Transforming Health Care through Innovative and Impactful Research

I was diagnosed with Stage 1 Prostate Cancer (PCa) in 1992 at the age of 48. I still considered myself a young man, and was thus concerned about the long-term impact of surgery, which include incontinence and impotence. With a personal background in scientific research, I did some research into alternative treatment options, and based on available data at the time, I decided to treat my PCa with non-conformal x-ray therapy. The treatment was a success since my PSA dropped to 0.1, but 10 years later it began to slowly climb back up. Instead of jumping into another treatment, my doctors and I decided to keep a close eye on my PCa through "watchful waiting", but by early 2006, my PSA had reached 3.8 and it was recommended that I pursue further treatment. My oncologist at the University of Florida (UF) suggested I go to the new UF Proton Therapy Institute in Jacksonville for external beam proton therapy. Due to the number of years since my previous radiation treatment, I was accepted for re-treatment using salvage proton therapy in the fall of 2006. The treatment was considered successful and today my PSA remains stable at 0.1 with no problems!

My excellent experience and treatment at the University of Florida Proton Therapy Institute (UFPTI,) made a positive impact on my life, and inspired me to share my story and proton therapy experience with newly-diagnosed men. I informed men who heard of proton therapy as a possible alternative to radiation or surgery, but needed more information. Over the years, I've discussed the virtues of proton beam therapy (PBT) with hundreds of men, most of whom subsequently decided in favor of PBT with overwhelmingly positive outcomes!

As a strong advocate for PBT, I became well-acquainted with Mr. Bob Marckini, the founder of the "Proton BOB" proton therapy support group (www.protonbob.com). Because of my background as a biological scientist, researcher, and writer, he sought my help to review technical literature on topics dealing with prostate cancer and to provide abstracts for the organization's newsletter, "BOB Tales", while continuing to also provide PCa patients information on treatment options.

As time progressed, I started getting calls from men with more advanced disease, some of whom had been diagnosed with recurrences, which led me to Ms. Jan Manarite and the Prostate Cancer Research Institute (PCRI). She shared with me some of the incredible knowledge she had gained in the course of caring for her husband who was a PCa patient, and helped me counsel a broader range of men.

In 2014, Jan nominated me to serve as a Consumer Reviewer for PCRP. Having been a researcher myself, I've had a lot of experience preparing grant proposals and serving as a peer reviewer for a number of grant programs. While this experience is not a requirement for being a Consumer Reviewer, it certainly provided excellent preparation to evaluate the merit of PCRP proposals, and provided additional intellectual satisfaction since I found the proposals themselves to be incredibly interesting from the technical standpoint. They were almost universally first-rate, with current concepts and methodologies to address some of the most perplexing issues associated with prostate cancer. The Scientist Reviewers on my review panel were also top-notch, accomplished subject area experts - a mix of bench scientists and clinical MD/PhDs. Some of the discussions provoked excellent debates, and it was an honor to interact with such brilliant, accomplished investigators.

I learned a great deal as a PCRP Consumer Reviewer about issues that will help me better grasp the developments that are rapidly occurring in the realm of prostate cancer diagnosis and treatment. The direction of prostate cancer research is increasingly oriented to development of more accurate, less invasive diagnostic procedures and treatments, which will hopefully eliminate the undesirable side effects that I, and many other patients, want to avoid. Genomic tests are being developed to better define whether a heightened PSA is due to cancer or another cause; and if it is cancer, whether it is likely to be aggressive and necessitates treatment, or indolent and can be dealt with by active surveillance. Emerging imaging technologies are enabling discovery of tumors at very early stages. In turn these advances could result in being able to do targeted biopsies and more focal treatments, with less collateral damage to non-target tissues. All these developments will provide answers on screening, diagnosis and treatment, which will reduce men being inadvertently left untreated until it is too late!