Struggling to Fit In – The Plight of AYA Cancer Patients

by Sarah BartoszSeptember 9, 2019View more posts from Sarah Bartosz

Since 2005, when my son Jack was diagnosed with Neuroblastoma, I have stood on the platform of awareness and research to help find and fund cures for childhood cancer. It is a platform my family certainly didn’t willingly ask to stand on . . . but as my late husband John so thoughtfully said time and time again, “if not us, then who?”

Unfortunately, Jack’s cancer is not the only platform our family found itself atop. Like childhood cancer, this second platform is one for which there were no plans or anticipation. An Adolescent and Young Adult (AYA) cancer robbed the health of a law school student in his prime. My husband John’s battle with an AYA cancer in his early 20’s came with a treatment plan that had one caveat – unknown side effects. John wrestled with this stipulation for the rest of his life, and ultimately, at age 47, the unknown led to his death.

This past June, I attended the Coalition Against Childhood Cancer’s (CAC2) Summit and Annual Meeting. During the Summit, I attended a session specific to the plight of AYA cancer patients, of which there are approximately 70,000 cases in the United States every year. The speaker shared the difficulties in treating these patients, who really do not fit the pediatric or adult cancer “mold” and are, often times, left in a quagmire of care between kids and adults, pediatric hospitals and adult oncology centers. One pediatric oncologist reported the ongoing care of a 50-year-old patient, simply because traditional oncologists were not equipped to manage the long-term side effects.

The age span for AYA cancers is immense, starting the tail end of pediatric cancer specifications (age 15) and ending at age 39. Because of this vast age gap, depending upon where a patient falls within this continuum requires markedly different treatment plans and protocols. Patients on the front end of the AYA umbrella have an adult involved in their treatment decisions, serving as an advocate for their care. However, those in their late teens, 20’s and 30’s could be heading off to college, starting careers, planning marriages, starting a family, and taking on a host of other adult responsibilities. To say the age range diversity creates a huge chasm of issues, considerations, and treatment concerns, would be an understatement.

AYA cancers are most often addressed within the pediatric spectrum and it is pediatric oncologists and advocates who have raised the flag of awareness and the need for better short- and long-term care plans. AYA patients are often in the midst of great biological transitions, which also creates unique challenges for physicians. Similar to pediatric cancers, many AYA cancers have different biological characteristics than the same forms found in older patients. They also tend to be diagnosed at a later stage than adult cancers, which can lead to a less favorable prognosis.

I am a first-hand witness to the impact of harsh treatment protocols, not only for pediatric patients, but also for those who fall just outside both pediatric and adult designations. John struggled with the consequences of his cancer diagnosis for the second half of his life. As John’s health progressively failed, doctors did not know who should lead the responsibility for his well-being, they were unfamiliar with the complications of the side effects, and they struggled with the complexities of effective care. It isn’t cancer that directly took his life; rather, it was the side effects of his ‘cure.’ Death should not the side effect of a cure.

Like childhood cancers, we have just scratched the surface of finding better treatments for many AYA cancers and we certainly haven’t found appropriate means of providing long-term care and support to survivors. Until such advancements are made, I believe we have just begun to hear the stories of the plight of AYA cancer patients and the consequences will be felt by all of us in our communities, our workplaces, and, most importantly, our families.

While attending the CAC2 Summit, I was given the opportunity to stand on the platform of awareness and care for AYA cancers and the impact for adult survivors. I share a unique and complex perspective as a mother and widow who can speak to the topics of quality of life, complications of care, and, my least favorite, the 5-year and 80% survival statistic. Both Jack and John are considered survivors, though neither one is alive to celebrate and ring the bell of life. Again, I have found myself an unwilling participant, but I choose to participate and stand on a platform of hope asking others to join me because . . . if not us, then who?

:-)