Program specializes in treating adolescents and young adults with cancer

Patrick McCaffery on basketball courtAt 6-foot-8, 16-year-old Patrick McCaffery stands out in a crowd. He’s a star on the Iowa City West High basketball team, where the lanky sophomore plays the wing. He shares the last name of the Iowa Hawkeyes men’s basketball coach, Fran McCaffery—who is also Patrick’s dad.

He’s also a member of another group—one for which membership isn’t an option.

Patrick was diagnosed with thyroid cancer when he was 13. At that age, doctors say, cancer begins to act differently than it does in younger children, but they’re not sure why. There are more long-term effects, including some that remain unknown.

Doctors and researchers with University of Iowa Health Care want to know more about cancers that affect patients like Patrick. The new Adolescent and Young Adult (AYA) Cancer Program—a collaborative program between Holden Comprehensive Cancer Center at the University of Iowa and University of Iowa Stead Family Children’s Hospital—was established for patients between the ages of 13 and 31 diagnosed with these types of cancer: sarcoma, leukemia, lymphoma, thyroid, neuroendocrine, and neurological.

These are the years when cancer affects people differently, says William Terry, MD, MPH, pediatric oncologist at UI Stead Family Children’s Hospital and director of the AYA Cancer Program.

“People in that age range have really not done as well with cancer as younger kids do or as older adults do,” Terry says. “They’ve fallen through the cracks a bit in clinical care.”

Research for that age group is limited, too, Terry says. There aren’t many clinical trials available for people in that range.

“Their cancers are different,” he says. “We know there are effects from these cancers that show up much later in their lives—effects that aren’t seen in really young or older cancer patients.”

And although Patrick doesn’t like to talk much about his cancer—“It was just such a short time in my life, it’s not who I am,” he says—he and his parents, Fran and Margaret McCaffery of North Liberty, Iowa, are glad to help spread the word about the AYA Cancer Program to raise awareness and research funding.

“We just don’t know how this is going affect his future,” Margaret says. “In adults, I think there can be a recurrence of this cancer, but there’s just not enough research in this age group to know what’s going to happen.”

Terry says the AYA Cancer Program through UI Health Care is unique because of the way the campus is constructed.

“In most other settings, the AYA program is either in the children’s hospital, because of the younger patients, or it’s in the adult hospital. Either way, someone has to go to the other location,” he says. “Here, our organizations are structured so that they work together, and as these teens become adults, not only do their medical histories go with them but so do many of the doctors and specialists they’ve been working with.”

Margaret and Fran were first alerted to a potential health issue when a basketball trainer working with Patrick said the teen wasn’t bouncing back from workouts as easily as he once had.

“He just couldn’t recover like he should have been,” Fran says. “Typically he’d rest for a few minutes and then bounce back. But that wasn’t happening. It was just very odd for a kid that age.”

The McCafferys took their son to his pediatrician, who ordered blood tests and X-rays. The bloodwork came back fine, but the doctor noticed a slight deviation in Patrick’s trachea. He ordered an ultrasound for a closer look.

“I think when he saw that X-ray, the doctor had a pretty good idea of what was going on,” Margaret says, “but he wanted to do the ultrasound to be sure.”

The ultrasound showed a mass on Patrick’s thyroid, and he was referred to an endocrinologist.

Two biopsies, surgery to remove the thyroid, and cancer treatment followed. Today, Patrick is cancer-free and on a daily medication to “trick” his body into believing he has a thyroid. His family hopes he stays that way.

Doctors hope so, too. Through the AYA program, Terry says he hopes more research will be done and more clinical trials started to help doctors understand the differences these particular cancer patients face and to find ways to help patients like Patrick face some of those long-term effects.

That’s one reason the McCaffreys are so involved.

“Patrick is going to be picked at and poked the rest of his life, and that’s a good thing,” Fran says. “We just want to try to help this program generate the money and the awareness to do what they’re doing and get some more research going.”

The AYA Cancer Program includes:

  • Coordinated, multidisciplinary clinical care
  • Clinical trials for pediatric and young adult patients
  • Support services to help patients and families manage the demands of school and work while undergoing cancer treatments
  • Onco-fertility options for male and female fertility preservation
  • Genetic counseling to help improve cancer awareness, early detection, and prevention for family members who are at increased risk for cancer
  • Management of pain and assistance with transitions to hospice or palliative care
  • Survivorship planning and clinics to help patients after treatment is completed