STAR program helps survivors of childhood cancer navigate long-term later years
Most develop chronic health problems in adulthood
by Dawn Turner Trice
July 31, 2013 — It used to be that when a child received a cancer diagnosis, the focus was primarily an immediate one: To cure the child.
But over the last two decades, researchers have found that the cancer treatments that are so effective in saving children's lives often cause long-term chronic health conditions that don't plateau at a certain age, but rise as patients get older.
Take Hodgkin lymphoma, for example. It has a 90 percent cure rate in children, but chemotherapy and chest radiation directed at a tumor site in the neck and chest areas might weaken heart muscles or make the child more vulnerable to breast cancer years later.
According to research published in June by the Journal of the American Medical Association, 95 percent of children who survive cancer go on to develop a chronic health problem by the time they are 45 years old. There are currently more than 350,000 pediatric cancer survivors in the United States.
Karen Kinahan is a pediatric oncology nurse who started and coordinates a clinic and research and education program for adult survivors of childhood cancer at the Robert H. Lurie Comprehensive Cancer Center of Northwestern University. The program began in 2001 and is called the STAR program — Survivors Taking Action & Responsibility.
"The cure rate for most childhood cancers is 80 percent, and that's pretty good," she said. "But it's not good for someone to be cured of cancer only to have other lasting problems."
STAR is a unique model in that 65 percent of its patients come from the Ann & Robert H. Lurie Children's Hospital of Chicago and transfer into the program when they're about 20 to 25 years old and at least five years post-diagnosis. The average age of patients is 32.
Kinahan said the purpose of STAR is not "disease surveillance," but to look out for late effects. (She led a fascinating study that showed even the physical scars left behind after treatments may take a lasting emotional toll.)
STAR provides support that can range from psychological counseling to medical treatment to preventive care such as cancer screenings, bone density scans, hormone tests, EKG and echocardiograms and mammograms.
There are similar programs at other area hospitals including Advocate Children's Hospital, the University of Illinois Hospital & Health Sciences System, the University of Chicago Medicine Childhood Cancer Survivor Center and Lurie Children’s.
"If our patients need to, they can see an oncologist," Kinahan said. "But one of the bonuses of our program is that we have a lot of the same specialists working with us who are familiar with patients' cardiac issues or their problems with their (gastrointestinal) or endocrine systems."
Kinahan said she got the idea for STAR in the 1990s while working at what was then Children's Memorial Hospital. In 1997, she met Dr. Kevin Oeffinger, a primary care physician who was one of the first physicians in the country to recognize and study the chronic health conditions in adult survivors of childhood cancer.
"We had a lot of adults coming back to Children's Memorial for many of the specialty services cancer patients need," she said. "We figured out that we needed to follow them beyond age 18."
Kinahan said it's important to note that each patient's history and late effects are different and based on the cancer therapy he or she received.
For example, STAR patient Kelly Cotter, 37, was diagnosed with acute lymphocytic leukemia when she was 11 and had a bone marrow transplant at age 12.
Every year, she has a bone density scan, EKG and echocardiogram to check her heart, a mammogram and a breast MRI. She's also tested for skin cancer and potential problems with her vision.
She recalls her pediatric oncologists warning her and her parents that she might not ever be able to conceive children.
"But that was it," Cotter said. "I had wonderful doctors, and if they had known, they would have said something. My experience is that childhood cancer doesn't end when the treatment ends."
Mark Passis, 44, another STAR patient, was diagnosed with bone cancer of the leg at age 15. He said his doctors didn't tell him or his family about the possibility of other health problems down the road.
"Frankly that would have been beside the point," Passis said. "The focus was on short-term survival, especially with such an aggressive cancer."
He said he's lucky in that he hasn't had many health challenges.
"With cancer, you're always trying to get to that five-year mark and you want to feel like you're done and you have this immunity shield," Passis said. "But that's not true of the cancer itself or the other problems that might come later."
Kinahan said that because there are many people, including some physicians, who aren't well versed in the lasting effects of childhood cancer treatments, STAR has created a series of educational videos with patients and Northwestern staff members.
It's called "Get Empowered: Life, Living & Follow-Up Care After Childhood Cancer." You can find it at cancer.northwestern.edu/empowered.
Another good resource for survivor information is the Children's Oncology Group's survivorshipguidelines.org.
"We're working so hard to improve the lives of these patients," Kinahan said. "Over the years, even cancer treatment has become less aggressive in some cases to decrease the late effects."
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(Last updated on July 30, 2013 )