I want to learn more about side effects of robotic prostatectomy

Posted by mikerbn @mikerbn, Feb 14 11:52am

Hi all:
I am 65 and have recently been diagnosed with prostate cancer. I am stage 2A with a Gleason score of 7 (3+4). The MRI found one small lesion, but two biopsy samples were positive. One in each lobe.
I am reluctant to have the surgery due to the possibility/probability of ED and incontinence issues.
I am very interested in hearing from guys who have opted for active surveillance verses surgery (and why they made that choice), as well as men that have had the robotic surgery to hear what their recovery was like.
Any help is greatly appreciated. Thank you.

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

sanDGuy | @sandguy | Feb 16 10:02pm

In reply to @billybwbf2 "I’m glad I saw your post! I too was diagnosed with prostate cancer in 2023 as..." + (show)

@billybwbf2

I’m glad I saw your post! I too was diagnosed with prostate cancer in 2023 as well as an enlarged prostate. I began taking finestride to shrink my prostate hoping to shrink my prostate enough to be able to have proton therapy treatments in order to avoid a radical prostatectomy! I too heard about the side effects of incontinence erectile disfunction.
Unfortunately, the information I will provide you with will cause you to be even more concerned! I have lived through the surgery now and suffered the side effects and it is tough!
With my experience I became convinced to provide details to guys facing this surgery so that you can prepare yourself for what you will face!
First, regardless of the side effects I am glad to be rid of prostate cancer and extent my years even though it has been tough! Remember that! Even with the problems it brings, sometime a radical prostatectomy ( using nerve saving robotic surgery) is necessary!
I took meds to shrink my prostate for 1.5 years. It did shrink my prostate by lowering my testosterone which in turn eliminated my ability to have an erection, and my penis shrank 50%! Lack of testosterone and lack of use makes it shrink! It was scary at first! It seemed so strange that my normally 6 inch penis when not erect became a three inch penis! Do to all the extra skin on my smaller penis, my circumcised penis looked uncircumcised after it shrank. It was concerning of course but I had no option. After 1.5 years of observation hoping to avoid surgery the cancer grew and I was told I must have a prostatectomy! My worse fear! But again life cancer free was more important.
Awaiting the surgery I began reading everything I could on what to expect and I found a lot of help on this web site! Good, frank discussions from guys who had gone throng this. I was told that the removal of the prostate involves ( very simply put) cutting the urethra tube, removing the prostate, then sewing the Uriah’s tube back together. Unfortunately, when that occurs the urethra tube is shorter by whatever length you prostate was before it was removed. As I said earlier I had a very large prostate before the surgery. She the shorter urethan tube is sown back together it pulls you penis back into your body which makes you penis shorter! I read that this fact is called “ the last humiliation” because after all the other things you have gone thorough ( there is no such thing as going through this with out feeling some embarrassing moments) now you wake up after surgery and you penis is about 1 inch shorter that it was before surgery! You will have a catheter after surgery but by the time it is removed, about a week later, that is the point you can really see your new, shorter penis! They say the day after the catheter is removed is the day your penis has become the smallest, due to the trauma your penal nerves have been through. I had read that and was prepared. That day I measured and I had a 2 inch penis!
Do not despair! You will regain some length as healing occurs! There are things you can do for “ penal rehab”and it does help!
After all the finasteride got out of my system and I did penal rehab, my penis did get longer but I am one in shorter that I was pre surgery and that will not change.
Taking Cialis increased blood flow and helps. Using a penis pump to cause it to be hard due to vacuum pressure, helps as well. I am 4 months lost surgery now. Pre surgery my penis was 7.5 long erect. Post surgery I am 6.5 inches erect ( with the help of a penis pump). I cannot get an erection naturally.
The incontinence continues and requires depends. I’m going to a physical therapy it strengthen my pelvic floor muscles in the hope of ending my incontinence.
Guys, it a struggle to experience this but your life is worth it! Keep your sense of humor, be optimistic, and face it as a short inconvenience in your life! I’m expecting to recover completely to controlling my bladder, and returning to an active sex life! You will too! It just takes a lot of patience and some time!
I hope this help you! If you need more detail or have questions just ask!

