Today, there are over 500,000 survivors of childhood cancer in the United States, representing approximately 1 in 750 young adults. An estimated 15,590 kids ages 0-19 will be diagnosed with some form of childhood cancer this year.
Thanks to advances in chemotherapy, radiation, surgical techniques, and immunotherapies, almost 84% of children diagnosed with cancer will survive at least 5 years after diagnosis, joining the growing population of long-term childhood cancer survivors. While this is truly excellent news, even modern treatments can have long-term consequences. And some will still be in treatment or die of their cancer even after that 5-year mark.
By age 50, over 99% of today’s long-term childhood cancer survivors have a chronic illness as a consequence of the therapy they received, and over 96% have a severe or life-threatening illness.
Another way to look at it: By age 50, childhood cancer survivors have experienced, on average, 17 adverse effects, 3 to 5 of those being life threatening. Research to find less toxic cures is the only thing that can change this. Indeed, many of today’s childhood cancer patients receive less toxic therapies, and St. Baldrick’s continues to support research to give the survivors of tomorrow a much better outlook.
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 other serious health issues.
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.
To address the unique issues of childhood cancer survivors, one of St. Baldrick’s research priorities focuses on survivorship. Over $20 million in grants have been awarded to more than 70 institutions specifically for this purpose. 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 become its own medical subspecialty, with some 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 survivors must take that first step and contact the center to establish care!