March 1, 2016
More than 420,000 children, teens, and adults in the United States are survivors of childhood cancer. The surgery, radiation, chemotherapy, and stem cell transplants used to cure children and teens of cancer can affect growing bodies and developing minds.
The scary news is that most survivors develop late effects months, years, or decades after treatment. A 2013 study from St. Jude Children’s Research Hospital found that 95% of long-term survivors of childhood cancer had at least one chronic health condition by the age of 45. The good news is that many of these late effects can be prevented or managed by getting excellent follow-up care and making healthy choices.
Five ways that survivors can maintain their hard-won health are described below.
1. Get a Summary of Your Treatment
Every survivor needs a summary of his or her cancer treatment. Ask your oncologist or nurse practitioner to fill out the Childhood Cancer Guides’ treatment summary form. Make several copies of the completed form, because this health history will become an indispensable part of your medical records for the rest of your life. It helps to keep a copy in a safe place, and a copy should be given to each of your medical providers (e.g., internist, eye doctor).
2. Go to a Comprehensive Follow-up Clinic Every Year
Children, adolescents, and adults who survived childhood cancer should be seen by specialists in late effects of treatment. About 15 years ago, several parents of survivors called the 320 hospitals in the United States and Canada that treat children with cancer to find out what services they provided for survivors. Although all of the hospitals checked children and teens for recurrence of disease, only 24 provided comprehensive follow-up services. Thankfully, the number of clinics has grown since then, including clinics for adult survivors of childhood cancer. Click here for the list of follow-up clinics.
3. Tell Your Primary Care Doctor About COG’s Long Term Follow-up Guidelines
The Children’s Oncology Group developed a set of clinical practice guidelines that provide recommendations for screening and management of late effects in survivors of childhood cancer. The guidelines are intended to help primary care physicians provide comprehensive follow-up care to survivors for the rest of their lives. Click here for the survivorship guidelines.
If you are a survivor who does not see a healthcare provider who is an expert in the late effects after childhood cancer, tell him or her about these guidelines. It could help you get the care you need and deserve.
4. Take Control of Your Health
Survivors have little or no control over their genetic make-up or the environment in which they live, but making healthy choices about how to live the rest of their lives gives them quite a bit of control over their future. A sizable number of adult health problems are linked to lifestyle choices, so the following are ways to help stay healthy:
Good health habits and regular medical care help protect your health and lessen the likelihood of late effects from cancer treatment.
5. Read Childhood Cancer Survivors: A Practical Guide to Your Future, 3d ed
Childhood Cancer Survivors charts the territory for survivors by providing state-of-the-art information about:
Dozens of experts (pediatric oncologists, nurses, attorneys, educators, social workers) reviewed the text, and stories from more than 120 survivors and parents are woven throughout the book. Childhood Cancer Survivors, 3rd edition, is one of five books published by a small nonprofit called Childhood Cancer Guides, founded and run by parents of survivors. To learn more, visit www.childhoodcancerguides.org.
© 2016 Nancy Keene
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