After six months of chemotherapy and 20 sessions of radiation, Lela May Klein was bald when she attended her junior prom; 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 it for the long-term," recalls 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 the Survivors Taking Action and Responsibility (STAR) program at the Robert H. Lurie Comprehensive Cancer Center of Northwestern University.

The STAR Program was initiated by Karen Kinahan, a clinical nurse specialist in pediatric oncology, after she noticed adult patients sitting in the toy-strewn waiting room of the oncologist who had treated them as children. "When you're 25 or 27, seeing a pediatric oncologist is not the best way to take care of yourself," she says.

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 who received chest radiation have a higher risk of getting breast or thyroid cancer," says STAR Program director, Aarati Didwania, MD. "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 Dr. 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 the Lurie Cancer Center for her checkups because she's so comfortable with the care she receives there. "I have mixed feelings about continuing the program because I'm not going to be moving back to Chicago, but you build relationships," Klein admits. "Karen and Dr. Didwania are really special people. I get nervous before I go that they'll find something bad, but they do everything they can to make it as easy as possible. It's one-stop shopping."

STAR has three essential components:  comprehensive, state-of the-art-patient care, patient education and research designed to help current and future cancer survivors.  Patient care is provided in an adult outpatient facility of the Northwestern Medical Faculty Foundation, the full-time faculty group practice of Northwestern University’s Feinberg School of Medicine.  The services offered include: 

• An annual physical examination and written summary of the patient’s treatment history (Patients may be seen more frequently when indicated)
• Regular medical surveillance tests and a detailed explanation of test results
• Consultations with sub-specialists when needed
• Communication with the primary care physician
• Education to help survivors take control of their lives and do their part to stay healthy
• Support for survivors with employment or school issues and assistance with insurance questions
• Supportive care team, including a clinical psychologist, for emotional concerns

Another valuable aspect of the program is the opportunity to meet and network with other survivors. "We hold events at least twice a year where we try to get specific groups together," Dr. Didwania says. "We recently had a spa night where patients got more than polished nails--they got to talk to each other about their experiences."

Klein readily confesses that seemingly minor symptoms can cause major anxiety for a cancer survivor, and appreciates having someone to talk to when she worries. "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."

Learn more about the STAR Program at the Robert H. Lurie Comprehensive Cancer Center of Northwestern University, call 312.695.4979.