Incontinence fix – ATOMS, AUS or AdVance?

On_A_Journey
On_A_Journey Member Posts: 133 Member
edited February 16 in Prostate Cancer #1

After my RP in 2015 and follow-up salvage RT in early 2016, I gradually became dry and life was sweet. A few years ago, due to complacency I began to slacken off with Kegels and became used to the idea of wearing a shield during the day while still being dry overnight. A little over a year ago, I hurt my back and it is if I lost all muscle tone in my lower torso which resulted in a sudden increase in incontinence. I was only losing approximately 90ml per day (I occasionally survey myself for a few days at a time, every now and then) but the leakage was causing issues due to the inadequate pads I was using at the time and my inexperience at detecting fullness etc. I recovered physically but never returned to the continence level that I was at previously.

I had an appointment with a urologist last January and was set up to undergo a procedure to install an ATOMS sling. I got cold feet and decided to get off my posterior and get into Kegels again. This improved my leakage issue and shortly after, was down to losing a manageable 50ml per day. I cancelled the surgery.

Throughout this year my incontinence has worsened. Despite Kegels I am now losing around 120ml per day, managed by larger pads, but I am also losing 10 – 20ml overnight and don’t often feel leakage during the day like I used to. I had one particularly poor day not long ago when I lost around 200ml.  I intend to see the urologist again in a couple of months to discuss my options.

I would like to get some opinions on my options. To me, they are (1) ATOMS sling as previously advised. This seems to be the most advanced and effective automatic method nowadays. The problem I have with this, is that riding a bike afterwards is a no-no? This is my main form of exercise. (2) AUS. This seems old hat and pretty grotesque to me. It might also be overkill, and could be an issue going forward if I choose orchiectomy over hormone therapy if I need to undertake HT permanently in the future (I am experiencing biochemical recurrence and might be starting intermittent HT soon. I don’t have the typical toxic masculinity hang-ups so I am comfortable with the concept of surgical castration rather than ongoing chemical castration). (3) AdVance sling, apparently less effective than ATOMS but not even mentioned by the urologist when I spoke to him 12 months ago. Is it still a thing?

Does anyone here have experience with either method?  

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Comments

  • Josephg
    Josephg Member Posts: 460 Member
    #2

    AUS is your long term solution. Call it old hat or grotesque, but it works.

    I've been through radiation and hormone therapies with it, with no issues. If you choose orchiectomy, you will still have a scrotum, in which the AUS pump resides.

  • Old Salt
    Old Salt Member Posts: 1,530 Member
    #3

    Whatever you choose, make sure that the urologist has extensive experience with the device you select. BTW, can one still get an AUS after a sling failure?

    Good luck moving forward.

  • On_A_Journey
    On_A_Journey Member Posts: 133 Member
    #4

    Thanks guys.

    I know that my quetions will be answered by the urologist when I see him, but I appreciate any insights before then.

    @Josephg, I was thinking about it the other way around. If I get fitted with an AUS first, I wonder if it would complicate the orchiectomy? Then, what if the AUS moves and is more difficult to use?

    @Old Salt, good question! I'll add it to my list for the urologist.

  • Josephg
    Josephg Member Posts: 460 Member
    #5

    Proper placement of the pump in the scrotum is critical, which is why Old Salt recommended that you find a Urological Surgeon that has lots of experience in AUS implant procedures. Once the body has healed from the procedure, the pump will stay in place, and not move up or down. I see no reason why an orchiectomy would be adversely impacted by the existence of a pump in the scrotum. Without testicles, the pump will be very easy to locate in the scrotum.

    Below are some links to threads that contain my comments with the AUS implant and my experiences afterwards. I don't know if the links still work, but if they do, there should be some good AUS-related content for you to peruse.

    http://csn.cancer.org/comment/1324584#comment-1324584

    http://csn.cancer.org/comment/1326323#comment-1326323

    http://csn.cancer.org/comment/1339326#comment-1339326

    http://csn.cancer.org/comment/1339561#comment-1339561

    http://csn.cancer.org/comment/1344785#comment-1344785

    http://csn.cancer.org/comment/1413239#comment-1413239

  • On_A_Journey
    On_A_Journey Member Posts: 133 Member
    #6

    Josephg - thank you. You have done a great thing by writing so comprehensively about your experiences. Although I haven't read every word yet, I appreciate you putting it all out there and I assume I'm not alone with those thoughts.

