Urethral Stricture 6 cm, would really appreciate opinions, advice

Banff

Banff

Urethral Stricture 6 cm, would really appreciate opinions, advic

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 over that for the purpose of 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 to 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. 

RobLee

Incontinence and artificial sphincter

Hello - We corresponded briefly several months ago (if I recall correctly) about external condom catheters. I know nothing about strictures, however have been in communication with another gentleman who had a problem such as yours, not identical but with some similarities. His interest, and for the purpose of this post, is in ragard to the artificial sphincter. I have had two surgeries in the past month, one to implant the AUS and the second two weeks later to revise the AUS to the next larger cuff. One person I spoke with told me that a urosurgeon he had spoken with attomatically upsizes to the next larger cuff. Mine did not. Your can read more detail in my blog... click on my name and from the "about me" page click on blog at the top right.

My entire reason for getting the AUS was so that I can proceed with salvage radiation. I have been totally incontinent since my RP last summer, except that following the revision surgery I had a week of artificial continence due to tissue swelling. For me it was sort of like a vacation. Now I am back to diapers until my bruising and swelling heal suffuciently to return to using condom caths and the leg bag. There is still an issue with the AUS surgery and I return to see the surgeon later this week. Meanwhile, the activation date for the AUS has now been pushed back until near the end of July, but I am still hoping to start SRT before the end of August.

I guess my reason for replying is to say that eventhough everything I had read about the AUS from guys on several message boards, the AUS surgery has been far more arduous and complicated than I had ever imagined it would be. I am hoping that in the end everything will work out well, but so far it has been difficult.

Good luck!

 

Banff

RobLee said:

Incontinence and artificial sphincter

Hello - We corresponded briefly several months ago (if I recall correctly) about external condom catheters. I know nothing about strictures, however have been in communication with another gentleman who had a problem such as yours, not identical but with some similarities. His interest, and for the purpose of this post, is in ragard to the artificial sphincter. I have had two surgeries in the past month, one to implant the AUS and the second two weeks later to revise the AUS to the next larger cuff. One person I spoke with told me that a urosurgeon he had spoken with attomatically upsizes to the next larger cuff. Mine did not. Your can read more detail in my blog... click on my name and from the "about me" page click on blog at the top right.

My entire reason for getting the AUS was so that I can proceed with salvage radiation. I have been totally incontinent since my RP last summer, except that following the revision surgery I had a week of artificial continence due to tissue swelling. For me it was sort of like a vacation. Now I am back to diapers until my bruising and swelling heal suffuciently to return to using condom caths and the leg bag. There is still an issue with the AUS surgery and I return to see the surgeon later this week. Meanwhile, the activation date for the AUS has now been pushed back until near the end of July, but I am still hoping to start SRT before the end of August.

I guess my reason for replying is to say that eventhough everything I had read about the AUS from guys on several message boards, the AUS surgery has been far more arduous and complicated than I had ever imagined it would be. I am hoping that in the end everything will work out well, but so far it has been difficult.

Good luck!

 

Thank you very much, RobLee.

Thank you very much, RobLee. Yes, I recall our exchange of thoughts a while back, and you were extremely helpful and informative, as subsequent reading has shown you to be in helping many others on this forum.

First let me say that I've been following you on here, and I am very sorry that your AUS surgery experience has been, as you say, "far more arduous and complicated than I had ever imagined it would be." I am sure that I join many on this board in hoping very much that when your activation day comes you will find that things in that area will finally be so much better for you. And you can then proceed to your SRT and eradicate those remaining cancer cells and move forward with your life. I see how much you and your wife have been through, and I feel so much love and hope for two people that I don't really know. Many of us will be thinking of you and rooting for you on activation day.

As for me, my most current thought (I go back and forth, we all know how that goes I reckon) is that as tempting as it is to give in to my apprehensions about the surgery, I'm struck by the possible negative aspects of not going forward with it. The wondering every day about if and when it will get worse, if I'll end up suddenly rushing to an ER in pain because I can't pee at all, and where someone much less skilled than Dr. Alex Vanni (at at the Center for Reconstructive Urologic Surgery, Lahey Hospital in Burlington, Massachusetts who has an excellent reputation and lots of experience) 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 afterwards 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, because what else is there to do?

All the best to you, Rob, sincerely! Thank you for being willing to talk with me, and know that you are going to get that AUS pumping away, and you are going to get that salvage radiation and put an end to those cancer cells.

