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Young AYA Speaks at Prisma Health Annoucement

During the announcement and check presentation with our new partners at Prisma Health, one of Teen Cancer America’s Young Advocates, Samantha Stacy, lead the charge and spoke about the importance of the AYA program and her experience while going through treatment.

Each year, 80,000 adolescents and young adults are diagnosed with cancer, and in 2015, I was one of them. In March of 2015, I found out my seemingly minor knee pain was actually a form of bone cancer called osteosarcoma. I was forced to quickly leave college and move back home to complete an intense treatment regimen consisting of several rounds of high dose chemo (inpatient and outpatient) as well as a limb salvage surgery over the course of nine months. I went from an active college campus to the adult infusion room at the cancer center…quite a contrast. I remember being there for 8 hours a day twice a week for my outpatient chemo, surrounded by people 40, 50 years older than me, just hoping someone around my age would walk in the room. It never happened.

I finished chemo in December of 2015. While that marked the end of active treatment, there was still lots of healing that needed to be done both physically and mentally. A few days after I finished chemo, I saw a commercial Teen Cancer America had out at the time where they mentioned their mission—partnering with hospitals to build these AYA specific spaces. I quickly found them on Facebook and reached out to them. Over the last few years, I have been very fortunate to get to work with them through writing and other social media outreach. I currently am on two advisory boards with other AYA survivors where we talk quarterly to figure out how to better spread the word about AYA patients and their specific set of needs. Once I saw what TCA was doing, I knew this was something my own healthcare system needed. I just needed to get hooked into the right people within the Greenville Health System/Prisma system. I eventually got put in touch with Dr. Saha and Dr. Cull and have been thrilled to be a part of AYA advisory board here as well.

So why AYA? This particular age group is right in the middle—not kids, so nursery rhymes and primary colors don’t do much for us, but also not full on adults where we are close to retirement. Cancer strikes us just as the world is opening up. We have separate issues like preserving fertility, figuring out school and work, and finances.  We are mostly independent yet get forced back to being more dependent than we have since childhood, and that is if you are lucky enough to have a great support system. According to a fact shared by TCA, AYAs are 7x more likely to be diagnosed with cancer than someone under 15, yet our survival rates have remained unchanged for decades, while many survival rates for other age groups have increased.  We need doctors who know our cancers, access to clinical trials, and help with all the other life stuff that comes along with a cancer diagnosis at a time the world expects us to be young and carefree. We need our own space because we need to know we aren’t alone or as isolated as we feel. We don’t need these things because we feel like we are special, but because our survival truly depends on it.

When I was diagnosed in 2015, I had never heard of AYA cancer care. I had no idea it was a thing. I still remember one of my first times at the cancer center, having a discussion with my mom about needing a space for my age group. The fact that I am able to be here today as Prisma accepts the grant for an AYA  program director means so much to me. It is hard to know exactly what you need when you are in the midst of treatment, but I just know having a solid program and devoted space will make a huge difference In the lives of AYA patients, I know it would have for me. There is not a whole lot anyone can do to make getting cancer better, and I wish there was no need for this kind of thing at all, but since we cannot do those things, I am confident what is being done will only help.

Under the leadership of Dr. Saha and his team at Prisma Health-Upstate, the addition of an AYA Program Manager will help move their program forward and allow more young people to have access to their already growing programs and services!

Many thanks to our partners at First Citizens Bank. Without them, this would not be possible!

To hear more about Samantha’s story and other AYAs, click here.