Post prostatectomy

I'm 6 weeks post-op RARP. I was told by 9 different doctors that they recommended RARP over radiation at my age (54) because the side effects of radiation might impact me before the end of my natural life. I have no regrets, I'm fully continent and no ED. That's not everyone's history with RARP, but it is mine. With a couple months to prepare, you could start working your pelvic floor and core muscles to better improve your recovery and even prevention of both incontinence and ED.

Radiation has some appeal, as do alternative treatments, because the side effects are often less, but you never know the true scope of your cancer until they remove it and analyze it.

If you haven't talked to multiple doctors, you should do so now. Nobody here is qualified to tell you which path you should take, but your doctors absolutely are. The best we can do is tell you how it went for us - and remember that most of the people here, me excluded, are here because they either are new and have questions - like yourself - or they continue to have issues. The success stories have no reason to stick around, but there are plenty of RARP success stories out there, I had a hell of a time finding them because they don't participate in these types of forums anymore so I'm trying to stick around to sprinkle some good news over all the bad that comes with this terrible disease.

You will undoubtedly receive many comments on the various experiences men have had with radiation or prostatectomy. There are also some recent treatments that involve partial removal of the prostate for those with tumors or lesions clearly defined on the MRI and limited to a specific region of the prostate. You have come to the right place to get input on this decision!

The decision on which course of treatment to pursue depends on a number of factors including the Gleason score, whether there is any evidence from the MRI of growth beyond the prostate, and overall health. While you can share your specifics with this board and get input from others, your doctors should be able to give you a recommendation on their suggested course of treatment and why they feel that is best for you. I would put a lot of weight on what you are being told by the professionals that are treating you and which have the full picture on your particular case.

If you haven't already done so, you might spend some time with the various published models (available online) that predict outcomes for the various treatment options.

In my case, I had a prostatectomy due primarily to having a biopsy Gleason score of 9, plus prior BPH which required medications to control. (The post-surgery pathology report downgraded my Gleason score to 4+3=7 with 'tertiary' (very low percentage of the total) grade 5; one of the advantages of having the prostate removed completely is the full report on what was present and more accurate grading of Gleason score.) Another advantage of surgery (in addition to the complete pathology report) is that in the event of a recurrence radiation remains an option for further treatment (some surgeons say that surgery after radiation is not recommended.)

I hope you feel at peace about your final decision and wish you all the best in your treatment.

I had a radical prostatectomy 2 years and four months ago, I just got test results last week that I continue to be PSA non-detectable which, to me, means that the surgery was successful. I also had a sub-urethral sling surgery 6 weeks ago to address incontinence. It solved the problem.
It wasn't easy, but if I could go back in time and get a second chance to decide, I'd do exactly the same thing.
Good luck with your treatment.

I appreciate your time. You are totally correct about success. I use Yelp everyday for dining. I have never posted how good the service is. I had throat cancer in 23. 7 weeks of radiation and chemo. I successfully completed and everything except my saliva is back to normal. I recently went in for a Vasectomy and found out my PSA was 6.1, then MRI & biopsy showed 2 areas with lesions. Gleason 6 (3+3) and a 7 (3+4). At Mayo they said because of my age and condition surgery is the best bath. I'm leaning heavily that way. The radiologist that worked on my throat claims the tech is so much better now. Could treat me in a week and be done with it. Not a fan of radiation. Scott Cheney is the MD at Mayo has done 100s of RARP. I'm very confident with his abilities. I just want a better understanding of life after. I'm very young in mind and want to enjoy time with my partner with no complications - No ED. I've been working my Kegel and pelvic floor exercises. I appreciate everything that you shared. Very encouraging. Did you have a catheter for 10 days? After were you able to go back to your normal activities. I go to the gym 4-5days a week. Sounds like the recovery period is short. Todd

Hello - I appreciate your comments... would you mind pointing me where to look for these models - "If you haven't already done so, you might spend some time with the various published models (available online) that predict outcomes for the various treatment options."

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!

Unfortunately I can't find the model which I used to reference fairly frequently - it was a single interactive graph which compared outcomes for a number of different prostate cancer treatment options depending on Gleason score. Perhaps someone else will have it or be able to direct us to it.

This link (https://pubmed.ncbi.nlm.nih.gov/38261043/) is to a research paper from 2023 which shows graphs that show outcome predictions for several of the primary treatment options including surgery and radiation. Hopefully this is helpful. You can probably find additional studies with outcomes by doing a web search.

I'm new so this site won't let me post links, but you should be able to find it by searching for "Prostate Cancer Free compare prostate cancer treatments." You can scroll down and select your grade and then compare treatments.

Thanks @psychometric - that is the site that I was looking for and which I referenced in my earlier message to @toddsp

I would just add to anyone consulting these that the data in these graphs is by necessity dated to get the survivability outcomes out to the minimum of 5 years, and treatments have advanced quite a bit in recent years, so I think the predicted outcomes are understated.

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