Eight years ago, Jennifer Arrington was planning her unborn son’s funeral and her own at the same time.
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 straight 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 support services tailored to the age-specific 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. “The funding opens doors to worldwide collaborations that we may otherwise not experience.”
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 education, guidance, and support.
“At the invitation of Dr. Lagmay, UF Health was one of the first cancer centers I visited after the charity was formed,” said Simon Davies, executive director of Teen Cancer America. “I was impressed then by Dr. Lagmay and her team’s special interest in and dedication to adolescents and young adults with cancer. Now, as a result of the effective collaboration between our teams to create a sustainable strategy and program that we will enhance by this substantial grant, we are delighted to fulfill those early ambitions.”
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. The adolescent and young adult manager will advance the program by fulfilling administrative needs, such as identifying new grants and clinical trials to bring to UF. The adolescent and young adult nurse navigator will help enroll patients in clinical trials, as well as open new trials, and help with patient care. All positions will contribute to the program’s research goals.
“These young patients are navigating the turbulent transition from childhood to adulthood, a period marked by its own physiological and psychological complexities,” Lagmay said. “Their cancers often differ significantly from those in younger children or older adults, necessitating a focused approach to uncovering the distinct genetic and molecular drivers of these diseases. By delving deeply into these specific causes and refining our understanding of how tumors evolve and resist treatment, researchers can pioneer new targeted therapies that promise not only to extend lives but also to enhance the quality of life for these resilient individuals.”
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 experiencing 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. The life specialist will help patients navigate these hurdles by providing mental health and crucial developmental support, as well as connecting them to other resources within their communities.
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. “By improving the health and well-being of patients, especially the most vulnerable, we contribute to building a healthier and more resilient community, and we have the opportunity to make a lasting impact that extends far beyond the walls of our hospital,” she said.
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.
