Getting a cancer diagnosis isn’t easy at any age.
But for a teenager making college plans, for instance, or a young adult considering starting a family, it can be extra challenging and frustrating. And the needs these individuals have often go beyond just treatment.
While oncologists know the unique challenges faced by young people with cancer, the issue has been assessing each patient’s specific needs, during limited clinical time together, and finding the appropriate resources – such as mental health services, fertility care, and peer support – scattered throughout the health care system.
That’s where the new Adolescent and Young Adult (AYA) Oncology Program at the UW Carbone Cancer Center comes in. Launched earlier this year, the AYA Oncology Program aims to meet the unique psychosocial needs of cancer patients and survivors aged 15-39, and support them both during and after their treatment.
“This has really been an ongoing need both locally and nationally,” said Amanda Parkes, MD, a medical oncologist at UW Carbone. “The hope is that our program will allow patients to not only meet with a provider, and discuss the needs associated with having a cancer during this age range and being treated for that cancer, but also then to connect them to these AYA-specific resources that we already have within our system.”
Through the AYA Oncology Program, a patient can connect with a hematologist/oncologist at UW Carbone with AYA expertise for an hour-long consultation, outside of their usual clinic visits, over the phone or by video. The program is open to all teens and young adults, regardless of where they received their cancer care. Since the program uses a telemedicine model, patients from across the state can take advantage of this service.
“It’s a very unique and novel way to care for these patients,” Parkes said.
As for the conversation itself, it’s quite different than your typical trip to the cancer clinic.
“Except for very briefly touching base about it, we don’t talk about chemo and we don’t talk about treatment plans,” said Cathy Lee-Miller, MD, a pediatric hematologist/oncologist at UW Carbone, who also sees patients through the AYA Oncology Program. “We really get to know these patients and understand how their cancer diagnosis is affecting all the other parts of their lives.”
That usually means asking more open-ended questions, and facilitating discussion about broader issues brought about by a cancer diagnosis at a young age. Even when physical discomfort or pain is discussed, it’s reframed in a way that doesn’t rely on numbers or data points.
“In the AYA clinic visit model, it’s more like, ‘tell me about how your pain has affected your life and what you’re able to do,’” Lee-Miller said. “That way, we can help address those issues now so you’re not limited by them 15 or 20 years down the road.”
While the AYA Oncology Program also includes research and educational components for providers, the focus is really on improving care and providing interventions designed to support a healthy and productive life for teens and young adults both during and after cancer treatment, something that Parkes says is critically important and urgently needed.
“There’s really good data out there that AYAs have poorer outcomes when it comes to health-related quality of life, but also, outcomes related to cancer and cancer survival,” she said. “We know that better supporting these patients with high-level psychosocial needs, including those on active treatment, may actually improve the outcomes that we’re seeing in the care of their cancer.”
Ultimately, both Parkes and Lee-Miller are thrilled to be able to offer a service that’s unique to Wisconsin, and look forward to seeing more patients as the year goes on.
“This program really gives young patients a specific outlet for addressing these issues, separate from their oncology care, which I think can be really helpful for them,” Lee-Miller said. “We’re just incredibly excited to be able to hopefully improve the care for this vulnerable population.”