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Growing Pains

Childhood cancer survivors cope with long-term effects of treatment - con't.

Fleeting Chances

Jarred Duncan doesn't think much about having had cancer, but he makes sure to take good care of his remaining kidney.

The key to managing the long-term effects of cancer treatment is the same as the key to surviving cancer: early diagnosis. When families are referred to the Long-term Follow-up Clinic three to five years after cancer treatment ends, they meet with a multidisciplinary team of specialists, including Leonard; social worker Peg Woehrle, M.S.W.; child psychologist Catherine Peterson, Ph.D.; dietitian Nancy Burke, R.D.; and potentially an on-call physician.

These visits are important because they can ferret out problems that may not be obvious. Each family or young adult receives a treatment summary including all chemotherapy drugs and doses, radiation port and dose and surgical treatments. More importantly, a care plan specific to the needs of each child is developed. The plan takes into account the child's age, the known risks associated with specific treatments the child received and the individual needs of the child and family.

Beyond possible medical complications, clinic staff members help educate families about the psycho-social impacts of cancer: the long-range effect on siblings; the difficulties in maintaining reasonably priced health insurance after a childhood cancer survivor turns 21; the impact of indulging a child's every wish-or of letting them slack off in school-because of a cancer diagnosis.

Academics are a focal point for the Long-term Follow-up Clinic, particularly if chemotherapy was administered directly into the spinal fluid or if cranial radiation was part of a child's treatment. Peterson intervenes and evaluates school-age children to determine whether a child is having problems with cognitive functioning as a result of treatment. This will help parents work with school teachers to develop individualized education plans to help the child succeed in class.

Research has shown that childhood cancer survivors tend to fall behind in terms of socio-economic status as adults, said Rajen Mody, M.D., an assistant professor of pediatric hematology oncology. They are more likely to be unemployed and to have lower overall graduation rates compared with their peers, he said, which may be because of the cognitive effects of treatment. "That's where early diagnosis comes into play," he said. "Once we identify these problems, we can work with families and schools to lessen the impact, so a child has a better chance to succeed in school and in a future career as an adult."

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This article first appeared in the Spring, 2009 issue of Thrive. Read the magazine - opens as a .pdf document.