Meeting the Unique Needs of Adolescents and Young Adults With Cancer
“You don’t expect to get cancer at age 20,” says Maryam Lustberg, MD, medical director of the survivorship program at The Ohio State University Comprehensive Cancer Center – Arthur G. James Cancer Hospital and Richard J. Solove Research Institute (OSUCCC – James).
Yet each year, 72,000 adolescents and young adults (AYAs) of ages 15-39 are diagnosed with cancer—the No. 1 disease killer of this age group. What’s more, survival rates for AYAs have not improved at the same rate as for other groups. According to the Centers for Disease Control and Prevention, AYA cancer survivors are more likely to smoke, less likely to get physical activity and less likely to be able to afford a doctor’s visit compared with their peers who have not had cancer. All of this creates urgency for the OSUCCC – James to step up efforts to meet the needs of AYAs with cancer.
“Most of these patients will be long-term survivors. They are starting college, or are just married and thinking about having children,” says Lustberg. “We don’t want to be so focused on the treatment that we lose sight of longevity and planning for the long term.” By offering fertility counseling, dedicated social workers and chaplains to help with the emotional and psychological issues that AYAs may face, as well as research that explores variations in tumor biology that are peculiar to this age group, the OSUCCC – James is leading the way in helping AYAs with cancer.
In addition, a partnership with Nationwide Children’s Hospital (NCH) will enable new programming for adolescent survivors. Representatives from NCH and the OSUCCC – James meet regularly to maximize resources and create unprecedented impact for this population. “With two research powerhouses collaborating, this puts us in a great position to address young people’s needs,” says Lustberg.
Tom Scharschmidt, MD, FACS, associate professor in the Department of Musculoskeletal Oncology at Ohio State and director of the Bone Tumor Clinic at NCH, says collaborations are key. “We have a large, multidisciplinary team that crosses pediatric and adult specialists. This team approach, with the focus on the patient, creates a collaborative environment that will lead to improved outcomes and support.”
Collaboration on national research studies is also important for improving treatments for AYAs with cancer, and the OSUCCC – James is at the forefront of a number of those efforts. Scharschmidt, for example, is the lead surgical researcher on a national study on soft tissue sarcomas—over half of which fall into the AYA population. The OSUCCC – James leads the nation in recruiting clinical trial participants for this study.
What can help the OSUCCC – James increase and improve survivorship for AYAs with cancer? Philanthropy. Gifts to support life-changing services and research are essential in connecting AYAs to the care they need. Scharschmidt says innovative new services for the AYA population will require resources, especially since these patients “have long followup periods and specific needs as they recover from the cancer diagnosis.”
The community came out in droves to support AYA cancer research at The Columbus Mac & Cheese Festival. Held last October at Easton Town Center, the festival raised more than $65,000 as hundreds of participants sampled classic macaroni and cheese from local Columbus restaurants. Coordinated by the NextGen James Ambassadors, which is made up of young professionals who are dedicated to creating a cancer-free world, the festival brought much-needed attention to a serious cause.
NextGen James Ambassadors Society Chair Josh Barkan notes that, in addition to raising funds for research, the event is raising awareness of cancer in an age group that is in between typical children’s hospital and adult cancer hospital demographics. “If a 22-year-old has a cough, the doctor doesn’t necessarily think it’s lung cancer,” he says. “That’s why it’s so important to raise awareness for young adults to be mindful of their body and seek help if they feel something isn’t right.”