Getting Follow-Up Care
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By Jenny Song

Getting Follow-Up Care

Researchers are pinpointing the long-term effects of treatment on childhood cancer survivors

By Jenny Song


Pediatric oncologists and childhood cancer survivors have long been aware of potential long-term or delayed health problems due to cancer treatments. Recent published reports from the Childhood Cancer Survivor Study (CCSS) are now showing the extent of such effects, including an increased risk of heart disease, a second cancer diagnosis, strokes and other problems.

A multi-institutional study, the CCSS surveyed more than 10,000 pediatric cancer patients who were treated between 1970 and 1986 and survived for at least five years after treatment, as well as 3,000 of their siblings. According to a report in the Oct. 12, 2006, issue of the New England Journal of Medicine, the survey results showed that 62 percent of the CCSS cancer survivors developed at least one chronic health condition between six and 31 years after diagnosis; 28 percent were found to have a severe or life-threatening problem. Survivors were eight times more likely than their siblings to have severe or life-threatening health conditions.

The findings should serve as a wake-up call for childhood cancer survivors, according to Craig Lustig, the executive director of the Children's Cause for Cancer Advocacy, a nonprofit organization based in Silver Spring, Md., and a 12-year brain tumor survivor.

"You think that as you get farther away from your [cancer] experience, it's good news because you haven't had a recurrence ... but you have to be that much more conscientious about getting that follow-up as you go on," he says.

Pediatric oncologist Aziza Shad of Georgetown University Hospital in Washington, D.C., agrees. "Patients should educate themselves and understand that there may be late effects, but unless you get follow-up care, we won't know," she says. "If you get follow-up regularly, then even as things are happening, one can intervene and help take care of them."

That's why it's crucial for patients to be enrolled in a survivorship program, says Anna T. Meadows, a pediatric oncologist at the Children's Hospital of Philadelphia. According to Shad, these programs may be known by a variety of names, such as cancer survivorship programs or long-term effects programs, and they serve a vital role. "To have someone who can consistently follow you along with your primary care physician, internist or pediatrician is very important," says Shad.

Unfortunately, many adult survivors of childhood cancer don't get follow-up care. Fewer than 20 percent seek this care at a cancer center or from an oncologist, and the percentage decreases as survivors' time away from treatment increases.

One contributing factor may be that as childhood cancer survivors reach adulthood, they're no longer covered by their parents' health insurance and may not have health coverage of their own.

"For a young, healthy person who's not making a lot of money, he may opt to go with either limited insurance or no health insurance at all, and that may be OK if you don't have a cancer history," says Lustig. "But if you do, you really need that coverage."

Several states, including Colorado, Massachusetts and New Jersey, have expanded health coverage so that a dependent child is covered under a parent's policy well into their 20s. Still, more remains to be done, says Lustig.

One important caveat arises from the CCSS study, which researchers are quick to point out: The patients in the study were treated between 1970 and 1986, so new therapies since that time might translate into fewer or different long-term effects. It's something that current pediatric cancer patients should keep in mind, pediatric oncologists say.

"Treatment has changed," says Shad. "You can't take all that information and say that these are exactly the late effects that are going to happen to patients who are being treated currently."

Meadows agrees, but she notes that the general message regarding follow-up care still applies. "For patients who've been treated in the '90s and more recently, they are probably not so likely to have as many problems, but they still need to continue to follow up with a health care provider who understands the risks."