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Problems Peeing after RT? - radiotherapy,bladder control

User
Posted 23 Feb 2018 at 22:41

Hi All,

I'm still weighing up the pros and cons of RT v surgery. I think I would prefer RT but I'm concerned about one of the possible side effects which is listed as difficulty urinating. 14 years ago a had a TURP procedure as I had trouble peeing at all when I had a full bladder. I remember the surgeon saying at the time that we'd probably need to do this again in 10 years time. Well I haven't needed to as yet but I would say that my flow rate is on the low side. So I'd like to hear from those of you who have had RT and if you have experienced any issues in this area? Has anyone literally not been able to pee at all? (which is what I'm afraid of). And if it occurs what can be done to get round this problem? Is the problem just temporary or long term?

Thanks

John

User
Posted 23 Feb 2018 at 23:41
John

I developed a stricture after surgery. Three years later I was heading for salvage RT. The concern was the RT would close the urethra so I had a suprapubic Catheter fitted as insurance. I did have problems with my water works ranging from retention to urge incontinence. It is almost a year since the SPC was fitted and I am hoping to part company with it in the next few weeks.

As it turns out my urethra has if anything improved but my bladder capacity has shrunk. Last PSA was down to 0.04.

Best wishes for your treatment.

Thanks Chris

User
Posted 24 Feb 2018 at 00:29

Chris,

Thanks for your reply. I'm hoping that my low flow rate would point me in one direction or the other but obviously you can have problems after surgery just as you can with RT. Can I ask how bad your flow was after you got the stricture to warrant the SPC? Were you still able to pee normally after the SPC was fitted (is that possible?) or did you get a complete blockage after the RT?

John

Edited by member 24 Feb 2018 at 00:32  | Reason: Not specified

User
Posted 24 Feb 2018 at 08:55
John

My flow rate stated to slow a couple of months after surgery and I had about 13 procedures in three years 9 of which were dilatations. At worst the flow was down to 0.5 mls per second but I would have to perform self dilatation. Generally I was back into theatre before it got down to 5 mls per second sometimes I did get down to about 3 mls per second.

Prior to RT my flow was probably between 5 and 10 mls per second so the flow rate was not an issue but the consultant's concern was that RT would affect the scar tissue and close the urethra. His first option was bladder removal, no thanks.

I did have one occasion where I was in full retention but that was following a dilatation and I had a urethral Catheter fitted in s treatment room no anesthetic, it was uncomfortable but bearable.

The SPC fitted pre RT had a flip flow valve fitted between the catheter and the bag in an attempt to keep the bladder working normally, so yes I could urinate through the penis with the SPC in. The RT did cause my urgency to get worse so having the valve and bag did mean I could just open the tap instead of leaking.My flow rate has increased since the RT and is between about 6 and 14 mls per second.

Mine is a bit of a horror story and probably not the norm.

Thanks Chris

User
Posted 24 Feb 2018 at 09:40
John

Just to add when my stricture started I had some correspondence with another member. His flow rate was 5 mls per sec.

One of his replies was.

" My fear when I had RT was that the stricture would be compromised. Fortunately it wasn't."

Thanks Chris

User
Posted 24 Feb 2018 at 23:32

During RT my need to pee increased to up to 8 times a night at one point then gradually reduced until it reached the pretreatment level by a couple of months after the RT had finished. During the day, I had plotted on a map all the toilets between the place where I stayed and the hospital, so I was never caught short. A Conveen bag system proved to be the answer for long journeys.

Barry
User
Posted 01 Mar 2018 at 19:12

Hi John
I had operation for removal of stricture 6 months before going on RT. This was due to not finding my cancer and thinking I had bladder problem - which I didn't. ( go figure) Was worried about reduction of flow with RT like you.
Have just finished 7 weeks of RT last week, Only effect is needing to pee more often - every 3/4 hours and once/twice during night. Not too bad. I had / have a nasty case of radiation cystitis which is not pleasant and it started after just 1 week (which never happens so quickly?) I have been told that things will be better in a few weeks, hope it is so.
My flow has not changed just frequency which is taken as read, and I hope this will improve as I have been told.
This is just me no idea if this is usual.
Hope this helps
Phil

User
Posted 01 Mar 2018 at 21:25
Phil / John

A few weeks after completing RT in may 2017 I was passing all sorts of blood, clots and debris, I was told it would clear up in a few weeks. Yesterday I was told the radiation damage to the bladder was irreversible and I needed to accept the bladder would have to go or I would need a SPC for the rest of my life.

Thanks Chris

User
Posted 02 Mar 2018 at 15:13

I had 20 sessions of VMAT prostate radiotherapy in Edinburgh last summer. This is a "hypofractionated" protocol. There was an increase in frequency of peeing during and for a week or two after the RT, and also some hesitancy that usually cleared up if I waited a few minutes. So, nothing really to worry about.

Good luck with everything!

 
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