Have they provided a satisfactory explanation of why you can't get the SRT while incontinent? Couldn't they put an external cath on you while doing the treatment, for example? I ask only because I've seen studies about the results of SRT that include results for patients who were incontinent during the SRT, including one that I'll link to, below. It states: "The prevalence of pre-existing urinary incontinence prior to salvage RT was illustrated by the Pearse's series (89), in which 28/75 patients (37%) reported Grade 1 to 3 incontinence before salvage RT. The study reported that the cumulative incidence of urinary incontinence at 36 months was 16.8% for Grade ≥2 incontinence, and that pre-existing urinary incontinence was associated with a higher incidence of Grade ≥2 incontinence at 36 months (35.0% for patients with pre-existing incontinence vs. 9.6% for patients with complete continence at baseline) (89). Pearse also examined the prevalence of urinary incontinence at one specific time point of follow-up. At 30-month post-RT, 71 patients were available for this analysis. Of these patients, 45 were fully continent at baseline, and 26 had some degree of underlying urinary incontinence (23 with Grade 1, 2 with Grade 2, and 1 with Grade 3) prior to salvage RT. Of the 45 patients with complete continence at baseline, 31 remained totally continent, while 13 had Grade 1 and 1 had Grade 2 incontinence at 30 months. None had Grade 3 incontinence. Of the 26 patients with pre-existing incontinence prior to salvage RT, incontinence was unchanged in 11, worsened in 2, and improved in 13 at 30 months."

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2848745/

Bear in mind that study was in 2010, so maybe they've learned more by now. Or possibly in your case it is the degree of incontinence that is the critical factor. I don't know, but I just thought that it might be worth mentioning. If you are satisfied with your doctors rationale, disgregard my question, because it is not a learned or well-informed question, but only my curiosity.

 

 

 

 

VascodaGama

Why involving in a surgery without assurances of success?

Banff,

I have no experience on urethral issues but from what you share on your stricture problem and doctor's recommendations, I would suggest you to get second opinions.
It is not a surprise that the excellent reputation surgeon wants you to do the operation. What surprise me is that he scheduled you right away rushing the situation for an earlier intervention on a stricture issue. It seems that "all must fit his timing". However, surgeries with the dimension you comment above are recommended when one is confronting a traumatic case (Urethral Trauma) not a simple stricture. I wonder what assurances is the doctor giving in regards to successes. Why should you risk to become incontinent permanently?

In my view, some aspects you describe seem not be consistent with the diagnosis. The 6cm long stricture could be in fact a much smaller area if the fluoroscopy is done in a sitting position. This is, according to your experience, the way you pee well ("while sitting"). You say that "... I have to sit down and take my time in order to get it all or most of it all out of the bladder". Most probably, the bulbar area is the affected portion (anterior urethral includes both, the bulbar plus the penis, a more dramatic situation) which turns the area in need of treatment smaller.

Can you explain what took you to get the retrograde urethrogram (RUG). Can you share details on symptoms, or other experiences/medications regarding problems in urination since the salvage radiation treatment of 14 years ago till the bladder stone problem? For how long have you been in such a situation?

A long lasting chronic case of difficulty in passing urine can cause the creation of bladder stones, but these stones also can lead to the initial occurrence of stricture, with the consequence of urination retention (vise-versa). Which one is the case?

In this forum I have read many reports on such strictures after RT (me included) that are treated occasionally with medication. Some are due to urinary tract obstruction which is cared by a simple procedure to cut the unblocking tissue or enlargement of the urethra with dilators. Nasty cases lead patients to "self catheterization" for voiding.

Formation of fibrous (scar) tissue in the urethra resulting from radiation is expected but your therapy was done already many years ago. One cannot rule out other cause (such as a new cyst, etc). I think that you should firstly find the cause of the problem then treat it accordingly.

Congratulations on the long term in remission. The bandit is down and you may be cured.

Best,

VGama

RobLee

Banff said:

Thank you very much, RobLee.

Thank you very much, RobLee. Yes, I recall our exchange of thoughts a while back, and you were extremely helpful and informative, as subsequent reading has shown you to be in helping many others on this forum.

First let me say that I've been following you on here, and I am very sorry that your AUS surgery experience has been, as you say, "far more arduous and complicated than I had ever imagined it would be." I am sure that I join many on this board in hoping very much that when your activation day comes you will find that things in that area will finally be so much better for you. And you can then proceed to your SRT and eradicate those remaining cancer cells and move forward with your life. I see how much you and your wife have been through, and I feel so much love and hope for two people that I don't really know. Many of us will be thinking of you and rooting for you on activation day.

