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Can anyone share their experience with ProACT (an AUS)?
Prostate Cancer | Last Active: Mar 10 7:59pm | Replies (64)Comment receiving replies
@fkm
Just be aware that if there’s any chance you need radiation after your prostatectomy that the ProACT will not work. A urologist who specialize in incontinence gave a talk, maybe six months ago about ProACT and other devices. When it first came out, he gave it to a bunch of patients With incontinence issues. He found out within a short time that it doesn’t work with those that had radiation because the radiation hardens the urethra and that prevents the proact from working.
I had to have radiation 3 1/2 years after my prostatectomy because my PSA started rising. It actually is a pretty common problem. How long has it been since your Prostatectomy?
The AUS and catheterization are a problem. In fact, they warn people that they have to tell emergency rooms about the AUS if there’s any chance that they are going into one because you can’t just put a catheter in with that thing in the way. I’m not sure exactly what they have to do, but they may have to electronically shut down the device so that it’s wide open. When you first get an AUS you go about six weeks before it actually works, Then the doctor turns it on and I’m pretty sure they do that using a device that signals it to start blocking the urine flow.
Replies to "@fkm Just be aware that if there’s any chance you need radiation after your prostatectomy that..."
@jeffmarc Hello and thanks to you and everyone else who have contributed to this discussion about ProACT.
I wanted to share my story, in hope for receiving additional insights on my particular situation.
Following a radical prostatectomy in 2023, my PSA was undetectable for 1 year. But cancer recurrence required 6 weeks of radiation and hormone therapy. My incontinence following both procedures was mild to moderate. Using 1-2 regular pads/day. I researched all stress urinary incontinence options and landed on ProACT.
Procedure completed in January, 2025 and 7 adjustments made to date. However, I was still leaking (1-2 ounces per day). My goal was to just have drips. Maybe — completely dry.
However, my leakage worsened — having to change my thin Depend liner twice in a day, leaking more than 2 ounces. I was bummed. My surgeon (Dr Flynn - UCHealth) deflated both balloons and ordered an MRI. Results showed one of the balloons was not positioned correctly. He suggested revision surgery.
I was aware of the potential for device failure because of my radiation therapy. I’m now in a weird position — and would value any input. Should I proceed with revision surgery? Thank you all — I appreciate your thoughts. TL3
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@jeffmarc @jeffmarc I am told that my PC was caught very early. My PSA had been inching up from 4.4 to 5.37 over 3 years when an MRI was done which suggested a biopsy. 14 cores taken 6 (3+3) 1 (3+4). I had RALP four days before my 65th birthday. Surgeon (and biopsy) said everything was well contained within removed prostate. Six month and nine month PSA < .1 considered undetectable. Due to a spinal cord injury, I had to do clean intermittent catheterization for almost 16 years, no leaking, but after the prostatectomy I had precisely the opposite problem. I went from not being able to pee without catheterization to not being able to retain a single drop of pee. I can't wait 3 1/2 years with complete incontinence to see if I need radiation so I found a urologist that focuses on incontinence and due to my neurogenic bladder which required intermittent catheterization previously from the spinal cord injury, his goal was to get me back to that point where I could resume clean intermittent catheterization. His first recommendation was to implant a urethral sling. The sling has made a world of difference yet I still use three heavy pads, a day and light pads in morning and overnight and I am back to clean intermittent catheterization. But still, I am seeking improvement because I am an active person.
I am trying to avoid the AUS and trying to achieve my goals in the most minimally invasive way I can, but I'll do it if I have to. I brought up the ProAct device after scouring support groups for any ideas. I sent a message via the Uromedica website to ask them if the ProAct device was compatible with intermittent catheterization. To my surprise, not only did I get a quick response but it came in the form of a phone call from the CEO and cofounder of the company. We talked for half an hour about my specific situation and the prospect of using ProAct as an adjunct therapy with the sling.
My urologist/surgeon is trained in the implantation of the ProAct device (his name was also listed on the Uromedica website as a provider). At the first follow up for sling procedure I brought up ProAct and he was very positive but advised me that even though it is covered by Medicare, it is not covered by private insurance since it is still considered it "experimental or investigative" --and I am using private insurance. Now, I am 65 so Medicare is an option but it would mean making some changes which I didn't rule out. But my doc said he would have his staff query my private insurance about whether they would cover procedure. As is turns out, I have a BCBS 0f Illinois plan and BCBS of Michigan had been sued over non-coverage of ProAct by a fellow that is active on this forum (@garyretiredstatecop) and had lost requiring BCBS of Michigan to cover it. Turns out my BCBS plan now also covers it, many thanks to @garyretiredstatecop on this forum that enabled this to happen.
I have read all the abstracts that I could find in PubMed and Urology journals regarding ProAct and I know it's not a magic bullet but it holds high promise due to it's adjustability and the fact that I haven't had radiation therapy. Now I really hope that I don't need radiation somewhere down the road but I figure I'll cross that bridge when I come to it.