Monday, September 29, 2008

Saying Goodbye to Young Adulthood...

I have a bit in common with Lance Armstrong; both diagnosed as young adults with testicular cancer, we each have three children, our survivorship has gone beyond the 10 year mark, we both have a love of cycling and we share the same birthday (9/18).

Lance turned 37 this month, I turned 41. While Lance was announcing his return to professional cycling to bring attention to his global cancer initiative, I was busy at work in my day job at the National Cancer Institute and my volunteer effort as President of the Board for the UCF. But I did notice something different about this birthday than any of the previous ones I've celebrated since my diagnosis in 1995 at age 27.

I'm no longer a young adult!

Young adults are commonly defined as those between the ages of 15-40. There are 70,000 young adults in that age range diagnosed with cancer every year. I was about right in the middle of that age range at the time of diagnosis. Married just a year and half, cycling was part of the reason I even noticed my tumor.

Coming off the bike at the end of a ride, I experienced pain and noticed a lump on my testicle. I chalked it up to riding on the pot holed filled streets of DC and gave it time to subside. Instead, it swelled, got very sensitive and more painful. My wife pushed me to do what I knew in my heart was the smart thing to do and I made an appointment to see my internist. He took one look at me and referred me to a urologist who had me in surgery a week later with a pathology report coming back with stage 1 TC. I can't even claim to being shocked, deep down inside I knew it wouldn't be good news. I went for not only a second opinion but a third and all three oncologists said the same thing; surveillance or chemo.

Before I committed to a course of treatment, I needed more info. The internet back in 1995 was a shell of what's available now. All I could find was a basic AOL chat room, which while helpful, didn't have any content. Even the information I received from the NCI was not specific to TC or young adults. Outside of the input I received from other TC survivors, I was on my own to make sense of this. We chose chemo and my oncologist was astute enough to suggest banking sperm prior to starting. My chemo was 8 hours by IV for 5 days with 21 days off. While sitting in the chemo ward in my pleather covered barcolounger getting my 3 drug cocktail, I noticed how much older the rest of the patients were. In fact, in my entire time there for treatment and follow up, I could count on one hand the number of young adults I saw there.

Like many others, my diagnosis helped shape my future. I shifted my health care career to the oncology community as a way to recognize and give back to those that gave their time, energy and lives to developing a chemo regimen that makes early stage TC one of the most curable of cancers. I've been employed in the advocacy community and now at the NCI and have been affiliated with the UCF for the past 6 years. In that time, I've very much respected the effort the Ulman Family put forth to make a difference when Doug was diagnosed and also noticed that there was a lack of information out there for young adults. As a result, the Ulman Family, Brock Yetso (UCF ED), the great staff at the UCF and an amazing volunteer Board of Directors have spent the past 11 years growing the UCF into an organization that is recognized as a leader in the young adult oncology community. Co-chairing the Young Adult Alliance, publishing guidebooks, developing a patient navigator program, and offering scholarships are just a few of the substantive ways the UCF supports young adults affected by cancer. In fact, the scholarship program is one of the most rewarding things I participate in. Reading the applications makes me feel fortunate that I could complete my Master's degree despite my diagnosis happening with a year to go in my program but it also makes me angry. Angry that while we've made progress in some areas, overall improvements in treatments and survival are stagnant and as a result these young adults have to interrupt educational pursuits. Some never get back on track, but through the scholarship program, the UCF can help support young adult survivors getting back to school, so they can enter into their career of choice, perhaps to help bring an end to cancer.

Young adults have needs very different from pediatric and adult oncology patients. It's a wide spectrum of needs as well, whether the issues are around schooling, job, family, fertility, or insurance to name a few. It's because of the effort of groups like the UCF and individuals like Doug Ulman and Lance Armstrong that the 70,000 young adults diagnosed each year have focused efforts at meeting these needs. It's also why young adult survivors feel empowered to speak out against cancer and do something about it. This ultimately is the groundswell that will have the greatest impact.

As I move out of young adulthood (but refuse to grow up!) and near the end of my term as President of the Board, I express my appreciation to the Ulman Family for their work and to Brock for his leadership. Young adults affected by cancer have more resources than ever before and have a greater opportunity than any point in the past to make a difference in the fight against cancer.

Thanks for reading,
Steve Friedman, President of the Board

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