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Stricture surgey after RT

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User
Posted 18 Jan 2017 at 15:36

Hi all

As many of you will know I have an ongoing stricture problem, now with a rising PSA salvage RT is on the horizon. The effect of RT on the stricture will I guess be similar to the effect of RT on the prostate, the chance of an AUS or urethral reconstruction after RT seem to have been removed as an option. A long term SPC is being discounted due to the risk of bladder cancer. The first option seems to be a urostomy i.e. removal of the bladder and installation of a stoma and bag etc. No one mentioned that as a side effect.

Is there anyone on here who has experience or knowledge of stricture / urethral, reconstruction or surgery following RT damage to the urethra?

Thanks Chris

User
Posted 18 Jan 2017 at 18:39

Hello Chris
I just wanted to say how sad I am to hear of your ongoing problems. I guess you're as well read if not better than most of us based on your experiences so you know many of the issues. I've read that structure problems are a common long term side effect of RT , so giving that to someone who has had endless structure problems already doesn't seem that great an idea ?? What do we know. As horrible as it sounds I think I would be seriously looking at bladder removal if they are recommending it , and reduce overall treatment , pain , surgery etc , but I'm very QOL orientated
I just wish you all the best sincerely -you've been a rock to me :-)

User
Posted 18 Jan 2017 at 20:59

Chris I too am saddened to hear your ongoing problems. As you know I have a bladder neck stenosis following the RP. Fortunately the RT doesn't seem to have effected that so consider myself fortunate

I can't offer any advice but really wish you well.

Bri

Edited by member 18 Jan 2017 at 20:59  | Reason: Not specified

User
Posted 18 Jan 2017 at 22:16
Sorry to hear your latest situation Chris

Best wishes, Arthur

User
Posted 19 Jan 2017 at 09:25

Hi Chris,

I don't know whether urethroplasty could be an option? Might be worth exploring? It's an operation I may have to have myself to resolve my stricture. As I now have a detectable PSA then salvage RT may be on the cards for me too, so I will ask the question when I see my consultant in a couple of weeks time.

I wish you well

Flexi

User
Posted 19 Jan 2017 at 13:25

Colwick Chris, could you sit down with the oncologist to talk about alternatives? The PSA progression is fairly slow; dad's consultant put his stats into a nomogram and calculated that if he did nothing it would kill him in about 20 years so he decided not to have salvage RT. You could perhaps go onto intermittent HT instead, along the lines of TopGun's strategy ... HT, knock it back, have a break, HT, knock it back, have a break? Plus I would want to know from the consultant "if I had already had salvage RT and it was rising again, at what point would you introduce permanent HT?" we know that this varies from specialist to specialist - Bri's consultant would wait until the PSA was 20 while others here report that it would be 5 or 10.

With your stricture problems, I would be reluctant for John to have RT - I would want him to have the best quality of life possible for as long as possible but might be tempted to play a bit of Russian roulette with hormone control instead?

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

User
Posted 19 Jan 2017 at 19:44

Yes they do

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

User
Posted 19 Jan 2017 at 21:48

Chris my restriction was a result of the RP where the urethra joins the bladder. I was concerned that the RT would complicate matters. Fortunately it didn't.

Lyn my oncol did say the PSA would have to reach 20+. I would probably seek a 2nd opinion on that should the need arise.

Bri

User
Posted 20 Jan 2017 at 00:13
No usually you fill the bladder to lift it out of the zapping zone. You empty the bowel to flatten it out of zapping zone. Sometimes it varies from this depending on a) how all your internal bits are laid out and b) where they think the cells might be lurking - they decided to include the bottom of John's bladder in the RT because he had some spread there spotted during the RP.

I guess it is reasonable to see the prostate bed as a wider area than the actual gland was.

Edited by member 20 Jan 2017 at 00:14  | Reason: Not specified

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

User
Posted 20 Jan 2017 at 06:07

Another reason they fill the bladder, according to a radiologist who did a presentation I attended, is to actually hold the prostate in place as it can move about. Filling the bladder holds it pretty much in the same place. Of course that doesn't apply to you Chris or myself with no prostate to hold

Bri

User
Posted 29 Jan 2017 at 10:27
Chris

I'm sorry I can't offer any advice. I have only just come back to the forum after a lttle break so just wanted to let you know how sorry I am that you continue to have even more problems. The only peeple I can think of who have had as many waterworks issues as you are Tony PW and Devonmaid's Husband John.

DM is also taking a break from the forum but I do keep in touch so I will ask if she has any ideas that might help.

Hope you are managing to remain cheerful despite everything and hope to see you and D soon.

xx

Mo

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User
Posted 18 Jan 2017 at 18:39

Hello Chris
I just wanted to say how sad I am to hear of your ongoing problems. I guess you're as well read if not better than most of us based on your experiences so you know many of the issues. I've read that structure problems are a common long term side effect of RT , so giving that to someone who has had endless structure problems already doesn't seem that great an idea ?? What do we know. As horrible as it sounds I think I would be seriously looking at bladder removal if they are recommending it , and reduce overall treatment , pain , surgery etc , but I'm very QOL orientated
I just wish you all the best sincerely -you've been a rock to me :-)

User
Posted 18 Jan 2017 at 20:59

Chris I too am saddened to hear your ongoing problems. As you know I have a bladder neck stenosis following the RP. Fortunately the RT doesn't seem to have effected that so consider myself fortunate

I can't offer any advice but really wish you well.

