CHICAGO – At age 15, Loren LaFata was locked in an intense battle with leukemia that required a stem-cell transplant.

Seven years later, his cancer is in remission and he is studying to be an elementary education teacher. But that doesn’t mean the illness isn’t still part of his life. He deals with skin irritations and joint stiffness, and routinely has to get his esophagus dilated. He struggles to put weight on his lanky 5-foot-11 frame. At school, he has trouble with his memory.

“I try to find ways to not have the disease affect me,” said LaFata, of St. Louis. “But, in some ways, I guess it always will.”

LaFata’s experiences are confirmed by a new study in the New England Journal of Medicine examining the long-term effects of childhood cancer.

The Childhood Cancer Survivor Study Group tracked more than 10,000 survivors – the largest group ever followed. Some experts said the sweeping data are expected to do for childhood cancer what the Framingham Heart Study did for cardiovascular disease.

Among the findings: Almost one-quarter of the survivors reported having three or more severe or disabling conditions, including joint replacement, heart failure and cognitive dysfunction. Two-thirds of the patients reported at least one continuing illness.

“What we know is that even if you received treatment years ago – and may have felt fine – some of the effects of the therapy can lead to significant health problems down the road,” said Dr. Robert Hayashi, co-founder of the Late Effects Clinic at St. Louis Children’s Hospital and one of LaFata’s physicians.

He is also a member of The Childhood Cancer Survivor Study, run by a consortium of 25 pediatric oncology treatment centers that put out the new findings.

The study underscores how tricky it can be to manage the transition from pediatric patient to adult cancer survivor, according to the researchers.

“There’s a dark side to being cured of cancer as a young person,” Dr. Phillip Rosoff, an associate professor at Duke University School of Medicine, wrote in a commentary in the journal.

But there’s also an up side: Until the 1980s, pediatric patients rarely lived long enough to develop such conditions. Nearly 20,000 U.S. children under age 21 receive a cancer diagnosis each year, of which 15,000 will join the ranks of long-term survivors.

“Not that long ago, the idea that we would even have kids living this long would have been unthinkable. But it’s become a very active and important part of our research,” said Hayashi.

When 10,397 survivors (mean age: 26.6 years) were compared to their brothers and sisters, the investigators found “cancer survivors were eight times as likely as their siblings to have severe or life-threatening chronic health conditions.”

Those with bone tumors, nerve cancer, brain cancer and Hodgkins disease – which affects the immune system – were at highest risk.

Survivors were 54 times more likely to need a major joint replacement and 15 more times more likely to have a second malignancy and congestive heart failure. The investigators expect the adverse effects to only increase as this population ages.

Hayashi attributed the joint problems to steroids, which are commonly used to treat certain types of leukemia and lymphomas. In the case of bone tumors, the issue can be a result of surgery or the tumor itself.

Cardiac problems and subsequent malignancies may come from exposure to exposure to chemotherapy and radiation, he said. “But often there’s such a long interval between treatment and symptoms that people don’t make the connection.”

And then, there are the psychological effects. “Cancer forced me to grow up faster,” said LaFata, now 22 and a student at St. Louis Community College. “I have a totally different perspective than other people my age.”

One out of every 640 adults between the ages of 30 and 39 is a cancer survivor, a number expected to increase as medicine advances. Until now, only small studies have been available to look at long-term effects.

“This group is clearly the standard by which all future studies should be measured,” wrote Rosoff.


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