Long-Term Follow-Up Guidelines

Transcription

1 Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers Version 2.0 March 2006 Appendix II Patient Education Materials Health Links All rights reserved worldwide

2 Index to Patient Education Materials ( Health Links ) Health Link - Abbreviated Title Health Link - Full Title Amputation Late Effects after Amputation for Childhood Cancer 107 Associated Guideline Section(s) Bladder Health Bladder Health After Childhood Cancer 11, 12, 80, 81, 82 Bleomycin Alert Bleomycin Alert 29 Bone Health Keeping Your Bones Healthy after Childhood Cancer 22, 31, 97 Breast Cancer Breast Cancer following Treatment for Childhood Cancer: Are You at Risk? 68, 137 Cataracts Cataracts after Treatment for Childhood Cancer 10, 33, 56 Central Adrenal Insufficiency Endocrine Problems after Childhood Cancer: Central Adrenal Insufficiency Chronic Pain Chronic Pain after Childhood Cancer 1 Colorectal Cancer Colorectal Cancer Following Treatment for Childhood Cancer: Are You at Risk? Cystectomy Cystectomy and Childhood Cancer , 139 Dental Health Dental Health Following Childhood Cancer Treatment 6, 59, 60, 100, 142 Diet and Physical Activity Educational Issues Staying Healthy through Diet and Physical Activity 17, 48, 49, 71 Educational Issues Following Treatment for Childhood Cancer Emotional Issues Emotional Issues after Childhood Cancer 1 Eye Health Female Health Issues Finding Healthcare Keeping Your Eyes Healthy after Treatment for Childhood Cancer Female Health Issues after Treatment for Childhood Cancer Finding and Paying for Healthcare after Treatment for Childhood Cancer 1, 14, 18, 25, 43, 58, , 99, 110 7, 54, 83, 84, 111, 123, 124 GI Health Gastrointestinal Health after Childhood Cancer 73, 75, 76, 77, 95, 104, 112 Growth Hormone Deficiency Endocrine Problems after Childhood Cancer: Growth Hormone Deficiency Hearing Loss Hearing Loss after Treatment for Childhood Cancer 14, 58 Heart Health Keeping Your Heart Healthy after Treatment for Childhood Cancer Hepatitis Hepatitis after Childhood Cancer 3, 4 Hyperprolactinemia Hypopituitarism Introduction to Long- Term Follow-Up Endocrine Problems after Childhood Cancer: Hyperprolactinemia Endocrine Problems after Childhood Cancer: Hypopituitarism Introduction to Long-Term Follow-Up after Treatment for Childhood, Adolescent, or Young Adult Cancer , , 53, 54, 55 Kidney Health Kidney Health after Childhood Cancer 13, 16, 23, 79, 109, 114 Limb Sparing Procedures Limb Sparing Procedures after Bone Cancer 113 Liver Health Liver Health after Childhood Cancer 21, 24, 74, 95 1 Index Page 1

3 - Abbreviated Title Male Health Issues Neurogenic Bladder Health Link - Full Title Male Health Issues after Treatment for Childhood Cancer Neurogenic Bladder Following Treatment for Childhood Cancer Osteonecrosis Osteonecrosis 32, 96 Osteoradionecrosis Osteoradionecrosis after Childhood Cancer 61 Peripheral Neuropathy Precocious Puberty Associated Guideline Section(s) 7, 54, 86, 87, 121, 125, Peripheral Neuropathy 15, 35 Endocrine Problems after Childhood Cancer: Precocious Puberty Pulmonary Health Pulmonary Health 9, 29, 70, 101, 130 Raynaud s Phenomenon Reducing Risk of Cancers Scoliosis and Kyphosis Raynaud s Phenomenon 36 Reducing the Risk of Second Cancers 8, 27, 37, 38, 39, 92, 93, 138, 140, 141, 142, 143, 144 Scoliosis and Kyphosis after Treatment for Childhood Cancer 51 89, 90 Single Kidney Health Keeping Your Single Kidney Healthy 13*, 16*, 23*, 79*, 114 (*mononephric patients only) Skin Health Skin Health after Childhood Cancer 39, 40, 98, 144 Splenic Precautions Precautions for People Without a Functioning Spleen 72, 103, 131 Thyroid Problems Thyroid Problems after Childhood Cancer 53, 62, 63, 64, 65, 132, 134, 135 Index Page 2

4 Amputation Late Effects after Amputation for Childhood Cancer Treatment for a childhood bone or soft tissue tumor of the arms or legs may include an amputation as part of the treatment. Sometimes an amputation is needed because of complications, such as an infection. This Health Link will focus on the possible late effects from amputation due to childhood cancer. What are the potential late effects of amputation? Skin blisters, redness, or bruising from a poorly fitting prosthesis Phantom limb pain (perception of pain coming from the area where the limb used to be) Shooting pains, severe cramping, or a burning sensation in the amputated limb Skin breakdown and slow wound healing of the remaining limb Back or other muscle pain (due to increased use of other muscle groups and limbs to make up for decreased function in the amputated extremity) Emotional distress related to change in body image Increased energy or effort to do daily activities Increased weight gain (due to decreased physical activity) Development of diabetes (because of weight gain, lack of physical activity and poor food choices) What are the follow-up recommendations for amputees? Keep the residual limb clean and dry Check the skin daily for color changes and skin break down Wash items that are used in the prosthesis (stump shrinker, elastic garments, stump socks) regularly Have an evaluation of the prosthesis fit every 6 months until you are fully grown, then once a year, and any time problems arise Work with a physical and occupational therapist to develop a plan for gait training, activities of daily living, and an exercise plan (including range of motion, strength, agility, and balance) Have a yearly physical examination Maintain a healthy diet and activity level What are the signs that your prosthesis needs the attention of a prosthetist? You hear noises of any kind (squeaking, popping, clicking, etc.) You break any part of the prosthesis You need new supplies All rights reserved worldwide Page 1 of 3

