Siginificant increase in incontinence following radiation treatment in prostate bed

[TimmyOrlow0111]

I am 67 years old and 2 years post prostatectomy. I suffered with awful incontinence for 6 months but got better and better over time, eventually I was about 98%-99% dry. I was incredibly pleased to say the least.

In July 2024 my PSA went up to .3 from .2 and it was decided that radiation treatment of my prostate bed and surrounding lymph nodes along with 6 months of hormone therapy with Lupron, two three month injections was the course of action. I was scheduled for 39 radiation treatments, 5 days a week. I did suffer with some immediate side effects from the radiation treatments but all were fairly common.

No issues with incontinence at all. About 2 weeks after the conclusion of the radiation treatments I did start having incontinence issues, issues that I had not experienced in almost 2 years. Stress and urge incontinence were increased, I actually had 2 accidents at bed at night which I had never experienced before, even right after surgery.

I am very active and walk 5 miles day and play lots of golf , prior to radiation I was wearing a light pad during walks and was virtually dry. Over the last several weeks my incontinence during walks has increased significantly and the light pad is getting nearly full. I have inquired with my urologist and he is hoping that this is temporary.

I am curious if anyone here has had a similar experience and would be happy to share their thoughts, comments or end results. Is this indeed temporary?

Thanks in advance,
Tim

 

[kruznkru]

I sorry what your going thru
I am not where you’re at now but I’m 3 1/2 post RP and still leaking pretty bad.
Using an CC and checking I’m leaking 12 oz in a 9 hour day and really no improvement. Doing kegals and PT
Yesterday I saw incontinence specialist who said I’m still to early to have any surgery. I hate to ask cuz you’re going thru tough times but does this kinda sound like what you experienced ?
TY

 

[TimmyOrlow0111]

I sorry what your going thru
I am not where you’re at now but I’m 3 1/2 post RP and still leaking pretty bad.
Using an CC and checking I’m leaking 12 oz in a 9 hour day and really no improvement. Doing kegals and PT
Yesterday I saw incontinence specialist who said I’m still to early to have any surgery. I hate to ask cuz you’re going thru tough times but does this kinda sound like what you experienced ?
TY

I know how frustrating this entire result is and it's tough to take at times. I was almost completely dry 2 years post RP. My incontinence started to increase following 39 radiation treatments along with hormone therapy after PSA levels increased to 0.3. I was curious if anyone had experienced and similar scenario and if what I was experiencing was temporary or my new normal. Good luck with yours, I hope that you see improvement sooner rather than later. Just a note, I was diligent with my kegels and still am to this day, I got PT for pelvic floor exercises to make certain that I was doing them properly, that helped immensely.

 

[kruznkru]

Yes I am doing kegals and PT - PT once a week and if I can fit it in twice a week.
My PSA less than <0.03 last week / I’m 70
Have you thought about AUS surgery for incontinence ?

 

[TimmyOrlow0111]

Yes I am doing kegals and PT - PT once a week and if I can fit it in twice a week.
My PSA less than <0.03 last week / I’m 70
Have you thought about AUS surgery for incontinence ?

Yup, I do, I'd consider any viable solution but I really don't think that I am there yet. I'm not certain that my volume would dictate surgery. I have done a ton of "investigating" and have heard mixed reviews on sling surgeries but the feedback that I hear from AUS recipients is that the procedure is absolutely life changing for them. I am honestly hoping that by recent increase is just temporary. As a matter of fact I am meeting with Docs tomorrow to discuss treatment options and results/side effects. I'll report back.

 

[kruznkru]

All the best !
Yes nobody wants surgery but if it gives a better
quality of life thats pretty much the best option
I’ve heard slings are 50/50
My specialist does “adjustable” slings which I believes falls between an AUS and sling
Also he mentioned REVI therapy ?
Google it

 

[Bobsyeruncle]

Sorry for your situation. I have a similar history (6 months Eligard, 33 radiation zaps), except the time between my prostatectomy and salvage treatment was about a year.

After my surgery I had an overactive bladder (although I regained my continence). The radiation didn't seem to make things any worse., although a few months after the radiation I started to wet the bed - not a complete release, but there was some pretty good leakage happening before I woke up to go to the bathroom.

I started doing my Kegels again (just 10 x repeated, once a day), and the nocturnal leakage disappeared after a couple of months. Although it has been 2 months since my last occurrence I'm not convinced it won't return. I also started to take 50 mg daily Myrbetriq (Mirabegron) for my overactive bladder - which has helped with urgency.

I don't think the drug is the reason why my nighttime leaking stopped, (it stopped before I started taking the drug). Perhaps it was restarting Kegels or it was a temporary issue while my body sorted itself out. On the other hand, I am still having bowel issues 9 months later.

 

[TimmyOrlow0111]

Sorry for your situation. I have a similar history (6 months Eligard, 33 radiation zaps), except the time between my prostatectomy and salvage treatment was about a year.

After my surgery I had an overactive bladder (although I regained my continence). The radiation didn't seem to make things any worse., although a few months after the radiation I started to wet the bed - not a complete release, but there was some pretty good leakage happening before I woke up to go to the bathroom.

I started doing my Kegels again (just 10 x repeated, once a day), and the nocturnal leakage disappeared after a couple of months. Although it has been 2 months since my last occurrence I'm not convinced it won't return. I also started to take 50 mg daily Myrbetriq (Mirabegron) for my overactive bladder - which has helped with urgency.

I don't think the drug is the reason why my nighttime leaking stopped, (it stopped before I started taking the drug). Perhaps it was restarting Kegels or it was a temporary issue while my body sorted itself out. On the other hand, I am still having bowel issues 9 months later.

This is all so upsetting to our systems, systems that had worked flawlessly without any consideration for basically forever. I have stopped taking the Oxybutynin, which was prescribed for my bladder issues related to the radiation treatments and which absolutely was beneficial. I halted the use because along with desensitizing my bladder I thought that it might be affecting other related neighboring tissues and it seems to have had a positive effect on my recent rise in incontinence and my newly arrived bed wetting circumstances. Both issues are indeed subsiding which is a relief. I have been doing my Kegels religiously twice daily since surgery over 2 years ago and I can testify to the benefits, I'll be doing them forever without fail.
Sorry to hear about your bowel issues, mine were a mess during radiation treatments but all have returned to pretty much normal now 6 weeks out from those treatments. Good luck with all, celebrate your small successes and stay positive!!! I know that it can be difficult at times.