Consumer Involvement
Photos and text used with permission of
Robert Young.
In September of 2005, my life took a surprising turn. I injured my shoulder in a golf tournament, so I went to my primary care physician for relief. My doctor is an older physician that runs complete blood work anytime you go in regardless of the complaint. On my follow up visit about a month later, he revealed that my PSA had risen to 6. At that point he referred me to an urologist who subsequently scheduled me for a biopsy. It was at that time in October I was officially diagnosed with prostate cancer. At this time I was 47 years old, which is considered young for a prostate cancer diagnosis. I thought I was too young to face my own mortality, but extensive discussions with my urologist and my wife about treatment options and what to expect helped ease my concerns. In the end we decided to treat my prostate cancer with robotic surgery. Thankfully, I responded well to the treatment protocol. After I dealt with the initial prostate cancer crisis and completed treatment, I was approached by my urologist's office to participate in a Man to Man support group.
After joining this group, I realized how few men share their experiences with prostate cancer. I also began to realize the vast disparity of diagnosis in African American men and others. I became one of the more outspoken men of the group. Based on my involvement, my wife and I were asked to speak to a number of groups, and participate in radio programs and other discussions regarding diagnosis and treatment of prostate cancer. I have hosted seminars with doctors and survivors. The most frequent topics of discussion are usually what tests are used to diagnose prostate cancer, current treatment options, and health disparities in Black men. Over the last several years I have also worked with the Prostate Health Education Network (PHEN), whose overall mission is to eliminate the significant disparity of prostate cancer by way of their central tenet that "knowledge is the best defense against prostate cancer".
Several years ago, while attending the Man to Man meeting, our coordinators asked me if I would like to participate in the Prostate Cancer Research Program (PCRP). She provided me the information and asked if I would like to bring my perspective as a prostate cancer survivor to the peer review process. After reviewing the information I was excited to take part in the process. Looking back this was one of the best decisions I have made.
In my role as a peer review panel member, I have evaluated how well the investigator presented their research idea in the application. I have been able to review from a consumer perspective as well as dialogue with the scientific experts. Many presenters are so caught up in the scientific jargon that they don't present the idea in a way that is understood by most lay people. In some cases the idea may sound great to me but the other scientists will explain the flaws; other times I may think an idea may not have a chance but the scientists will explain how innovative the idea is and how it might just work. I have gained insight into how the scientist develops new ideas and concepts to further understand prostate cancer and develop new potential treatments. I have met phenomenal doctors and survivors who are dedicated to spreading awareness and helping find cures for prostate cancer.
There are many new ideas moving forward to improve early detection, define genetic signatures of a patient's cancer, and determine which treatments will be most effective for each person. Through the support of funding agencies like PCRP, I'm confident that new significant research discoveries and better clinical treatments are being realized. With this research and proper funding, this should reduce the number of men that are initially diagnosed with advanced prostate cancer or metastatic disease.
Last updated Thursday, December 5, 2024