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: SEPTEMBER 10, 2012
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. 

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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.” 

While trying to launch their lives and find their emotional footing, AYAs are also faced with complicated psychosocial issues ranging from isolation and family dependence to insecurities resulting from a disease that brings with it treatments that may alter their appearance or life. Their ability to continue their education or earn a living may change in a multitude of ways, and with that their ability to afford health insurance when they age out of their parents’ healthcare policies. 

Nicholas Romanelli, who received a diagnosis of diffuse large B-cell lymphoma in October 2006 at age 21, is among the new generation of AYA survivors who recognize that an altered lifestyle and life-long monitoring come with the territory.

Romanelli, who was attending college in upstate New York at the time of his diagnosis, stayed with his parents on Long Island during initial treatment and then managed the year-long chemotherapy on his own, thankful that his parents respected his independence. Two months after finishing treatment, scans showed his disease had returned and he would need a bone marrow transplant.

“I had total body radiation, hardcore chemo and a transplant in March 2008. I remained inpatient for 19 days,” he says.

I would like to see a more formal way to educate the primary care physicians about late effects.

“I would like to see a more formal way to educate the primary care physicians about late effects,” says Orlino, DeVoe’s physician. “But right now the patients are the best repository of their information and they have to own it.”

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