Transforming Health Care through Innovative and Impactful Research

My initial thought when I received my diagnosis 4 years ago was shock. It was completely unexpected; I was just 41. I was very thankful my primary physician ordered a PSA test for good measure when I had my annual physical. My test results showed elevated PSA levels. I must commend my doctors and urologist for conducting the appropriate follow up, although each initially said "I'm sure it's nothing, but let's put you on the antibiotic". Then it was "I'm sure it's nothing, but let's do the biopsy". My urologist was just as surprised as me when the tests came back positive for prostate cancer.

Once the prostate cancer was confirmed, I immediately knew in my brain that this would be my personal call to action. I thought, "What do I do? How do I plan this out? I have to find everything I can about it." I talked to a bunch of different doctors and got different opinions. I gathered all the data points I could possibly cram into my head. My friends thought it was funny that I kept track of my PSA ad nauseam on an excel spreadsheet. I also got my PSA taken at two different labs... because I knew they would have two different sets of data points.

As my PSA numbers were rising, I didn't panic and go crazy; I just mentally slowed everything down. I realized my cancer was probably not going to grow too fast within a few months, which gave me time to research and better prepare. Again, it's kind of the call to action; when all of these things converge, you make a decision as to what you're going to do base on all the information you've gathered. Once you've made a choice on the treatment plan, it is really important to have no regrets for the decision.

My urologist also encouraged me to attend the prostate cancer support group Malecare. I had surgery and as I went through the healing process, I continued to go to Malecare on Wednesday nights. I wanted to help others who were newly diagnosed. I wanted to tell these men about what I went through and how I decided to handle my cancer, but that it may not be what you will go through. Each person has to figure out if they should get surgery, or get radiation, or decide to do nothing (meaning active surveillance). I try to tell them your head might be a mess right now, but take a breath and give yourself time to wrap your head around the matter, and have no regrets on any decision you make. When someone is newly diagnosed in the group, I give them my phone number to chat with them and walk them through. It's all about helping others through their journey and their own call to action.

It was also through Malecare that I learned about the Prostate Cancer Research Program and the opportunity to represent my support group as a Consumer Reviewer. It has truly been an honor and a privilege-to serve the PCRP. As a Consumer Reviewer, I am able to provide my honest and true feedback on the impact of potential research projects. I feel it is so important to put a face and a name to those of us with whom prostate cancer continues to affect our lives and the lives of our family and friends.

Additionally, I am so impressed by the fact that those of us affected by cancer are considered to have an equal voice on these review panels. I am equally impressed that the scientists on the review panels are truly interested to know what their research means to the prostate cancer survivors.

I hope that all of us together through our own calls to action are able to continue to make great strides in finding a cure or at least in making this a long-term chronic disease with the least amount of disruption to our quality of life.