GHS Answers When Cancer Hits Young Adults

For patients age 15-39, the Adolescent & Young Adult Oncology Program, part of the Cancer Institute of Greenville Health System (GHS), provides support for medical—and non-medical—challenges.

With his cancer in remission, Nestor Cordero and his family enjoy an outing at Spill the Beans in downtown Greenville.

For many, young adulthood is a time to finish studies, launch a career or start a family; cancer isn’t something they expect to encounter. In the U.S., however, over 70,000 people age 15-39 receive a cancer diagnosis annually. Troublingly, these patients lag behind other age groups in successful outcomes. This population is underrepresented in clinical research and has distinct biologic and psychosocial needs that require specialized care.

To address these issues, GHS Cancer Institute launched an Adolescent & Young Adult (AYA) Oncology Program in 2016. The program brings together specialized care providers from both the pediatric and adult worlds. And while it’s not a patient’s primary source for treatment decisions, the program’s doctors and caregivers believe they can help improve outcomes among patients in this age group.

While in the program, patients continue to be cared for by their primary oncologist. But the program’s co-directors— pediatric hematologist/oncologist Aniket Saha, MD, and adult hematologist/oncologist Elizabeth Cull, MD—aim to see every GHS patient in that age group diagnosed with cancer.

“Once a patient has received a diagnosis, he or she is referred to us,” Dr. Saha said. “We don’t make treatment decisions, but we do meet needs, add a voice, and give information and insight to our patients.”

Psychosocial Supportive Care

Dr. Cull explained that the program serves as an additional layer of care, often providing assistance for non-medical needs—which can loom large—in this age group.

“I’d describe our program as a psychosocial supportive care clinic,” she noted. “Patients who see us may not seem to have these needs at first, but if we spend an hour with them, a lot comes out. Can they make it to their appointments? Can they afford their medicine? From a medical perspective, accessibility and compliance are crucial.”

Dr. Cull recalled that during the first appointment a patient reported being charged a full semester’s college tuition when the cancer diagnosis had forced that person to leave school after just one week; AYA staff helped pursue reimbursement. For other patients, the program handles aspects as varied as transportation, cancer genetics referrals, and fertility preservation and sexuality.

The AYA Oncology Program team brings together a handful of disciplines to effectively meet needs. That team includes pediatric social worker Amy Bowers, adult social worker and counselor Kerri Susko, and nurse practitioner Heather Bowers.

Other tools include support groups, social media outreach, cancer-focused counselors and social outings such as AYA nights with the Greenville Drive. For patient Nestor Cordero, a 31-year-old father of four, these aspects have made his diagnosis far more manageable.

“Dr. Saha reassured me from the start that we were going to be okay,” Cordero remembered. “The team walked us through each step and had activities that helped us talk about what we were experiencing. Our boys look forward to AYA events around town; it is good for us to see other families who know what we are dealing with.”

Dr. Cull agreed: “We hear daily that patients felt alone and disconnected until they found us; our team is able to fill in the gaps.” She said the AYA cancer population has historically not enjoyed the benefit of the abundance of resources, clinical trials and philanthropy dollars dedicated to pediatric cancer programs, but these patients—in the midst of their own transitions to adulthood—need at least as much support as younger children.

“The AYA population can feel like something of a lost group,” Dr. Cull pointed out. “They receive less attention, funding and support; but if anything, they need more support than anyone to juggle new financial responsibilities and growing families.”

Cordero is grateful for the support his family has received. “We feel taken care of—that the clinic can help us no matter what we need,” he offered. “It has played a great support role in our journey.”

No Need to Start from Scratch

In its first year, the program saw 65 patients. It was less of a launch of a new program, Dr. Saha noted, than an adaptation of many offerings already available at GHS, made possible by visionary leaders such as William F. Schmidt III, MD, PhD, then-medical director of GHS Children’s Hospital, and Larry Gluck, MD, medical director of the Cancer Institute.

“We didn’t need to start from scratch; we just adapted GHS’ many offerings, honing them more toward AYA patients,” he stated.

Dr. Cull said the program’s multidisciplinary nature aims to help make a challenging time easier: “So much already was in place—nutrition, genetics, reproductive endocrinology—and we can support and complement what our colleagues are doing.”

Another benefit is access to both pediatric and adult cancer specialists and social workers. “The AYA program allows for a seamless transition,” emphasized Dr. Saha. “Pediatric patients benefit, for example, from the fertility issues and genetic components we address, and adults who may have pediatric tumors are able to access specialists from both sides.”

Pediatric tumors also can be seen beyond the window of childhood. Dr. Saha remembered a young adult diagnosed with an embryonal rhabdomyosarcoma, something almost exclusively seen in small children. Pediatric oncologists, he noted, have far more experience caring for such patients, using a specific combination of chemotherapy.

“Through the AYA program, we connected that patient with pediatric specialists who were able to address the issues seamlessly,” Dr. Cull recounted.

Unmatched Access to Clinical Trials

GHS is the only upstate facility, and one of just three in South Carolina, to be a Children’s Oncology Group research base of a National Cancer Institute Community Oncology Research Program. This designation gives GHS patients, particularly those within the AYA cancer program, access to front-line treatment trials led by the world’s oncology experts.

“We try to educate our patients about the importance and value of clinical trials, screening AYA patients weekly for supportive care or treatment trials that could benefit them, in an effort to increase enrollment and give them access to new and novel therapies,” Dr. Cull explained.

“We feel taken care of—that the clinic can help us no matter what we need. It has played a great support role in our journey.”

Some trials—even though they are through the Children’s Oncology Group—accept patients up to age 50, pointed out Dr. Saha, so they still can benefit those who fall outside the pediatric age range.

“We’re setting up patients to have the best possible outcomes,” Dr. Saha reported. “Referring physicians can know they have sent their patients to the best place in the region for this kind of care.”

“Coming here,” Cordero summed up, “is about more than just treating my cancer. It’s about me.”

For more information, call (864) 454-AYAC (2922) or visit ghs.org/canceraya.