5 Amputation You have outgrown the prosthesis You have chronic pain while wearing your prosthesis What other issues occur after amputation? Dealing with peer pressure and body image change Coping with "being different" Feeling anxious, unsure, or sad Paying for a new prosthesis Coping with environments that may or may not be accessible. Using public transportation (airplane, train, bus, etc.) In some cases, living with chronic pain (see related Health Link: Chronic Pain after Childhood Cancer) Where can I get help? Talk with your healthcare provider regularly to let them know of any difficulties that you may be facing. In addition, the following web sites offer resources for amputees: Provides information about "First Step, A Guide for Adjusting to Limb Loss" published by the Amputee Coalition of America. Provides further resources for education, advocacy and peer support for amputees. The first step program above is part of the ACA. Written by Tori Marchese, PhD, PT, Department of Epidemiology and Cancer Control, St. Jude Children's Research Hospital, Memphis, TN, Rajaram Nagarajan, MD, MPH, Pediatric Hematology/Oncology/BMT, University of Minnesota Cancer Center, Minneapolis, MN, and Tom Baker, CP (certified prosthetist), CFI, Memphis, TN. Reviewed by: Revonda Mosher RN, MSN, CPNP, CPON, Melissa M. Hudson MD, and Joan Darling PhD. Reference: Lusardi MM, Nielsen CC, Orthotics and Prosthetics in Rehabilitation, Butterworth-Heinemann, Boston, All rights reserved worldwide Page 2 of 3

6 Amputation Additional health information for childhood cancer survivors is available at Note: Throughout this Health Links series, the term "childhood cancer" is used to designate pediatric cancers that may occur during childhood, adolescence, or young adulthood. Health Links are designed to provide health information for survivors of pediatric cancer, regardless of whether the cancer occurred during childhood, adolescence, or young adulthood. Disclaimer and Notice of Proprietary Rights Introduction to Late Effects Guidelines and Health Links: The "Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers" and accompanying "Health Links" were developed by the Children s Oncology Group as a collaborative effort of the Late Effects Committee and Nursing Discipline. For Informational Purposes Only: The information and contents of each document or series of documents made available from by the Children s Oncology Group relating to late effects of cancer treatment and care or containing the title "Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers" or the title "Health Link", whether available in print or electronic format (including any digital format, transmission, or download from the website), shall be known hereinafter as "Informational Content". All Informational Content is for informational purposes only. The Informational Content is not intended to substitute for medical advice, medical care, diagnosis or treatment obtained from a physician or health care provider. To cancer patients (if children, their parents or legal guardians): Please seek the advice of a physician or other qualified health provider with any questions you may have regarding a medical condition and do not rely on the Informational Content. The Children s Oncology Group is a research organization and does not provide individualized medical care or treatment. To physicians and other healthcare providers: The Informational Content is not intended to replace your independent clinical judgment, medical advice, or to exclude other legitimate criteria for screening, health counseling, or intervention for specific complications of childhood cancer treatment. Neither is the Informational Content intended to exclude other reasonable alternative follow-up procedures. The Informational Content is provided as a courtesy, but not intended as a sole source of guidance in the evaluation of childhood cancer survivors. The Children s Oncology Group recognizes that specific patient care decisions are the prerogative of the patient, family, and healthcare provider. No endorsement of any specific tests, products, or procedures is made by Informational Content, the Children s Oncology Group, or affiliated party or member of the Children s Oncology Group. No Claim to Accuracy or Completeness: While the Children's Oncology Group has made every attempt to assure that the Informational Content is accurate and complete as of the date of publication, no warranty or representation, express or implied, is made as to the accuracy, reliability, completeness, relevance, or timeliness of such Informational Content. No Liability on Part of Children s Oncology Group and Related Parties/ Agreement to Indemnify and Hold Harmless the Children s Oncology Group and Related Parties: No liability is assumed by the Children's Oncology Group or any affiliated party or member thereof for damage resulting from the use, review, or access of the Informational Content. You agree to the following terms of indemnification: (i) "Indemnified Parties" include authors and contributors to the Informational Content, all officers, directors, representatives, employees, agents, and members of the Children s Oncology Group and affiliated organizations; (ii) by using, reviewing, or accessing the Informational Content, you agree, at your own expense, to indemnify, defend and hold harmless Indemnified Parties from any and all losses, liabilities, or damages (including attorneys' fees and costs) resulting from any and all claims, causes of action, suits, proceedings, or demands related to or arising out of use, review or access of the Informational Content. Proprietary Rights: The Informational Content is subject to protection under the copyright law and other intellectual property law in the United States and worldwide. The Children's Oncology Group retains excursive copyright and other right, title, and interest to the Informational Content and claims all intellectual property rights available under law. You hereby agree to help the Children s Oncology Group secure all copyright and intellectual property rights for the benefit of the Children s Oncology Group by taking additional action at a later time, action which could include signing consents and legal documents and limiting dissemination or reproduction of Informational Content. All rights reserved worldwide Page 3 of 3

