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Urethral Strictures after RT

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User
Posted 03 Feb 2019 at 19:41

I was wondering if someone could advise me on urethral stricture disease following treatment for PC, and also what the success rates are for urethroplasty?

I was diagnosed with PC at age 50 with Gleason 7, PSA 4.7 and T2C staging. I underwent DaVinci robotic RP 4 years ago. Everything was fine for ~15 months before a biochemical recurrence was detected, my PSA went from <0.1 to 0.2 to 0.4 in 6 months. I was also having problems urinating around about this time and was passing some blood. A cystoscopy was performed, and a urethral stricture was identified. Had a Urethrotomy 15 months ago and was catheterised for a week. Immediately after this I was started on 4 months of hormonal treatment (HT). I think I got every side effect including some new ones. Almost consistently with every prostap-3 injection I would develop uveitis flare ups in my eyes which resulted in urgent trips to the hospital eye clinic. Anyone else experienced this?

The HT was followed by 4 weeks (20 sessions) of radiotherapy (RT). My PSA last August had dropped to <0.1 again, which was some good news, although the oncology nurse said this could be either due to the HT or the RT.

After the RT the stricture recurred and I was back in hospital for a urethral dilation in October last year, catheterised then for a week. I found afterwards when trying to do intermittent self-catheterisation (ISC) that there felt like there were now two strictures and ISC was becoming difficult. I was also passing blood nearly every time I was urinating. The strictures were confirmed by cystoscopy and urethrogram.

At the start of the new year I had further blood tests which indicated my kidneys were not functioning that well which the GPs believe was due to a backflush. This was followed up with an urgent call to my urologist, who after consultation arranged another urethrotomy the following day. This time the catheter has been left in for 4 weeks in an attempt to prevent the stricture recurrence. The catheter hopefully will come out next week; 3 weeks after the op however I’m still having bleeds.

Just wondering if anyone else has had a similar experience of developing urethral strictures following RP, HT and RT. I’d be interested to hear if anyone has also undergone urethroplasty, as after RT I wasn’t sure if this is an option? 

User
Posted 04 Feb 2019 at 08:04

Mart77

There are quite a few of us on here who have developed strictures. If you read my profile( click on my avatar or name) you will see I developed my stricture a few months after surgery, despite many dilatations and incisions into the scar tissue it never really got my urethra back to something like normal. I had similar problems to you with the ISC. I was going to have urethral reconstruction and an AUS but my bladder has now shrunk to a capacity of around 50 ml so the option is no longer viable. I had a SPC before RT as insurance against the urethra closing up, a few months after RT I was passing lots of  clots and debris, then the bladder started to lose capacity.

 

I was told by my consultant there is only one surgeon in the country and possibly Europe who has the skills to perform urethral reconstruction after RT. I will PM his name as we are not allowed to name names on the site. 

 

How is your continence, flow and capacity , no need to answer if you don't wish to ?

 

All the best for your treatment.

 

Thanks Chris
User
Posted 09 Feb 2019 at 10:19

I was a little surprised at RT being given when a stricture is present in view of what my consultant has told me. I was diagnosed with a stricture in 2013 which I am fairly certain was caused by a cystoscopy that went a bit awry some years earlier.  I now have PC and am due to have robotic surgery in April . I have had 2 urethethrotomies and practise ISC once a week.  I am due to see an oncologist to discuss alternatives to surgery but the urologist has said that RT is a non starter due to the stricture.  He also told me that urethroplasty was out of the question because of the surgery and warned me that I might have to increase the frequency of ISC.

User
Posted 09 Feb 2019 at 10:59

Surfcaster

In some ways I was between a rock and a hard place, sort the stricture and leave the cancer to do it's worst or treat the cancer and let the stricture get worse. My onco elected not to combine RT with HT as the HT can increase the toxicity of the RT. My surgeon's first thought was to remove the bladder completely which I resisted, one of his colleagues suggested  a SPC as insurance against the stricture closing completely and once RT was finished I would have urethral reconstruction by a Prof in London. The stricture seems to have stabilised but the bladder is damaged , today I managed to hold 75ml of urine. So reconstruction and AUS in no longer an option.  One way or another I am stuck with a bag for life and I don't mean the Sainsbury's one.

