By: Jonathan Sommers
I still cringe every time someone says to me, “but you’re too young to have had cancer.” Cancer is painfully universal and doesn’t discriminate. It affects the young, the old, the wealthy, the poor, men, women, and any and all races. When we say the word “cancer,” it conjures images of a decrepit old, bald person with ghostly features. But to think that’s the only manifestation of this terrible disease is a common misconception. Even healthy looking, strong, athletic, independent, 27 year olds hear the words “Sir, you have cancer” and it shatters any archetype of this disease. I know this firsthand because at 27, I was diagnosed with testicular cancer. Treated as some sort of social albatross, I found myself pitted somewhere between being a pediatric patient and being an established adult with all the resources that come with being one.
Cancer not only affects the body, but the mind as well. While friends and family members with the best of intentions were telling me how strong I was, the truth was that I was breaking on the inside. I was desperately seeking a place to belong, physically and emotionally. I didn’t want a doctor’s office that had Elmo on the wall—but I might want a place where my mom could spend the night. I was lost in between two medical worlds, neither of which made any accommodations to my unique age and stage of life.
Being diagnosed with cancer was the most terrifying experience of my life, exacerbated by the multitude of psychosocial challenges that the normal 27 year old faces. I relived the trauma of diagnosis when I’d go to the oncologist’s office and I was the youngest person by forty years. I even remember hearing an older patient saying, “He’s so young. He must really be sick.” Being a cancer patient is hard enough, but enduring unwanted pity and the isolation caused because everyone one thinks a twenty-something isn’t supposed to have cancer, makes it nearly impossible.
I didn’t want pity. I wanted to be heard. I wanted to meet other cancer patients and survivors my age that were either going through it or had been through it. I wanted a community of twenty-somethings who got it and whom I could speak with openly.
I met a handful of current testicular cancer patients/survivors and we formed this bond. One of the guys I met invited me on a weekend surfing trip with First Descents, an group that offers amazing adventure programs for young adult cancer survivors. With nothing to lose, I said, “Why not??”
From the first “hello” on the trip, I felt connected to people my age who knew my unique challenges. They kept throwing around the word “AYA.” I had no idea what it meant, but it sounded like the community and support I was looking for. To meet patients that looked like me, ones who knew the frustrations that having cancer in your 20’s brings and to learn that there was a movement of professional clinicians dedicated to providing care specifically for us gave me hope.
That weekend gave me a lot more than just fond surfing memories. (OK. It was more like a rookie’s attempt and was more of flopping around on a surfboard than surfing, but it was a blast!) I was finally connected to something and not alone. I was part of the Adolescent/ Young Adult (AYA) movement.
My amazingly compassionate and wonderful doctor, MD. Mark Litwin, was able to provide a tailored treatment suited to my needs. I received critical free cancer counseling at the Simms Mann Center, run by Dr. Anne Coscarelli and her dedicated staff, who understood my unique needs. I met the infinitely energetic Jonny Imerman and his organization, Imerman Angels, which connects cancer patients with cancer survivors for 1 on 1 mentorship. Dr. Stuart Siegel, one of the pioneers of the AYA movement and 2015 recipient of Critical Mass’ Dr. Archie Bleyer AYA Trailblazer award, became a friend and colleague. I became involved with the Samfund, a charity that helps young adults financially rebuild after cancer, after I received a grant that alleviated the financial burdens cancer left me with.
It doesn’t matter what type of cancer each of us has. As AYAs, we are connected and bonded because we have all heard the words “you have cancer” during a unique time period of our lives and know firsthand the unique challenges it brings. In the community of kindred experiences, we each finally belonged and were going to help each other to get through this terrible disease called cancer.
Jonathan used his cancer diagnosis to follow his calling and creative nature. He currently works at two start-ups that are geared towards doing good in the world. He continues to mentor cancer patients, created an initiative with the LAUSD, UCLA and USC hospitals to change their health curriculum to educate about testicular cancer and serves on AYA@USC executive committee and SWOG’s digital engagement committee.