7 Bladder Health Bladder Health after Childhood Cancer Certain types of cancer and certain cancer treatments can cause damage to the urinary bladder. The information in this Health Link will help you to recognize signs and symptoms of urinary bladder problems that may occur after treatment with chemotherapy or radiation for childhood cancer. What is the urinary bladder? The urinary bladder is a hollow organ that stores urine. It is located behind the pubic bone. The kidneys filter the blood and make urine, which enters the bladder through two tubes called "ureters". Urine leaves the bladder through another tube, the urethra. In women, the urethra is a short tube that opens just in front of the vagina. In men, it is longer, and passes through the prostate gland and then the penis. What are the risk factors for bladder problems? Chemotherapy with cyclophosphamide and/or ifosfamide Radiation therapy to the pelvic area What types of bladder problems can occur? Bleeding into the bladder (hemorrhagic cystitis) Scarring (fibrosis) of the bladder Bladder cancer What is hemorrhagic cystitis? Hemorrhagic cystitis is a condition in which bladder irritation results in blood in the urine. What are the symptoms of hemorrhagic cystitis? The urine color may range from slightly pink to bright red. Some people may feel like they have to urinate urgently, or that they cannot release all the urine, but there is All rights reserved worldwide Page 1 of 4

8 Bladder Health usually no pain. Hemorrhagic cystitis may occur off and on for months to years after completion of therapy. How is hemorrhagic cystitis diagnosed? Usually, blood can be seen in the urine. Sometimes, the amount of blood in the urine is so small that it is seen only during a urinalysis (lab test to examine the urine). When there is blood in the urine, a urine culture is usually done to check for infection. What can I do if I have hemorrhagic cystitis? Usually it is helpful to drink extra fluids to flush out the bladder. Avoid tea, coffee, cola beverages, and other fluids containing caffeine since they may worsen the sudden urge to urinate. If you have kidney or heart problems, check with your healthcare provider before drinking extra fluid. When should I call my healthcare provider? Call your healthcare provider any time you see blood in the urine. You should also report any fever, pain with urination, difficulty urinating, or the need to urinate urgently or frequently, because these are common symptoms of a urinary tract infection or other bladder problems. What is bladder fibrosis? Bladder fibrosis is scar tissue in the bladder. This may build up and cause the bladder wall to thicken. When this happens, the pressure inside the bladder increases. This may affect the bladder s ability to store and empty urine. Over time these changes can lead to damage to the kidneys. What are the symptoms of bladder fibrosis? Problems may include difficulty emptying the bladder, leakage of urine, or blood in the urine. Sometimes, bladder fibrosis may not cause any symptoms at all. How is bladder fibrosis diagnosed? An ultrasound of the bladder may show thickening of the bladder wall. A urologist may also perform a cystoscopy, a test that allows the doctor to look directly in the bladder through a thin, lighted tube. All rights reserved worldwide Page 2 of 4

9 Bladder Health What can I do if I think I have bladder fibrosis? If you are at risk for bladder fibrosis and have any of the symptoms described above, you should see a urologist. When should I call my healthcare provider? Call your healthcare provider anytime you have symptoms of bladder fibrosis, such as difficulty emptying the bladder, leakage of urine, or blood in the urine. What other bladder problems can occur after childhood cancer? Bladder cancer is a type of tumor that can develop in people who have been treated with cyclophosphamide or radiation involving the bladder. This is a rare type of secondary cancer due to treatment. What are the symptoms of bladder cancer? The most common symptom is blood in the urine. There may also be a need to urinate urgently or frequently. If the cancer is advanced at the time of diagnosis, pain over the bladder, in the genital area, or in the bones may be present. How is bladder cancer diagnosed? The diagnosis is usually made by doing a cystoscopy to obtain a biopsy of bladder tissue. Sometimes the diagnosis can be made by finding cancer cells in the urine. What can I do if I think I have bladder cancer? If you are concerned about whether your symptoms may represent bladder cancer, ask for a referral to a urologist. Written by Patricia Shearer MD, MS, Pediatric Hematology/Oncology, Ochsner Clinic, New Orleans, Louisiana; Michael Ritchey, MD, Pediatric Urology Associates, Phoenix, Arizona; Fernando A. Ferrer, MD, Department of Surgery, Connecticut Children s Medical Center, Hartford, Connecticut; and Sheri L. Spunt, MD, Hematology/Oncology, St. Jude Children s Research Hospital, Memphis, Tennessee. Reviewed by: Jill Meredith RN, BSN, OCN, Melissa M. Hudson MD, and Joan Darling PhD. Illustrated by Devika Bhatia. All rights reserved worldwide Page 3 of 4