Hope all goes well with your treatment.

Thanks Chris

Edited by member 09 Feb 2019 at 11:03  | Reason: Not specified

User
Posted 10 Feb 2019 at 21:52

Mart

I hope all goes well on Thursday and that the problem gets sorted.

Best wishes 

Pete 

User
Posted 10 Feb 2019 at 22:36

Matt

I did frequently get blood in my urine just after and sometimes the day after performing ISD, quite often I would get a few drops of very red blood either at the start of urination or at the end of urination.

I only had incisions into the scar tissue on about three occasions the last incision was about a year ago, the urethral catheter was removed after about two weeks but I was still passing blood six weeks later. The added complication of the SPC means I still pass blood etc now. 

On one occasion I did have a large amount of pure clotting blood coming out between the penis and catheter but that was four days after having my  urethra punctured during an attempted dilation.

Sounds like you have already taken advice from your team and you will be seeing them again on Thursday.

Once you get the catheter out it may all settle down, I did find my whole bladder and stricture situation improved when I was advised to do ISD less frequently.

Thanks Chris

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User
Posted 04 Feb 2019 at 08:04

Mart77

There are quite a few of us on here who have developed strictures. If you read my profile( click on my avatar or name) you will see I developed my stricture a few months after surgery, despite many dilatations and incisions into the scar tissue it never really got my urethra back to something like normal. I had similar problems to you with the ISC. I was going to have urethral reconstruction and an AUS but my bladder has now shrunk to a capacity of around 50 ml so the option is no longer viable. I had a SPC before RT as insurance against the urethra closing up, a few months after RT I was passing lots of  clots and debris, then the bladder started to lose capacity.

 

I was told by my consultant there is only one surgeon in the country and possibly Europe who has the skills to perform urethral reconstruction after RT. I will PM his name as we are not allowed to name names on the site. 

 

How is your continence, flow and capacity , no need to answer if you don't wish to ?

 

All the best for your treatment.

 

Thanks Chris
User
Posted 04 Feb 2019 at 22:41

Chris,

Thanks for the information on the surgeon. I read through your profile, that’s a lot of dilations that you’ve add.

Since my RP and also the RT I’ve probably been 95% continent, just the odd occasion when I get a bit of leakage, always wear a small pad just in case. Flow and capacity seemed to be back to normal but has decreased with development of the strictures until either a urethrotomy or dilation.

I'm not sure what I’ll be like when they remove this catheter as its been in 4 weeks, the longest I had one in previously was 2 weeks after the RP, it took several weeks then to get back to near normal continence. I was getting bleeds nearly every day before my last urethrotomy in January. I’m still getting them even with this in-dwelling catheter, not sure where the blood is coming from. I’ll see what the urologist says this Friday.

All the best to you too with your treatments.

Thanks Mart

User
Posted 05 Feb 2019 at 21:45

Mart

Are you talking about blood colouring the urine or passing big blood clots and debris.

Thanks Chris

 

User
Posted 09 Feb 2019 at 10:19

I was a little surprised at RT being given when a stricture is present in view of what my consultant has told me. I was diagnosed with a stricture in 2013 which I am fairly certain was caused by a cystoscopy that went a bit awry some years earlier.  I now have PC and am due to have robotic surgery in April . I have had 2 urethethrotomies and practise ISC once a week.  I am due to see an oncologist to discuss alternatives to surgery but the urologist has said that RT is a non starter due to the stricture.  He also told me that urethroplasty was out of the question because of the surgery and warned me that I might have to increase the frequency of ISC.

User
Posted 09 Feb 2019 at 10:56

Originally Posted by: Online Community Member

I was a little surprised at RT being given when a stricture is present in view of what my consultant has told me. I was diagnosed with a stricture in 2013 which I am fairly certain was caused by a cystoscopy that went a bit awry some years earlier.  I now have PC and am due to have robotic surgery in April . I have had 2 urethethrotomies and practise ISC once a week.  I am due to see an oncologist to discuss alternatives to surgery but the urologist has said that RT is a non starter due to the stricture.  He also told me that urethroplasty was out of the question because of the surgery and warned me that I might have to increase the frequency of ISC.

your uro sounds like a bundle of laughs - I would let the onco advise on oncology options.

