You’ve Beaten Childhood Cancer
Now it’s time to get serious about follow-up care.
by Nancy Keene, Wendy Hobbie, MSN, PNP, FAAN,
and Kathy Ruccione, RN, MPH, CPON, FAAN
Every year, on the first Sunday in June, treatment centers across the country organize special events for National Cancer Survivors Day® with games, entertainment, and refreshments. At some events, college scholarships are awarded. Maybe there is a friendly softball competition between survivors and staff, or the doctors agree to take a turn in a dunk tank, good-naturedly letting themselves be dunked by kids and teens. Sometimes educational materials are distributed or inspirational lectures given. Always, there is a chance to renew the bonds forged by shared experience and to reconnect with staff members on a relaxing and fun day.
Survivors of childhood cancer certainly have much to celebrate. The combined five-year survival for childhood cancers has improved from less than 50 percent before the 1970s to 80 percent today. Treatment for childhood cancer is one of the miracles of modern medicine.
Along with the joyous celebrations, however, is a need to get accurate information and excellent follow-up care. The surgery, radiation, chemotherapy, and stem cell transplants used to cure children and teens often affect growing bodies and developing minds. About two-thirds of all childhood cancer survivors develop medical late effects from treatment, and approximately 25 percent of survivors have serious or life-threatening late effects.
Good health habits and appropriate medical care can help childhood cancer survivors make the most of the lives that they fought so hard to save.
Risks for late effects depend on many factors, including the type of disease, age at diagnosis, and treatments used. The following are examples of late effects after cure from childhood cancer:
- Breast cancer at an early age in survivors of Hodgkin lymphoma who received radiation to their chest when they were teenagers
- Heart disease after treatment with chemotherapy (doxorubicin, for example) or high-dose chest radiation
- Learning disabilities from radiation or chemotherapy to the brain
- Infertility following chemotherapy or radiation to the abdomen
- Hearing loss from the chemotherapy drug cisplatin
- Symptoms of post-traumatic stress in survivors and their parents
Fortunately, good health habits and appropriate medical care can help childhood cancer survivors make the most of the lives that they fought so hard to save. Here are several ways you can be checked for late effects and get advice on how to remain healthy.
Find a knowledgeable healthcare
The best way to get optimal care is to see a multidisciplinary team at a major medical center on a regular basis. These follow-up programs usually provide a review of treatments received, counseling about potential health risks, and any necessary diagnostic tests, such as cardiac evaluation, hormonal studies, psychological evaluation, or testing for learning disabilities. In some cases, members of the follow-up team act as advocates for survivors with schools, insurance agencies, and employers. The focus of these programs is to educate survivors on strategies to maximize their health and well-being.
However, sometimes circumstances prevent survivors from participating in a follow-up program. For example, you may not live near a survivorship program or be able to travel to one. In addition, although a few programs follow survivors into their adult years, most do not see survivors after they finish high school. For these reasons, adult survivors often have to search for a primary care provider (family physician, internist, or nurse practitioner) who is interested in caring for survivors of childhood cancer.
You may need to make a few phone calls or visit with several healthcare providers until you find someone you are comfortable seeing. Because most primary care providers have not taken care of many childhood cancer survivors, the provider should be willing to communicate with doctors involved with a comprehensive follow-up program and remain up-to-date on the newest research and screening recommendations.
Get a copy of your medical records.
Every survivor should have a medical summary that includes their type of cancer, treatments received, and follow-up tests needed. Many cancer centers and follow-up programs give survivors a medical summary after treatment is completed. you should call the hospital where you were treated and request one. The treatment summary should be kept in a safe place, and a copy should be given to each of your healthcare providers.
It is also a good idea to obtain copies of pertinent X-rays, scans, and procedure reports from your cancer treatment (these are now usually provided on CDs). Hospitals and clinics may not keep these records indefinitely, or they may be put in storage and be difficult to track down later. You may be charged for these 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 any late effects from treatment, these early records will be crucial for your healthcare provider to review.
Advocate for your medical needs.
The more informed you are about your treatment, the better you can advocate for appropriate care. For instance, if you know that you are at risk for breast cancer, you can ask your healthcare provider for a referral for a mammogram eight years after you had chest radiation. Most primary care providers do not know that survivors of Hodgkin lymphoma usually need to start getting yearly mammograms in their 20s.
Make good choices.
You have power over many parts of your future, including making choices that have a positive effect on your health. For instance, many late effects can be avoided or minimized by eating a healthy diet, being physically active, and choosing not to smoke.
You can also improve your health by giving yourself the gift of good information and support. For example, some follow-up programs offer support groups designed to meet the unique needs of childhood cancer survivors. Some survivors enjoy participating in online discussion groups or finding and using helpful books and websites. Learning what you need to know and partnering with knowledgeable professionals will help you make the most of your life after cancer.
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This article is adapted from Childhood Cancer Survivors: A Practical Guide to Your Future, 3rd edition (Childhood Cancer Guides, 2012) by Nancy Keene, Wendy Hobbie, and Kathy Ruccione. Nancy, the mother of a long-term survivor of childhood cancer, has written many books, including Childhood Leukemia: A Guide for Families, Friends and Caregivers, Childhood Cancer: A Parent’s Guide to Solid Tumors, and Chemo, Craziness, and Comfort. Wendy is the associate director of the Cancer Survivorship Program at Children’s Hospital of Philadelphia. Kathy is the codirector of the Hematology-Oncology Psychosocial and Education (HOPE) program at the Children’s Hospital of Los Angeles.
Excerpts from Childhood Cancer Survivors are available online at childhoodcancerguides.org/survivors. Learn more about survivorship and find follow-up clinics and Internet support groups at ped-onc.org/survivors. Guidelines for follow-up care are available from the Children’s Oncology Group at survivorshipguidelines.org.
This article was originally published in Coping® with Cancer magazine, November/December 2012.