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Growing Pains

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

Surviving into Adulthood

"We recognize that these children need a good quality of life, too."

Read about Cognitive Long-Term Effects in Lessons Learned

The transition to adulthood is difficult for any kid, but even more so for childhood cancer survivors. Health insurance often comes at a premium when cancer is considered a preexisting condition. Even finding a primary-care doctor who is willing and able to provide care for a survivor can be difficult, Mody said.

Laura Selecki is excited about becoming more independent and going to college-and a little scared, as any 18-year-old is. She knows she has a higher risk of developing leukemia, but she's not too worried. Her mom, Carol, said her family has been discussing concerns related to her diagnosis, especially as she's grown into a young woman.

"She's always taken things as they come," Carol Selecki said. "We probably worry about it more than she does. I don't think it's a big concern for her. She's always had the attitude that she's going to make the most of her life."

The Long-term Follow-up Clinic continues to see patients, even as adults, to ensure they receive the care they need. Generally, patients are seen in the clinic for 10 years after the end of cancer treatment-or 15 years, if a blood stem-cell transplant was involved. The clinic's oldest patient is 43.

Often, it isn't until patients start coming to the clinic as young adults without their parents that they start asking questions of their own, Leonard said. Starting college, getting married, trying to have children and other milestones often prompt questions patients didn't realize they had. And it's still not well known how natural aging affects childhood cancer survivors.

But with time, researchers and health-care providers hope to have better answers.

"It's not uncommon for children with adverse cancer treatment effects-for those who aren't quite as tall or who don't do quite as well in school or who are infertile-to be told that they should just 'be happy that you're alive,'" Leonard said. "We recognize that these children need a good quality of life, too. It's not just enough to survive."

 

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