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Young Adult Cancer Survivors May Face a Challenging Future

Adolescent and young adult cancer survivors must be their own advocates to live long and well.

BY KATHY LATOUR
PUBLISHED MONDAY, SEPTEMBER 10, 2012
Talk about this article with other patients, caregivers, and advocates in the Sarcoma CURE discussion group.
Despite the fact that 23 years have passed, Diana DeVoe still cries when she talks about the day she learned that she had cancer. Then an 18-year-old college freshman at The Ohio State University, she waited until she went home for Christmas to have her family doctor look at the knot that had popped up between the knuckles of the first and second fingers of her left hand. He referred her to a specialist for a biopsy. She woke to find herself alone in the hospital while her father had gone to get her mother.  

“Before my parents even got back, because I was 18 and considered an adult, they told me alone that I had cancer,” DeVoe says. “And it was bad.”

A cancer of the connective tissue, called alveolar rhabdomyosarcoma, had wrapped itself around her fingers and the connecting muscle, requiring that two fingers be removed along with most of the muscle. The surgery was followed by radiation and more than two years of chemotherapy. During the week of surgery, DeVoe celebrated her 19th birthday.

The treatment kept her cancer-free, but at a price. 

When DeVoe received her diagnosis in 1988, she fell in the, as yet, unnamed category of an adolescent and young adult (AYA) cancer patient. Now defined by the National Cancer Institute as people ages 15 to 39, AYA patients have seen growing attention because of their unique position at the crossroads of pediatric and adult oncology.

Researchers have identified the primary concerns for AYA survivors as detection and management of late effects, assessment and support of psychosocial functioning, provision of health-related education, and assistance with identifying and meeting financial challenges.

Kevin Oeffinger, MD, director of the Memorial Sloan-Kettering Cancer Center Adult Long-Term Follow-Up Program, says by bringing AYAs into the system for surveillance, other issues can be identified and referred, but the biggest challenge remains convincing them to follow up on any recommendations once treatment has ended. 

Research by Oeffinger and others has shown that survivors of pediatric and young adult cancer face a substantial risk of late effects and early mortality. By 30 years from the initial diagnosis, 73 percent of pediatric cancer survivors will develop at least one chronic physical health condition; in 42 percent the condition will be severe, life-threatening, disabling or result in death. 

If there were a poster child for both the needs and the challenges of this age group, it would be DeVoe. 

After her fingers were amputated, DeVoe went home with her parents, crawled into her childhood bed and took pain killers one after the other so she wouldn’t wake up. She lost 55 pounds during two years of combination chemotherapy using cisplatin, vincristine, doxorubicin and cyclophosphamide, during which she remained home, enrolled in and dropped out of a community college to maintain her status as a full-time student so she could stay on her parents’ insurance plan. When she returned to campus, where she focused on getting out of college and keeping people at arm’s length, she told new friends that she lost her fingers in a car crash. After graduation, she took a position with a national hotel chain, where she had interned, moving to Dallas to manage hotels.

Then, in 2006, on her 36th birthday, she woke up and couldn’t feel her toes. As the numbness turned to pain, a visit to her internist began a physician odyssey that took her to an orthopedic surgeon, a sports doctor, a back doctor, a neurologist, a pain specialist and, finally, a neurosurgeon who performed a nerve biopsy. Nothing helped. She went back to work, struggling with the pain, which had now moved up her right leg to her hip and her left leg to her calf. By early 2011, DeVoe was receiving disability benefits, unable to drive more than 10 minutes at a time and struggling emotionally. Then she was referred to Angela Orlino, MD, director of the Young Adult Program at After the Cancer Experience (ACE), a survivorship program of Dallas Children’s Medical Center and the University of Texas Southwestern Medical Center, one of the oldest AYA programs in the nation. 

[Cancer Survivors Need Details of Treatment:

Read why Diana stopped hiding from her cancer past]


Orlino identified the neuropathy and pain as probable late effects of DeVoe’s cancer treatment and helped her obtain insurance coverage for the surgery to implant a spinal cord stimulator to help with the pain. 

On a positive note, after more than 20 years, DeVoe began to make peace with her cancer diagnosis when she met other AYA survivors at local and national meetings. 

“I ran away for 22 years,” she says. “I am finally getting it that God didn’t give me cancer; it’s just something that happened. I was in anger and denial for so long and now I am working through it.” 

Talk about this article with other patients, caregivers, and advocates in the Sarcoma CURE discussion group.
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