The Cost of Being a Survivor

Survivor(n): a person who continues to function or prosper in spite of opposition, hardship, or setbacks.

The ultimate goal of every family enduring a childhood cancer diagnosis is survival. No brainer, right? Every parent who has a child battling cancer longs for nothing more than to proclaim their child is one of the 80% who survived this horrible disease and gets to “ring the bell” at the end of treatment to happily return to their pre-cancer lives.

The difficult reality in all of this is that their child’s life will never return to the way it was before cancer invaded their world. Instead they must to come to terms with the “new normal” of their life post-cancer. A life that has them staring face-to-face with the stark reality of what that 80% really means.

Last month, I attended the Coalition Against Childhood Cancer’s 2019 Summit and Annual Meeting. Survivorship was one of the many seminar topics. All participants, myself included, were part of a greater discussion around the “80%” statistic and the stark reality of the life a survivor of childhood cancer faces.

Common Statistic: 80% of children survive childhood cancer
Reality: The average age of diagnosis is 6

* One in five children will die within five years of diagnosis
* One of the survivors will die within 30 years due to treatment side-effects
* Two of the survivors will suffer life-threatening health conditions or disabilities
* The remaining survivor will live more than 30 years but deal with long-term health, social, and emotional concerns

The American Association for the Advancement of Science published an article this past March detailing the debilitating impact of pediatric cancer treatments for survivors. The article reported the incidence of significant on-going health issues from a study of 1,700 childhood cancer survivors, ages 18-60. More than half of the survivors reported a list of concerns including infertility, abnormal lung function, hearing or vision loss, abnormal cholesterol levels, hormone and endocrine dysfunction, and heart value abnormalities. In addition, the list of psychosocial and emotional challenges were heartbreaking. This is not okay!

This was my life during the years my husband, John, suffered from the impact of the cancer treatments he underwent as a young adult. John faced these same statistics; and while he was considered a survivor, he died within 30 years of his diagnosis from the side effects of his ‘cure.’ What John and the 80% of childhood and young adult cancer survivors endure might be “surviving” it is most certainly not “thriving.” In fact, adolescent and young adult cancers are most often lumped in with pediatric cancers as orphan diseases often treated by pediatric oncologists.

In actuality, 80% of those we deem “survivors” will in fact, not survive the aftermath of their battle. There is something profoundly wrong with this outcome…a “cure” should not ultimately lead to death. The burden of survivorship is too great. We have to get the best treatments in line with true survivorship.

I have long considered myself an advocate for Jack and children like him diagnosed with cancer; what I didn’t realize, however, is that I must also an advocate for John and the other young adults who hope to face the rest of their lifetime with good health and great happiness. Both considered survivors, neither survived.

Survivorship affects all of us. It is estimated that by 2020, there will be half a million childhood cancer survivors in the United States. These survivors will be your friends, colleagues, neighbors, and loved ones. Until we can “ring the bell” of true survivorship, we must collaborate and communicate on how to change the outcomes of true prosperity for everyone. No brainer, right?