol
Decreased tolerance for exercise

Signs and symptoms of an overactive thyroid (hyperthyroidism) can include:
•
•
•
•
•
•

Nervousness or anxiety
Difficulty concentrating
Fatigue
Muscle weakness or tremor
Rapid or irregular heartbeat
Excessive sweating

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Thyroid Problems
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•
•
•
•
•
•
•

Heat intolerance
Diarrhea
Weight loss
Menstrual irregularities
Protruding eyes
Tenderness in the neck
Decreased tolerance for exercise

Thyroid cancer is generally a slow-growing cancer with few signs or symptoms. Usually,a painless, hard mass (lump) in the thyroid gland can be felt. One might also experiencehoarseness, problems with swallowing, enlarged lymph nodes in the neck and difficulty
breathing.
Who is at risk?
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/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/spine (craniospinal)
Eye/orbit
Ear/infratemporal region (midfacial area behind the cheekbones)
Nose, mouth, and/or throat (nasopharyngeal, oropharyngeal)
Total body irradiation (TBI)

Female gender, higher radiation dose, and treatment at a young age also increase thelikelihood of developing a thyroid problem after childhood cancer treatment. Thyroid
problems may occur soon after radiation, but generally does not occur until several
years later. If treated promptly, thyroid problems are easily managed.
What follow up is needed for those at risk?
TSH and Free T4 levels should be checked (by blood test) every year and any time
symptoms develop. During yearly follow-up visits, the thyroid gland should be palpated(felt by hand) and growth for children and teens should be plotted on a growth chart.

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During periods of rapid growth, healthcare providers may recommend more frequentmonitoring of thyroid levels. Thyroid problems can occur years or decades after cancer
treatment, so a yearly check is necessary for the rest of your life if you are at risk.
Female survivors at risk for thyroid problems who are planning to become pregnant
should have their thyroid levels checked before attempting pregnancy. It is important to
do this before becoming pregnant, because mothers with thyroid disease have a higher
chance of having babies with developmental problems. It is also important to monitor
thyroid levels periodically during pregnancy.
How is damage to the thyroid treated?
Treatment for thyroid problems is generally easy and effective. 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 asurgeon or other specialist for evaluation and management.
Primary hypothyroidism (high TSH, low or normal T4): Daily treatment with thyroid pills
is required. Treatment is for life. Stopping the medication will result in a recurrence of thesymptoms of hypothyroidism.
Compensated hypothyroidism (mildly elevated TSH, normal T4): Daily treatment withthyroid pills may be used to normalize your levels.
Central hypothyroidism (low TSH, low T4): Daily treatment with thyroid pills.
Hyperthyroidism (low TSH, high T3 or T4): The overproduction of the thyroid
hormones, T3 or T4, can cause life-threatening changes to the body, so moreaggressive therapies are required to make the thyroid produce less thyroid hormone, or
to completely stop thyroid hormone production. There are three options to treat
hyperthyroidism:• Medication that prevents thyroid hormone production (generally only atemporary treatment).
• Surgery to remove most of the gland.
• Thyroid ablation (destroying the hormone-producing cells in the gland bydrinking a radioactive liquid called I-131).
The goal of treatment for hyperthyroidism is to make the patient either euthyroid (normal
thyroid level) or hypothyroid (low thyroid level), which can then be treated with a daily
thyroid pill.
Thyroid nodules: People with nodules detected by palpation need additional testing.
This is generally done with an ultrasound (picture made using sound-waves) and biopsy(sampling the thyroid tissue to check for cancer cells).
Thyroid cancer: Thyroid cancer is usually very treatable. Depending upon the type andstage of thyroid cancer, treatment generally includes surgery to remove almost all of the

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Thyroid Problems
Version 1.1 – 9/03

gland followed by thyroid gland ablation (destroying any remaining thyroid tissue by
drinking a radioactive liquid called I-131). The person then takes daily thyroid pills andgets periodic check ups.
Thyroid problems are common in childhood cancer survivors who had head or neckradiation. However, treatment is generally easy and effective. Be sure to discuss yourthyroid gland with your healthcare provider at your yearly follow-up visits.

Adapted by Wendy Landier, CPNP, March 2003, from “Late Effects to the Thyroid Gland” byNancy Keene and Kevin Oeffinger MD, Candlelighters Quarterly, Spring 2001, with permission
from Candlelighters Childhood Cancer Foundation (phone: 800-366-2223, internet:
www.candlelighters.org).
Nancy Keene is co-author of Childhood Cancer Survivors: A Practical Guide to Your Future(O’Reilly & Associates, Sebastopol, CA, 2000)
Kevin Oeffinger, MD directs the After the Cancer Experience Young Adult Program for childhood
cancer survivors and is a Professor at the University of Texas Southwestern Medical Center in
Dallas, TX
Wendy Landier, RN, MSN, CPNP, CPON®, is a pediatric nurse practitioner and assistant directorof the Survivorship Clinic at City of Hope National Medical Center in Duarte, CA
Reviewed by Charles Sklar MD, Melissa Hudson MD and Smita Bhatia MD, MPH.

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