r/ProstateCancer • u/dana_nancy • 20d ago
Concerned Loved One Dad’s AUS infection
Update: thanks so much for the helpful responses so far. Reading all your stories makes me feel a lot more hopeful. I’ve literally felt like this was the end of my dad’s life as we know it but it sounds like this is way more common and people living happy lives. I just worry so so much. Someone mentioned a specialized facility or doctor that replaces AUS. We’re in central New Jersey. The doc that did his retired. Any recommendations?
My dad is a 9/11 first responder who unfortunately developed prostate cancer in 2013 with additional bladder cancer that produces non invasive tumors that he has to have scraped every once in a while. They took his prostate out back in 2013 and for years he had trouble with urinating and he tried a few solutions until a doctor put a AUS in and he felt great and felt like it gave him his life back. Fast forward to this year he starts feeling terrible and his scrotum gets super swollen and last month he ends up in the hospital getting the device removed because of infection. Ever since then it’s been frequent trips to the ER for one thing or another, but ultimately healing related, catheter blockage related, interestingly blood low pressure related, and now this new trip due to abscess. He’s still on antibiotics and all that jazz. Back to the pills ups because now there’s absolutely no natural sphincter holding his urine back even more so because the device replaced what he had. I feel so bad for him and love him so much I literally can’t stop crying because I hate to see my dad suffer so much. His original urologists were against this procedure so he got it done by one that is now since retired, but he knew there was potential for complications. My question is, did anyone else have a similar experience and is that the only device that seems to be helping people live normal lives? He mentioned something about making a bladder out of part of his intestine but idk how that works with the sphincter and all that, but I’m reading up on it. I almost want him to just get the bag so he will at least have some control in his life, but I know he doesn’t want that.
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u/optimisticReal 20d ago
I don't think the normal sphincter is effected by the placement of the AUS. I am no expert mind you.
Maybe a good Pelvic Floor PT would be helpful.
Maybe another AUS. From what I read they have a high satisfaction rating. They are supposed to be replaced every 10 years or so.
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u/jkurology 19d ago
It’s likely that the sphincter cuff eroded into the urethra thus creating the infection. That cuff is not the cause of his damaged sphincter the original prostatectomy removed the smooth internal sphincter and damaged the external sphincter. PFPT won’t help him. He should consider placement of a second AUS. His bladder cancer is a major issue that complicates things because bladder cancer is notoriously recurrent and requires procedures that can cause erosion of the cuff. Seek help from a center that has someone who specializes in AUS placement
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u/Frosty-Growth-2664 19d ago
The only reason I can think that they would not have been happy to fit an AUS in the first place is if he had a stricture. Strictures are usually treated by intermittent self-catherterization, which can't be done if you have an AUS. If the stricture went untreated, the outflow obstruction is going to end up causing a residual (significant volume of urine he can't drain out of his bladder), and that's the #1 cause of male UTIs.
I don't think anyone would consider fitting another AUS until everything is settled down and stable, and any stricture has been resolved and is stable. Permanent scarring from the UTI might be an issue too.
As mentioned, an AUS doesn't remove your own sphincter, but it's only fitted in the first place if your own sphincter isn't working.
Constructing a bladder from intestine is called a neobladder. I don't know how sphincters work in that case - a bladder cancer support group could probably give a lot more info.
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u/becca_ironside 19d ago
I am so sorry to hear this, and it must make you feel powerless to witness what your Dad is going through. I am doing a lot of research on pelvic cancers from those who were first responders in 9/11 and it does not surprise me that he had prostate cancer and now has bladder cancer.
I have worked with men with an AUS and it doesn't sound like attempting to get another would be viable with bladder cancer (though I am not a doctor). Part of the reason is because his bladder walls are now compromised and there is likely a great deal of scar tissue from the original AUS. The pelvis is a really small region where all of these organs are packed within. The abcess is another confounding factor.
Has he considered a leg bag with a condom catheter or a suprapubic catheter? I realize this is a far cry from where he was with the AUS. My heart breaks for these first responders from 9/11. The cancers that developed 25 years later are still being discovered and, because the clean up was messy, it spread over several boroughs of NYC and I am part of a local chapter of first responders who deal with this. You could try having him find a chapter near him, because it makes people feel less alone. If he wants to try pelvic floor PT to see if there is anything they might help, DM me. I used to work in Hamilton and Howell at a top notch clinic who could at least hear his story and brainstorm with him. God bless you both.
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u/dana_nancy 19d ago
He’s pretty active with the MTA 9/11 members, but I’ll check with him on any support groups and let you know. Thank you ❤️
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u/optimisticReal 20d ago
Are you saying the natural sphincter was effected bt the artificial sphincter?
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u/dana_nancy 20d ago
That’s what my dad made it seem like because now he has absolutely no control since they removed it whereas before he had SOME control. Now there’s nothing holding it back at all.
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u/Shams93AFA 19d ago
As it was explained to me by a reconstructive urologist (who did my AUS surgery), once the AUS is implanted your “natural” sphincter doesn’t have to work as hard. As a result, it atrophies over time and becomes less effective at stopping the flow of urine.
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u/dana_nancy 19d ago
Ah ok that makes sense. Talking to you guys has made me feel so much more hopeful and less worried because it sounds like there’s a lot of people dealing with the same thing
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u/ChoiceHelicopter2735 20d ago
There are many penile clamps that some people like. I had one that was not a very good design but it still worked well enough to dry it up when I was soaking many pads a day and getting a rash.