Voices on Cancer is an award-winning Cancer.Net Blog series where advocates share their stories and the lessons they have learned about being a cancer advocate. Scott Joy is a testicular cancer survivor. As a LIVESTRONG senior leader, he volunteers his time to improve the lives of patients living with cancer. He is also a member of Cyclists Combating Cancer.
This content was developed in collaboration with LIVESTRONG.
My advocacy story
I had no awareness of testicular cancer until I was diagnosed with it in 2003 at age 39. The fluid collecting around my right testicle that my doctor thought was a hydrocele grew into a 9-centimeter tumor. I vividly remember the call from my urologist: “It’s cancer.” I asked Judy, my wife and mother of our 4 children, “How could I do this to you?”
After surgery, I needed to regain some sense of control in my life. I wanted to meet other people facing cancer. I made the momentous choice to travel far from my New Hampshire home for LIVESTRONG’s Ride for the Roses. That 100-mile cycling adventure through Texas hills, heat, and headwinds introduced me to a family of like-minded people out to make the world better. I was hooked.
After 2 years of seemingly endless blood tests, chest x-rays, and abdominal CT scans, I was successfully treated with laparoscopic retroperitoneal lymph node dissection, which meant that I wouldn’t need chemotherapy. Unfortunately, I developed chylous ascites, which is a fluid that fills the abdominal cavity. I filled up like a water balloon, couldn’t work for 3 months, and landed in the emergency room with sepsis. I had to endure 7 weeks with no food by mouth. Still, I insisted I would return to Austin for a second Ride for the Roses. I recovered barely in time. Judy chaperoned, and I rode the entire 25-mile route, scrawny but determined.
From there, I accepted invitations to advocate in Washington, D.C., and at home through what became the LIVESTRONG Leaders volunteer program.
In 2013, celebration of my full decade of survivorship ended abruptly when my wife was diagnosed with a blood cancer. She was 49 years old. Friends in the cancer community introduced us to the Multiple Myeloma Research Foundation and bolstered us with much-needed support and hope. Although multiple myeloma is incurable, many people live with it for years. Advocacy is helping result in improved treatment options and outcomes.
Judy’s early treatment was promising, but her case was especially tough. In less than 3 months, cancer stole the most important person in my life. The world lost an exceptionally smart, caring, beautiful woman. I miss her fiercely.
Channeling pain into purpose
I continue work in Judy’s name and am delighted when our (now adult) children join me. A few of the opportunities that I’ve gratefully accepted through the years include:
Being wide open about cancer’s impact on my life.
Cycling, running, and walking in more than 30 cancer fundraising events around the country.
Making sure people in my community and networks know of and use available cancer programs and services.
Advocating on Capitol Hill to make cancer research, prevention, and survivorship a national priority.
Holding benefit concerts that blend local musical talent and cancer survivorship support.
Joining LIVESTRONG staff in a White House meeting on the Cancer Moonshot initiative to share my family’s story.
What I’ve learned
For 14 years, LIVESTRONG has connected me with the community I need to feel whole and make a difference. I’m constantly reminded of a few key points:
We’re stronger together. No one needs to fight alone. We’re connected the whole world over.
You make a difference. There would be no ocean without the drops that make it up. Together, we’re a sea change.
Let others inspire you. Meeting face-to-face and heart-to-heart helps each of us believe we can do more than we imagined. Everything I’ve done as a cancer advocate has come from the invitation, example, and wisdom of friends.