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@billybwbf2
Not that I mean to disavow your personal experience, but losing your penis length by 50% is a definite outlier! And losing an inch in length isn't typical or likely either.
You mention that you had a large prostate, and that would likely be the factor for your shrinkage.
But don't frighten other men from surgery based upon your own particular, may I say peculiar, experience.
That certainly wasn't mine, for instance.

nymitch | @nymitch | Feb 17 11:59am

I was on AS after 2 biopsies showing just one 3+3. Third biopsy showed all samples from left side were 3+4. So it had slightly worsened and spread inside the prostate.

Had rarp 14 weeks ago.. Largely continent in 6 weeks, fully continent now. I do have ED but feel that I will get most function back over time. Surgery was nerve sparing.

I preferred survey to radiation because one can’t have surgery after radiation. I was a candidate for cryotherapy in the beginning and sort of wish I had done that. But given my current condition I’m satisfied.

A side note: I feel better being off Flomax and Avodart, which I had been on for 25 years for BPH. And compared to those pre surgical BPH symptoms, my urination is much stronger.

Good luck to you whichever you choose. Be sure you see an expert surgeon at a Hospital of Excellence.

nymitch | @nymitch | Feb 17 12:00pm

I meant surgery not survey, sorry

jeff Marchi | @jeffmarc | Feb 17 12:46pm

In reply to @nymitch "I meant surgery not survey, sorry" + (show)

@nymitch
If you come back to a message and find an error within an hour or so, you can hit the three dots and edit your message and change what you wrote. I have to do it all the time because I use voice recognition, and it makes so many mistakes, even though I reread everything I can’t catch it all.

nymitch | @nymitch | Feb 17 1:22pm

Thanks for the tip

surftohealth88 | @surftohealth88 | Feb 17 8:28pm

My husband had minor incontinence that completely resolved by 4 mos post op. He is having some ED which is recovering nicely , he is only about 6 mos post op now. We are both happy with his choice of having RP and he would do it all over again if he had to make that choice again, so...

Wishing you the best of luck with whatever treatment you end up choosing !

PS: Just make sure that you find the BEST surgeon who did thousands of those procedures with good result

craiga0519 | @craiga0519 | Feb 18 3:39pm

I’m 67 years old now I had radical prostatectomy 16 months ago with some nerve damage recently I started Trimix that worked well except for the price my surgeon says, possibly that’s the only thing that will work for me unless I have an implant but recently I started having morning erections not sure what that’s about. Maybe it’s a start of recovery. My doctor told me it could be up to three years recovery. I’m hoping I just recover by choosing surgery over life is a no-brainer. My prostate was beginning to spread into my bladder, but everything is good now after surgery except for erections without injections, fingers crossed on that one

jeff Marchi | @jeffmarc | Feb 18 4:57pm

In reply to @craiga0519 "I’m 67 years old now I had radical prostatectomy 16 months ago with some nerve damage..." + (show)

@craiga0519
Great to hear you’re getting erections without anything, They can come back for some people, Especially if they’ve had nerve sparing. It just takes a while.

Here is a message from somebody in this Forum That uses trimix and discusses how to make it last the longest, in the freezer. You may find this really interesting, he also discusses the best way to inject it.
https://connect.mayoclinic.org/discussion/my-trimix-experience/

chippydoo | @chippydoo | Feb 19 9:12am

In reply to @sandguy "@billybwbf2 Not that I mean to disavow your personal experience, but losing your penis length by..." + (show)

@sandguy 50%? Did your surgeon gain length? I lost a little but nothing significant.

chippydoo | @chippydoo | Feb 19 9:18am

My overall RP side effects were minimal. After 5 months I ditched the pad and had no problem with erections. Organisms were great starting out and now could be described as micro at best. Then BCR hit after 2 years which is pretty common for many that have surgery. ADT with radiation which wasn't pleasant. I've heard that early treatment gives one the best chance of a positive outcome. With that said, I don't know your disease details and if it is a fast or slow moving cancer. Have you had genomic testing?