As for me, my most current thought (I go back and forth, we all know how that goes I reckon) is that as tempting as it is to give in to my apprehensions about the surgery, I'm struck by the possible negative aspects of not going forward with it. The wondering every day about if and when it will get worse, if I'll end up suddenly rushing to an ER in pain because I can't pee at all, and where someone much less skilled than Dr. Alex Vanni (at at the Center for Reconstructive Urologic Surgery, Lahey Hospital in Burlington, Massachusetts who has an excellent reputation and lots of experience) 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 afterwards 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, because what else is there to do?

All the best to you, Rob, sincerely! Thank you for being willing to talk with me, and know that you are going to get that AUS pumping away, and you are going to get that salvage radiation and put an end to those cancer cells.

Have they provided a satisfactory explanation of why you can't get the SRT while incontinent? Couldn't they put an external cath on you while doing the treatment, for example? I ask only because I've seen studies about the results of SRT that include results for patients who were incontinent during the SRT, including one that I'll link to, below. It states: "The prevalence of pre-existing urinary incontinence prior to salvage RT was illustrated by the Pearse's series (89), in which 28/75 patients (37%) reported Grade 1 to 3 incontinence before salvage RT. The study reported that the cumulative incidence of urinary incontinence at 36 months was 16.8% for Grade ≥2 incontinence, and that pre-existing urinary incontinence was associated with a higher incidence of Grade ≥2 incontinence at 36 months (35.0% for patients with pre-existing incontinence vs. 9.6% for patients with complete continence at baseline) (89). Pearse also examined the prevalence of urinary incontinence at one specific time point of follow-up. At 30-month post-RT, 71 patients were available for this analysis. Of these patients, 45 were fully continent at baseline, and 26 had some degree of underlying urinary incontinence (23 with Grade 1, 2 with Grade 2, and 1 with Grade 3) prior to salvage RT. Of the 45 patients with complete continence at baseline, 31 remained totally continent, while 13 had Grade 1 and 1 had Grade 2 incontinence at 30 months. None had Grade 3 incontinence. Of the 26 patients with pre-existing incontinence prior to salvage RT, incontinence was unchanged in 11, worsened in 2, and improved in 13 at 30 months."

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2848745/

Bear in mind that study was in 2010, so maybe they've learned more by now. Or possibly in your case it is the degree of incontinence that is the critical factor. I don't know, but I just thought that it might be worth mentioning. If you are satisfied with your doctors rationale, disgregard my question, because it is not a learned or well-informed question, but only my curiosity.

 

 

 

 

AUS and SRT

Thank you for the reply and for your kind words. As is the case with the majority of people here, we are struggling just to get thru this, are faced with decisions at each step of the way and hope that the one we make results in a favorable outcome. Sometimes the result is unfavorable and leads to more decisions and additional complications and the only thing we know for certain is that most of them cannot be undone and all we can do realistically is move forward. I am also following you on another cancer message board where you have given a bit more info on the background of your stricture and the misdiagnosis of your stone and how a simple thing like that can lead to where you are now. Additionally how having a "bad experience" can lead one to delay further treatment until matters become worse, then having to deal with feelings of guilt for having done so.

There is so much going on in my head right now including having read your thread on HW... I will try to respond there on issues there and keep this one to the SRT.

It basically came down to the fact that I would not be adequately continent to undergo SRT within a one year post RP timeframe. The radiation requires the ability to hold a full bladder, to reduce damage to the bladder and bowel. Some also insert a rectal water balloon... my RO says he doesn't do that, but other guys have recommended that I request one. Though I suppose it would be possible to use a penis clamp every day to hold enough urine to meet those needs, I have never had good luck with clamps. In addition, many guys experience WORSE incontinence after having radiation. And because the radiation alters the tissues my Uro said that if I will eventually get the AUS that it is better to have it put in before rather than after. So even though I realize that this is a surgeon trying to sell me something, everything seemed to be pointing to having the AUS first then the SRT rather than the other way around.

I have written more on the AUS saga on the other message board than I have here. You can find it there by searching "AUS saga continues". Additionally, I am in the chatroom here on CSN most nights. The link is in the pink box at the top left of every page here (if you are into chat). There are people there with all kinds of different cancers, though mostly women... which is of no real interest to me now that I am on hormone blockade I am essentially sexless.