Post Prostatectomy Two Week Progress
PART 1
First of all, I'd like to convey my sincere and heartfelt thanks to all of you on this forum for helping me come to my treatment decision. Your knowledge, advice, and experience that you’ve shared with me either directly, or just by my reading through all your posts have been a great resource to me. And thanks to the Mayo clinic and moderator of this forum for making its existence possible. And also a special thanks to my wife for all her help, without which this recovery would be much more difficult.
After years of steadily rising PSA, a couple of biopsies that found nothing, and then leveling out at a PSA around 12, my urologist said it was time for a new MRI. The MRI done in July 2025 found a larger PI-RADS 5 tumor, and a smaller PI-RADS 3 tumor, followed by a biopsy in August, which found that the larger tumor was a 3 + 4 = 7 with perineural invasion, and the smaller one was a 3 + 3 = 6.
I started researching prostate cancer, and its treatments in July, using reputable sources such as Mayo Clinic, John Hopkins, Harvard, NCI, the health services of Canada, the UK, Australia, and the Prostate Cancer Researchers Institute which has lots of excellent videos. I came to the conclusion that SBRT would be the treatment for me. I also took the advice of a lot of these sites and got second opinions. I got a second opinion on my biopsy pathology from a center of excellence, University of Wisconsin Madison Carbone Cancer Center, and also talked to one of their docs for a second opinion. They pretty much jived with what I was getting in my own local area. I got the decipher test on which I scored high. I also had a PSMA PET scan performed on me, and it showed no spread outside the prostate capsule. Then I heard about the Prostox test that can predict future serious genitourinary complications from radiation treatment. There's one for SBRT and one for CFRT. Unfortunately, I scored high risk on both, so I had to rethink my treatment, and I decided I'd go with prostatectomy. A 3 + 4 = 7 tumor contained within the prostate would normally mean I could even qualify for active surveillance. But because of my high decipher score and the fact that I had perineural invasion, I decided I better just get it out before it did spread. Just to note, the tests like Decipher, PSMA PET, and Prostox, I had to ask for. Maybe my doctors would have mentioned them to me, but I guess because of my research, I was on top of it, and got to it before they did. So, as many other people have said in this forum, you got to be your own advocate.
I scheduled my prostatectomy, and I had it two weeks ago today. It was a RALP, using a da Vinci machine. The surgeon said it went well with no complications except one which showed up on the post prostatectomy biopsy. The biopsy report said there was one positive margin. So that worried me at first, but my surgeon said that when he was pulling the prostate out, the region where the margin is stuck to the prostate capsule tore, so hopefully that is just, you know, a little hiccup in the process and not a true cancer margin. But we'll see on my future PSA tests if the PSA declines to undetectable. He was able to save most of my nerves, so ED hopefully won't be a long-term problem, and he said he was able to do something with the urinary sphincter that should make continence come back faster.
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My prosatectomy is a couple of months away. Your journey story is super helpful. It confirms that it's a one step-at-a-time sort of process with setbacks and gradualprogress. Guess we just all have to be strong enough to rely on our support systems to get us through. Thanks for sharing!
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5 Reactions@quaddick I couldn’t have written my own experience any better! The fact that our experiences mirror each other so closely gives me confidence that you will share a similar trajectory!
I had RALP in August, 2025. After experiencing the exact thing you described, I am back to functioning as well or better than before my diagnosis. My wife and I walk 3-5 miles per day, do yoga 3x per week, and travel as much as possible. I wear a small pad at night only as a safety net, but have woken up dry for the past month.
As far as ED, I was prescribed Cialis 5mg daily in addition to the as needed Viagra. Dr. encouraged me to “coax” a morning erection when necessary as part of penile rehab. I’m happy to say that, with the exception of ejaculation (that takes some getting used to) intercourse is as frequent and satisfying as before surgery.
I know we’re all different and progress at different rates, but I see many parallels and hope your continued recovery is as encouraging!
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6 Reactions@phayes
Thanks for the very encouraging post. Every day I continue to improve on all fronts.
Since you mention ED, I wonder if you'd mind my asking a question? As I mentioned, I do wake up with a partial erection after dreams though nothing like the full ones pre-RALP. This morning, there was no mistaking it, and yesterday I felt a bit horny in the shower. My question is- at 3 weeks from surgery, is it too soon to try stimulation? Might I risk damaging something that hasn't healed yet? My doctor said I could begin penile rehabilitation at 6 weeks. Should I be hands off (pun intended) until then?
I'd appreciate your insight.
Thanks
Good question. Since you’ve already encountered some signs of being ready for stimulation, I think you could give it a whirl - your body will tell you if it’s too soon. I believe I experienced my first orgasm at 4 weeks and it lingered like a cramp - kind of scared me, so I backed off until my 6 weeks appt. Smooth sailing ever since.
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2 Reactions@quaddick In addition, even if you don’t stimulate to the point of orgasm, think of it as a fun Kegel workout 😉
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2 Reactions@phayes
Thanks, good to know.
@phayes
LOL
@phayes and @quaddick - would you be willing to share your ages? I am 66 and scheduled for RALP on 3/31/26. 3+4 (1 core with 4 at10%), PSA 2.99. Found lump during rectal exam. Been on AS since 12/24. Decipher 0.54, CHEK2 gene mutation. 6’5” and 250 lbs, but in pretty good shape. Dad had PCa. Nervous as hell about incontinence and ED. Doing kegels and core work daily. I hear from a couple friends that radiation was great for them, so now I am having second thoughts about surgery. How did each of you choose surgery over radiation? Thanks.
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1 Reaction@swen77 @quaddick I am 60, also 250 and relatively fit. Doing the kegels now and after will definitely help. My nerve-sparing RALP was in August and I still wear reinforced underwear or regular underwear with a light pad during the day with mostly no leaks and a heavy pad at night. Both more for insurance than need.
When talking with my urologist about options, I prodded him to tell me what he would do. He said he couldn’t do that, but did say, in his experience, most guys my age and my situation opt for removal. Less stress about “what if”. I also read somewhere that radiation first could make removal later more difficult as it fuses the prostate to surrounding tissues, but that is not a confirmed medical opinion. Might be a question for your medical team. The thought of continual MRIs and biopsies was also a deciding factor.
I have my 6 month check in with the urologist this week, but my GP recently did a PSA test that came back undetectable.
I manage the ED with Cialis daily and Viagra as needed. I also have a very supportive wife. We remain sexually active and have found that our relationship has improved due to there not being any pressure on performance.
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5 Reactions@phayes thank you! Wishing you continued good progress.