|Adolescents and young adults face unique challenges and altered futures from a cancer diagnosis
Stacey Hua once had a definite plan for her future: her own graphic design business, marriage and three kids. But a brain tumor left her with problems with her depth perception and uncertain fertility. Cancer “killed my ambition at first,” said the 21-year-old. “But I want to be the kind of person who tries.”
Hannah Komai spent her 21st birthday learning to use a walker after surgery at City of Hope for bone cancer. As she inched across the room, she tried to adjust to the fact that much of the tibia, femur and knee in her right leg was made of titanium and stainless steel. “It’s not what most 21-year-olds dream of doing on their big day,” she said.
Mackey Mailo was a promising high school defensive end when his headaches started. By the time he entered college, a mysterious bump had begun growing on his forehead. Tests revealed a tumor in the bone of his skull. Suddenly, his football-playing days were over. “I’ve been an athlete since I was 6 years old,” said Mailo, 22. “It was a heart-breaker.”
Each year, about 72,000 adolescents and young adults (AYAs) — defined by the National Cancer Institute as patients ages 15 to 39 — are diagnosed with cancer. City of Hope is marshaling its forces to address the needs of this special group, wedged between pediatric and adult oncology, as evidence mounts that AYA patients not only experience unique psychosocial pressures but unique cancers as well.
Thanks to decades of research, more people than ever — especially children — are surviving cancer. However, survival rates for AYAs have remained relatively stagnant since 1975.
Why remains something of a mystery. “We know older patients may not do as well as children because they can’t tolerate some treatments,” noted Joseph Rosenthal, M.D., the Barron Hilton Chair in Pediatrics and chair of the Department of Pediatrics. “It’s less clear why there’s such a difference between children and AYAs with cancer.”
A 2011 National Cancer Institute study showed that many cancers among people in this age group look and behave differently to cancers of the same types diagnosed in younger and older patients. “In terms of tumor biology, we cannot treat AYAs like children or adults,” explained Rosenthal.
Inspired by the urgent need to change the statistics for AYA cancer, he assembled an informal “dream team” of clinicians, educators, researchers and supportive care experts across City of Hope. They are conducting research into how barriers to care and patients’ compliance with treatment impact survival. They also are experimenting with new technologies to educate patients and expanding supportive care programs to give AYAs the psychological and social help they need.
City of Hope has some built-in advantages in treating AYAs, said Rosenthal, including a patient population that spans all ages, the seamless transition between pediatrics and adult oncology and a strong supportive care program.
Cancer interrupts lives at any age, but especially for young adults, who are still in the process of setting goals, establishing their independence and ticking off those all-important firsts — college, apartment, career, relationships.
“A cancer diagnosis disrupts life when an adolescent or young adult is forming their sense of identity: who they are in their relationships and work. Some lose their sense of purpose, their sense of who they are or who they can be,” explained Jeanelle Folbrecht, Ph.D., interim director of psychology in the Sheri & Les Biller Patient and Family Resource Center.
Jo Ann Namm, M.S., C.C.L.S., said some patients at this age are still trying to discover themselves and what they want out of life. “They’re just beginning to find out,” Namm said. “Then one word — cancer — stops all that.”
In 2011, City of Hope launched a year-long pilot educational and peer networking program, funded by the Lance Armstrong Foundation, for AYAs off treatment and looking to transition from treatment to school, work and developing relationships. AYAs find this transition challenging because they may have fallen behind their peers in school and developed a different perspective on life than their friends. A second group started in March, allowing the patients to meet in six weekly sessions to share stories and activities. “Young adults want to socialize and support each other,” said Namm, manager of the Child Life Program in the Department of Supportive Care Medicine, “but not in the same way as older adults.”
Jonathan Espenschied, M.D., understands that young adult survivors “don’t want cancer as a defining label.”
As director of graduate medical education and clinical training, and a selfproclaimed “tech geek,” he is working to create more technology-driven clinical and educational tools for young adult patients. With funding from the St. Baldrick’s Foundation, Espenschied is conducting a feasibility study using iPad touch-screen technology that allows patients to report difficulties they may be having with their concentration and memory — effects potentially caused by treatment.
Smita Bhatia, M.D., M.P.H., the Ruth Ziegler Chair in Population Sciences and chair of the Department of Population Sciences, also is tapping into digital technologies to increase compliance with medical regimens. She is testing the use of text messaging to remind adolescent and young adult patients with leukemia to take their nightly chemotherapy pills. “This strategy has worked with resounding success with other patients who must stay on medication for a long period,” said Bhatia.
Julie Wolfson, M.D., M.S.H.S., assistant professor in the Department of Pediatrics, is uncovering factors that keep patients in this group from getting the care they need. Struggles to get insurance coverage and a shortage of the right clinical trials can be tough on young adult patients. “I’m convinced that access issues are one reason for the lower survival rates,” said Wolfson.
The medical community is playing catch-up in creating new programs and research for this patient group, physicians said. So far, only a few hospitals and medical schools offer clinical fellowships in AYA oncology. Espenschied expects that to change. “I think we’re making progress with the AYA oncology movement, progress that has been taking place over many years, but now has a larger voice providing a greater awareness of these recognized ‘gaps’ and the specific needs of AYAs,” he said.
Roller Coaster Days
AYAs are a diverse group, but they share a common struggle: the sense they are missing out on a critical time in their lives and they have fallen behind. Hua, who had to take a year off from college, sometimes feels “as if the line’s already three times around the earth, and I’m the last in line.” Counseling at City of Hope helps with the emotional roller coaster of her life that still features “some happy days and some depressed.”
Komai had to leave her school, job and first apartment to move back in with her father and stepmother. “I was completely dependent,” she said. “I didn’t like it, but I had to learn to accept help.”
Mailo felt isolated by his appearance after surgery. The procedure left a horizontal scar on his forehead. For a long time, he hid behind hoodies or hats. The first day he dared to go hat-free, his friends said, “About time.”
“I felt a tremendous sense of relief,” he said.
Cancer also forces young adults to think about decisions they may not be ready for, such as whether they want to have children someday. Treatments can derail such dreams. Komai considered having her eggs harvested before chemotherapy, “but there wasn’t time,” she said. If she does want children, she may adopt.
Next steps, new futures
Now 22, Komai volunteers at City of Hope, escorting new patients. “It’s rewarding to be able to tell others I’m OK,” she said. She has shifted her career goal from physical therapist to registered nurse, specializing in oncology.
Mailo misses football, but he decided that “God must have something else planned for me.” That something is music. He and two friends formed an R&B singing group, Trey Smoov, and are performing and working on their second CD.
Now in her fourth year at Cal Poly Pomona, Hua has slowly returned to classes. She is sticking with her graphic design major, despite her impaired eyesight. “I know it’s going to be difficult,” she said, “but if my work comes out a little different in perspective, isn’t that what art can be?”