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Bladder Neck Reconstruction Surgery etc

User
Posted 06 Nov 2024 at 23:03

My husband was diagnosed 2015 with locally advanced prostate cancer treated by robotic surgery plus radiotherapy a few months later as some breakout - clinical trial. Incontinence was moderate to begin with but most unfortunately found to have bladder cancer two years later tho fortunately early non-invasive type.  
Treated but had some recurrence. Incontinence became total.


 


 No recurrence now for 5 years thankfully. 
But as a result of all this and :


 


- many cystoscopies to monitor /treat 


 


- course of chemo into bladder


 


- infections++ including urosepsis after a failed flexible cystoscopy ( scary as hell) 


 


- recurring stenosis and multiple bladder neck incisions 


 


- recurring acute retention becoming more frequent 


 


- inability to self catheterise ( not surprisingly you will understand! )


 


- and the bladder cancer meaning a suprapubic catheter is ruled out as risk of residual or recurring cancer cells travelling :-( 


 


SO - now looking at referral in London to explore feasibility of reconstructive surgery. 


 


And we are wandering if anyone here has been down that road and anything useful to share? 

Edited by moderator 06 Nov 2024 at 23:48  | Reason: Not specified

User
Posted 07 Nov 2024 at 10:42

Fizz, as the saying goes you have been through the mill. I was due to have urethral reconstruction followed by the fitting of an AUS many years ago. Unfortunately salvage RT did damage to the bladder that made it impractical. I will pm you the name of the guy who was recommended, I never got to see him due to the bladder issues. 


I note you have said you can't have a suprapubic catheter, I have had a suprapubic catheter for over six years, I tolerate it. A urostomy or similar was ruled out as it feared the radiation had damaged the bits they use for diversion. 


Retention and incontinence has got to be a nightmare scenario. I did do some self catheterization but mostly to keep my stricture open. I had 12 or 13 dilatations before the suprapubic was fitted.


Hope you get a resolution.


Thanks Chris 


 

User
Posted 13 Dec 2024 at 18:11
Thanks - lots in common there - it’s good to know others who ‘get it’! The reason he can’t have a suprapubic is that two years after the prostate diagnosis he also got bladder cancer. So, they won’t do SP because of risk of escape of bladder cancer cells into system :-( - he’s had no recurrence of it now for 5 years but they feel it’s still too much of a risk as bladder cancer - even relatively low grade as his was - is a pesky menace for recurrence.

We will see what new specialist at University College London urology unit thinks in the New Yesr hopefully!

Wishing you well.
User
Posted 13 Dec 2024 at 20:40

Fizz, got your message thanks. Hope all goes well with his next stage of treatment.


Thanks Chris.

 
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