Real-Life Stories

Survivorship: A Lifelong Journey

by Becky Chapman Weaver, Chief Mission Officer
May 31, 2019

Sunday, June 2 is National Cancer Survivors Day, and we at St. Baldrick’s have dubbed the entire month of June “Cancer Survivors Month.” Our focus for the month ahead will be to bring awareness to the fact that surviving childhood cancers is just the first step in a lifelong journey for many survivors.

A series of four copy-based statistic windows show the following important stats: first, that by the time they're 50, 99% of childhood cancer survivors will have had a chronic health problem other than cancer. Second, that in the U.S. there are 420,000 survivors of childhood cancer. Third, that by age 50, childhood cancer survivors will have faced an average of 17 adverse health effects from their cancer diagnosis. Finally, donors have helped fund more than 140 grants totaling over $19 million to improve survivorship outcomes.

Today in the U.S. there are about 420,000 survivors of childhood cancer. That’s about 1 in every 750 young adults. Whether they were diagnosed as infants, children or teens – and whether they are aware of it or not – their health needs to be monitored carefully for the rest of their lives

A person’s risk of late effects of cancer treatment depends on his or her tumor, specific treatments, and their own age and genetic makeup. Surgeries, chemotherapies, radiation, stem cell transplants and other treatments take a toll on the body – and sometimes the mind – in many ways. Some make life more difficult, others are life-threatening.

A website banner inviting readers to learn more about pediatric cancer survivors by clicking through.

These late effects can impact pretty much any part of the body, and some survivors might have more of an uphill climb than others. Heart and lung problems are common, as are secondary cancers. Some survivors will have mental health needs (with socialization, psychology, or PTSD) or have cognitive deficiencies, while others may not hear as well, may have hormonal imbalances or difficulties growing, or could face bone density issues and easy fractures. Fertility and reproductive problems may not manifest themselves for several years (and may not be top of mind for younger children and their families) but may cause difficulties well into adulthood.

As Time Marches, The Late Effects Don’t Go Away

With every year that passes, the risk of these late effects doesn’t decrease: It increases. The most common causes of death for childhood cancer survivors are the return of their primary cancer, another cancer, and heart and lung damage.

We used to say that more than two thirds of all childhood cancer survivors experience serious health consequences of their treatment. Today research supported by St. Baldrick’s, which took a longer and more detailed look at survivors, shows a harsher reality:

By the time they are 50 years old, more than 99% of childhood cancer survivors will have a chronic health problem, and 96% will have had severe or life-threatening conditions. Another way to look at it: By age 50, childhood cancer survivors will have experienced, on average, 17 adverse effects, 3 to 5 of those being life threatening.

If all of this sounds scary, it is. Imagine having a heart attack in your 20’s. Or being diagnosed with breast cancer in your 30’s as a result of the radiation you had as a child. Or fighting graft-vs-host-disease for years after the bone marrow transplant that rid your body of cancer. These are just a few of the reasons that many say, “a cure is not enough.”

This Month, We Spotlight Survivors

Throughout Cancer Survivors month, leading up to the St. Baldrick’s Survivorship Giving Day on June 25th, we’ll share what real life is like for a few survivors and their families — their highs and lows, trials and achievements. Join us in our fundraising efforts this month to support research that will give the world not only more survivors, but also give those survivors healthier, longer lives.

St. Baldrick’s remains laser focused on finding better treatments for those we can’t cure yet, while working to lessen the lifelong challenges faced by survivors, caused by the very treatments that cured them. St. Baldrick’s has funded more than 70 institutions and donors like you have funded more than 140 grants totaling over $19 million to improve survivorship.

Some, like Supportive Care Research Grants, focus on how to help those who are already survivors to lead healthier lives. Other grants aim to change treatments for patients of today, so the survivors of tomorrow will face fewer late effects. Until every child survives and thrives, we’ll keep funding research.

We invite you to take a look at our Cancer Survivors Month page and also to follow us on social media if you aren’t already. Throughout this month, we hope to put the faces of survivorship center stage, so you can see how critical these issues are and how your support of the work we fund at St. Baldrick’s can decrease some of the long-term issues survivors of pediatric cancers will face throughout their lives.

A website banner inviting readers to learn more about pediatric cancer survivors by clicking through.

Join the fight against childhood cancer.