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What mistakes have you made?

There are many decisions that come with a prostate cancer diagnosis; sometimes we feel like we make mistakes in our journey.

What mistakes have you made after your diagnosis? What lessons have you learned that you'd like the community to know?

  1. Many mistakes , I found out I knew nothing about prostate cancer . My thoughts were you get cancer and you die .

    1. I'm 11 years out from robotic prostatectomy. PSA negligible at 0.04 with yearly checkups with oncologist and urologist. Zero erections. Pills and injections don't do it. I use the pump, but we get along. I never realized that penile rehabilitation was a thing. If I had known, or if I had ben counseled about the fact that one can get the old fella back in play. Now at 77 years old,I suppose I could get into rehabbing and get some sort of response, but I guess I kinda old. At least my wife and I are happy that we can fiddle around with orgasmic pleasure. But I think, though, that penile rehabilitation is a necessary part of pre- and post treatment protocol. It seems though that one must be proactive in searching for ways to rehabilitate.

      1. The biggest mistake was not acting quickly enough. My PSA wandered between 4-5 for two years because my urologist did not “feel” I had cancer and so treated me for a swollen prostate (raparlo) . When I said I felt better, he drew blood for a PSA ,confident it would go down, instead it came back at 7.5. So now we were in panic mode and I had an MRI within 2 weeks, but my urologist didn’t look at the results for a month(vacation). The mri showed a large tumor on the left side . It took another six weeks to get a biopsy which showed cancer Gleason 8(5+3), and another 6 weeks to actually get to surgery. 3 months , very important months as it turned out, wasted. When we finally did the surgery he only got 98 % of it. 6 months later I’m having whole pelvic radiation, but no scans to guide the treatment . After 26 treatments of 6000 units, I still had the cancer, and it was growing with a doubling rate of 139 days. It’s now just about 9 years later and I’ve had a bunch of scans, including 2 PSMA scans, targeted radiation, immunotherapy and I’m now on eligard/xtandi with a stable PSA of 10. I also have a late stage cancer oncologist with a sense of urgency.

        Prostate cancer may grow slowly for some men, but not for me. And the one size fits all mentally early on in my journey wasted the opportunity to cure this at an early stage. Too much “ we do it this way” , and little or no sense of urgency when it could have made a difference .

        1.  thank you for sharing your story. You made such important points that are really helpful for our community. Jill, team

        2.  The important message is that patients need to take away from your story I suspect is to be proactive even when working with medical professionals. My GP was treating me for an enlarged prostate for years when in fact what I was facing was undetected early prostate cancer. While PCa can be slow-growing for many it can also be aggressive in others. Dennis (ProstateCance. TEAM)

      2. This sounds exactly like my experience. I also underestimated the effects the surgery you would have on me because I thought I could just wake up after surgery and go about my way. I didn't realize that it was going to change me profoundly.

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