Why do we need a Survivorship Program?

Success in the treatment of childhood cancer has led to an overall survival rate of about 80%. Today, there are nearly 300,000 survivors of childhood cancer in the United States. Currently, about 1 in 640 young adults in the U.S. between the ages of 20 and 39 is a childhood cancer survivor—a number that will continue to increase as more patients become survivors! Most survivors are relatively healthy and enjoy a good quality of life.

However, research has shown that some survivors have to deal with persisting or new health problems that result from their cancer diagnosis or its treatment. These problems are called “late effects.” Late effects develop because cancer treatments, including surgery, radiation and chemotherapy, may damage healthy cells at the same time they destroy cancer cells. Organs, bones or body tissues of children are vulnerable to permanent damage because they are still in development. Sometimes late effects may develop early and persist, or they may only become apparent years later. Late effects can be physical, such as problems with the heart, lungs or bones, or they can be emotional, such as sadness, anxiety or symptoms of post-traumatic stress disorder. For some survivors, treatment can affect learning and memory. Which late effects are likely to occur depends on what type of cancer the child had, what treatments were given and at what age the child was treated. Other health problems and genetic factors may also impact the development of late effects.

Experts recommend that all childhood cancer survivors receive specialized, life-long care to monitor for the development of late effects, to detect them as early as possible, to manage them when they occur and to prevent or reduce the risk for late effects whenever possible. In addition survivors and their families need to be well-informed about what late effects might occur and how the risks can be reduced by living a healthy lifestyle. For this reason, long-term care must include education of survivors and their families about these issues.

Once childhood cancer survivors reach adulthood, the life-long monitoring for late effects must continue. Assisting survivors in transitioning care to health care providers skilled in caring for adults is essential. Appropriate health care for young adult survivors must also include providing assistance with obtaining health insurance, continuing school education, and finding meaningful work that is a good fit for the individual.