Consumer Involvement
My journey with prostate cancer began in May of 2005 when I received my diagnosis following a routine physical exam. Luckily, it was stage 1 prostate cancer, which gave me lots of options for management of the disease. The urologist patiently explained all the options, which included active surveillance, but he recommended treating the cancer more aggressively sooner than later. Like most men do at this point, I read as much information about prostate cancer treatments as I could. I also talked to several men I knew who had received various treatments. Ultimately, following a discussion with my primary care physician, I opted for a radical prostatectomy.
Following surgery, I was encouraged to attend the Prostate Cancer Support Group at my local chapter of Us TOO International to participate in their educational seminars and discussions. After attending several meetings I was asked to join the leadership team, which also served as an advisory team to the Prostate Cancer Core Research Program at the NCI. A few years later, I assumed leadership of the Prostate Cancer Support Group and was nominated to become a consumer peer reviewer for the Department of Defense Prostate Cancer Research Program (PCRP), where I served as a reviewer for three years from 2016 through 2018. Additionally, I was nominated to serve on the National Cancer Institute (NCI) Genitourinary Steering Committee (GUSC) which reviews trial concepts for the treatment of prostate cancer. Currently, I serve on the GUSC, the Patient Advocate Steering Committee and the Investigational Drug Steering Committee and continue my service at the local level by leading the Prostate Cancer Support Group at Mayo Clinic.
My experience as a PCRP consumer reviewer was initially somewhat challenging as I needed to come up to speed on research protocol and cancer trial design. But I now find it quite fulfilling to provide input into the review of protocols and trial concepts. I also find it uplifting to experience the support of world famous cancer research physicians who express their appreciation and admiration for consumer reviewers and patient advocates. There is no doubt in my mind that the work funded by PCRP advances the science and has a positive impact on the health of men with prostate cancer. Hopefully, the PCRP will continue to be funded so new research ideas can be developed into clinical practice that will help all men who are fighting this disease.
Last updated Friday, December 13, 2024