UF Health adolescent and young adult cancer program expands
University of Florida (UF) Health News
By Leah Buletti
Gainesville, Florida. — Eight years ago, Jennifer Arrington was simultaneously planning her unborn son’s funeral and her own.
Diagnosed with a rare pediatric cancer while 16 weeks pregnant with her second boy at age 28, Arrington has endured 87 rounds of radiation, eight surgeries including a major neck surgery and nearly four years of chemotherapy treatment. As a young adult dealing with an aggressive cancer while most of her peers were in the prime of their lives, Arrington struggled to find resources appropriate for someone her age.
The isolation was compounded by the rarity of her cancer — rhabdomyosarcoma — which affects only about 400 people per year in the United States.
“In support groups, I would be the youngest one,” said Arrington, who lives in DeLand and was treated at UF Health in Gainesville. “People can’t even pronounce the type of cancer I have. I didn’t qualify for housing resources because of my age. I felt like I was on a hamster wheel, isolated from the world.”
Now, with a nearly half-million-dollar grant from the nonprofit Teen Cancer America, the UF Health Adolescent and Young Adult Cancer program — one of four in the state — will add three positions to expand clinical care and services tailored to the needs of patients like Arrington.
“This funding is tremendously meaningful because it will help us fill the gap for patients who otherwise fall into a gray area without specialized care,” said Leighton Elliott, M.D., an assistant professor of medicine and pediatrics who became director of the program this summer.
Each year, nearly 90,000 adolescent and young adult patients — those between 15 and 39 years old — are diagnosed with cancer.
Although overall cancer survival rates are increasing among this age group, there is still a long way to go to understand why these patients get more aggressive cancers, such as breast and colon, and to address issues of health equity and quality of life, Elliott said. Gaps in research remain in part because these patients are sometimes grouped with older adults or children.
“Cancers in adolescents and young adults present unique challenges, and research into the underlying causes, target metastatic pathways and drug resistance, and novel treatment options is crucial for improving outcomes and developing innovative therapies,” said Joanne Lagmay, M.D., the program’s past director who holds the STOP Children’s Cancer of Palm Beach County Inc. Professorship in Pediatric Oncology.
Teen Cancer America aims to provide the expertise that hospitals and health care professionals need to understand the needs and nuances of adolescent and young adult cancer care. It is among the few organizations that offer this specialized help. UF Health was one of the first cancer centers Simon Davies, executive director of Teen Cancer America, visited after the charity was formed, and he was impressed by Lagmay and her team’s dedication.
The grant will help fund Elliott’s new position, as well as a program manager, adult and young adult life specialist, and a nurse navigator.
Adolescent and young adult patients face specific developmental, mental health, and social challenges, such as balancing school or the start of a career while undergoing chemotherapy. These patients face a heavy financial burden, in part due to having cancer and treatment during a time of life transition. They are more likely to be underinsured, skip care due to cost, go into debt, and file for bankruptcy after a cancer diagnosis than patients diagnosed at older ages, according to the American Society of Clinical Oncology.
Arrington knows these challenges firsthand. She lost her job soon after her diagnosis, forcing her family to rely on one income while simultaneously paying a mortgage and to rent an apartment or stay in hotels while she was treated in Jacksonville and Gainesville. Her family had to resort to fundraisers, and she spent hours researching resources on her own. With two young children — her second born during her treatment survived — it was never enough to cover everything.
“Knowing that someone is there to advocate for patients in our age group is phenomenal,” she said.
Leveraging the expertise of a comprehensive team will enable UF Health to deliver better care for these patients, said Lagmay, who is a member of the UF Health Cancer Center along with Elliott.
Although Arrington has had no evidence of cancer since she completed chemotherapy in 2020, she travels to Gainesville for scans every three to four months and still grapples with the emotional and physical toll of nearly a decade of treatment. She credits her team at UF Health, specifically the pediatric and adult young adult solid tumor program led by Lagmay and radiation oncologist Roi Dagan, M.D., for their dedication.
“I owe them my life,” she said.