by Robert Carey
My first time as a consumer reviewer for the DoD Prostate Cancer Research Program (PCRP) was in 1999. I remember entering the panel room and seeing the military uniforms and name tags, Army Officers, PhDs, MDs, and a mixture of other letters and titles indicating research careers and status. I asked myself, "What am I doing here? What do I have to contribute to this process?" During that review meeting and those that followed, I learned the importance of the consumer reviewer in the grant application process. We consumer reviewers bring our unique perspective, personal experience, and the experiences of other prostate cancer survivors and their families to the review process.
This learning process started for me in 1996. There we were, sitting in the waiting room waiting to meet with the doctor to discuss the options, if any, for us. My wife Patricia and I were on a crash course to learn as much as we could about prostate cancer. A few months earlier, we knew nothing about prostate cancer.
When my endocrinologist told me that my numbers were all good but he wanted me to see a urologist about my PSA, I remember thinking "What's PSA?" The doctor assumed I knew and I didn't tell him otherwise. Cholesterol, HDL, LDL, triglycerides, glucose, A1C -- letters and numbers that doctors use to tell you how you're doing. Fifty-five years old, weight good, exercising regularly, eating mostly the right things, numbers are good - the doctor went through the laundry list of my health. My PSA was 4.2 - I figured that a low number can't be bad.
But a few weeks later, I received a call from the doctor's office asking about my visit to the urologist. When I confessed that I hadn't yet made the appointment, the doctor came on the line, explained what PSA meant, and encouraged me to see a urologist. When I did, the urologist confirmed my prostate cancer diagnosis.
So, there we were, with questions looking for answers. Where did it come from? How did it start? How long have I had it? How fast is it growing? What are my choices? What should I be doing? What are the short and long-term implications - for me - for my wife - for my family? We elected to have surgery, and my doctor said that if we get it all, it will be like I never had cancer. Well, that would certainly be nice. After the surgery, I was told that the pathology checked out OK - the cancer had not gotten outside of the prostate. I guess I was one of the lucky ones.
After my surgery, I searched for a support group but couldn't find the type of group I felt I needed. So I created Men Coming Together, a support group focused on the needs of African American men in the Atlanta area, and I facilitated and managed this group for over four years. This is where much of my learning occurred, as I listened to men and women talk about the effects of prostate cancer on their quality of life and their families.
In 1998, I joined a small group of survivors who started the Georgia Prostate Cancer Coalition (GPCC), and for two years, I served as Vice President. Through the efforts of the GPCC "License Plate Program", Georgia now has a vehicle license plate, dedicated to prostate cancer, available to all state residents. A portion of the license plate fee comes to the GPCC to finance screening, educational programs, and other activities to support the under-served and un-insured. Today, the focus of the GPCC is to raise awareness about prostate cancer through talks at health fairs, church group meetings, lunch & learn sessions, and one-on-one sessions.
I became a reviewer for the DoD PCRP in 1999, participating on panels through 2002, and then returning in 2011 through 2013. Between these two periods of service, in 2003, Patricia was diagnosed with ovarian cancer. Over a period of nearly six years, together we navigated that challenge, experiencing and learning from the effects that cancer can have on the mind, body, spirit, and all aspects of life.
For my first time as a consumer reviewer in 1999, two boxes of paper grant applications arrived at my door. I remember thinking, what did I get myself into? What is it that I have or know that qualifies me to read and understand the scientific language contained in these boxes? The answer to this question came from my life journey since 1996 when I was told I had prostate cancer, and then the journey with Patricia and ovarian cancer. Of course, there is anger and fear at first, but with the help and love of family and friends came the resolve to do something in the hope that other men and women can be made aware of the need for health checks and possibly early detection of cancer.
The technology has changed -- no boxes of applications today -- and the knowledge I have gained since 1996 has been beneficial. Working with and interacting with other DoD PCRP reviewers has shed light on the questions I had in 1996, but for some men the questions are still there. Through the efforts of the scientists, the researchers, and the consumer reviewers, there is more information, more options, and even some answers. I can talk about progress in early detection, better treatments, and quality of life issues that has been, and continues to be, made from prostate cancer research. I can provide information that will help increase awareness of prostate cancer risk and help the decision-making process, and I can be an active participant in the continuing research to prevent and find a cure for prostate cancer.