Why don't men talk about prostate cancer? Breaking my silence

Your courage in breaking the silence around men's mental and emotional health during cancer treatment is powerful and needed. The cultural barriers that prevent men from discussing these experiences openly create unnecessary isolation during an already challenging time, and sharing authentic stories like this helps normalize these conversations. The cancer community benefits greatly when people speak honestly about the full spectrum of their experience - the fear, the physical changes, and the psychological impact alongside the medical facts.

How was your pathology report after surgery...

All margins were clear

If you are not aware of it I’m adding a link to Zero Cancer site. It’s dedicated to prostrate cancer and if you scroll you’ll find a link to “ find support” There you can search for a group near you. We meet once a month, all men with prostate cancer and sometimes some wives. Our group brings in speakers each month,I.e. doctors, nurses, social workers, etc. When I was diagnosed I felt like a deer in the headlights. This group has helped me find a way to stay out of those dark places our minds want to lead us into. The conversations, the presentations, just being with a group of men suffering the same dilemma in all stages is really enlightening, it brings us some solace. Good luck..all we can do is keep on keeping on. https://zerocancer.org/

Gene, excellent words! You hit the nail on the head! I've been on this ride for 21 months. I'm 61, stage 4 with Gleason 5+4=9. Had radiation and on Lupron for 20 months so far. PSA at last test in October was still <0.01, undetectable. Apparently the Lupron is working, I sure feel the side effects! I'm grateful for each day and make each one count. I don't know why my primary care doctor chose not to ever test my PSA. He retired during Covid. I finally got one when I complained about pain while riding bike. I had a tumor the size of my thumb by then. I try not to dwell on that, it creates bad energy. This attitude among doctors of not doing routine PSA tests must change now! I've been telling every male I know to demand a PSA test from age 40 up. Hang in there, we're all in this together!

Awesome, I am going to continue writing about my journey. I am hoping to reach as many men as possible

Gene, I’m David Stauffer, Denver CO, with high-risk localized PCa diagnosed August’23 and treated with 8+ weeks of daily radiation and four months of ADT. All you say strikes home with me. None of my medical providers said so much as a word about my PSA increase (2.3 to 5 to 9) over 18 months. None of the many providers I consulted after my diagnosis said so much as a word about side effects. Providers, publications, and websites (including Outcomes4Me) employ the misnomer “Care Team.” I have a “Don’t Care Team”—as in not caring the least for me, because they’re all totally immersed in the urgency of recommending procedures that maximize billing. All we have—“we” being you, me, and other patients—is each other. Therefore, my thanks to you for your truth-telling, and please say more as you’re able.

Thank you for that. I am writing my journey through this second time. I have found the worst words a Dr can say is "let's monitor it". Never again!

Hi, Gene — Dave Stauffer here again. When I was diagnosed, I asked for advice from a friend who had been through his PCa adventure years ago. He said, “You’ve got to know more about it than your doctors.” SO TRUE! As I’ve found out in the past two years. The key to knowing more: peer-reviewed medical journals. They are the only source I’ve found that tells you what you need to hear rather than what you want to hear. Patient information publications and websites are decidedly NOT among sources you can trust. They’re almost worse than doctors in spewing happy talk instead of real-world talk. Doctors and patient info LIE BY OMISSION; that is, speak the truth, but omit the inconvenient truth—the negatives, the side effects, the prognoses, anything that’s a downer. Which includes this very Outcomes4Me platform, but not the many contributors, such as you and I.

2 years now with stage 4 prostate cancer metastasized to bone) on a similar treatment plan to yours except they left the prostate in. I've approached it from day one with the attitude. Cancer is my bitch! Im not backing off of it either. I fully intend to kill the cancer that tried to kill me. It took its shot. My turn now. Don't know if it helps you, but it does me.

Man, they didn't catch mine till it was 96 and within a week or two before they got me into radiation and on blockers it was at 121. Gleason score of 8 and above on all 12 samples. Fortunately I never went through the fear and doubt. I still approach it as something to be killed because it tried to kill me. Currently PSAs are at .3 Im in the gym three days a week lifting weights to combat bone density and muscle mass loss. Amazingly enough you can build muscle mass on testosterone blockers. It takes a good bit of effort for relatively small gains but it's incredibly helpful for your mental state.

Wow amen powerful . Sounds like your talking about me carpenter went through rehab 2 times on my 3 marriage.All I can say GOD is awesome 🙌🏾🙌🏾🙌🏾🙏🏾🙏🏾🙏🏾

Gene — Once again, Dave Stauffer of Denver CO. I’ve previously registered just about all my gripes about the medical-industrial complex that makes sure PCa patients DO NOT get the truths of their disease. Which is why I’ve had the thought of assembling a website or book called (something like) “The Truths of Prostate Cancer by Men With Prostate Cancer.” In a way, Outcomes4Me is doing that with the mounting testimony of people like you, me, and many others who have reported The Truths that don’t come from doctors or other medical professionals and don’t come from patient information flyers and manuals and only come from two sources: professional peer-reviewed medical journals and patients such as you, me, and the many others whose experience with PCa “treatment” is NOTHING like what we were led to believe. I’m contemplating … and continuing to read those such as you.

PS: I’ve tried by several means to get my full name on my comments. I don’t know why some—such as you—are accorded that, while I’m not. It took me many weeks just to be identified as “Dave S” rather than “Anonymous.” So I’ll continue to begin all my comments with my first & last names and city (as there are many Dave Stauffers).

If you’re on Facebook, I’d recommend checking out the PC Tribe-Prostate Cancer Support Group For Men. There are several of us in there who post regularly and take time to respond and support others. It’s an active, encouraging space with men who truly understand what this journey is like.

Dave Stauffer, Denver: Thanks, Gene. Good to know, and unsurprising there’s a presence on FB.

Todd — I’m Dave Stauffer in Denver CO. Before I tell you my situation, I’ll say that you probably shouldn’t do what I did, because your IVa and other numbers vary widely from my stage T1c, PSA 19.4 (now <0.01) Gleason 4+4=8, size 0.83mm, in one core. My treatment was 8 weeks radiation and 4 months ADT, both of which I now regret. I wish I’d chosen no treatment, because 1) my side effects and absence of hormone recovery have reduced my quality of life to near zero and 2) it’s unlikely that any doc has ever told any patient that overall survival with no treatment is about the same as for radical treatment for at least five years. In other words, the medical-industrial complex is always and everywhere for treatment, treatment, and more treatment, owing to the No.1 priority of revenue, revenue, and more revenue. So I suggest you insist on knowing the pros and many cons of every procedure suggested, and also that you consider your personal valuation of quantity of life vs. quality of life.

Just a suggestion, Dave: try to consider what parts of life you can still enjoy, and don't focus on the negative. You will be a happier person and probably live longer. I've got stage 4 prostate cancer, and bad side effects, but I'm still enjoying life and making every day count.

Hi, Richard — You’re right, of course. The main thing that got me riled up recently is discovering and reading Outcomes4Me; specifically, I’d assumed it was my particular docs in my case who spoke not a word of the side effects. WRONG! I’ve read the accounts of a dozen—maybe more—patients who speak of the side effects unspoken by their (ludicrously named) “Care Team.” That’s why I’m of the opinion that the best guide to navigating PCa would be one that compiles the actual real-world experience of PCa patients.