10 Bladder Health Additional health information for childhood cancer survivors is available at Note: Throughout this Health Links series, the term "childhood cancer" is used to designate pediatric cancers that may occur during childhood, adolescence, or young adulthood. Health Links are designed to provide health information for survivors of pediatric cancer, regardless of whether the cancer occurred during childhood, adolescence, or young adulthood. Disclaimer and Notice of Proprietary Rights Introduction to Late Effects Guidelines and Health Links: The "Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers" and accompanying "Health Links" were developed by the Children s Oncology Group as a collaborative effort of the Late Effects Committee and Nursing Discipline. For Informational Purposes Only: The information and contents of each document or series of documents made available from by the Children s Oncology Group relating to late effects of cancer treatment and care or containing the title "Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers" or the title "Health Link", whether available in print or electronic format (including any digital format, transmission, or download from the website), shall be known hereinafter as "Informational Content". All Informational Content is for informational purposes only. The Informational Content is not intended to substitute for medical advice, medical care, diagnosis or treatment obtained from a physician or health care provider. To cancer patients (if children, their parents or legal guardians): Please seek the advice of a physician or other qualified health provider with any questions you may have regarding a medical condition and do not rely on the Informational Content. The Children s Oncology Group is a research organization and does not provide individualized medical care or treatment. To physicians and other healthcare providers: The Informational Content is not intended to replace your independent clinical judgment, medical advice, or to exclude other legitimate criteria for screening, health counseling, or intervention for specific complications of childhood cancer treatment. Neither is the Informational Content intended to exclude other reasonable alternative follow-up procedures. The Informational Content is provided as a courtesy, but not intended as a sole source of guidance in the evaluation of childhood cancer survivors. The Children s Oncology Group recognizes that specific patient care decisions are the prerogative of the patient, family, and healthcare provider. No endorsement of any specific tests, products, or procedures is made by Informational Content, the Children s Oncology Group, or affiliated party or member of the Children s Oncology Group. No Claim to Accuracy or Completeness: While the Children's Oncology Group has made every attempt to assure that the Informational Content is accurate and complete as of the date of publication, no warranty or representation, express or implied, is made as to the accuracy, reliability, completeness, relevance, or timeliness of such Informational Content. No Liability on Part of Children s Oncology Group and Related Parties/ Agreement to Indemnify and Hold Harmless the Children s Oncology Group and Related Parties: No liability is assumed by the Children's Oncology Group or any affiliated party or member thereof for damage resulting from the use, review, or access of the Informational Content. You agree to the following terms of indemnification: (i) "Indemnified Parties" include authors and contributors to the Informational Content, all officers, directors, representatives, employees, agents, and members of the Children s Oncology Group and affiliated organizations; (ii) by using, reviewing, or accessing the Informational Content, you agree, at your own expense, to indemnify, defend and hold harmless Indemnified Parties from any and all losses, liabilities, or damages (including attorneys' fees and costs) resulting from any and all claims, causes of action, suits, proceedings, or demands related to or arising out of use, review or access of the Informational Content. Proprietary Rights: The Informational Content is subject to protection under the copyright law and other intellectual property law in the United States and worldwide. The Children's Oncology Group retains excursive copyright and other right, title, and interest to the Informational Content and claims all intellectual property rights available under law. You hereby agree to help the Children s Oncology Group secure all copyright and intellectual property rights for the benefit of the Children s Oncology Group by taking additional action at a later time, action which could include signing consents and legal documents and limiting dissemination or reproduction of Informational Content. All rights reserved worldwide Page 4 of 4

11 Bleomycin Alert The lungs are very important organs that are responsible for supplying oxygen to the body and ridding it of carbon dioxide. Sometimes, treatments given for childhood cancer can cause lung damage. Because you received bleomycin during treatment for childhood cancer, it is important for you to learn about certain lung problems that can sometimes happen after treatment with bleomycin. We also suggest that you read the "Pulmonary Health" Health Link, which contains more information about your lungs and how to keep them healthy. What are the problems that can happen after treatment with bleomycin? People who received bleomycin during treatment for childhood cancer can sometimes develop lung problems many years after their treatment has been completed. These problems may include: Lung inflammation (interstitial pneumonitis) Lung scarring (pulmonary fibrosis) Breathing problems associated with high levels of oxygen and/or intravenous fluids (acute respiratory distress syndrome) What is interstitial pneumonitis? Interstitial pneumonitis is inflammation of the thin layer of tissue between the air sacs (alveoli) in the lungs. This inflammation can worsen if a person develops lung infections, such as pneumonia. Interstitial pneumonitis that occurs as a result of therapy with bleomycin sometimes develops after exposure to toxic fumes, tobacco, or high levels of oxygen given over several hours. What is pulmonary fibrosis? Bleomycin Alert Pulmonary fibrosis is the formation of scar tissue in the small air sacs (alveoli) of the lungs. This scarring makes the lungs stiffer and affects the exchange of oxygen and carbon dioxide in the alveoli. Pulmonary fibrosis may worsen over time and can sometimes lead to early heart failure. What is acute respiratory distress syndrome (ARDS)? ARDS is a serious condition that occurs when alveoli in the lungs are damaged and can no longer provide oxygen to the body. People who received bleomycin in the past may be at risk for developing ARDS, usually as a result of a combination of high levels of oxygen and large amounts of intravenous fluid given during surgery. However, the risk All rights reserved worldwide Page 1 of 3

