← Return to Post prostatectomy
DiscussionComment receiving replies

Todd,
I also am very active and amped up my workouts considerably beforehand just to be as ready for recovery as possible. But, to that end, I hired (re-hired) my personal trainer to incorporate pelvic floor engagement into what I do, I think this made a world of difference. It's like Kegel on steroids. By the end my pelvic floor therapist (yet another pre-surgical professional I saw regularly) said I had the healthiest male pelvic floor she'd worked with.
Lack of ED is also a bit of luck. If you keep your nerves then you have a fighting chance.
I did have a catheter for 7 days, and had an erection the same day as surgery, so that was very encouraging - if not uncomfortable. Once it came out I was prepared for some level of incontinence for a few weeks, if not certainly that day - and wore depends to be safe. Not a single drip, still to this day.
Radiation can still fry your nerve bundles, although they try to prevent that if they can. Radiation can also fry your bowels, leading to bowel incontinence, which they also try to avoid, but to me that was the main deal breaker. I already wasn't prepared to live in diapers for bladder incontinence but adding bowel to it sealed the deal.
Remember that radiation is always available to you post RARP. Surgery after radiation is called salvage surgery where they essentially scrape the goo that used to be your prostate out. There are focal therapies but none of my doctors believed they would benefit me more than RARP. Get it out and know what's going on was the prevailing recommendation.
So, for me, the only side effect is dry orgasms - which take a bit to get used to, but still have the same sensations as before.
And, if this comes back, I still have radiation and ADT and other options open to me. I hope it doesn't but cancer is cancer and no matter what treatment you get you cannot guarantee it won't return.
My Gleason was the same as yours - mostly 3 + 3 with one core 3 + 4, but only 5% of that. I would be on active surveillance due to this if not for my Decipher score showing 0.68, high risk, so I (and all I consulted with) recommended removal instead. By the way, this was totally accurate, my cancer was far worse than the biopsies and MRI's showed and all my scores, including my cancer stage, were upgraded after the prostate pathology came back. This re-affirms that I did the right thing, had I left it I may have lost my nerve bundles and a lot more.
Recovery is pretty fast, really. Within a couple days you are up and about, even with the catheter. You have lifting restrictions for 6 weeks, but it's easy to deal with. Perineal pain is real, so get a cushion designed to relieve the stress on it when you sit on a hard chair - I only had problems when I sat in my office chair, my recliner was just fine. Even with that, I only used that cushion for about a week and was able to sit all day in my office with no problem.
I'm happy to go into detail about my experience if you want to message me me on here, I hate to hijack your thread with good news - I've experienced a bit of blow back on here from folks who are still struggling greatly and don't want to read about folks who came out unscathed.
I can tell you that finding people to talk to that came out OK is hard - I searched everywhere, so I'm here if you need me!
Replies to "Todd, I also am very active and amped up my workouts considerably beforehand just to be..."
This is great information thank you very much. I feel like I should know this but what is the Decipher score? Is that free PSA? I can't think of what number fits that category. Maybe I should consider active surveillance. Nevertheless, I haven't consulted many doctors.. But I'm in Scottdale right next door to the Mayo Clinic. I feel like I'm in good hands. Having been through radiation on my throat I know what to expect. It kills everything. Here's my email if you have more to share. toddspr@outlook.com