Can anyone share their experience with ProACT (an AUS)?

@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.

I am 20 plus years from complete prostrate removal and have had incontenace problems for all of those years until it was so severe that I was going thru 6 plus overnight pads per day in March of this year I had the PROACT procedure performed at Mayo Clinic Phoenix, Az. I was back for five adjustments and now I wear a light pad for 24 hours with just drops on some days. This has really been a game changer for me because I like to be on my feet more than setting so if I would go to Home Depot or Lowes I had to find a restroom to change my pads after an hour. Not any more there is almost zero incontenace. What a wonderful Dr. and what a decision on my part. Go for it !!!

@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.

It appears you are only nine months or a year past your prostatectomy.

Many people find that prostate cancer reoccurs two or three or four years after a prostatectomy. For me it was 3.5 years and there was no spread when I had surgery.

Ask the doctor that puts in the ProACT If it’s possible to put an AUS in if you have to get radiation in the future and the ProACT stops working. If that’s possible, then the ProACT would be a really good choice.

@jeffmarc You are correct, only 9 months out and I was concerned that urologist would want to wait until the one year point before doing anything surgical to address incontinence. However, my incontinence was severe (complete) and PT and time had yielded zero improvements, not even the slightest. I think the reason surgeons generally like to wait for 12 months post RALP is they want to give the body a chance to recover continence on it's own. I am grateful that there has been no hesitation moving forward. According to the maker of ProAct it is very easy to remove. 16,000 of these have been done throughout the world, most in Europe where it has been approved quite a bit longer than in US.

@fkm
Being on ADT and/or Zytiga will reduce your testosterone so you will have little desire for sex And it can be hard to get an erection. I’m not sure what drugs you are on.

Some people get implants so they can still get erections,, There is a very high satisfaction rate with people that have done this.

You can also use injections into the penis, which can give you a solid erection. They have Bimix and Trimix Injections that can be used and they work very well for most people.

It is also recommended that people take Cialis daily to keep the blood flow working properly. This is something your surgeon should’ve told you about. Many doctors give them to their patients very soon after surgery, They don’t wait a year for it.

Yes, if you have incontinence, it is serve a pain, but you can wear a condom while having sex.

You don’t have to give up. There are solutions.

@jeffmarc I think you may have misunderstood my reference to “implants”. I’m referring to the sling and ProAct as implants, which they are. My spinal cord injury 16 years ago introduced me to ED and rewired my sexual response in very strange ways. The prostatectomy destroyed most of what I had left and once I have better control of continence I’ll go there. I had been wearing a condom catheter 24/7 for the last 5 months before the sling surgery and that precludes any serious intimacy.

@fkm
I was referring to penile implants. Maybe you aren’t familiar with them. They can be used to give you an erection.

The question covered more than one type of problem both ED and incontinence.

I know exactly how ProACT and an AUS are implanted. I have seen At least three different online demonstrations of how they are used by urologist that specialize in incontinence.

@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

@tommylee3
I attended an Online conference where a urologist who specialize in incontinence discussed all the different types of procedures and devices.

He said that when ProACT Came out he really liked the device and put it in a number of patients figuring it would work well. Then he found out that it did not work well with patient who had radiation because the urethra gets hardened and the way ProACT worked it was not capable of squeezing the urethra enough to stop leakage.

This seems to be exactly the problem you’re having.

People that have had an AUS installed have not reported similar problems. That’s probably because the AUS has a collar it puts around the urethra that can squeeze it tighter than the balloons used in ProACT.

I actually saw the doctor last week about having one installed and will have it done, probably in February.

I’m not sure if you can switch to an AUS, But I think it would resolve your problem.

Speak to a urologist who specializes in incontinence and find out what their thoughts are. I found that one problem is that some urologist are not real familiar with ProACT and have not used it much if at all. They are all familiar with the AUS.