12 Bleomycin Alert of developing ARDS is very low. If you need a medical procedure requiring oxygen or general anesthesia, be sure to tell your surgeon, anesthesiologist, and other healthcare providers that you have received bleomycin in the past for treatment of childhood cancer. What are factors that increase the risk of developing lung problems after treatment with bleomycin? High total doses of bleomycin (400 units/m 2 or more in all doses combined) Radiation to the chest or lungs, or total body irradiation (TBI) Treatment with other chemotherapy drugs that can also damage the lungs (see related Health Link: "Pulmonary Health") Exposure to high oxygen levels (such as during general anesthesia or SCUBA diving) Smoking What monitoring is recommended for people who have received bleomycin for treatment of childhood cancer? A yearly medical check-up is recommended. A chest x-ray and pulmonary function tests may show lung problems that are not apparent during a check-up. For this reason, it is helpful to have these tests done at least once (at least 2 years after completing cancer treatment) to find out if there are any problems. Your healthcare provider can decide if further testing is needed based on these results. In some cases, your healthcare provider may recommend repeating the chest x-ray and pulmonary function tests if you are scheduled for surgery that requires general anesthesia to check for changes in the lungs that could increase the risk of breathing problems during or after anesthesia. Are there any special precautions I should take? If you received therapy with bleomycin, you should: Avoid SCUBA diving. During SCUBA diving, increased underwater pressures and 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 for long 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 the lowest oxygen concentration that is necessary. All rights reserved worldwide Page 2 of 3

13 Bleomycin Alert Get the pneumococcal (pneumonia) vaccine. Get yearly influenza (flu) vaccines. Don t smoke. If you currently smoke, talk to your healthcare provider about a program to help you quit. Written by Margery Schaffer, RN, MSN, CPNP, Department of Hematology/Oncology, The Children s Medical Center, Dayton, Ohio. Reviewed by: Emmett J. Broxson, Jr. MD, Edward Walz MD, Karen Stormer, RN, CNS, CPON, Melissa M. Hudson MD, Debra Friedman MD, Neyssa Marina MD, and Smita Bhatia MD, MPH. Additional health information for childhood cancer survivors is available at Note: Throughout this Health Links series, the term "childhood cancer" is used to designate pediatric cancers that may occur during childhood, adolescence, or young adulthood. Health Links are designed to provide health information for survivors of pediatric cancer, regardless of whether the cancer occurred during childhood, adolescence, or young adulthood. Disclaimer and Notice of Proprietary Rights Introduction to Late Effects Guidelines and Health Links: The "Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers" and accompanying "Health Links" were developed by the Children s Oncology Group as a collaborative effort of the Late Effects Committee and Nursing Discipline. For Informational Purposes Only: The information and contents of each document or series of documents made available from by the Children s Oncology Group relating to late effects of cancer treatment and care or containing the title "Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers" or the title "Health Link", whether available in print or electronic format (including any digital format, transmission, or download from the website), shall be known hereinafter as "Informational Content". All Informational Content is for informational purposes only. The Informational Content is not intended to substitute for medical advice, medical care, diagnosis or treatment obtained from a physician or health care provider. To cancer patients (if children, their parents or legal guardians): Please seek the advice of a physician or other qualified health provider with any questions you may have regarding a medical condition and do not rely on the Informational Content. The Children s Oncology Group is a research organization and does not provide individualized medical care or treatment. To physicians and other healthcare providers: The Informational Content is not intended to replace your independent clinical judgment, medical advice, or to exclude other legitimate criteria for screening, health counseling, or intervention for specific complications of childhood cancer treatment. Neither is the Informational Content intended to exclude other reasonable alternative follow-up procedures. The Informational Content is provided as a courtesy, but not intended as a sole source of guidance in the evaluation of childhood cancer survivors. The Children s Oncology Group recognizes that specific patient care decisions are the prerogative of the patient, family, and healthcare provider. No endorsement of any specific tests, products, or procedures is made by Informational Content, the Children s Oncology Group, or affiliated party or member of the Children s Oncology Group. No Claim to Accuracy or Completeness: While the Children's Oncology Group has made every attempt to assure that the Informational Content is accurate and complete as of the date of publication, no warranty or representation, express or implied, is made as to the accuracy, reliability, completeness, relevance, or timeliness of such Informational Content. No Liability on Part of Children s Oncology Group and Related Parties/ Agreement to Indemnify and Hold Harmless the Children s Oncology Group and Related Parties: No liability is assumed by the Children's Oncology Group or any affiliated party or member thereof for damage resulting from the use, review, or access of the Informational Content. You agree to the following terms of indemnification: (i) "Indemnified Parties" include authors and contributors to the Informational Content, all officers, directors, representatives, employees, agents, and members of the Children s Oncology Group and affiliated organizations; (ii) by using, reviewing, or accessing the Informational Content, you agree, at your own expense, to indemnify, defend and hold harmless Indemnified Parties from any and all losses, liabilities, or damages (including attorneys' fees and costs) resulting from any and all claims, causes of action, suits, proceedings, or demands related to or arising out of use, review or access of the Informational Content. Proprietary Rights: The Informational Content is subject to protection under the copyright law and other intellectual property law in the United States and worldwide. The Children's Oncology Group retains excursive copyright and other right, title, and interest to the Informational Content and claims all intellectual property rights available under law. You hereby agree to help the Children s Oncology Group secure all copyright and intellectual property rights for the benefit of the Children s Oncology Group by taking additional action at a later time, action which could include signing consents and legal documents and limiting dissemination or reproduction of Informational Content. All rights reserved worldwide Page 3 of 3

