Late Effects of Childhood Cancer Treatments Three-quarters of the 11,000 children and teens diagnosed each year with childhood cancer can now be cured. Survivors of childhood cancer are considered to be miracles. Survivors, their families, and their doctors and nurses rejoice at this good fortune. But, as Dr. Guilio D'Angio noted in a historic article twenty-five years ago, "Cure is not enough." Survivors of childhood cancer often find that the illness and its treatment have changed their lives in many powerful and often positive ways. However, long-term survivors of childhood cancer face a unique future. Some will encounter insurance and employment challenges, some will have emotional challenges, and some will have ongoing health problems related to treatment. During your journey through the many phases of survivorship, you may find yourself educating your family, friends, and healthcare providers about your own physical and social responses to treatment and its aftereffects. Knowing about your disease, its treatment, and potential late effects will help you advocate for the care you need to maximize your health and well-being. An adult who was treated during childhood describes the need to care for yourself: I'm a long-term survivor of Hodgkin's disease. I think you have to recognize the cancer as part of your history, absorb it into yourself, and hopefully grab some of the good things it has given you--a feistiness, a capacity for great compassion. You also have to be able to not let it overwhelm you with fear and anxiety so that it's all you can think about. How do you walk this line? If you don't think about it and don't let yourself be identified as a cancer survivor, then you can't protect yourself if you go in with late effects. You have to be able to say, "I may only be 28 years old, but I had radiation to my chest when I was 15, and I'm at risk for heart disease now." But then, you also don't want to become so obsessed that you start to define yourself as a cancer patient rather than a person who just happened to have had cancer. It's sometimes hard to strike that balance. All survivors need a long-term relationship with a competent healthcare provider (physician or nurse practitioner) they trust and with whom they can communicate. This person should oversee all of your medical care and refer you to specialists as the need arises. He should either specialize in treating survivors of cancer or be willing to work with you to keep up with the latest research and recommendations for care. It is an investment in your future health, and perhaps life, to spend time finding a healthcare provider who is capable of taking care of your particular needs. The first thing you share with a healthcare provider is your history. Many of the 250,000 survivors of childhood cancer in North America do not know the specifics of their treatment. Some do not even know they had cancer. If you don't have a detailed treatment summary, go back to your treating institution and get this important information. The more time passes, the harder it may be to track down the specifics of your treatment. If you do not have a copy of your health history, write down the following important information to make your own: Name of disease Date of diagnosis and relapse, if any Place of treatment Dates of treatment Names of attending oncologist and primary nurse Names and total dosages of chemotherapy drugs used Type, areas treated, and amount of radiation used Name of radiation center Date(s) of radiation received Amount of radiation and to what body part, e.g., whole body, cranial, etc. Dates and types of any surgeries Date and type of bone marrow or stem cell transplant, if any Any major treatment complications Any persistent side effects of treatment Recommended medical follow-up Contact numbers for treating institutions It is also a good idea to obtain copies of all x-rays and procedure reports from your treatment. Hospitals and clinics may not retain these or they may be put in storage and be difficult to track down at a later date. You may be charged for copies, but it is well worth the price for the peace of mind that comes from having your own set of records. If you develop late effects from treatment, these early records are crucial for your doctor to review. A young adult survivor says: If late complications arise, the current doctors want to and need to see complete medical records. For instance, in my case, they would have a much better idea of how extensive the heart muscle damage is if they could see the radiation records that don't exist anymore. I have spent the last year chasing medical records. It just never occurred to me that I would need them or that they would, in the end, be unobtainable. So I would press/advocate for a complete set of records including duplicate films and studies. It is your right and your child's right. My advice is be prepared. Follow-up programs usually provide a review of treatments received, counseling regarding potential health risks, and case-specific diagnostic tests such as cardiac evaluations, hormonal studies, or testing for learning disabilities. Follow-up clinics not only provide comprehensive care for long-term survivors, but participate in research projects that track the effectiveness and side effects from various clinical trials. In addition, the follow-up clinic acts as an advocate for survivors with schools, insurance agencies, and employers. The focus of these programs should be to educate survivors on strategies to maximize their health and well-being. A survivor describes her experience with follow-up care: I had neuroblastoma at age nine months, and I'm now thirty-four. What they do in the long-term follow-up clinic is take an abdominal and chest x-ray and blood work. They ask how I am feeling, and then I leave. It is staffed by the oncologist I saw for treatment. They don't even do a physical exam. Nor am I cautioned about any behaviors that increase my risk for late effects. There is never a mention of eating, drinking, sex, or sun exposure. Nothing. I'm now on a committee to change that because a teenager is not going to volunteer information during a medical appointment. If we create a comfortable climate and give out brochures about potential problems and how to take care of your health, maybe our survivors will get better care. Many cancer centers see long-term survivors but do not have a comprehensive program. To assess the programs nearest to you, you can ask the following questions: Describe how you provide follow-up for childhood cancer survivors. Who is in charge of the program (MD, nurse practitioner)? What is her experience in treating the late effects of childhood cancer? What other professionals are part of the team? Describe a typical visit to the follow-up clinic. What transition services from child to adult care do you provide? Are support groups or mentoring programs available? One parent tells how she put together late effects follow-up for her school-age daughter: The children's hospital that treated my daughter has no follow-up program. So I did some research, and now we fly 1,000 miles every year to the closest good program. The appointments last a couple of hours. We see the attending physician who specializes in late effects, a social worker, and an educational specialist. A pediatric radiologist reviews her bone-age x-rays, and she has blood work done that is ordered by the pediatric endocrinologist there. They are very helpful and thorough. Comprehensive follow-up not only improves the health and quality of life for survivors but also helps physicians evaluate the long-term effects of cancer therapies and develop safer therapies for newly diagnosed children. Advocating for comprehensive follow-up not only helps you as an individual but will help children who will be diagnosed in the future. Richard Klausner, MD, Director of the National Cancer Institute, wrote, "We must move away from the 'take no prisoners' theory of cancer care and begin considering the sequelae of the treatment we are giving patients. We have to overhaul our programs so that we can follow survivors, ask the questions, and get the answers we need to evaluate the effects of cancer treatment on long-term health." This fact sheet was adapted from Childhood Cancer Survivors: A Practical Guide to the Future, by Nancy Keene, Wendy Hobbie, and Kathy Ruccione, © 2001 from Patient- Centered Guides. Call (800) 998-9938 or check www.patientcenters.com for more information.