@jc76

I would also like add that I think it is important for patients to educate themselves and understand the research and applicable clinical guidelines. That doesn’t mean practicing medicine on ourselves or telling others what treatment they should have. It means being informed enough to have a meaningful discussion with our doctors and, when appropriate, to ask questions or seek a second opinion.

I experienced this myself. When my biopsy came back as Gleason 3+4, I went to a different medical group and urologist for a second pathology review, partly because I had read Patrick Walsh’s book, which emphasized the importance of confirming a prostate biopsy diagnosis. Their pathologist confirmed the 3+4 diagnosis, but the urologist recommended active surveillance.

I was surprised by that recommendation because my PSA was relatively high, placing me in the unfavorable-intermediate-risk category based on the information available at the time. My genomic test was also still pending. From what I had learned by reading the NCCN and AUA guidelines, active surveillance did not appear to be the usual guideline-supported approach for someone with my risk characteristics.

That experience reinforced for me why patient education matters. I didn’t decide on my treatment based on a book, a podcast, or another patient’s experience. Instead, what I learned prompted me to question the recommendation, look more closely at the guidelines, and seek additional medical opinions which confirmed the need for definitive treatment for my condition. Ultimately, the purpose of doing our own research isn’t to replace our doctors—it is to become informed partners in the decision-making process.

So I agree completely that we shouldn’t tell another patient, “I heard this at a seminar, therefore you should do it.” But I also think we should encourage patients to learn, ask questions, understand the evidence and guidelines, and seek a second opinion when something doesn’t seem to fit their particular circumstances.