Experience with longer term incontinence - Prostate Cancer N...

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Experience with longer term incontinence

I underwent RALP about 9 months ago and continue to suffer from overt (i.e., not stress or urge) incontinence. After surgery, my surgeon said that he did not see any reason why I would not regain full continence. I work diligently with a PT on pelvic floor and core exercises. Although there has been some progress, I am still at about 3 pads per day and my QOL is very bad. I had one urologist tell me I have probably plateaued and may want to start discussing surgery (sling, artificial sphincter) while another urologist said that I should continue to see progress for 1 or perhaps 2 years. At this point, no one is suggesting I will regain continence, although I realize they are just trying to set expectations. I would like to hear from others who have had longer term incontinence (ideally "overt") - did it continue to improve much after 9 months or so, did you end up having surgery, do you have any advice to offer?

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Some drugs can increase UI. This happened to me with xtandi. My research doctor says no, but the the timing was too coincidental. We shall when I go off xtandi.

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What you said about Xtandi causing incontinence is coincidental with my husband, too. He will probably soon quit Xtandi as well so will be curious to see if incontinence improves. If I recall he stopped Xtandi for a month or so but saw no improvement.

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I will probably stop xtandi sometime in the fall. This could be interesting. Keep in touch.

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I cannot reply based on experience, as I have regained my continence. I wish it were the same for you. That said, the two-year time frame seems to be pretty standard in the urologic surgical world. That is the time-frame they give for recovery of the nerve plexuses that were cut, bruised, burnt, stretched in the procedure. Yeah, it is a generality probably based more on guess than science. Might be time to think about an artificial sphincter.

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Thanks. I will probably give this at least another 4 months or so and see whether I can get to a condition I can live with - crossing my fingers that the overall healing process will continue to progress and provide some additional benefit. The thought of more surgery after what I've been through is rather depressing. Some folks I've spoken to believe that the artificial sphincter surgery is actually worse/more complex than the original prostate surgery.

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I hope you will keep the forum updated.

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The guys I've talked to who got an AUS love them.

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I have read good reviews and bad posted by guys that had an AUS 800 "installed". Sort of an out patient procedure for some but overnight for others. In the end it works for most.

In the meantime would a Texas catheter make your life a little more enjoyable? At least you would have the bag strapped to your leg to collect any leakage.

Currumpaw

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Thanks - that is consistent with what I've read and heard. One potential issue with AUS is that they can periodically need to be repaired or replaced (within 5 years for some folks) so similar to deciding PCa therapy, I have a lot to think through. Leakage not bad enough for a catheter.

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I have read that the "cuff" sometimes needs to repositioned. This one link that that has info--old but still relevant, however, the AUS must have been improved over the years as well as experience with it and "installing" it.

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Proximal artificial sphincter cuff repositioning for ...

ucdavis.pure.elsevier.com/e...

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A Texas catheter is sort of like a condom. It slips over the penis and is connected to a tube. My father in-law was "fitted" with one when he was in the hospital. It wouldn't be annoying or painful.

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Thanks - I will continue to some research while giving everything a bit more time to heal. Still hopeful I can get to a manageable state.

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According to the latest urologist we consulted, there can be complications with the such devices as one ages and has senility or dementia as you have to remember to empty them. Not doing so can cause lots of problems worse then wet pants. We had never had that explained before and is something to consider if you have dementia and/or at the mercy of someone to help you with toileting.

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Here's my 2 cents. I had radical PCa surgery 25 years ago at age 52. Had mild incontinence for several years after but as time went on it became worse to the point where I had basically no control. (possibly due to heart related medication) I visited my regular Urologist who only did the sling method which he said really only worked best on females. He recommended another Urologist in the Dept who did the Artificial urinary Sphincter (AUS) procedure. I went to see him and he said I was a good candidate for the AUS, so I had it installed about 6 years ago. It has worked great! No more pads and no more worrying about accidents. It basically works like a hose clamp around your urethra which is inserted just above the penis and is operated by a small on-off button which was inserted in my scrotum. When the normal urge to pee comes, I simply reach down, squeeze the button and it opens the urethra clamp allowing the bladder to empty, and automatically shuts the clamp after about a minute or so. The surgery is minor, and after about 2 weeks of healing, the on-off button is activated and you go on living with dry pants! I noticed one comment here mentioned possible future issues with AUS, but the urologist told me everything that could possible go wrong can easily be fixed. I would HIGHLY RECOMMEND this procedure, BUT DON'T WAIT as scar tissue can develop in the urethra from future catheter use or radiation. Also a Medical bracelet or necklace is needed to be worn in case of an Emergency Room insertion of a catheter as the on-off button needs to be deactivated which is a simple procedure known by all ER personnel. Again, I HIGHLY RECOMMEND THIS PROCEDURE. Good Luck.

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Thanks for sharing the experience. At present, I will continue to monitor and hopefully improve my incontinence until my next scheduled urology visit (including PSA) which occurs roughly 1 year after the surgery. The MDs I've spoke to have recommended giving it one year before considering any surgery. In the meantime, I will continue to get feedback from men like you and do my homework so that I can have a productive discussion with MD should I need to consider other options.

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Hi

I had sling fitted 2 years after RP. I wanted sling as it's less intrusive than AUS and non mechanical and I want to stay active and go cycling etc.

It's good but not great ... The flow is greatly reduced when going and emptying fully can be tricky. Also at times feel I need to go more often as I think it causes some minor irritation. I now use no pads but leak a small amount about once a week.

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Great feedback - thanks for sharing. I am in a similar situation - extremely active (running, cycling, weightlifting, etc.), not really wanting anything mechanical, and hopefully a simpler surgery. I expect to continue making some progress and will wait a bit longer before making a decision. If you get a chance, let me know what the surgery and recovery were like.

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Surgery and recovery fine ... much less that robotic RP but still 1night in hospital .. I did need catheter on discharge as could not wee ... But apparently that is fairly normal and increases chance of long term success

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COSTCO, Depends purchased by the case for best price. Order on-line (no delivery charge) and delivered in two days in a plain brown (not labeled) carton.

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 07/19/2019 11:23 AM DST

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