Program Assists Survivors Of Childhood Cancers With Customized Adult Healthcare


After six months of chemotherapy and 20 sessions of radiation, Lela May Klein attended her junior prom bald. But she was cured of the Hodgkin's disease that had been diagnosed a week before her 17th birthday. 

"I did one year of follow-up, but they never told me I would need long-term follow-up," said Klein, now 29.

When she moved to Chicago after college, she took it upon herself to find a doctor who could help her manage the risks she faces as an adult survivor of childhood cancer. Google led her to theSurvivors Taking Action Responsibility (STAR) program at the Lurie Comprehensive Cancer Center of Northwestern University.

The STAR program was launched at Children's Memorial Hospital in 2001 after Karen Kinahan, a clinical nurse specialist in pediatric oncology, noticed adult patients sitting in the toy-strewn waiting room to continue to see the  oncologist who had treated them as children. She researched an existing program in Dallas that transitioned pediatric cancer patients to adult programs and brought the idea to Children's, which was then moved to Lurie.

"When you're 25 or 27, seeing a pediatric oncologist is not the best way to take care of yourself," she said.

Survivors of childhood cancers face specific health risks as adults. Depending on the treatments they received they could have a higher risk of certain other cancers, heart problems or decreased fertility. Even if their primary care physicians know their unique risks, they don't necessarily have the expertise to treat them.

"Patients diagnosed with Hodgkin's disease that receive chest radiation have a higher risk of getting breast or thyroid cancer," said STAR program director and general physician Dr. Aarati Didwania. "Patients who were treated with radiation have a risk of getting skin cancer and need to be careful in the sun."

Klein's annual visit to Kinahan and Didwania usually involves a heart ultrasound, a battery of blood tests, a mammogram, a chest MRI, a session with a counselor and a folder full of educational materials to take home printed out for her by Kinahan. Although Klein is currently a student at Harvard Law School in Boston, she returns to Chicago for her checkups because she's so comfortable with the care she receives from Kinahan and Didwania.

"I feel mixed because I'm not going to be back in Chicago, but you build relationships," Klein said. "Karen and Dr. Didwania are really special people. I get nervous before going that they'll find something bad, but they do everything they can to make it as easy as possible. It's one-stop shopping."

The STAR program goes beyond just the basics of medical care for new patients. Kinahan tracks down all previous medical records for them so she knows exactly what treatments the patient received and when they had them. After an initial chart review with her, the patient then talks to a psychologist to monitor their levels of stress and possible depression. 

Didwania performs a physical exam and refers patients who need more help to specialists trained in the needs of childhood cancer survivors.

"We have a specialist in every field--fertility, pulmonary, cardiac--probably 10 specialists that we can refer patients to," Didwania said.

The STAR program is also establishing support programs for patients, as well as working with Gilda's Club, a Chicago support organization with facilities at 537 N. Wells St. The club is named for Saturday Night Live comedian Gilda Radner, who died of cancer.

In addition to the club's activities, "we hold events at least twice a year where we try to get specific groups together," Didwania said. "Patients go to a spa night, get their nails painted and they can talk to each other about their experience."

Klein has discovered that survivors tend to find each other, even without the help of groups.

"I was at a cocktail party two weeks ago and I realized the woman I was talking to had the same scar on her chest that I did," a scar left from the catheter portal used for chemotherapy, she said. "We both had had Hodgkin's lymphoma. And the same thing happened at a wedding over the summer."

Kinahan also taps the patients' experiences to accumulate data for clinical studies to help other caregivers. But she stresses that this is not a money-making venture for the hospital.

"We can bill for lab tests and routine visits, but getting their records together is done for free," she said.

Klein's cancer diagnosis came from seemingly random symptoms such as a swollen neck and night sweats, and she admits that she's now a little paranoid about common complaints like insomnia that usually end up being nothing. She praises Kinahan's patience with her inquiries.

"Karen is my go-to girl. She'll call me from home. She even called me from vacation once. There's no one like her," she said


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