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Extremely Large prostate with localised cancer

User
Posted 13 Sep 2020 at 18:19

Hi

im looking for advice and info about radical prostatectomy on a very large prostate. I have localised cancer and a prostate of 170cc. Looking also for info about surgeons who have specific experience of RP on extremely large prostate. 
Thanks

Edited by member 23 Oct 2020 at 13:32  | Reason: Not specified

User
Posted 13 Sep 2020 at 22:04
We can't name or recommend surgeons on here, Raffles - it is against the site rules.

Can you give some more information about your diagnosis - this will help us all to help you. Has your case been discussed by the multi-disciplinary team who have recommended surgery or are you just thinking at the moment that this might be your preference? The size of your prostate may have ruled out options such as brachytherapy but it would be helpful to know whether radiotherapy was considered?

If you are having surgery, the useful things to clarify would be:

- as the prostate is so large, would the op still be keyhole / robotic or are they recommending open surgery?

- will the op be nerve sparing or non-nerve sparing?

- have they discussed with you the impact that removal of such a large prostate might have on the length of your penis afterwards? Of course, your 170cc prostate may be very wide but no longer than usual but on average you lose the same penis length as the length of the prostate gland.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 14 Sep 2020 at 09:14

Hi Lyn 

Thanks for your comments. My case has been discussed with MDT and I met with surgical consultant last week. Im now gathering as much information as possible before deciding which option to take RP or RT. Your right about brachytherapy being ruled out given the size of my prostate, unless someone on here has other experience.

My surgeon said that operation would be robotic and nerve sparing on one side. Has anyone experience Neorosafe on the NHS?

My recent biopsy results are as follows. 

Right anterior benign. Right mid 1 out of 3 cores Gleason 3+3 maximum core length less than Imm. Right posterior (target) 3 out of 6 cores Gleason 3+4 mcl 10.1mm

Left anterior benign. Left mid 2 out of 3 cores Gleason 3+3 mcl 3.5mm. Left posterior 1 out of 3 cores Gleason 3+3 mcl 0.9mm

Conclusion 7 out of 21 cores positive also showing some introductal carcinoma and an extremely large prostate at 170cc

I understand that individual surgeons cannot be named on here but I would welcome any comments and advise re having surgery with a prostate this size. are there any clinics that specialise in this. I'm happy to trust my consultant but just looking for other opinions before taking the Plunge

Best Wishes

Dave 

 

User
Posted 14 Sep 2020 at 10:43

Originally Posted by: Online Community Member
- have they discussed with you the impact that removal of such a large prostate might have on the length of your penis afterwards? Of course, your 170cc prostate may be very wide but no longer than usual but on average you lose the same penis length as the length of the prostate gland.

I'm doubting this. Yes, you normally lose some length, but

a) the bladder neck and urethra are pulled together to meet, so the bladder moves too, not just all done by pulling urethra in, and

b) large prostates tend to grow up pushing into the bottom of the bladder (they can't grow down - pelvic floor is in the way). This was very clear on my cystoscopy, where when we looked around inside my bladder, there was a large inward dent at the bottom where my 94cc prostate was pushing in to it, and the urologist noted that, saying I had a large prostate (exact size wasn't known at that point).

I doubt the penis length lost directly maps to the length of the prostatic urethra.

Edited by member 14 Sep 2020 at 10:44  | Reason: Not specified

User
Posted 14 Sep 2020 at 12:36

I had RARP on the NHS. I decided years ago that I didn't agree with private medicine on principle and have never regretted that decision. My Op was fine and you're only in one night, so the lack of plush room or better food wasn't noticed. The results, so far, have been as good as could be expected, but then it was only 6 months ago.

User
Posted 14 Sep 2020 at 15:51

I had my Retzius sparing RARP and Neurosafe done by the Prof Whocannotbenamedonhere. Worth searching for Santis in google.

high volume surgeon is a good place to start.>100 procedures per year.

i had expected a shortening but in my case didn’t see any change. The urethra is quite elastic and adapts plus the bladder it pulled down to reconnect so hopefully will be much the case with you too.

neurosafe is being reviewed by NICE I think. Not due on the NHS for ~5yrs. Definitely worth having as gives the surgeon extra visibility during the op. My frozen sections taking in real time showed some focal involvement so they took more tissue. However, I was fortunate as the paraffin staining with histology showed them to all be in fact clear.

my biopsy was 3+3 but the Prof rightly predicted as upgrade from histology - 3+4. I had tumour in all four quadrants of the prostate. The timing of the surgery was right on the nose as had I left it much longer would have almost certainly breached the capsule.

Edited by member 14 Sep 2020 at 16:00  | Reason: Not specified

User
Posted 14 Sep 2020 at 22:24

Originally Posted by: Online Community Member

I'm doubting this. Yes, you normally lose some length, but

a) the bladder neck and urethra are pulled together to meet, so the bladder moves too, not just all done by pulling urethra in, and

b) large prostates tend to grow up pushing into the bottom of the bladder (they can't grow down - pelvic floor is in the way). This was very clear on my cystoscopy, where when we looked around inside my bladder, there was a large inward dent at the bottom where my 94cc prostate was pushing in to it, and the urologist noted that, saying I had a large prostate (exact size wasn't known at that point).

I doubt the penis length lost directly maps to the length of the prostatic urethra.

 

You may be right but John's urologist wouldn't agree with you and there is a fair bit of research to support his view - he told us of a patient who was never again able to urinate standing up post-RP. Undoubtedly, the shortening immediately post-op tends to right itself to an extent, and this is helped by good penile rehabilitation (notably, the vacuum pump and / or regular masturbation / pulling as described by Mityana the other day) which can help to draw the urethra and therefore the bladder down rather than just relying on gravity. I didn't say to Raffles that it is definitely going to be a problem with a large prostate but I think it is reasonable to suggest that he asks the question if he has an opportunity?

See report from 2017 - the best predictor of penile shortening is prostate size. 

https://www.practiceupdate.com/content/investigation-of-changes-in-penile-length-after-radical-prostatectomy/56962 

Edited by member 14 Sep 2020 at 22:48  | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 14 Sep 2020 at 22:48

Raffles, the element of intraductal carcinoma may be as significant as the large prostate, if not more so, because it can be an indicator of more aggressive cancer and is closely associated with seminal vesicle involvement - it may be that this is a bargaining tool for accessing Neuro-safe on the NHS? There are a small number of hospitals conducting a clinical trial of Neuro-safe but I am not sure whether it would be suitable as it is a randomised trial:-

https://bmjopen.bmj.com/content/9/6/e028132 

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

 
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