- The Washington Times - Sunday, September 30, 2001

As more survivors of pediatric cancers are living full adult lives, physicians are realizing the importance of medical and psychological follow-up.

Nearly three-quarters of children diagnosed with cancer are beating the disease, says Dr. Aziza Shad, director of Georgetown University Medical Center's pediatric cancer program.

Georgetown's Lombardi Cancer Center recently began a Late Effects Program that will track pediatric patients, as they may experience treatment-related complications years later.

"It is important," Dr. Shad says. "Survivorship in pediatric patients has risen rapidly, and we are now realizing the long-term effects many of these advanced therapies produce. The Late Effects team is designed to help patients and their families understand the long-term consequences of treatment. We also conduct research to learn how to offset or compensate for these late effects."

Some areas where late effects might occur include physical growth, cognitive abilities, cardiac function, school performance, social and emotional growth and reproductive capabilities, he says.

An individual's risk of developing late effects depends on what type of cancer he was diagnosed with, as well as the therapy used to treat it, Dr. Shad says.

"For example, certain brain tumors are treated with chemotherapy and radiation, both of which may affect the developing brain," he says. "Patients may experience a drop in IQ or develop learning disabilities, which can go unrecognized until they get to school. Patients who had radiation to the chest or abdomen are at risk for endocrine problems involving the thyroid or reproductive glands, which may result in stunted growth or fertility issues."

The risk of getting cancer within 25 years of an initial cancer diagnosis is six times greater for pediatric cancer survivors than it is for persons who never had cancer, estimated Dr. Hamish Wallace, a pediatric oncologist at the Royal Hospital for Sick Children in Edinburgh, Scotland, in a recent edition of the British Medical Journal.

That risk increased in part because radiation and chemotherapy can increase the risk of other types of cancer, Dr. Wallace says.

He suggests that lifetime follow-up should occur every year by either a primary care physician or specialist.

Nancy Keene, an Annandale woman whose now-13-year-old daughter beat leukemia, says childhood cancer survivors need to keep precise records of their treatment.

"They need to have copies of what the disease was and what the treatment was in writing," says Ms. Keene, author of "Childhood Cancer Survivors: A Practical Guide to Your Future." "That includes what the drugs were and how much was given. I interviewed 109 people for my book and only one had records."

Sticking with a late effects program is an ideal way to get thorough medical and psychological follow-up, she says.

The psychological follow-up is an important part, Ms. Keene says.

"They want to leave it behind," she says. "But it is hard to keep screening for risks and also lead a normal life. What happens typically is an oncologist cures the kids, but after that, a majority of children only get screened for the disease they had. They don't get the right follow-up."

Emotional care is part of Georgetown's program, Dr. Shad says.

"There is the fear of not being accepted when they go back to school and the fear the disease will come back," she says. "We see post-traumatic stress disorder year in and year out. We are working to show families what they can expect as they get further away from treatment."

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