Hi Everyone, hope all is well....this is a delicate subject but would really appreciate some help/advice as the NHS in my opinion are poor at offering up front info /advice / counselling on procedures which affect dramatically quality of life and certainly this topic has never been mentioned.
After much painful deliberation I yesterday told my urology dept. that I will have my bladder , prostate , seminal vesicles removed instead of a 12-16 wk chemo course , possibly followed by radiation. Bladder removal gives me a 35% chance of cure and the chemo route is not curative. Reaching this decision has been really hard .
Yesterday I saw on American health/urology sites and forums people discussing how their penis had shortened after having their prostate removed and how not one of them had been told about this before the op ....
Have people who have had prostate removal experienced this please? As I say I know it is delicate but I am kind of again climbing the walls as to what to do next.
Thank you In advance and please take care!
Hi P
I have heard that many times that the penis is shortened by having the op and I don't think it is very often mentioned.
Having the prostate removed does seem to alter the whole structure in that area. One reason but not the only one why I went for RT.
best wishes
Steve
Hi Pienmash, penis's shrinking is not solely down to the operation, it's down to anything that reduces or stop testosterone even men on long term hormones suffer the same result, my oncologist says it can shrink upto 40%, not good news but better than dieing, there are products available to offset the shrinkage like vacume pumps, if you don't ask questions they won't tell any answers, shy boys get nowt.
This wasn’t mentioned before the op as I think the surgeon was solely focused on saving a life, in the great scheme of things, penis size doesn’t matter but after the op, there are many many conversations about this and help is given with regular follow ups if needed. Definitely worth a discussion with your specialist nurses as they will hopefully put your mind at ease
I agree with those who have mentioned that it not just the op., and could be related to other things. I’m not sure if there is research on this subject, but inevitably it’s going challenge the well-being of quite a few guys when you consider other considerations that have to be dealt with such as ED etc.
There has been a slight shortening in mine and there is also a slight curve where before there was none. I believe one of the causes is the fact that, when the prostate is removed, a section of the urethra goes with it.
I was told pre-op that this was a likely outcome, but in the great scheme of things I didn’t give it any thought. I still don’t.
I had a Prostectomy in Nov 22.
What you are asking about is correct. In its flaccid state yes it is. As part of the recuperation I'm using the pills and a pump. Once I use the pump its back to its normal size.
I questioned my decision and still do but due to my Gleeson 7 and super close margins, radiation wasn't recommended by the surgeon or the radiotherapist.
Life after surgery is different thats for sure but it can still me fun, this just requires you and your partner to have some frank conversations.
Good luck with whichever way you go.
Paul B
I was fortunate that my urologist was totally honest with me on the facts as hard as it was to believe. He said to stop cancer growth hormone therapy to remove testosterone is recommended. But he told me my testicles and penis would shrink. It was really hard to believe and hoped it wouldn't be true but it was! My penis and testicles kept getting smaller as i took each hormone therapy shot! It was like a crazy movie as i got smaller and smaller as well as having no erection! I used to be circumcised but now because of shrinkage the extra skin makes me appear uncircumcised now! I would never have believed this could happened! I never knew how important testosterone is to penis size! I have yo be thankful the cancer is not growing but it seems so weird to have a tiny uncut penis attached to my body. Have other guys had this experience? Any advice?
Hi !
Seems nobody had the ’penile rehab’ talk with you. If I understand you correctly you’re on hormone therapy and there is a saying; use it or loose it just to remind us that there is help if you’re willing to make the effort
I don’t know if you’re on PDI5 inhibitors. regular use (ex daily use of Tadalafil or the use of Sildenafil some days a week) helps the bloodflow and perhaps also erection even if the libido is bad / gone, the use of a penile pump on a very regular basis helps your penis alot; mitigating risks of penile shrinking, can help the erection and by pumping in blood into the penis you mitigate the risks of future venile leaks. Then there is second line with injections and etc.
So, penile rehab is extremely important when on hormone therapy, after radiation and / or after prostatectomy
Best wishes - Ulf
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