When one hears the terms “adolescent” and “young adult,” several things may come to mind. You may think about those in high school or college. Maybe you think about that whole period of time after college when you are trying to figure out how this whole “adulting” thing works. While there are many stressful factors about this particular time in our lives, it is generally regarded as a time of excitement and opportunity.
Whatever you think of, it’s probably not about getting cancer. I can pretty much guarantee cancer never crossed the minds of the 70,000+ adolescents and young adults who find themselves diagnosed with cancer each year. I know it never crossed mine.
I was 20 years old back in 2015, when I found out the seemingly minor pain in my knee was actually a form of bone cancer called osteosarcoma. I had to abruptly leave my sophomore year of college to begin an intense, high-dose chemotherapy regimen. From April to December of 2015, I had six rounds of both inpatient and outpatient chemo, as well as a limb salvage surgery (they replaced my knee and part of my femur with metal). On top of dealing with all the side effects of chemo, I was wheelchair bound for months and had to relearn how to walk. Needless to say, it is not exactly how one pictures life in their early 20s.
I spent eight hours a day, two days a week every few weeks at the outpatient clinic getting chemo (never mind all the weekly appointments in between). I remember sitting in the infusion room, surrounded by people significantly older than me, just hoping someone my age would walk in the door. In all my months of treatment, it never happened. I also spent two weeks of each cycle as an inpatient on the fifth floor. In all my months of being inpatient, I never once left my hospital room.
I can clearly remember telling my mom that I wished people in my age group had their own space. Adults have one, as do pediatric patients, but there was a gap where adolescent and young adult (AYA) patients were concerned. Shortly after finishing chemo, I saw a commercial for an organization called Teen Cancer America, whose mission is to partner with hospitals to fund programs and spaces for AYA patients. I have been fortunate enough to work with them the last few years and support their mission.
I had no idea AYA care was a thing, let alone that other people were recognizing this “gap” in cancer care, before finding TCA. After I found them, I knew that Prisma Health needed this.
I am thrilled Prisma Health received a grant to fund a patient navigator for their AYA program. I know this will have a huge impact on AYA patients, because I can only imagine how much it would have helped me. No one expects a cancer diagnosis, but when you are in a stage of life where the world expects you to be young and carefree, it is even more difficult. AYAs are seven times more likely to be diagnosed with cancer than someone under 15, yet our survival rates have not changed in decades. The amount of AYA patients in clinical trials is staggeringly low. While there are many contributing factors, it is largely because of a lack of attention and awareness. Having a program navigator will allow patients to have easy access to information about clinical trials, financial assistance, and fertility choices.
I know from my experience that when you get a cancer diagnosis, you go into survival mode. You feel like you were swept up in a tornado and you aren’t sure when you will be able to get your feet back on the ground. Figuring out what to do about school and scholarships in the midst of scheduling scans and starting chemo is unfathomable. Being able to have someone who can tell you who to contact and suggest resources would have been so helpful during that time. There are resources out there, but when you are in the fog of cancer, you need someone to direct you to them.
Having this patient navigator will help the AYA program become stronger so that more patients will have the support they so desperately need. Having cancer at a young age is so isolating. Meeting other people in your stage of life who understand the cancer experience is so important for emotional healing.
AYA patients have their own specific needs that differ from those of other age groups. I am confident that having an AYA program with a patient navigator will help to make a what is a pretty miserable experience much less miserable for those forced to face it.
Blog author Samantha Stacy now is 24 years old and serves as a patient ambassador for Teen Cancer America. She also serves on the advisory council for Prisma Health’s Adolescent and Young Adult Oncology Program.