14 Bone Health Keeping Your Bones Healthy after Childhood Cancer During childhood and into young adulthood, bone formation usually occurs faster than bone loss, causing bones to grow and become heavier (more dense). As a person gets older, the process of bone removal gradually overtakes bone formation, and bones slowly lose strength as part of the normal aging process. Osteoporosis: A Silent Disease Osteoporosis (or osteopenia) is a disorder resulting from too little new bone formation or too much bone loss, causing bones to become weak. Most people do not have symptoms, especially in the early stages. As bones become weaker, fractures may occur after minimal trauma, such as a fall. Osteoporosis may occur in any bone, but most commonly affects the wrists, hips and leg bones. The vertebrae of the spine often collapse, leading to loss of height, spinal curvature, and chronic pain. How is osteoporosis diagnosed? Although osteoporosis may be suspected based on a patient s symptoms and risk factors, the diagnosis is made by measuring bone density with special x-ray techniques called DEXA or bone density scans. These scans do not expose patients to large amounts of radiation, and generally take less than 20 minutes to perform. People who have osteoporosis should discuss treatment options with their healthcare provider. Medications, such as bisphosphonates and calcitonin, are available specifically for the treatment of low bone density. In addition, if you have low levels of male or female hormones, or low levels of growth hormone, you may also benefit from hormone replacement therapy. What are the risk factors for osteoporosis? Osteoporosis is more common in people with the following characteristics: Female (especially after menopause) Family history of osteoporosis Caucasian or Asian race Small, thin frame Older age The following factors may also increase the risk of osteoporosis: Smoking Diet low in calcium All rights reserved worldwide Page 1 of 4

15 Bone Health Lack of weight-bearing exercise Too much caffeine, alcohol, or soda A diet high in salt Additional causes of osteoporosis in people who have had cancer may include: A history of treatment with: Corticosteroids (such as prednisone and dexamethasone) Methotrexate Radiation to weight-bearing bones (legs, hips, spine) Conditions resulting from cancer treatment, including: Low levels of female or male hormones Growth hormone deficiency High levels of thyroid hormone Chronic graft-versus-host disease requiring prolonged therapy with corticosteroids Prolonged periods of inactivity (bed rest) Other medical treatments, including: Certain anticonvulsants (phenytoin and barbiturates) Aluminum-containing antacids (such as Maalox or Amphogel ) Medications such as Lupron (used for treatment of early puberty and endometriosis) High doses of heparin (used to prevent blood clots), especially with prolonged use Cholestyramine (used to control blood cholesterol) Many of the medications on this list are essential treatments for certain medical conditions. If you are taking any of these medications, do not change your dosage or stop taking your medication without consulting with your healthcare provider. What lowers the risk of osteoporosis? Fortunately, there are many things you can do to reduce the risk of osteoporosis. Regular weight-bearing exercise (such as brisk walking, dancing, jazzercise and jogging) helps to develop and maintain healthy bones. Bicycling and swimming are excellent exercises for general fitness, but these are NOT weight-bearing exercises, and they do not help to build strong bones. Exercises that are especially good for All rights reserved worldwide Page 2 of 4

16 Bone Health bone health include higher-impact weight-bearing activities, such as hopping, jogging and jumping rope. Resistance exercises, such as light weight lifting, also help to build strong bones and are especially important for bones of the upper body, including the arms and shoulders. If you have problems with your heart, or have painful bones or joints, be sure to discuss your individual health status and cancer treatment history with your healthcare provider before starting any new exercise program. A diet high in calcium also is important in preventing osteoporosis. Most healthcare professionals recommend mg a day, which means a diet rich in dairy products (milk, cheese, yogurt) and leafy green vegetables. Talking with a dietitian may help you design a healthy diet. Over-the-counter calcium supplements also may be useful. Additional information about calcium-rich diets is available at Vitamin D is needed in order to absorb calcium. Skin makes this vitamin naturally when exposed to sunlight. Many dairy products also contain vitamin D. In general, you should not take more than 800 units of Vitamin D per day. Taking too much vitamin D may be harmful, so it s best to check with your healthcare provider before taking any vitamin D supplements. What screening is recommended? After reviewing your treatment history and risk factors, your healthcare provider can advise you regarding the need for bone density testing. For those at risk, a baseline bone density scan is recommended for childhood cancer survivors when they enter long-term follow-up (2 or more years after completion of therapy). Follow-up scans may be needed for ongoing monitoring of bone density in some patients. Written by Julie Blatt MD, Division of Pediatric Hematology-Oncology, University of North Carolina, Chapel Hill, NC. Reviewed by Charles Sklar MD, Melissa M. Hudson MD, Debra L. Friedman MD, Joan Darling PhD, Wendy Landier CPNP, and Sarah Bottomley MN, RN, CPNP, CPON. All rights reserved worldwide Page 3 of 4

