Post prostatectomy

Posted by toddsp @toddsp, 1 day ago

Has anyone had the prostatectomy... I'm 57 scheduled for May. Not sure if I want the surgery or radiation. Any recommendations?

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@survivor5280

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!

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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

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@toddsp

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

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You can just DM me right here on the site.

The Decipher is a test where they take your biopsy samples and analyze it against patterns of hundreds of thousands of other tests to determine if what the biopsy is seeing is statistically wrong - basically a genetic test. They found the DNA properties of my biopsy were indicative of worse cancer than what was reported.

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@toddsp

Thank you for your feedback very helpful... you don't have to answer plus I don't your age.. Are you able to have sex? Any signs of ED? I understand because of the prostate removal is shortens your penis. Did you notice a significant difference? Thanks

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Prostate removal does not shorten your penis, atrophy shortens your penis as the urethra shrinks due to lack of use. The current belief is that "morning wood" or nocturnal erections, of which most men have at least 4-6 a night, are there to prevent this very thing from happening. If you do not have ED and can maintain an erection, your length and girth should remain the same. If you do have ED then doctors recommend using a pump to keep the urethra stretched to prevent loss of size.

The only side effect that is guaranteed is loss of ejaculate, period. ED, incontinence, penis size, etc are all possible, depending on the results of the surgery - but not guaranteed.

My doctor put me on 5mg of tadalafil a month ahead of surgery to build it up in my system in case it was needed to provide erections after. That plus L-Citraline just help with any possible ED.

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@toddsp

Thank you for your feedback very helpful... you don't have to answer plus I don't your age.. Are you able to have sex? Any signs of ED? I understand because of the prostate removal is shortens your penis. Did you notice a significant difference? Thanks

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Hi...I'm 72, was just short of 70 when first diagnosed. The prostatectomy didn't shorten my penis and I'm able to have sex, except that I needed to abstain for 6 weeks after the sling surgery. Before the sling there was a problem with ejaculating urine, but that has improved.

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