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Posted 6/13/2015 10:03 PM (GMT 0)
Hi everyone. Have not posted in ages but have always lurked. It's been a long road for me since my failed surgery. (See my profile) Given only a 22 percent chance of success I went with IGRT. Well, so far, so good. I am back to normal on all fronts except continence which became worse after radiation as time went on. 3 pads of Tena moderates a day. Of course, if I drink beer or wine it gets worse. Uro says I should maybe live with it since an AUS most likely will erode the urethra. (Really? That's all you got?)

Anyway, I have two questions for anyone that can help:

1. Has anyone's continence improved over the years?

2. Does anyone know a URO who specializes in post radiation incontinence in Northern Illinois or nearby?

This forum has helped immensely over the years. It lifted me out of a great depression. God bless all my brothers at arms who have marched through this journey with me.
Posted 6/13/2015 10:08 PM (GMT 0)
PaxNova,

As I cant speSk for any Urologist in N. IL, I can say to get Snother opinion...I just had my AUS installed yesterday and everything went fine, can't wait fir the six weeks to pass to have it activated. I am just over 19 months from my RALP surgery, and under went SRT IN OCT to DEC...AM NOW Cancer free and on the road to dryness...you CSM be too, all the best.
Posted 6/14/2015 12:59 AM (GMT 0)
With radiation, either primary or salvage, the side-effects can take years to develop and there is not much that can be done. Depending on the equipment used and the skill of your R.O. a lot of healthy tissue was damaged in the process of killing the cancer. As time goes on, the results of this damaged tissue become more and more evident...Urinary and bowel problems are all part of the package..
Posted 6/14/2015 1:39 AM (GMT 0)
Generally with radiation as primary therapy, the worst effects happen soon after and get better over time - even late term side effects typically do not occur after a couple of years and are transient. Salvage radiation is a different story - the surgical damage sometimes may never heal, or the healing may be reversed by the radiation. Stents, slings and AUS are all possibilities. Someone the other day mentioned injection of a bulking agent into the urethra. Sorry - I don't know who the experts are in Northern IL.

- Allen
Posted 6/14/2015 8:41 AM (GMT 0)
I have had a similar passage.

After surgery which showed positive margins, I went through adjuvant RT. Before RT began, I was almost dry, but 2 months after RT finished I became incontinent again and it got steadily worse, going through 5 or 6 pads per day. I also had strictures and following several cystoscopies to address the strictures, I suddenly became totally retentive.

I now have a suprapubic catheter which allows me to live a virtually normal life. Not happy about it, but better than being incontinent.

RT is a real crapshoot, you just don't know what will happen, but hey, for now I am cancer free!

Best of luck

Chas
Posted 6/14/2015 10:50 PM (GMT 0)
Thanks all for your input. Yeah, RT continues to give it blessing years after.
Posted 6/14/2015 11:04 PM (GMT 0)
i'm almost five years past BT and IGRT -- PRIMARY treatments. I never have been incontinent one day and can have normal sex with cialis. my radiation SEs have definitely gotten better with time, not worse.

ed
Posted 6/14/2015 11:46 PM (GMT 0)
Today is the three year anniversary of my robotic RP which puts me 2 1/2 years out from the end of my adjuvant radiation. Between the more-than-expected cancer which required my surgeon to cut close to the urinary sphincter and the radiation damage which never helps with such things it was fairly apparent that I was never going to regain continence and I had an AUS installed three months ago.

Radiation makes the tissues relatively stiff and things just don't work as well. I have to admit to being a bit disappointed with my AUS. I still leak 30 to 50 milliliters a day on good days and on days where I am active and don't always have immediate access to restroom facilities I leak twice that much. That's the bad news.

The good news is that high absorbancy pads (which I can wear inside my tighty-whities) will hold enough for any day I have had since the AUS was activated. I change my pad exactly as often as I change my undies and I never worry about having an extra pad with me during the day, nor do I worry about leaks. I am currently in NYC on business and I walk all over the danm place -- the other night I walked across the Brooklyn Bridge to get a cup of coffee on the other side -- and I don't worry about my incontinence at all.

The surgery isn't bad nor is the recovery. It's not the panacea I was hoping for but it is worth doing. Or at least it has been for me.
Posted 6/15/2015 10:41 AM (GMT 0)
Peter, you get a week out of a pad! lol

Cheers, Doug
Posted 6/15/2015 6:39 PM (GMT 0)
Is it possible to make adjustments in the AUS?
Posted 6/15/2015 6:46 PM (GMT 0)
Tall Allen,

Yes they can go back in and change the size of the cuff or even add two cuffs to help further stop the flow. But there is no adjustments that can be made from the outside.
Posted 6/15/2015 8:46 PM (GMT 0)
My wife yells at me when I adjust in public. But it's just the usual male tugging and doesn't have much to do with the AUS.

As far as I know, Paul is right and there isn't much that can be adjusted without going back in and replacing or repositioning parts. The most frequent adjustment is revision to a smaller cuff but, confusingly, this is often needed because of urethral erosion which seems to be caused (or at least worsened) by the initial cuff being too tight... so go figure.
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