Consumer Involvement
Dennis Golden
At the age of 70, Dennis Golden, a retired writer, author, and public speaker, started experiencing some unusual symptoms that prompted him to see his physician. His general practitioner didn’t seem overly concerned and thought that these symptoms were due to an enlarged prostate, which wasn’t terribly unusual for a man his age. Nonetheless, he continued to monitor Dennis’s prostate-specific antigen (PSA) numbers, which remained in the normal range for the next 18 months. At his annual physical a year and a half later, Dennis learned his PSA numbers had risen to the high range of normal and was told by his physician that he “might” want to see a Urologist. With encouragement from his wife, Dennis did follow-up with a Urologist and was ultimately diagnosed with aggressive prostate cancer despite having “normal” PSA values. The Urologist explained “PSA velocity” to him – a term referring to rising PSA levels over time – and the idea that there is no magic PSA number that signifies prostate cancer, so even PSA numbers in the “normal” range may not in fact be normal if they increase over time.
After weighing treatment options with his family, Dennis chose to have a radical prostatectomy and initially went into remission. He continued with follow-up visits from 2014-2018 to monitor his PSA levels, and slowly those levels began to rise again. At that point, he decided that additional treatment was necessary and opted for hormone therapy and radiation. He has been cancer free since then, but remains vigilant about follow-up visits with his physician and closely monitoring his PSA velocity. After speaking with men about his experience, he learned that many men have no idea that increasing PSA levels could indicate prostate cancer and warrant additional follow-up with a Urologist. Dennis decided to become more actively involved in helping to educate other men about prostate cancer and joined forces with a friend to start the National Prostate Cancer Awareness Foundation. Through his work with the foundation, Dennis uses his public speaking expertise to speak at various men’s groups around the country and encourages them to be proactive with their own health. He stresses the importance of getting checkups, asking questions at those checkups, and taking responsibility for their health so they can be around for their families. Furthermore, he found that there is limited information for men with PCa about various treatment options, particularly radiation therapy, so Dennis created informative videos about his own experience that hospitals use to help better inform patients.
Through his speaking events with the Prostate Cancer Awareness Foundation, Dennis met a PCa survivor who had served as a consumer reviewer for the PCRP. After learning about the PCRP review process and with encouragement from volunteer work he did at his local hospital, he signed up to serve as a consumer peer reviewer for the PCRP. During his first year as a consumer reviewer, Dennis recalls being initially overwhelmed when reviewing the proposals since they were quite technical. However, after sitting down with the review panel, he was pleasantly surprised to realize how much his opinions were valued, and that the consumer reviewers and scientific reviewers almost always came to the same conclusion despite approaching the problem from different perspectives. Dennis describes his experience as a PCRP consumer reviewer as a great one from both an educational standpoint, and also because of the opportunity it gave him to meet outstanding scientific and medical professionals in the prostate cancer research field who expressed gratitude for his participation on the panel. He has found that often the scientific reviewers are very focused on finding a cure for PCa, and the consumers help bring a unique perspective to highlight the importance of quality of life as well. His involvement with PCRP has given him a greater sense of confidence knowing about all the great work being done to improve prostate cancer diagnosis and treatment, which has also helped him lead support groups and help other men with prostate cancer. Dennis hopes that the research funded by the PCRP will lead to new treatment options while also considering the patient’s experience, including their emotional and psychological health and overall quality of life.
Last updated Friday, December 13, 2024