Urethral stricture 6 cm appreciate opinions, advice

I'm a 67 year old male and I had a prostatectomy in 2003, and when tests showed some cancer still present I had 8 weeks of daily broadbeam radiation.

14 years later PSA remains "undetectable" and that's the good news.

The bad news is that presumably due to all that radiation my urethra now has a 6 cm long bulbar stricture and I have had bladder voiding issues, urge incontinence, and 1 good sized bladder stone. It was the bladder stone removal that brought the discovery of the stricture.

I'm scheduled for a complex urethroplasty involving a graft from my cheek to be used in widening the urethra back to normal dimensions, covered by a gracilis muscle flap for blood supply.

The surgeon, who has an excellent reputation, warns that repairing the stricture has a good chance of leaving me with such unmanageable urinary incontinence that I should consider the Artificial Urinary Sphincter, which honestly I have many concerns and fears about.

The surgery is scheduled for June 28, and ironically the past several weeks have been very comfortable for me - i had two weeks after the urethrogram diagnostic procedure with a lot of incontinence and occasional bits of blood in the urine. Since that settled down I have sit down and take my time in order to get it all or most of it all out of the bladder, but I haven't needed any pads or underwear changes during the day, and have felt more comfortable than I had in recent months.

The doctor says that's probably just because the stricture has further narrowed or closed off, and I should continue with the planned surgery.

I just want to know if anyone out here has gone the route of trying to just "live with" a strictue of this size, and how that worked out for them. I read one study that said " . . . analyzed presenting features, complications, and potential risk factors for complications in a series of 611 patients who presented with anterior urethral stricture over a period of 6 years. The patients had a mean age of 49 years, their strictures most often involved the bulbar urethra (69%), and were most often idiopathic (47%). Overall, 240 patients (39%) were identified as having one or more complications directly related to urethral stricture. Acute urinary retention was most common (30%), followed by difficult catheterization (14%), urethral abscess (7%), and renal failure (4%)."

That actually sounded a lot less worse than I would have expected based on the way doctors are telling me that doing nothing is far too risky and could even be fatal.

I know that my age of 67, the length of the stricture, and my Type 2 diabetes are all concerns, but I can't help but wonder, especially since I now wish that I hadn't rushed into the surgery and then the radiation as I did back then, encouraged by doctors giving a hard sell on their "gold standards" which seems to be their description for every process. Please don't get me wrong, I'm glad to be alive and still in remission all these years later, but being completely urine incontinent and possibly needing an artificial sphincter seems so much worse than the way I feel right now. Or am I just letting anxiety at the approach of the big day tempt me into making a mistake which will cost me big-time down the road?

Any thoughts, facts, opinions from anyone will be appreciated.

Thank you for your reply, Iapilot, and I it is wonderful that you are now doing so well.

You are correct about my stricture being different, and the medical consensus was that trying to self dilate would be ineffective and probably do more harm than good, making the subsequent surgical repair even more difficult.

Still hoping to hear from anyone who has chosen a path of living with the stricture rather than having a surgical repair, or even just has an opinion on that.

Thank you kukukajoo. Are you the Eggman or the Walrus? LOL.

Dr. Vanni cites a success rate of 80% for his "Urethroplasty for high risk, long segment urethral strictures with ventral buccal mucosa graft and gracilis muscle flap" but allows that my diabetes plus the fact that this is irradiated tissue drops me down a bit to 70 - 75 %. If it fails, then "urinary diversion" such as a suprapubic catheter might be the fallback.

And yes, we will be sure to have eyes kept on the blood glucose levels, including post-op.

Thank you very much for your kind words and good advice.

Thanks again island time. Please know that I very much appreciate your generous discussion, and that you are helping me immeasurably in the struggle to frame my thoughts. As tempting as it is to give in to my apprehensions about the surgery, you have done an excellent job of accurately summing up the negative aspects of that - the wondering every day about if and when it will get worse, if I'll end up rushing to an ER in pain because I can't pee at all, and where someone much less skilled than Dr. Vanni will be trying to shove a cath up there, possibly doing more damage that either complicates or ruins what chance I had for surgical repair. So I guess it will probably be: get the surgery; hope the repair works, and along with it hope that the degree of urinary incontinence is manageable with a couple or so of underwear shields a day, and if its unmanageable think about an external catheter with a leg bag and if that doesn't work out think about the artificial sphincter. I think pretty much everyone on this board can relate to having choices, none of which are very appealing. But we have to choose, and we have to keep fighting.

Thank you again, sincerely. As for your situation, I hope that you are able to get that stone out, as I know from experience they are no fun at all. As for how they knew that you had a bladder stone without getting the scope up as far as the bladder, I wonder if they also did an MRI. I had the same situation, the scope couldn't get there but an MRI showed a nice clear picture of the bladder stone. In any case, all the best to you, and my gratitude for your sharing of experience and thoughts.

Hi Banff, I am one of the few guys on HW who does have a SupraPubic Catheter (SPC). I have had mine for 2.5 years.

It is a matter of some annoyance to me that I don't really know why I ended up needing an SPC or what I can now do about it, but I'll relate the tale.

