Healthbeat Report: Beyond The Cure

August 4, 2011 (CHICAGO)

Gavin and Josephine Aprile share a special bond, but the father and daughter unfortunately also share something else: a genetic mutation linked to a rare eye cancer called retinoblastoma.

Coincidentally, their cancers were discovered the same way. A home photo snapped of Josephine revealed a flash of white in her right eye, which is caused by a tumor. Her dad's cancer was discovered the same way in a baby picture.

"I was diagnosed at 3 months old," Gavin Aprile said.

Gavin Aprile had to have his right eye removed, but following chemotherapy he was declared cured at the age of 7.

Like many cancer survivors, he put the ordeal behind him. But as more and more survivors reach adulthood, it's becoming clear that they may still have special healthcare needs.

According to the Institute of Medicine, there are now 270,000 adults in the United States who have survived childhood cancer. Two-thirds of them, however, have at least one chronic health condition.

"I didn't know there were other things to be concerned about," Gavin Aprile said.

These "late effects," as they're often called, are medical problems that pop up later in life. Specialized clinics are being created to help survivors watch out for these late effects. There are several in the Chicago area including University of Illinois Medical Center at Chicago and Northwestern Memorial Hospital.

"We gave you some toxic things, which were good and they cured your cancer, but they affected normal cells as well. So what we need to do is make sure you stay healthy for as long as possible," said Dr. Aarati Didwania, internist at Northwestern Memorial Hospital.

Survivors are at higher risk for secondary cancers, which may not be surprising, but they can also be at risk for other conditions including , cardiovascular and lung diseases, learning disabilities and memory difficulties. They may also face vision and hearing problems or infertility.

"So it's partly screening for cancer, but even bigger than this is screening for major organ problems," said Dr. Mary Lou Schmidt, pediatric oncologist/hematologist at University of Illinois Medical Center.

With yearly checkups and a detailed health history, the idea is to catch problems early.

"I think patients are afraid they just want it to be behind them they don't want anybody to find anything else in their bodies," Schmidt said. "So we are very careful to only screen for conditions we know are associated with this specific treatment or diagnosis."

Ashley Tinsley, 19, had bone cancer at the age of 10. She suffers hearing loss from the chemotherapy that helped save her life. Tinsley was surprised to learn, however, that her heart was also affected.

"As long as I am going to the doctor getting it checked, I feel comfort," Tinsley said.

Josephine Aprile's cancer is in remission. She still has both eyes, and her medical future is being mapped out. Gavin Aprile is now in the same program at UIC as his daughter. He's learned he's at greater risk of melanoma and a secondary cancer but right now he's in good health.

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