    One thing I did pick up on was the need to wait a minute or so after voiding for the cuff to seal up again. How do you manage this at, say, half time at a sporting event when there are what seems like thousands of well-primed spectators queued up behind wondering why you're just standing there?

  • Josephg
    Josephg Member Posts: 460 Member
    #7
    https://csn.cancer.org/discussion/comment/1702974#Comment_1702974

    Good question. Initially, I'd use one of the toilet cubicles, instead of a stand up urinal. Later, I simply wore Depends and let the dribbles after voiding collect in the Depends, while the cuff fully closed.

    One thing that successfully living with cancer forces you to do is to continuously adapt yourself and your methods to the changing environment and continue to focus on the good things in your life. What's a few dribbles into the Depends, when it allows you to still go to and enjoy sporting events (and all other events in life) as a 'regular' person.

  • On_A_Journey
    On_A_Journey Member Posts: 133 Member
    #8

    Ahh, I thought so! I would probably do the same as a precaution post-op. Pads rather than Depends though.

    Realistically, I imagine getting one of the slings fitted rather than the AUS because my incontinence is not total, in fact sometimes, particularly in the mornings if I'm having a quiet day at home rather than being at work, I barely leak at all. In the meantime, I have adapted to my overall worsening situation by being more vigilant and careful with pad selection and pre-empting physical activity etc.

    I see my oncologist for my next regular 3m follow-up appointment to discuss my latest PSA blood test in early Feb. I expect to have a PET scan shortly after and discuss the possibility of treatment after that, depending on the results. When I eventually get a clear window of opportunity, I will then see my urologist to discuss my options.

  • Josephg
    Josephg Member Posts: 460 Member
    #9

    Your decision for sure.

    However, I would strongly suggest that you deeply research the patient experiences with the sling-type of devices, as when I researched it years ago, the patient experience was not too great. Slings becoming detached was one of the main recurring patient negative experiences. The other negative patient experience was that they did not perform nearly as well as advertised in their main function.

    That was a decade ago, though, and advances in technology and practices may have resolved patient negative experiences with sling methods.

    I wish you the best of outcomes in whatever method that you choose.

  • On_A_Journey
    On_A_Journey Member Posts: 133 Member
    #10

    So - I am undergoing a procedure on Aug 29th to get an ATOMS sling. I have already had the precursor procedures including a simple flow test, a cystoscopy and a urodynamic test.

    AUS very well might be the complete solution and if I was totally or severely incontinent I would probably consider it, but the fact that I've never even had to think of wearing nappies, puts it out of consideration for me. I would have been happy with the more basic AdVance sling, without the guarantee of complete success, but muscle damage due to my salvage RT has apparently ruled it out. That leaves the ATOMS. Again, there is no guarantee of complete success, but it does seem like the better sling option.

    I'll keep y'all posted.

  • Old Salt
    Old Salt Member Posts: 1,530 Member
    #11

    You have given the matter a lot of thought.

    I certainly hope that the sling procedure will be successful; we will be looking forward to your comments (in due time).

  • On_A_Journey
    On_A_Journey Member Posts: 133 Member
    #12

    Thanks, OS.

    The time taken to apparently make a decision was more due to circumstances this year preventing me from going ahead with surgery. Ideally, I would have got it over and done with 6 months ago.

    Five more sleeps...

  • On_A_Journey
    On_A_Journey Member Posts: 133 Member
    #13

    All done and dusted. Surgery went well and I only stayed the requisite one night in hospital. I'm still sore, numb and swollen down there but I'm comfortable enough and not needing to take maximum dosages of painkillers. So far I am completely dry, but as the swelling goes down, there could be some leakage. That's to be expected. I have my initial follow-up next week and my first adjustment, if necessary, about a month after that.

    I am finding it difficult to start a stream, probably due to swelling, but have no issues with retention etc.

