Was asked to repost this in this forum...I have USI (urinary stress incontinence) from my RP (Radical Prost) plus sRT (salvage radiation treatment)...leak about 25-50 gr per day...just enough to piss me off but my Dr says not enough to risk the 25% chance I have as a post-sRT patient of developing urethan erosion...if I damage that passage way then I am permanently incontinent, i.e., flowing urine! So I was not happy with the results of this study...let me know if have a different view...
...then I found this study (180529) which helps explain WHY I have incontinence after sRT...you always have to check the primary end point definitions of each study. Most classify "continence" as using 'no pads OR 1 safety pad.' In my book that is not continence. In this study they used the correct GRADE 1 classification of "No Pad Indicated," and it shows that only 67% of patients went into sRT 'dry,' meaning GRADE 1! sRT increased odds of coming out with incontinency by 17% after 90 days...that was my case...so forewarned is forearmed...
...now looking at ProACT as a possible solution if the AUS is too risky for me...but as a sRT (radiation treatment) patient I may have no choice but to "live with it," as my Urologist so eloquently stated...yeah, right...TNX
PS as a consolation prize at last sRT significantly bumps up 5-year bPFS, OS, DSS and DMFS rates; check it out...TNX2
180529 ART Salvage radiotherapy after radical prostatectomy: Long-term results of urinary incontinence, toxicity and treatment outcomes
Purpose: For patients with local recurrent disease after radical prostatectomy (35–54%) salvage radiotherapy (SRT) is the treatment of choice.
Materials and methods: Patients with biochemically recurrent prostate cancer after radical prostatectomy, who were treated with SRT (3D-CRT) at our institution between 1998 and 2012, were included in this retrospective cohort analysis. Primary endpoint was urinary incontinence rate.
Results: 244 patients were included. Median follow-up after SRT was 50 months (range: 4–187 months).
Before start of SRT 69.7% of patients were continent for urine.
After SRT de novo urinary incontinence complaints (grade ≥ 1 - Spontaneous flow; Pads indicated) occurred in the respective acute ( 90 days) in 6.1% and 17.6% of patients.
The respective 5-year bPFS, OS, DSS and DMFS rates were
Correct! So imagine how much better the survivability numbers are with IMRT, which is what I received...good point...for incontinence that as well should improve...TNX
To your initial post. After RP I was 100% incontinent unless prone. No amount of Kegels and Pilates core work helped. If I stood up, then I would fill my shoes.
So I started with a condom/ leg bag and moved onto urethral clamps and then to a AUS.
I have had an AUS for over six years, bike a lot, hike steep ascents and heli ski. Just was skiing here in NZ. When home I do a 45minute Pilates Reformer workout class every morning in compression tights with no pad.
The AUS seems slower to close now, so patience is warranted post urination, but otherwise, and after six years, it remains 100% safe. (I was told to expect a revision at this point due to erosion, but so far, so good). I have flown ten long haul flights this year of up to 16 hours each without any anxiety.
Downsides. If I jump on a standard bike seat then I dump my bladder as it distorts the AUS seal, so I use a split saddle that doesn't pressure the perineal area.
Also, you want a specialist who has done many AUS installs, infection risk is non trivial and experience counts. My Uro sent me to another for this procedure.
...thanks...my leakage is not bad (25 gr on an average day)...so my Dr told me the AUS was not for me...but your loss was very large and it took you to zero pads...so this gives me some information...
I am also looking at the ProACT double balloon implant...dont know if anyone has used that device. Its newer...
Am going to get an implant in Dec22 and am wondering as well if anyone out there has had success in reducing SUI or leakage after the implant has been placed...saw a YouTube where it said a man should walk around "with a little change in his pocket,' to help prevent leakage...
So anyone that has had experience with the AUS, the ProACT or Penile Implants to control incontinence please advise...
PS RS265...how long after your surgery did you wait to get the AUS? Also, did the Dr tell you you would be 'dry - no pads' or did they hedge and tell you there could be some leakage...wondering about these two points...TNX
Decision at 6 months, enough to know that it could not be remediated through core muscle control and was likely surgical distortion. After thought to my earlier post is that I may have double cuffs installed. And no, my specialist Uro didn't hedge his bets. Dry it was.
No. With my implant leakage has been cut in half. Also as TET returns post ADT my urethra engorged n also is able to slow leakage. I wii wait one more year to see where I am. Right now leakage is down to 15 gr a day; not bad. But not dry. Rick.
