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
Orlino follows the young adults in the ACE clinic, which is a subclinic of her general internal medicine practice where she also follows other AYA patients who have found her through research or referrals. These are often patients such as DeVoe who were treated in other cities earlier in their lives and who now need a primary care physician who understands their cancer history.  

“The Leukemia and Lymphoma Society will refer adult patients to me who want to blend primary care and late effects,” she says. Her job, she says, is educating patients about their increased risk for late effects and helping them make changes that will reduce those risks.

“The challenge is finding a way to tell this healthy population in a way that will motivate them to make those changes now.” 

As Romanelli recovers, he continues receiving intravenous immunoglobulin due to his depleted B cells (antibody-producing white cells). In 2011 he met Oeffinger, who set up his survivorship care plan for monitoring, exercise and nutrition—a relationship that Romanelli sees as lifelong. Now working in financial services in Manhattan, he also says he is grateful to be in a city with an AYA follow-up clinic. 

[Fertility: "A Wished-For Child" by Alex Shapiro, daughter of an AYA survivor]

Melissa Hudson, MD, director of the Cancer Survivorship Division at St. Jude Children’s Research Hospital in Memphis, Tenn., and chairwoman of the ASCO Cancer Survivorship Committee, has focused on late effects of AYA and childhood cancer treatment in her clinical and research work. She now follows some 5,000 survivors from across the country, the oldest of whom is in his late 60s.

“We not only think about the medical outcome but also the psychosocial and emotional impact of the cancer diagnosis, especially its impact on academic and vocational progress,” Hudson says. “Those AYAs treated in pediatric centers are more likely to have access to a multidisciplinary psychosocial support staff that proactively addresses these issues.”

[Late Effects: Embarking on a Program for Young Adult Cancer Patients by Dr. Debu Tripathy]

Hudson says follow-up at St. Jude’s takes into consideration a patient’s age at diagnosis and developmental issues, she says. As patients are followed, she and her team evaluate if survivors are achieving the milestones expected for their developmental stage, she says. “Young adults want a normal life. They have had this horrific experience and they want to move on from that, and they don’t want to be reminded of the health risks,” she says. “But if they are proactive about medical follow-up and healthy lifestyle, they can modify those risks.”

Patients have a survivorship care plan that has information about the drugs they’ve taken and their potential late effects, as well as a monitoring and surveillance plan. Hudson says they encourage patients to become their own advocates with their local primary care physicians. 

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