17 Bone Health Additional health information for childhood cancer survivors is available at Note: Throughout this Health Links series, the term "childhood cancer" is used to designate pediatric cancers that may occur during childhood, adolescence, or young adulthood. Health Links are designed to provide health information for survivors of pediatric cancer, regardless of whether the cancer occurred during childhood, adolescence, or young adulthood. Disclaimer and Notice of Proprietary Rights Introduction to Late Effects Guidelines and Health Links: The "Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers" and accompanying "Health Links" were developed by the Children s Oncology Group as a collaborative effort of the Late Effects Committee and Nursing Discipline. For Informational Purposes Only: The information and contents of each document or series of documents made available from by the Children s Oncology Group relating to late effects of cancer treatment and care or containing the title "Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers" or the title "Health Link", whether available in print or electronic format (including any digital format, transmission, or download from the website), shall be known hereinafter as "Informational Content". All Informational Content is for informational purposes only. The Informational Content is not intended to substitute for medical advice, medical care, diagnosis or treatment obtained from a physician or health care provider. To cancer patients (if children, their parents or legal guardians): Please seek the advice of a physician or other qualified health provider with any questions you may have regarding a medical condition and do not rely on the Informational Content. The Children s Oncology Group is a research organization and does not provide individualized medical care or treatment. To physicians and other healthcare providers: The Informational Content is not intended to replace your independent clinical judgment, medical advice, or to exclude other legitimate criteria for screening, health counseling, or intervention for specific complications of childhood cancer treatment. Neither is the Informational Content intended to exclude other reasonable alternative follow-up procedures. The Informational Content is provided as a courtesy, but not intended as a sole source of guidance in the evaluation of childhood cancer survivors. The Children s Oncology Group recognizes that specific patient care decisions are the prerogative of the patient, family, and healthcare provider. No endorsement of any specific tests, products, or procedures is made by Informational Content, the Children s Oncology Group, or affiliated party or member of the Children s Oncology Group. No Claim to Accuracy or Completeness: While the Children's Oncology Group has made every attempt to assure that the Informational Content is accurate and complete as of the date of publication, no warranty or representation, express or implied, is made as to the accuracy, reliability, completeness, relevance, or timeliness of such Informational Content. No Liability on Part of Children s Oncology Group and Related Parties/ Agreement to Indemnify and Hold Harmless the Children s Oncology Group and Related Parties: No liability is assumed by the Children's Oncology Group or any affiliated party or member thereof for damage resulting from the use, review, or access of the Informational Content. You agree to the following terms of indemnification: (i) "Indemnified Parties" include authors and contributors to the Informational Content, all officers, directors, representatives, employees, agents, and members of the Children s Oncology Group and affiliated organizations; (ii) by using, reviewing, or accessing the Informational Content, you agree, at your own expense, to indemnify, defend and hold harmless Indemnified Parties from any and all losses, liabilities, or damages (including attorneys' fees and costs) resulting from any and all claims, causes of action, suits, proceedings, or demands related to or arising out of use, review or access of the Informational Content. Proprietary Rights: The Informational Content is subject to protection under the copyright law and other intellectual property law in the United States and worldwide. The Children's Oncology Group retains excursive copyright and other right, title, and interest to the Informational Content and claims all intellectual property rights available under law. You hereby agree to help the Children s Oncology Group secure all copyright and intellectual property rights for the benefit of the Children s Oncology Group by taking additional action at a later time, action which could include signing consents and legal documents and limiting dissemination or reproduction of Informational Content. All rights reserved worldwide Page 4 of 4

18 Breast Cancer 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 is the risk of developing another cancer during adulthood. For a variety of reasons, the risk of cancer increases for everyone as they age. Depending on the specific treatment you received for childhood cancer, you may be at increased risk for developing breast cancer. It is important to understand that risk, so that you can take steps to protect your health. What are the risk factors? Several studies have shown that women treated with radiation to the chest for cancer during childhood, adolescence, or young adulthood have an increased risk of developing breast cancer as they get older, compared to women their same age in the general population. The risk of secondary breast cancer is related to the dose of radiation. People treated with higher doses of radiation have the highest risk. Researchers are studying this problem to better understand the risk factors and find ways to prevent secondary breast cancer. There are other known risk factors for developing breast cancer that apply to all women, not just those who have received radiation to the chest. These additional risk factors include: Early menstruation (before the age of 12) Late menopause (after age 55) Never having a baby or having a first baby after the age of 30 Having a close relative with breast cancer Being overweight Having an inactive (sedentary) lifestyle (not getting regular exercise) Other possible risk factors associated with developing breast cancer include: High fat diet Drinking too much alcohol Never breastfeeding Smoking Birth control pills Hormone replacement therapy taken for long periods of time All rights reserved worldwide Page 1 of 4

19 Breast Cancer 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 your 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. It is also important to tell your healthcare provider about your cancer treatment history, including the dose of chest radiation that you received. You should arrange for your healthcare provider to obtain a written summary of your cancer treatment (see related Health Link: "Introduction to Long- Term Follow-Up"). What monitoring is recommended? If you were treated with chest radiation therapy at a dose of 20 Gy (2000 cgy/rads) or higher during childhood, adolescence, or young adulthood, you should: 1. Perform monthly breast self-examination. Report any lumps or changes to your healthcare provider right away. 2. Have a clinical breast exam performed by your healthcare provider - at least once a year until you reach age 25 - then every 6 months thereafter. 3. Have a yearly mammogram* - starting at age 25 or 8 years after you received radiation (whichever comes last). *Note: Breast tissue in younger women (prior to menopause) tends to be more dense than breast tissue in older women. Because of this, some healthcare providers may recommend other tests (such as an MRI or breast ultrasound) to monitor for breast cancer in younger women. All rights reserved worldwide Page 2 of 4

