Childhood Cancer Survivors:
Study Identifies Unmet Needs

Survivors of childhood cancer may soon see health care providers direct more attention to managing the long-term side effects of cancer treatment.

While most survivors of childhood cancers report overall satisfaction with the quality of their lives, the “Chronic Health Conditions in Adult Survivors of Childhood Cancer” study published in the October 12, 2006 issue of The New England Journal of Medicine, concludes that survivors of childhood cancer have a high risk of developing chronic health conditions many years after treatment.1 The findings have far-reaching implications, and investigators hope to use the information to develop better strategies to detect and treat complications that can arise many years after cancer treatment.

Health data was collected from 10,397 survivors who were diagnosed with childhood cancer between 1970 and 1986 and lived five years or more after treatment. The control group consisted of 3,034 siblings. Most of the survivors had originally been diagnosed with leukemia, Hodgkin’s disease, and non-Hodgkin’s lymphoma. Other diagnoses included brain/central nervous system tumors, kidney cancer, neuroblastoma, soft-tissue sarcoma, and bone cancer.

The study found that among these survivors, 62% reported having at least one chronic health condition. Thirty-eight percent had at least two conditions and 24% had three or more conditions. Chronic conditions included joint replacement, heart problems, a second cancer, memory and learning problems, coronary artery disease, stroke, renal failure or dialysis, hearing loss not correctable, blindness, or ovarian failure.

As a group, survivors were 3.3 times more likely as their siblings to have a chronic health condition. Females were 1.5 times more likely than males to have any condition and to have multiple conditions. The study also found that childhood cancer survivors are eight times as likely as their siblings to experience severe or life threatening health conditions.

Survivors of bone tumors, central nervous system tumors, and Hodgkin’s disease were at highest risk for severe or life-threatening chronic health conditions. The study also assessed the relative risks to survivors associated with various combinations of therapy, as compared with siblings.

The damage caused by chemotherapy and radiation may take many years to surface, says Debra Friedman MD, a pediatric oncologist at the Fred Hutchinson Cancer Research Center and co-author of the study.

“I think it’s important to recognize that when cancer therapy is completed, the research is not. We need both ongoing research to better understand long-term complications for cancer patients, as well as dedicated survivorship programs that will both conduct this research and provide appropriate clinical follow-up for these patients. Many of these long-term complications are amenable to early detection and treatment.”

Amanda Riley, a 20 year-old BMT survivor knows better than most the problems that childhood cancer survivors face. Diagnosed with Hodgkin’s disease in 1993, Amanda was treated with total body irradiation before her bone marrow transplant in 1994. A year later she relapsed and required spot radiation and chemotherapy to induce remission. In 1998, Amanda developed myelodysplasia and underwent a second bone marrow transplant.

Today, Amanda copes with many medical issues. Congestive heart failure is currently controlled with drugs. She has reduced lung function as well as joint deterioration for which she takes narcotic pain medicine. Dental procedures, particularly tooth extractions, require a monumental amount of past medical history assessments, says her mother, Cathy.

“It’s harder now compared to the cancer treatments,” observes Cathy. “At least during treatment, there was a game plan and you knew what to expect. But now, with follow-up care, there are no set instructions. There’s no list of potential future complications you can give to a primary care physician and to specialists. Oncologists who are used to treating adults seem less familiar with the issues faced by pediatric cancer survivors as they reach adulthood.”

Currently there are 270,000 survivors of pediatric cancer in the United States, a number which continues to grow. Most do not continue to see an oncologist as Amanda does.

“One implication of the current study is the need for continued medical surveillance of adult survivors of childhood cancer,” says study co-author Anna Meadows MD, Children’s Hospital of Philadelphia. “Fewer than 20 percent of these patients are followed by an oncologist or at a cancer center, but they clearly have special medical needs and higher risks.”

Hopefully, the information from this study will help educate childhood cancer survivors about the importance of monitoring their health long-term. Guidelines for long-term follow-up care for bone marrow, stem cell and cord blood transplant survivors were released earlier this year by several leading transplant organizations. To view these guidelines, go to www.bmtinfonet.org/ materials/LateEffects.pdf.

“Many survivors think that once they’ve reached the two- or three-year survival mark, they no longer have to think about long-term complications from their transplant,” says Susan Stewart, Executive Director of BMT InfoNet. “Nothing can be further from the truth. Monitoring for complications is a life-long job.”

Both pediatric and adult transplant survivors will have an opportunity to learn more about the complications that can occur after transplant at BMT InfoNet’s “Celebrating a Second Chance at Life” symposium on Saturday, April 14, 2007 in Oakbrook IL. It will arm survivors with information that can help protect their health long-term, says Stewart.

News from the National Marrow Donor Program

Editor: Susan K. Stewart
Medical Advisors:
Eva Guinan, MD
Dana-Farber Cancer Institute
Thomas Spitzer, MD
Massachusetts General Hospital
Patrick Stiff, MD
Loyola University Medical Center

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