Patient Story ID: 1419505

Background

In 2018, I was diagnosed with low-risk prostate cancer (PCa). I had little knowledge of the exigencies of any diagnosis of PCa. I could only think of “the ‘C’ word”—anxiety immediately set in. I joined support groups and sought other opinions. I studied data on newly diagnosed patients and researched my options. By the time of my “review” with my urologist, I had become familiar with a possible course of action. He presented 3 options: treatment in the forms of surgery or radiation, and watchful waiting. I had already familiarized myself with active surveillance (AS). When I interjected this possibility, he indicated that if I were to take that approach, I would need another biopsy in 3 months. This led me to investigate AS protocols. I opted for a confirming transperineal biopsy 6 months later, validating my choice to continue AS. Since then, I have followed my AS protocol with requisite monitoring and engagement with a wide net of medical professionals, support structures, and social media. I adopted a whole-food plant-based diet and exercise routine. This is an abridged chronicle of my AS journey. What has emerged is extensive engagement with other patients and an aspiration to communicate my findings to the AUA community.

Approach

I investigate, examine, and analyze all facets of AS, including screenings, procedures, and disparate protocols, especially since the revisions to the 2022 Clinically Localized Prostate Cancer AUA/ASTRO Guidelines, of which I was a Patient Peer Reviewer. I participated in multiple support groups and webinars and initiated a dedicated AS blog. I care about, listen to, and document patients’ voices as they navigate windy paths of shared decision-making. I analyze and stay current with the latest clinical trials, studies, and reports from the U.S. and other countries.

Maintenance

As a board-certified advocate, I continue to develop relationships with and empower patients. I provide information and guidance to allow them to make their own choices and be discerning based on the latest science and data.

Quality of Life

I want all patients, including myself, to maintain a balanced, healthful quality of life while on AS. I have found, however, that with the contrasting views of MDs and specialists and incongruent guidelines throughout the PCa community, an opportunity for me to present my findings, including but not limited to patient confusion with communications, varying AS protocols, diagnoses and treatment options, improved procedures not universally adopted and/or available, and health care and insurance concerns. I hope that my presentation will inspire those who’ve taken on the Hippocratic oath to consider how they may continue to learn how they play a major role in patients’ quality of life.