Childhood leukemia survivors face lifelong health challenges

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Physicians given care guidelines for survivors in adulthood

The first generations of children cured of leukemia by pioneering therapies are now adults, facing lifelong risks of treatment-related health issues that can pose a challenge for their primary care physicians, says a pediatric oncologist at Dana-Farber Cancer Institute and Children’s Hospital Boston.

The harsh doses of chemotherapy and radiation that won the earliest successes in leukemia and other childhood cancers have left a legacy of multiple medical risks for tens of thousands of survivors now in their 20s, 30s, and beyond, writes Lisa Diller, MD, chief medical officer of Dana-Farber/Children’s Hospital Cancer Center in the Oct. 13 issue of The New England Journal of Medicine. 

Increasingly, physicians will need to be knowledgeable about symptoms and complaints that might be related to cancer treatments their patients received decades ago, Diller says.

“We have to get ready for this generation of wonderful successes from the latter part of the 20th century,” says Diller, who is also the director of the Perini Family Survivors Center and the David B. Perini, Jr. Quality of Life Clinic for Cancer Survivors at Dana-Farber. "By the mid-21st century they’ll be aging and we need to be aware of what we’ll be seeing."

Some of those who beat childhood cancer are being monitored in survivors’ clinics at major centers, but most are cared for by primary care physicians who may see only a small number of such patients. Diller says it is critical that adult survivors have a summary of their diagnostic tests and cancer care. It is becoming standard for pediatric oncologists to provide treatment summaries to their young patients, families and physicians, but this wasn’t always done in the past. And decades later, the patients themselves aren’t necessarily accurate in their recollection of therapy details, including experimental drugs that may have been labeled only with a manufacturer’s code.

In her Clinical Practice article, Diller explains, "I wanted to get across to the general medical public that if a patient gives a history of childhood cancer, the physician should consult with an oncologist to put together a treatment summary" to enable the physician and patient to create a plan for continued monitoring.

A large study of adult cancer survivors treated as children between 1970 and 1986 found that 25 years after treatment, 27.5 percent of those surveyed reported “at least one severe, life-threatening or disabling condition,” in contrast to 5.2 percent of their siblings around the same age.

Diller says primary care physicians should be aware of elevated risks of a wide range of late complications. Survivors can be more likely to develop additional cancer, including brain tumors, thyroid cancer, skin cancer, and sarcomas.  They have a higher risk of cardiac disease – especially those treated with large doses of anthracycline drugs, such as doxorubicin. Another possible consequence is metabolic disease — a cluster of disorders including overweight and obesity, diabetes, hypertension, insulin resistance and cholesterol imbalances. In addition, many have low bone density and impaired growth.

Patients treated in the 70s and early 80s often received high doses of radiation to the brain and spinal cord. Many were left with cognitive issues, such as problems with memory, mental processing, attention and learning difficulties. As a result, the survivors have a lower rate of college graduation, as well as challenges concerning employment and health insurance.

It is important to recognize, says Diller, that over time, treatment regimens have been refined to minimize the use of radiation and to avoid drugs that cause severe late side effects.

"I think we may also see a more-fit, less obese, physically active group of survivors," too, Diller says, due to better interventions to reduce social isolation and encourage healthy behaviors.


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