Childhood Cancer Survivors

Challenges of Childhood Cancer Survivorship

Today, there are over 350,000 survivors of childhood cancer in the United States, representing approximately 1 in 570 young adults. Another 16,500 children will be diagnosed with some form of childhood cancer this year.

Thanks to advances in chemotherapy, radiation and surgical techniques, almost 80% of children diagnosed with cancer will be cured of their cancer, joining the growing population of long-term childhood cancer survivors. While this is truly excellent news, even modern treatments can have long-term consequences.

Over 60% of long-term childhood cancer survivors have a chronic illness as a consequence of the therapy they received, and over 25% have a severe or life-threatening illness.

The health risks survivors face as they age depend on the exposures they received as treatment for their cancer. Each chemotherapeutic agent, radiation dose or surgery has unique potential long-term consequences. The health risks include second cancers, heart disease, infertility and many others.

In addition to the risks to physical health many survivors experience anxiety: 16% of survivors meet criteria for post-traumatic stress disorder. Anxiety and depression can have a profound impact on wellness, even in those with excellent physical health. Knowing the signs of anxiety or depression, recognizing that these do not represent a failure or weakness, and accepting help can greatly improve survivor wellness.

How is the St. Baldrick’s Foundation helping survivors?

To address the unique issues of childhood cancer survivors, one of St. Baldrick’s research priorities focuses on survivorship, and more than 60 institutions have received funding in this area. Some of this work includes both prevention (reducing late effects by changing current therapies) and intervention (treating patients who already have late effects).

For instance, an infrastructure grant, funded in part by the St. Baldrick’s Foundation, has helped Dr. John Gates establish a Long Term Survivorship Program at his institution that aims to meet the medical and psychological needs of survivors:

“Each and every contribution is funding the quality and potential success of our children’s futures,” said Dr. Gates. “Having gone through cancer as a child and survived is not enough. We need our children to thrive as adults.”
Providing individualized, risk-based screening plans and coordination of care for childhood cancer survivors is becoming more and more important. In fact, the care of survivors of childhood cancer has developed into its own medical subspecialty, with a few centers across the country even offering specialized fellowship training in survivorship.

Some centers follow patients for life, others have transition programs where childhood cancer survivors who are now adults can be followed in adult-centered programs that focus on childhood cancer survivor health risks. For survivors, finding a center that can provide individualized, risk-based survivorship care has become easier, but it is up to the survivors to take that first step and contact the center to establish care!