The legacy of childhood cancer: Brain cancer and its long term effects

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By Celiane Rey-Casserly, PhD, ABPP-CN, director of Children’s Neuropsychology Program and neuropsychologist for the Pediatric Neuro-Oncology Program at the Dana-Farber Cancer Institute

Every year, about 2,000 children in the United States are diagnosed with a brain tumor. Thanks to better technology and treatments, children are now surviving brain tumors at increasing rates. But as these survivors age, pediatric cancer specialists like me are beginning to understand that the legacy of childhood cancer extends well into adulthood. We’re learning that survivors of brain tumors face a variety of late effects from their cancer and treatments.

A recent paper by Leah Ellenberg, PhD, of University of California Los Angeles, found that survivors of childhood brain tumors reported significantly greater neurocognitive dysfunction than their siblings or than survivors of other types of childhood cancer. Radiation, shunts or other medical complications (such as stroke, paralysis, or hearing impairment), placed these survivors at a higher risk of neurocognitive dysfunction in adulthood.

Some of the largest problems survivors reported were with executive functions (planning or decision making), particularly task efficiency (speed of performance, self-initiation and multi-tasking abilities). These skill sets are required to deal successfully with school and environmental demands. Most of us take these skills for granted and don’t appreciate how important they are to our everyday lives; managing emails, keeping track of appointments, and figuring out what to do first in a task, all depend on these skills.  These adult survivors were likely to be more easily overwhelmed, read more slowly, or have problems getting started on their work, and they reported more problems with both long and short term memory. Survivors with more neurocognitive impairment were also more likely to have lower educational attainment, less than full time employment, and lower income. In addition, they were less likely to be married.

For me, these findings highlight the need for a multi-disciplinary, lifespan approach to caring for survivors of childhood brain tumors. We need to conduct more research to understand the outcomes of children currently being treated to see how they benefit from advances in cancer care such as lower doses of radiation, newer chemotherapy regimens, and improved surgical and radiation therapy techniques. We should also consider improvements in how we help these survivors transition to adulthood, so they can perform at their fullest potential in college, at work and in their personal lives.

The Pediatric Neuro-Oncology Outcomes team at Dana-Farber/Children’s Hospital Cancer Care has been studying our survivors of childhood cancers and their long term outcomes for several years. We found that even survivors who are treated only with surgery encounter late effects affecting their health, education, psychosocial development and neurocognitive functioning. We also found that problems in executive functions are associated with impairment in overall adaptation in life.  In our clinic, we use a “whole-person” approach that combines information about health status, neurocognitive profile and psychosocial issues. We worry about their physical health but also about how they are doing with school and with friendships. As we follow these children’s life stories, we learn more about their unique challenges across development.

As caregivers, we’re responsible for identifying the most vulnerable survivors so that they can be provided with intense support and targeted treatments at critical periods in development. We also need to understand factors that increase resilience so that we can support these areas and develop more effective interventions. In Boston, we’re starting this by developing studies that will look at how combinations of medical, genetic, neuropsychological, and social factors affect outcomes. Ultimately we aim to apply these findings to personalized treatment and long-term care plans so each patient has the resources they need to live a successful, fulfilling life.