…sorry that’s confusing. I got an inflatable penile implant (IPP). I did not get an Implant for Incontinence. My surgeon wanted me to wait and see if the IPP would help and it has. Like I said it’s probably knocked it down by at least 50%. That is because the urethra runs between the two cylinders. And there is some constriction there, which helps. Also, as I mentioned, as my testosterone increases the urethra thickens . Both of these have helped cut it down to 10 to 15 g total. Still not dry but almost.
I got an AUS implant last November, and I am so happy I did. By the time I did it I was going through 5+ pads a day, so totally worth it.
I have been incontinent since my RP in 2010(age 44), made worse by salvage radiation. It got worse over time so I looked into getting an AUS but the first urologist I saw told me I was not a candidate due to radiation. I researched it more and decided I might still be able to get the implant and met with a couple of urologists, both who agreed.
I was told I would still have stress leakage, and being an elementary school music teacher, of course I still have to wear a pad. Another plus: My cancer has invaded my bladder, resulting in my passing lots of blood.
...thanks...that is what I hear and read; NOPE you had radiation and you are not a candidate...but I too think it depends...I can sit all day and not leak at all...which to me is a form of 'sling' that I create by sitting and bending the pelvic area at 90 degrees...so why could a Sling not work for me? NOPE the Dr's tell me; you had RT...so will do more research and see if either a sling or AUS can work for me...I have low levels of leakage compared to you but as you well know a little bit of constant urine in your pants may well be a 1/2 liter...it still affects how you work, what you drink, what you wear, ect..glad your treatment went well....I can only imagine how happy you are...TNX
The question was, does a AUS provide dry, zero pad results and if the patient has had RT does that make any difference...
I read and am told by my Dr that the AUS is not for complete dryness...its to take men form diapers to pads, not pads to dryness...is that true?
Then, does the fact that you have had RT make any difference in getting dry...does that affect how an AUS or Sling or ProACT device works...can RT patients have a chance at being dry, zero pad-dry?
In my case the AMS800 I have installed allows me to be dry and go pad free. As it is an internal clamp on the urethra I cannot see how previous RT would be a significant concern. However, and to your concerns, erosion is a potential factor which I expected due to mountain biking– but this was of no consequence then as I had little expectation of being alive four years later.
Here is an excellent deep dive on the AMS800 and issues if you are interested:
The other two devices you mention are intended to solve incontinence via physical support/repositioning. The ProAct site indicates that RT in the last six months is contra-indicated, likely as it takes time for the RT damage to resolve into a stable state. I suspect a sling would have the same issue.
So here is my six year retrospective. If I knew now what I didn’t then, I would have stayed with a penile clamp. It kept me dry and to relieve myself I only needed to pull the penis out. It was “bulky” but easier compared to getting the entire scrotum out of the pants to access the AMS pump.
If I was in your position, I would firstly consider just trying a penile clamp. You will be dry. No question. Then, seriously consider the ProAct as it is minimally invasive to install, does not require a general anesthesia which is a risk of itself, and it does not preclude latter use of an AMS800 if the ProAct doesn’t do the job. (I rejected slings as too unreliable, if the ProAct had been on offer I would have given it a run.)
I will emphasize that any surgical solution should be by someone who has tens or more of these in their resume as experience and infection risk are significant concerns.
Ultimately, there is no totally reliable answer to your dilemma. A Weisner clamp may bring you happiness. 😀
...good advise...I spoke to my Dr just last night about my implant surgery...he said that I should first try the implant as with my level of leakage it could act as a pinch point for the uretha...in fact I can keep it slightly inflated and have a try at that. He thinks it will work. If it does not then he said I could always come back and have an implant... I heard one urologist suggest that the implant be pumped up just a bit and left that way for low level continence issues...she said that a man can "walk around with a little change in his pants." Colorful description...I am gonna give that a try!
Good feedback on the mechanics of evacuating with the AUS...I too think that the ProACT has advantages and it can be adjusted to higher pressures to find the right amount of pinch to help you stay dry.
Your larger point is to count our blessings and try to understand that any treatment has 2 steps forward and one step back...your still ahead but not by two steps...so I will keep an eye out for sure....
I am looking at the Titan but will review the AMS for sure...have not decided yet....TNX
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Satisfaction with AUS after Radiation
Seeking Input on Salvage Radiation Therapy
