Once childhood cancer patients have been declared cancer-free, most are not completely out of the woods.
More than 60 percent of childhood cancer survivors experience late effects of cancer treatment resulting in chronic conditions. The New England Journal of Medicine says nearly half of all late effects are severe, life threatening or disabling.
Although two-thirds of all childhood cancer survivors develop late effects—including breast cancer, heart disease, learning disabilities, infertility and hearing loss—few get adequate follow-up care.
“Most of them don’t know their risks for medical late effects, which puts them in a very precarious position in terms of maintaining their health,” says Nancy Keene, a parent of a survivor of childhood leukemia, and author of topical books including “Childhood Cancer Survivors: A Practical Guide to Your Future.”
“There are a lot of survivors in trouble out there, and they don’t know it. If they get follow-up care from an expert, then they minimize the chances of having problems,” Keene emphasizes. “And all the things that help anybody stay healthy are even more important for cancer survivors.”
The importance of maintaining a healthy lifestyle after treatment, including getting enough sleep, eating well and exercising, can’t be underestimated.
“I find that I need a lot more sleep than my peers, and I realize what a difference it makes in my grades and studying when I do get enough sleep,” says Allison DeSoto, a junior at the University of Georgia who survived cancer as a child. “Exercise also helps to relieve stress.”
In addition to making healthy choices, it’s critical that survivors be aware of the repercussions of cancer treatments on growing bodies and young minds—such as certain cancer diagnoses and subsequent therapies carrying a higher risk of developing other diseases later in life.
According to Keene, the greatest threat to a survivor’s well-being is a lack of information.
Here are some things to be aware of to maintain a healthy lifestyle and reduce late effects as survivors transition into adulthood:
• health education about exercise, diet, smoking, sun, seat belts, safe sex and texting while driving,
• reproductive counseling,
• psychosocial support,
• education about disease history,
• discussion of risks associated with treatment.
Survivors should also utilize resources like The National Children’s Cancer Society’s (NCCS) Beyond the Cure survivor ship program, which offers the most up-to-date information available on survivor ship.