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Side effects of salvage radiotherapy?

User
Posted 29 Jun 2017 at 14:15

Well-intending surgeon is discouraging me from salvage radiotherapy (SRT) because of my history of post-prostatectomy stricture and the likelihood of creating more urinary tract problems as a side effect of SRT.  My understanding is that the stricture, which took several dilations to resolve, was where urethra was re-connected after the op, aka the anastomosis.

I don't want to need a long-term catheter after SRT if it can be avoided.  

Does anyone have experience of post surgery stricture and resultant complications from SRT that may help me understand what could be involved, please?

Many thanks

User
Posted 29 Jun 2017 at 17:02

Celt

Welcome to the forum, sounds like we have gone through a very similar journey. I have had numerous dilatations about ten I think. Three years post op my PSA had slowly risen to 0.27 and I was advised to have  SRT. Just prior to RT I was performing progressive self-dilatation three times a day with size 14 to 18 catheters and my flow had improved immensely.

I was offered bladder removal and stoma as a solution to a "possible" urethral closure and told that surgery to an irradiated urethra would be "challenging". I declined the bladder removal and my consultant recommended I see one of his colleagues for a second opinion. This proved quite useful and he recommended that I have a super pubic catheter inserted as insurance against urethral blockage, followed by urethral reconstruction subject to a favourable PSA result. 

I still carry out self-dilatation twice a day using 14 and 16 catheters and do manage on occasions to pass no more than 100 ml of urine through the penis, bladder spasms are quite frequent and quite uncomfortable.

My next PSA test is 8 weeks and I need to wait until the end of August before knowing what routes are open to me. Providing the PSA level has dropped and if I do not regain my normal urination I will then see a consultant in London with a view to carrying out urethral reconstruction. I was advised that this particularly professor is probably the only one in the country that can carry out the surgery and was also recommended by three private consultants in my area. The procedure involves taking skin from the inside of the mouth and grafting it into the urethra. If that is a success but compromises my continence I may also be offered an AUS.

I am now one month on from completion 33 sessions of RT. I can still pass size 14 and 16 catheters but do not seem to release much urine. The consultant seems to think that the bladder has shrunk, I have a flip flow valve on the catheter and do try to keep it shut in order to keep the bladder operating as it should. The Catheter is giving me some problems and I think it is affecting how much and how often I currently pass urine through the penis.

To summarize the jury is still out.

It is always useful to give a history of your journey in your profile, how long since op which sort of op, PSA on DX , current PSA, Gleason etc ? What treatment is being offered if SRT is not going to happen ?

 Have a read of my profile for more details, click on name or avatar to bring up profile menu.

 

Thanks Chris

User
Posted 30 Jun 2017 at 09:04

Many thanks Chris. I'm afraid I can't match your helpful detail but I'll try to reconstruct.

This is my second attempt at posting a reply. I got to the end last time and the page froze when I tried to post, maybe because it timed out, so I'm going to give a shorter version.

My history is PSA of 4.0 in 2011 led to very suspicious digital exam and then I was told "95% no cancer" on the basis of negative biopsy. More opportunities lost, mainly due to my ignorance, until new GP spotted PSA of 7.4 in summer of 2015. MRI this time then biopsy showed T3a and GL 4+3. Robotic surgery with no seminal vesicle invasion but very narrow negative margins. PSA 0.1 about 2 months later.

Post-op issues began with v painful catheter removal about a week to ten days after op. Trial without catheter (TWOC) in hospital went ok but then a few days of painful, straining urination until caring and accessible (NHS) surgeon called me back in for first dilatation. I'll abbreviate to D! More catheter for 10-14 days, then further successful TWOC, but a day later I had acute retention, luckily in daytime, and when thankfully accessible surgeon was not tied up. Supra-pubic inserted, then another D followed by two weeks conventional catheter. No more crises but more Ds, last of them near end of last year. Meanwhile PSA rising past optimal for SRT but uncertainty over stricture put that on hold.

In April, flow OK, certainly something I can live with. PSA 0.9. Not optimal for SRT but PSMA scan (Heidelberg - more recently available on NHS) shows no spread, so radiation oncologists think still in prostate bed with chance of cure or prospect of slowing progression, and good chance of local control. I'm just trying to be ready for the worst but hoping for the best.

Meanwhile, best wishes with your journey

Best regards
Celt

User
Posted 30 Jun 2017 at 15:26

Celt

I have lost a few long posts, solutions, if sat in front of a PC or laptop select and copy the text before hitting the post button, if the session hangs open word or note pad and paste text into that, then restart the Prostate cancer web site and paste into reply. If using a android phone type the message into an email app then copy the text and paste into the reply page.

Although my post op catheter removal was not painful it did get stuck and was removed with a swift tug, my consultant is convinced that was the start of my problems. I did ask a similar question to yours prior to my RT, there are only a few on here who have the same issues.  http://community.prostatecanceruk.org/posts/t12437-Stricture-surgey-after-RT#post154815  Brian declined surgery for his stricture and then had RT without affecting him too much. Flexi also was on the same route but not sure what stage he is at.

I did trawl through loads of trials and alternatives in an attempt to avoid RT damage to the stricture, but found nothing.

Thanks Chris

 

 

User
Posted 03 Jul 2017 at 01:03
Thanks Chris

I'll follow your advice on my next narratives, though I'm hoping they won't extend into a saga.

I guess in years/decades to come, they'll be looking back at current prostatic RT as a primitive medical tool but in the meantime it's the best we've got. I'm going ahead though I can't say I'm at ease about its downsides

My ever-helpful surgeon has pointed out the possibility of urethral reconstruction in a worst case scenario, but it's a sub-speciality, as you indicate, even within the field. I'm planning to follow up to find out more - just in case - and hopefully to get some assurance.

Best regards

Celt

 
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