20 Breast Cancer If your healthcare provider is not familiar with these monitoring recommendations for women who have received chest radiation during childhood, adolescence, or young adulthood, we encourage you to share this Health Link with them, and tell them that additional information is also available at What if I had a lower dose of radiation to the chest (or had total body irradiation)? For those treated with lower doses of radiation therapy to the chest (less than 20 Gy or 2000 cgy/rads), or for those who had total body radiation, there still may be an increased risk, but there are no scientific studies currently available to confirm this. You should have a discussion with your healthcare provider and make a decision about whether or not monitoring for breast cancer should be started earlier for you than for people who never had radiation. Is there anything else I can do to minimize the risk? The following lifestyle changes may help reduce the risk of developing breast cancer, and will also help you to stay as healthy as possible: Eat more fruits and vegetables (at least 5 servings a day are recommended). Exercise at least 30 minutes per day on most days of the week. If you are overweight, lose excess weight. Limit your intake of alcohol to no more than one drink per day. If you smoke, quit. If you have a baby, try to breastfeed for at least four months. If you need hormone replacement therapy or birth control pills, discuss the risks and benefits with your healthcare professional. Limit your exposure to potentially harmful chemicals and pesticides. Use protective equipment if you are exposed to chemicals in your workplace. If you have questions regarding your risk of developing breast cancer, and how you can best protect your health, be sure to discuss this with your healthcare provider. Written by Melissa Hudson MD, After Completion of Therapy Clinic, St. Jude Children s Research Hospital, Memphis, TN, and Wendy Landier, RN, MSN, CPNP, CPON, Survivorship Clinic, City of Hope National Medical Center, Duarte, CA. Portions adapted from CCSS Newsletter Winter 2001, used with permission. Reviewed by Jacqueline Casillas MD, Smita Bhatia MD, MPH, Louis S. Constine MD, Debra Friedman MD, and Fran Wiley RN, MN. All rights reserved worldwide Page 3 of 4

21 Breast Cancer Additional health information for childhood cancer survivors is available at Note: Throughout this Health Links series, the term "childhood cancer" is used to designate pediatric cancers that may occur during childhood, adolescence, or young adulthood. Health Links are designed to provide health information for survivors of pediatric cancer, regardless of whether the cancer occurred during childhood, adolescence, or young adulthood. Disclaimer and Notice of Proprietary Rights Introduction to Late Effects Guidelines and Health Links: The "Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers" and accompanying "Health Links" were developed by the Children s Oncology Group as a collaborative effort of the Late Effects Committee and Nursing Discipline. For Informational Purposes Only: The information and contents of each document or series of documents made available from by the Children s Oncology Group relating to late effects of cancer treatment and care or containing the title "Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers" or the title "Health Link", whether available in print or electronic format (including any digital format, transmission, or download from the website), shall be known hereinafter as "Informational Content". All Informational Content is for informational purposes only. The Informational Content is not intended to substitute for medical advice, medical care, diagnosis or treatment obtained from a physician or health care provider. To cancer patients (if children, their parents or legal guardians): Please seek the advice of a physician or other qualified health provider with any questions you may have regarding a medical condition and do not rely on the Informational Content. The Children s Oncology Group is a research organization and does not provide individualized medical care or treatment. To physicians and other healthcare providers: The Informational Content is not intended to replace your independent clinical judgment, medical advice, or to exclude other legitimate criteria for screening, health counseling, or intervention for specific complications of childhood cancer treatment. Neither is the Informational Content intended to exclude other reasonable alternative follow-up procedures. The Informational Content is provided as a courtesy, but not intended as a sole source of guidance in the evaluation of childhood cancer survivors. The Children s Oncology Group recognizes that specific patient care decisions are the prerogative of the patient, family, and healthcare provider. No endorsement of any specific tests, products, or procedures is made by Informational Content, the Children s Oncology Group, or affiliated party or member of the Children s Oncology Group. No Claim to Accuracy or Completeness: While the Children's Oncology Group has made every attempt to assure that the Informational Content is accurate and complete as of the date of publication, no warranty or representation, express or implied, is made as to the accuracy, reliability, completeness, relevance, or timeliness of such Informational Content. No Liability on Part of Children s Oncology Group and Related Parties/ Agreement to Indemnify and Hold Harmless the Children s Oncology Group and Related Parties: No liability is assumed by the Children's Oncology Group or any affiliated party or member thereof for damage resulting from the use, review, or access of the Informational Content. You agree to the following terms of indemnification: (i) "Indemnified Parties" include authors and contributors to the Informational Content, all officers, directors, representatives, employees, agents, and members of the Children s Oncology Group and affiliated organizations; (ii) by using, reviewing, or accessing the Informational Content, you agree, at your own expense, to indemnify, defend and hold harmless Indemnified Parties from any and all losses, liabilities, or damages (including attorneys' fees and costs) resulting from any and all claims, causes of action, suits, proceedings, or demands related to or arising out of use, review or access of the Informational Content. Proprietary Rights: The Informational Content is subject to protection under the copyright law and other intellectual property law in the United States and worldwide. The Children's Oncology Group retains excursive copyright and other right, title, and interest to the Informational Content and claims all intellectual property rights available under law. You hereby agree to help the Children s Oncology Group secure all copyright and intellectual property rights for the benefit of the Children s Oncology Group by taking additional action at a later time, action which could include signing consents and legal documents and limiting dissemination or reproduction of Informational Content. All rights reserved worldwide Page 4 of 4