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Figure  . As more children survive cancer, more attention to follow-up care is imperative. Photo courtesy of Angels & Monsters: A child's eye view of cancer. © American Cancer Society, 2002.

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A recent study, published in the New England Journal of Medicine (2003;349:640–649), finds that most children who remain in remission from acute lymphoblastic leukemia (ALL) for 10 years or more go on to lead lives very similar to those of people who did not have cancer. However, children whose treatment included craniospinal radiation seem to experience more problems than children who were not treated with radiation.

Ching-Hon Pui, MD, and colleagues from the St. Jude Children's Research Hospital and the University of Tennessee Health Sciences Center followed medical outcomes and socioeconomic indicators of patients with ALL treated in clinical trials at St. Jude between 1962 and 1992. Radiation had been used to treat 597 of the patients, while 259 were treated without radiation. All were under age 21 when they were diagnosed (with a median age of 4.5) and all had been in remission from the leukemia for at least 10 years.

Estimated 20-year survival rates for the irradiated patients, nonirradiated patients, and the general US population were 95.1%, 98.3%, and 99.7%, respectively. (These rates are higher than the overall rates for ALL survival because the study included only subjects who were already 10-year survivors.) The cumulative20-year incidence of developing a second neoplasm was 0.95% among nonirradiated survivors. Among those who had received craniospinal irradiation, the incidence was 20.9% (13.3% after excluding basal cell carcinomas). The most common second malignancies were tumors of the brain, thyroid, oral cavity and pharynx, and liver, and myeloid leukemia. Most second neoplasms occurred within or adjacent to the irradiated area.

The indicators of socioeconomic status reflected the known impact of cranial irradiation on physical and neurocognitive development. Women seemed particularly susceptible to these problems. Unemployment rates among female ALL survivors, and particularly those who had been irradiated, were higher than the national average. Relative to the national average, only those men who had been irradiated were more likely to be unemployed. Compared with national averages, the percentage of survivors currently married was lower among women who had received radiation therapy, but was not significantly different among nonirradiated women, or among men, regardless of their treatment. Rates of private health insurance coverage were not influenced by treatment in either men or women.

A few decades ago, the outlook for children with ALL was bleak, recalled Joseph V. Simone, MD, in an editorial accompanying the study. Treatment improvements since that time “are surely among the most dramatic in the history of cancer,” wrote Simone, a pediatric oncologist and Chairperson of the National Cancer Policy Board. Indeed, a graph in Simone's editorial illustrates that long-term survival rates have increased from only a few percent in 1950 to their current level in excess of 80%.

Simone also recounted how addition of irradiation to chemotherapy made long-term survival a reality for children with ALL, and how craniospinal irradiation has been largely replaced by intrathecal chemotherapy once the late effects of the former were recognized.

However, the current practices and systems for follow-up care of childhood cancer survivors are inconsistent. With this in mind, the National Cancer Policy Board and Institute of Medicine reviewed current evidence and developed a report, Childhood Cancer Survivorship: Improving Care and Quality of Life. The report, which includes recommendations on services, professional education, and research, is available on the National Academies website, http://books.nap.edu/books/0,3090,88984/html/index.html.

“Cancer in children has largely become a chronic illness rather than an acute illness…, which is what it used to be. [The] cancer may be eliminated, but the effects of cancer and its treatment may not be. We need to maintain responsibility for that child and eventual adult to try to mitigate the effects of disease and treatment,” said Simone.