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Late Effects

Over 75 percent of children diagnosed with cancer now survive 5 years or more.

There are now approximately 270,000 survivors of childhood cancer. This great success story over the last 25 years is largely due to the treatment of children with cancer in context of clinical trials. Surgery, multiple anti-cancer drug regimens and radiation are the available effective treatments. It is now known that both the disease and the treatment can leave some survivors with long-term and late physical and cognitive effects that may not be evident until adolescence and young adulthood.

Research indicates that survivors are at risk for second malignancies, hormonal disorders, infertility, cognitive limitations and heart disease. To maximize their health and productivity, young survivors need to know where and how to provide for their unique health care and social needs. Health insurance and employment discrimination can be a problem for many survivors. It is vital for young survivors to find help and support for these issues.

The National Cancer Institute (NCI) is sponsoring the Childhood Cancer Survivor Study (CCSS), which gathers information about long-term and late effects.

  • The study follows over 20,000 childhood cancer survivors diagnosed between 1970 and 1986 from over 27 centers in the United States and Canada, and approximately 3,500 siblings.

  • The data will ultimately be used to educate survivors about the potential long-term impacts of the cancer and its treatment, and help researchers to design intervention strategies to increase survival and minimize harmful effects.

There are an increasing number of follow-up clinics being developed for childhood cancer survivors around the country. For a list of clinics, visit the website of the Association of Cancer Online Resources.

The National Cancer Policy Board (NCPB) of the Institute of Medicine (IOM) has released a comprehensive report, "Pediatric Cancer Survivorship: Improving Care and Quality of Life." This report defines quality care for survivors and focus on solutions to enhance access to such care. The report also contains policy recommendations on how to improve the services, treatment, and follow-up care for survivors of childhood cancer.

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CFC No. 71422