Faced with radical treatment options, it might be true that RP is going to be less risky than RT where there is an existing stricture but the guys above were going into salvage treatment not radical, and their strictures have almost always been caused by the RP. 

In your situation, as well as seeing the onco I would want to confirm with the surgeon the likelihood that the RP could make things worse, and whether open surgery might be better than robotic in this case. If your surgeon doesn't do open RP, perhaps a second opinion from one who does? 

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

User
Posted 09 Feb 2019 at 10:59

Surfcaster

In some ways I was between a rock and a hard place, sort the stricture and leave the cancer to do it's worst or treat the cancer and let the stricture get worse. My onco elected not to combine RT with HT as the HT can increase the toxicity of the RT. My surgeon's first thought was to remove the bladder completely which I resisted, one of his colleagues suggested  a SPC as insurance against the stricture closing completely and once RT was finished I would have urethral reconstruction by a Prof in London. The stricture seems to have stabilised but the bladder is damaged , today I managed to hold 75ml of urine. So reconstruction and AUS in no longer an option.  One way or another I am stuck with a bag for life and I don't mean the Sainsbury's one.

Hope all goes well with your treatment.

Thanks Chris

Edited by member 09 Feb 2019 at 11:03  | Reason: Not specified

User
Posted 09 Feb 2019 at 11:21

Bundle of laughs!? The fun time was waiting for the bone scan and CT results in view of the specialist nurse telling me that with a Gleason of 10 it may have been too late for surgery. I had the scans 3 weeks before seeing the consultant and never got a call to tell me they were clear. The first I knew about it was when he asked when I wanted to have the operation! 

User
Posted 10 Feb 2019 at 20:59

Chris,

I spoke to my GP and the urology nurse, their main concern is if I start seeing blood clots. At the moment its mainly blood in the urine and blood discharging from around the catheter. Not sure if this should be happening nearly 5 weeks after my urethrotomy. I was experiencing this even before my last urethrotomy, so I'm not sure where its originating? The catheter is scheduled to be removed on Thursday.

Mart

User
Posted 10 Feb 2019 at 21:52

Mart

I hope all goes well on Thursday and that the problem gets sorted.

Best wishes 

Pete 

User
Posted 10 Feb 2019 at 22:36

Matt

I did frequently get blood in my urine just after and sometimes the day after performing ISD, quite often I would get a few drops of very red blood either at the start of urination or at the end of urination.

I only had incisions into the scar tissue on about three occasions the last incision was about a year ago, the urethral catheter was removed after about two weeks but I was still passing blood six weeks later. The added complication of the SPC means I still pass blood etc now. 

On one occasion I did have a large amount of pure clotting blood coming out between the penis and catheter but that was four days after having my  urethra punctured during an attempted dilation.

Sounds like you have already taken advice from your team and you will be seeing them again on Thursday.

Once you get the catheter out it may all settle down, I did find my whole bladder and stricture situation improved when I was advised to do ISD less frequently.

Thanks Chris

User
Posted 19 Feb 2019 at 23:37

Chris,

Finally had my catheter removed last Thursday. The procedure went relatively well with just the expected side effects of the bladder not doing anything for 5 weeks i.e. running to the toilet every 30mins. Its settled down now though.

I've been told to do ISC twice a day for the next fortnight and then drop it down to once a day if there are no problems. Unfortunately, I'm still bleeding intermittingly, all clear on a number of occasions and then a bleed on another. Same scenario that I had before having the urethrotomy. I'm seeing my GP again tomorrow to see what the next steps are. Definitely have a lot better flow now though after the urethrotomy.

I have my PSA blood tests in a fortnight and then back to see the oncologist a week later for the results, I have my fingers crossed that its still <0.1 again!

Thanks for all the information.

Mart

 

 

User
Posted 20 Feb 2019 at 00:17
I think I read somewhere that ISC can raise the PSA a bit so don't panic if it is a little higher this time.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

 
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