DEPARTMENT OF DEFENSE - CONGRESSIONALLY DIRECTED MEDICAL RESEARCH PROGRAMS

Johnny Payne

I was diagnosed with stage 2 prostate cancer in 2002 following routine PSA screening at a health fair conducted by my employer. After multiple PSA tests provided results that showed I had high PSA levels and presumably prostate cancer, I had a biopsy performed which officially confirmed this diagnosis. I asked my doctor what the next step was for me and, unexpectedly, he told me “that’s for you to decide”. He did explain the various treatment options available, but encouraged me to do my own research into the different treatments before deciding which treatment path was the best for me. 

I followed my doctor’s advice and did as much research as possible, and I consulted with two other urologists and two oncologists. During the month following my diagnosis, I read five books on various prostate cancer treatment options. In the end, I elected to have a radical prostatectomy.

Through my extensive research, I learned that prostate cancer is more prevalent and often more aggressive in black men. I had a gut feeling that my own cancer was very aggressive and later confirmed this feeling with the pathology analysis performed on my prostate after it was surgically removed – my cancer was close to escaping into the lymph nodes and becoming metastatic. Additionally, post-surgical PSA tests showed that my PSA levels were continuing to rise meaning that there might still be cancer present, so I needed to take further action. For me, that action included external beam radiation, which was successful since my PSA levels have been practically zero ever since. 

Following my own treatment journey, I became involved in prostate cancer advocacy work by joining Us TOO as a support group leader, which I have done for the past 12 years. In 2008, I founded the Upstate Prostate Cancer Alliance, whose mission is to partner with our local Us TOO chapter to promote prostate cancer awareness and education to communities in upstate South Carolina. Through this, we provide information on detection and treatment options to help newly diagnosed men make informed decisions about their treatment. In addition, I also serve as the vice president of the National Alliance of State Prostate Cancer Coalition (NASPCC) and as a South Carolina delegate for the ZERO Prostate Cancer Summit in Washington, DC.   

In 2017, I was nominated by the NASPCC to become a consumer peer reviewer for the Prostate Cancer Research Program (PCRP). Serving on this panel was a truly rewarding experience, and I was pleased to learn how valuable the consumer perspective is in the grant review process. For many years, I’ve worked with the ZERO summit to encourage legislators to keep funding prostate cancer research and now as a reviewer I can finally see how the funds are being used. 

I understand first hand from my personal experience how important it is to raise awareness about getting tested for prostate cancer and to inform those men diagnosed with prostate cancer about what treatment options are available so they can make their own, well-informed decisions. Equally important is finding new advances in detection and treatment. I’m hopeful that through the research funded by the PCRP, we will be able to better differentiate between aggressive cancers that need to be treated right away and non-aggressive cancers that don’t require aggressive treatment to help men make educated, informed decisions.

Last updated Tuesday, September 10, 2019