Following surgery it was determined that I needed RT. That was scheduled for a few months after surgery and by the time I started I was 90-95% continent. However a few months after the RT was finished I very suddenly became incontinent again. For some reason I can't now remember, my Uro performed a cystoscopy and following that I had trouble peeing. It did eventually work, but was low flow and I still had incontinence. The Uro reported that there was some scar tissue at the anastomosis so then attempted a dilation procedure and at the end of that it again took some time before I could pee again (had to have a temporary catheter for a week or so).

With a continuing (and worsening - 6 to 7 pads per day) incontinence I asked my Uro about an AUS. Because of the scar tissue, he wasn't game to perform the surgery himself and referred me to a Urinary continence specialist proclaimed to be the best in Australia. At the initial consultation he was full of gloom and doom. "the worst possible situation low flow and incontinence together" however he suggested a Urodynamics study to check the function of the bladder and after that performed a cystoscopy so he could check the situation for himself. Yet again that resulted in an inability to pee so had to leave hospital with a urethral catheter. To make matters worse, his surgery was 200 miles from home so I had to drive home with that catheter in situ. most uncomfortable 3 hours of my life.

Back home my local Uro had several attempts at removing the catheter, but each time I remained retentive, so in the end there was no choice but to put in the SPC.

Iinitially, I expected that to be only a temporary thing, but it soon became clear that my Uro and his "expert specialist" had both run out of ideas. They couldn't even tell me why I was retentive. They had carried out the cystoscopy wth a 14 Fr catheter and had no trouble passing it, but still no urine flowed on demand. It was suggested, without much conviction, that the nerve to my sphincter might have been damaged by the RT and was stuck in the closed position. If that is the case, then in theory an AUS could be the answer, but there is so much doubt that I am reluctant to take the plunge with more surgery.

Living with an SPC is not too bad. It is inconvenient at times and it has to be changed every 4 to 6 weeks. That is done by the community nurse at our local health centre and only takes about 20 minutes. I do suffer a degree of discomfort during the change but I now always see the head nurse and she has a technique which minimises any discomfort. It has now become my new normal.

I won't prolong the post by detailing all the issues of living with an SPC, but am happy to provide more detail if required.

For me it is preferable to the massive degree of incontinence I was experiencing.

Good luck with whatever you decide.

Chas

Banff, I agree totally. However it is often difficult to know if you have the right guy on board. In my case I accepted the referral my GP gave me and a couple of people connected with the local support group indicated that he was a good guy - even though they hadn't used him themselves!! He was also known as the local "rock star" but I think that is largely as a result of his own publicity. Nonetheless, I found him very affable and easy to deal with and I felt confident with him.

In hindsight, I can now list a whole range of issues where I felt he fell short, or even was quite incompetent, but always difficult to be certain. For instance, two days after I went home from my original surgery, the balloon of my catheter pulled down into my urethra during sleep. That resulted in a trip to the Emergency room and an enormous amount of pain until they were able to release the catheter and insert a new one to empty a very full bladder. Now did that happen because he didn't inflate the balloon properly, or did he leave it to his assistant to finish off and she just forgot. I dunno, it may just have been bad luck with a faulty catheter, but the doubt remains.

I also berate myself at times for not having done more research before surgery, but the blind panic of CANCER!! clouded my judgement.

Chas

Banff - I saw your reply on CSN and replied in kind there. Given the choice between incontinence and urinary retention I'll take incontinence any day. Having experienced retention for a couple weeks I know that one of the worst feelings in the world is having an exploding bladder and unable to urinate. Some here may have read my recent thread www.healingwell.com/community/default.aspx?f=35&m=3855557 describing my experience with the AMS800 implant surgery.

Following the initial implant surgery I had a Foley cath for two weeks because I could not urinate. Then the urologist did a cystoscopy and admitted me for emergency revision surgery to upgrade to the next higher cuff size. I also had the suprapubic catheter for a few days afterwards, but that was only temporary.

Well, the AUS still isn't right. I will be seeing the surgeon later this week and I plan to tell him that if this is the way the AUS will always be then I will want it removed as soon as I finish SRT. I can only pee sitting on the toilet like a girl. I have to kneel at the dinner table to eat, even though I have a pillow on my chair, there is too much pain in my groin. And when we go out to eat I have to sit on one cheek. At home I am comfortable sitting only if I slouch back so my weight is resting on the back of my hips. I would rather go back to condom caths and live with incontinence than condemn myself to a life of poor posture and all the complications that can bring about.

It sounds like you have worked out all the scenarios of what could go wrong if you simply do nothing as well as what could potentially happen if you let them do everything, so I really can't advise in that regard. I do wear a medical alert bracelet now anytime I am away from home, because the AUS has been in for a month, and even though it is not yet activated, any cathing must be done using a pediatric catheter or else cause some serious damage.

Nothing is ever easy.

Banff said...
... things like the best wordsmithing for that medical alert bracelet.

One of the Foley replacements between surgeries was done by my original urologist, whom I hadn't seen since he referred me to the Urosurgeon several months ago. He's the one that my wife told jokingly that I wanted to get a "no cath" tattoo over my pubes, and he said some people do that, and that it is a very serious matter. And then he told me that I should only allow myself to be cathed by a Urologist. He was very adamant about that, and he repeated it, by a Urologist. So that's what I had engraved on my bracelet.