  • Z3guy
    Z3guy Member Posts: 1 Member
    #14

    I had my AMS 800 implanted August 15th, and had it activated four weeks later, on September 13th. I am now 100% dry. It’s a dramatic, life-changing outcome after 22 months of significant incontinence. My related observations are that the recovery is challenging, with substantial scrotal swelling/pain, a slow-healing perineal incision (at five weeks I still can’t sit without my custom pillows), and the conclusion that the 6 weeks until activation number is a good idea. I activated at four weeks, and the residual swelling around my pump has made use uncomfortable/painful.

  • Josephg
    Josephg Member Posts: 460 Member
    #15

    Welcome to the world of implants. It is definitely a gamechanger, and your life of artificial continence, and a return to daily normalcy, will commence.

    Yes, the recovery is a bit challenging (much more challenging than a prostatectomy), but that will pass.

  • Old Salt
    Old Salt Member Posts: 1,530 Member
    #16

    Great news!

  • On_A_Journey
    On_A_Journey Member Posts: 133 Member
    #17

    Thanks guys. @Josephg , although we had different procedures to try and get to the same outcome, I also felt that my recovery was slower than that of my RP. I'm +25 days now and still experience some discomfort down there, but rapidly improving now. Initially, it was muscular and joint pain due to the brutality of the procedure - knees hoiked right up and splayed wide apart for a couple of hours. The swelling and bruising to my genitals was pretty gruesome too.

    The ATOMS sling was installed with an initial 9ml of fill liquid. My average amount of urine leakage in the few months leading up to the op was around 200ml per day, now it is around 20ml per day. I don't even leak when I sneeze! My next follow-up, where I understand another 3ml will be put in, is on November 1st. That might even be enough, and there will still be plenty of room left over for future adjustments if required.

    I can definitely see blue sky ahead!

  • On_A_Journey
    On_A_Journey Member Posts: 133 Member
    #18

    Well, since my body settled down, my average loss had been around 30ml per day lately, but pleasingly, only 1 or 2ml overnight. Pad weight surveys revealed my worst day was a loss of 48ml and my best day was only 17ml.

    I had my first top-up yesterday with 3ml injected into the cushion. A very strong local anaesthetic liquid is applied to the scrotum which resulted in a burning sensation, the filling port is located and manipulated, and a rather large looking syringe is poked into it. I didn't look. 😉

    The whole ordeal was not as bad as I imagined. The local wears off after a few minutes and life quickly returned to normal.

    I have already noticed somewhat of an improvement in my continence compared to before my top-up. I will carry out a couple more 3-day pad weight surveys over the next few weeks and go back for another flow test/ultrasound in a month to make sure that the further restriction now in place doesn't result in too much urine retention (it's good at the moment).

    It's a slow process, but I definitely feel like I made the right choice. YMMV.

  • Old Salt
    Old Salt Member Posts: 1,530 Member
    edited November 2023 #19

    Glad to read that the top up procedure went well. The gas station attendant must have been pleased as well 😀. BTW, not many of them around anymore, at least in my neck of the woods.

    PS: Your reports have been very useful for those considering these kinds of procedures. THANKS!

  • On_A_Journey
    On_A_Journey Member Posts: 133 Member
    #20

    Gas station attendant, haha! I might tell him that next time. Until now he's just been a plumber...😉

    You, and everyone else here are more than welcome. I think it's the least we can do; share our experiences for the benefit of others. It benefits ourselves too - there is a certain level of catharsis to be had by laying bare our trials and tribulations.

  • On_A_Journey
    On_A_Journey Member Posts: 133 Member
    #21

    I had my second top-up today, another 3ml. Damn, I forgot to deliver the gas station attendant quip! 😁

    As it turned out, my first top-up didn't result in any great improvement compared to post-op on paper, even though I felt a bit tighter down there. Still losing around 30ml per day, but it was heavily dependent on physical activity rather than caffeine or alcohol consumption, which are two known substances that can have an adverse effect. This is far more preferable to the 150-200ml per day I was losing before my operation though!

    Once again, I feel tighter, and I definitely have more difficulty starting a stream while already sitting for example, but I still have some leakage. I suspect that I will go back for another top-up in the future, but I will leave it a good couple of months due to other stuff going on in my life. I will try and remember to give an intra-visit progress report here soon!

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