Every year, an estimated 70,000 people aged 18 to 39 are diagnosed with cancer – an incidence rate that’s nearly three times higher than in those under the age of 15. Patients in this age group, referred to as adolescents and young adults (AYA), face unique challenges – not the least of which is finding age-appropriate care.
“Cancer is a difficult disease at any age, but young adults face particular challenges,” explains Susan Parsons, MD, MRP, a board-certified pediatric hematologist/oncologist at Tufts Medical Center. “Being treated alongside young children or much older adults can feel very alienating for these patients, and receiving a life-threatening diagnosis just as one’s adult life is beginning is very unsettling.”
“Similarly, as survivors of childhood cancers grow up they can feel like they are neither fish nor fowl when receiving their follow-up care,” Dr. Parsons adds. “Pediatric settings start to feel too young, and there are often few young adults in adult clinics.”
A clinic for young adults
Helping this patient population navigate these difficult waters in a discrete physical space is the impetus behind the recently opened Reid R. Sacco Adolescent and Young Adult Clinic at Tufts Medical Center, of which Dr. Parsons serves as founding director.
The clinic is named for a young man from Lynnfield who was diagnosed with sarcoma in his late teens. During the course of his treatment, Reid and his family experienced first-hand the frustration of trying to find age-appropriate care. Since Reid’s death in 2005, the Sacco family has worked to raise awareness and funds to advance care for AYA patients. The clinic at Tufts Medical Center has been made possible in part thanks to funds raised by Reid’s Ride, an annual 28-mile bicycle ride that takes place north of Boston each summer.
In January, the AYA Clinic began accepting patients who had cancer as children and have completed their active treatment; by summer, a dozen patients were being seen each month – three times the initial volume projection. Tully Saunders can appreciate why the response has been so positive.
In 1990, when he was three years old, Saunders was diagnosed with a rare and aggressive form of lung cancer.
“I went through surgery and chemo; luckily, they were able to fully resect my tumor and I’ve been healthy ever since,” relates the now 26-year-old who serves as the clinic’s program coordinator. “Dr. Parsons was my doctor, and I’ve seen her continually. But as a long-term survivor, if I’m seen on the pediatrics side, the waiting room is all blocks and coloring books with young kids running around. If I’m seen on the adult side, there are a lot of older women with breast cancer or older men with prostate cancer. You don’t fit in.”
The AYA Clinic changes that.
“This is a setting where young adults can get age-appropriate care,” says Saunders. “Clinically, it can be regular follow-up testing or preventive screening, and we can manage referrals to any specialists that a survivor might need.”
In addition, a specially trained nurse produces a condensed, portable medical history distilled from often extensive medical records that survivors can use when establishing new clinical relationships. Dr. Parsons also helps patients develop and rehearse an “elevator speech” they can use in medical and social situations to briefly and accurately explain the effects of their disease on their present state of health.
Perhaps the most patient-prized component of the clinic’s services is peer navigation. Each patient is assigned a clinic staff member, closely matched in age, gender and experience, who helps survivors tackle the myriad transitional issues that arise in their normal development as young adults. These can include applying for academic or vocational training, obtaining health insurance, living independently, getting a job and navigating social relationships.
“When you’re in active treatment, there is naturally a lot of isolation,” Saunders notes. “That isolation can continue into survivorship. If they have any physical or cognitive deficits, survivors may not be able to keep up with their peers who may be going off to college or playing sports. Plus, having the unique experience of cancer, it’s difficult for others, especially teenagers, to understand what the survivor’s been through.”
“One of our main goals is to promote a sense of community among survivors, to show them they’re not alone,” he continues. “For me, being able to interact and communicate with cancer survivors on a daily basis is a phenomenal experience. We also want to show our patients they can interact normally with peers who aren’t survivors.”
The clinic plans to expand its offerings to include young adults with blood diseases and to cancer patients in active treatment.
“Even when treatment is successful, cancer and blood diseases have lifetime effects,” Dr. Parsons adds.
“Our clinic is here to help young survivors manage them.”