By Alanna Kennedy
Advocate Q&A: Support for Young Adult Survivors
The Children’s Brain Tumor Foundation is helping young survivors cope with the unique challenges they face after treatment
By Alanna Kennedy
Cancer survivors face a unique set of challenges, including long-term and late effects from therapy. And for brain tumor survivors, the physical impact from cancer and its treatment can be especially challenging. “Brain tumor survivors often have cognitive impairments like short-term memory loss and reduced processing speed,” says patient advocate Stacia Wagner.
Because of their young age, those diagnosed as teens or young adults face the added stress of beginning a career and building a life, notes Wagner, the director of survivor programs at the Children’s Brain Tumor Foundation. Through programs she has helped develop, Wagner helps young brain tumor survivors become their own advocates and adjust to the challenges of entering the work force.
Recently, CR talked with Wagner about how her organization is helping young adult survivors deal with the social and cognitive issues they face after cancer treatment.
CR: What types of programs does the Children’s Brain Tumor Foundation offer young brain tumor survivors?
Wagner: One of the things we do that I really like is a young adult brain tumor survivor camp at Camp Māk-A-Dream. We bring young adult survivors together, and it’s half educational—we talk about medical late effects, relationships and dating. And the other half is just building a community—we go rafting, and there is a ropes course.
Another big project we’re doing is employment focus groups. A lot of brain tumor survivors look one way on paper, but they interview much differently [than their peers]. So we’re looking at what employers are looking for and why people are not able to keep the jobs they are qualified for.CR: How do late effects from cancer treatment affect the daily lives of brain tumor survivors?
Wagner: The biggest challenge they face is social issues. Many are socially isolated because of appearance issues or because of cognitive changes and behavioral changes. I work to build a community for them, to decrease social isolation.