Bri

Edited by member 18 Jan 2017 at 20:59  | Reason: Not specified

User
Posted 18 Jan 2017 at 22:16
Sorry to hear your latest situation Chris

Best wishes, Arthur

User
Posted 19 Jan 2017 at 09:25

Hi Chris,

I don't know whether urethroplasty could be an option? Might be worth exploring? It's an operation I may have to have myself to resolve my stricture. As I now have a detectable PSA then salvage RT may be on the cards for me too, so I will ask the question when I see my consultant in a couple of weeks time.

I wish you well

Flexi

User
Posted 19 Jan 2017 at 13:12
Guys thanks for the messages of support.

Bri. Did your stricture form before RT or after.

CJ. You are an inspiration to all of us. I nearly backed out of surgery at the last minute,do I really need to go through RT and it's possible side effects ?

Flexi

I got in touch with a prostate clinic and got this back from a reconstruction consultant.

""It might be possible for me to put a graft from your mouth across the narrowed area, but in all honesty I think you will seal up as your stricture is so bad and you’re going to have RT. If that happens then the technique of putting a graft across the narrowing to widen it is a non-starter and you would need a redo vesico-urethral anastomosis (VUA)""

I am still looking for options, but info seems sparce.

Thanks Chris

User
Posted 19 Jan 2017 at 13:25

Colwick Chris, could you sit down with the oncologist to talk about alternatives? The PSA progression is fairly slow; dad's consultant put his stats into a nomogram and calculated that if he did nothing it would kill him in about 20 years so he decided not to have salvage RT. You could perhaps go onto intermittent HT instead, along the lines of TopGun's strategy ... HT, knock it back, have a break, HT, knock it back, have a break? Plus I would want to know from the consultant "if I had already had salvage RT and it was rising again, at what point would you introduce permanent HT?" we know that this varies from specialist to specialist - Bri's consultant would wait until the PSA was 20 while others here report that it would be 5 or 10.

With your stricture problems, I would be reluctant for John to have RT - I would want him to have the best quality of life possible for as long as possible but might be tempted to play a bit of Russian roulette with hormone control instead?

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

User
Posted 19 Jan 2017 at 16:52
Thanks Lyn

Certainly some things to ponder there and not a million miles off some of my thoughts. It is quite strange that my medical team think that having a urostomy will give me a better QOL.

Do guys having salvage RT go through the same routine of empty bowel and full bladder before each treatment as the primary RT treatment guys ?

Thanks Chris

User
Posted 19 Jan 2017 at 19:44

Yes they do

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

User
Posted 19 Jan 2017 at 21:48

Chris my restriction was a result of the RP where the urethra joins the bladder. I was concerned that the RT would complicate matters. Fortunately it didn't.

Lyn my oncol did say the PSA would have to reach 20+. I would probably seek a 2nd opinion on that should the need arise.

Bri

User
Posted 19 Jan 2017 at 22:47
Thanks Brian

If I am understanding it right, you fill the bladder to push the bowel out of the way of the radiation, without a bladder is that exposing the bowel to more damage ? Also I am lead to believe that salvage RT covers a bigger area than primary RT does.

I do have a meeting with my Uro Nurse next week and will be push for a urgent appointment with an onco consultant.

Thanks Chris

User
Posted 20 Jan 2017 at 00:13
No usually you fill the bladder to lift it out of the zapping zone. You empty the bowel to flatten it out of zapping zone. Sometimes it varies from this depending on a) how all your internal bits are laid out and b) where they think the cells might be lurking - they decided to include the bottom of John's bladder in the RT because he had some spread there spotted during the RP.

I guess it is reasonable to see the prostate bed as a wider area than the actual gland was.

Edited by member 20 Jan 2017 at 00:14  | Reason: Not specified

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

User
Posted 20 Jan 2017 at 06:07

Another reason they fill the bladder, according to a radiologist who did a presentation I attended, is to actually hold the prostate in place as it can move about. Filling the bladder holds it pretty much in the same place. Of course that doesn't apply to you Chris or myself with no prostate to hold

Bri

User
Posted 26 Jan 2017 at 19:07

Hi

I had a meeting with my Uro/Onco nurse and I am feeling even less likely to agree to bladder removal. 

The concern it that the RT will have an adverse effect on the urethra and repair after RT may be difficult.

I know we are all different, but I would be interested to hear how many guys, after salvage or adjuvant  RT have a poor outcome on their water works and to what extent, especially if they have had stricture issues.

 

Thanks Chris

User
Posted 29 Jan 2017 at 10:27
Chris

I'm sorry I can't offer any advice. I have only just come back to the forum after a lttle break so just wanted to let you know how sorry I am that you continue to have even more problems. The only peeple I can think of who have had as many waterworks issues as you are Tony PW and Devonmaid's Husband John.

DM is also taking a break from the forum but I do keep in touch so I will ask if she has any ideas that might help.

Hope you are managing to remain cheerful despite everything and hope to see you and D soon.

xx

Mo

 
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