Consumer Involvement
My journey began on the 30th of July, 2010, when I was diagnosed with prostate cancer. Initially, my prostate specific antigen (PSA) was elevated at 5.45. I went in for a repeat test a few months later and since my PSA was still elevated, I was referred to a urologist. The urologist told me that I had an enlarged prostate and that I needed a biopsy to determine if it was cancer. The urologist called to tell me the test results a few days later, which was the same day as my daughter’s vow renewal. When I got the news that my test results confirmed that I had prostate cancer, I was playing golf with my son and son-in-law, so for the next three and a half hours, I had to hold it together and finish the game without telling them the news. Needless to say, I shot a 90-something game that day and my family knew something was wrong since I normally shoot in the 70s!
After golf, my wife could tell that something was wrong. I told her I had cancer and she collapsed in my arms and wept profusely, but we both agreed we had to be strong and not spoil my daughter’s vow renewal. After the ceremony, I told my entire family the news.
The following Tuesday, my wife and I met with the urologist to discuss treatment options. We discussed surgery as an option, although I wasn’t comfortable with that option, so I went to see an oncologist for a second opinion. We discussed proton treatment, which I was a good candidate for. After talking with others who had proton therapy, my wife was also convinced that this was the best route for us.
While I was going through proton therapy, I became interested in advocacy. A support group that I attended only had 5 or 6 African American members out of about 100 patients. Through some research, I found out that prostate cancer is a significant problem for the African American community and that health literacy, access to treatment, and socio-economic status all play a significant role in the increased risk for prostate cancer diagnosis and mortality in African Americans. I thought that I could make a great impact for the African American community by getting involved with prostate cancer advocacy efforts. To accomplish this, I started an advocacy organization in 2011 called “Power of Proton” through which I educate African American males about proton therapy as an option for prostate cancer treatment. More recently, I became a minority recruiter for a large clinical trial based at the University of Florida. The trial focuses on comparing different proton therapy options for prostate cancer patients and my role is primarily to engage the African American community both in Florida and on the national level to increase their recruitment to the study.
While attending a prostate cancer health disparities conference in Florida in 2010, I was introduced to the Prostate Cancer Research Program (PCRP) at CDMRP. Ever since then, I have been serving as a PCRP peer reviewer. Other than the birth of my children and my marriage to my wife, serving as a reviewer has been the greatest experience one could ask for. The number one thing I bring to the review sessions is my personal experience with a prostate cancer diagnosis, receiving proton therapy, and now being cancer free for eight years. It’s been a great experience interacting with the scientific reviewers and learning so much about the research being done to eradicate this awful disease called prostate cancer.
Last updated Friday, December 13, 2024