Sling, artificial sphincter, or stay with pads?

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I had a robotic protatectomy 20+ months ago. I leaked a lot the first few months, then it started getting a little better. I went down from the large pad to a moderate one and sometimes used only one a day.

At the same time, my PSA didn't go to zero and was rising in the months afterward so I had radiation a year ago. That made things worse at first but last fall and this winter things were getting better again. I was down to 1 or 2 pads per day...but still leaking.

In the past couple of months, it's gotten worse again. I use 3 moderate pads most days. I changed urologists and the new one did urodynamic testing, CT scan, and cystoscopy. He said I'm not a good candidate for medication and that an artificial sphincter would be my best bet, with a sling a good second choice with a lower potential for success.

I just turned 60 and this is really discouraging. At every step of the way, I've been in the smaller group with worse odds.

* 25% chance of prostate cancer - check. (3+4 biopsy, 4+3 pathology report.)
* Positive margin - check
* Aggressive cancer - check
* PSA not zero afterward - check
* PSA rising - check (0.16, 0.2, 0.37 before radiation)
* Never got dry - check
* Frequency of urination high - check

Now I'm faced with this choice of another surgery that may or may not work and could possibly make things worse, or living the rest of my life have to change pads multiple times a day.

Advice?

 

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I wish I could give you some advice but thank you for posting I only had my operation in February but they are already saying that my PSA is not going down it started at 54 before surgery and they are now talking about radiology which scares me thanks for what you wrote about this as I was worried about the incontinence getting worse and you have confirmed this. I hope someone has some positive helpful information for you.

 

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Hi
I shared my experience on a different thread. Let me know if you need more info

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forum.nafc.org

 

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BEA, sorry to hear that you're in continuing saga category, too. If the PSA isn't zero after a prostatectomy, you don't want to wait long before getting radiation. Since I finished my 36 treatments last April, my PSA dropped to 0.2 and has stayed there for a year now. I'd like it to go to 0 but at least it's not rising anymore.

 

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larryw61, thanks for telling me about that thread. I just joined and hadn't found that one.

 

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Had 52 PSA before RP; after RP in Oct 2020 pathology Gleason went from 8 to 9 and in 6 Lymph nodes. PSA went up to 62. No bone Mets. Chemo and Lupron and ZpSA went down to undetectable after 3 sessions. Now on Xtandi and Lupron. For one month. I wear a clamp. Do Kegels every day. Might go to therapy next for Uninary Incontinence next. Just glad PSA is down right now.

 

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Maxwell, I had read/heard that men who had radiation therapy are not good candidates for either AUS or the sling. And you had your radiation after prostatectomy, which I would think creates even further risk factors for a successful surgery.

That said, I get your frustration with your situation. Three moderate pads a day means you are now most likely having to manage your life/activities around your incontinence. I use 1, sometimes 2, moderate pads a day, and even with this very insignificant level of incontinence I find myself constantly getting frustrated by it.

If you decide to proceed with surgery I would recommend getting a second opinion from a doctor who has done many of these procedures on men with your same profile. Good luck with it!

 

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@mrcatman, you've definitely had a tougher time with the cancer than I have so far. I hope I get to the undetectable level, but it's been holding steady at about 0.2 since radiation.

 

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@cmulwee, I haven't heard that with respect to AUS or the sling, but I did hear that if you do radiation first, a prostatectomy probably isn't an option. Both urologists I've seen have said that AUS and the sling are options, but I'll check around some more.

Yes, the leakage hasn't been that much of a problem for the past year because I've been working from home most of the time. Now that I'm vaccinated and things are getting back to normal, I have to plan appropriately when I go out and do things so I can change pads when necessary.

I do tend to let my pads fill up more than I should, I guess, mostly because of denial and annoyance. As a result, I sometimes have to change my underwear or even my pants because I let it go a bit too long.

 

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@MrCatman how do you like the clamp? I cath 4 times a day and leak a little in-between. My uro suggested the clamp, but I'm worried about a stricture

 

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I posted this in thread

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forum.nafc.org

I used the Lunderg Confidence clamp for months 4 and 5 (January and February).

I am leaking 30 ounces or 25% of what I drink.

I found the clamp very helpful. I like not having the release feeling of pee filling up my pad or pullup every time I get out of my vehicle. I tried it out for the first week around my house. I did have one strange feeling when walking, so I do not wear the clamp while walking. The clamp is not made to wear while sleeping.

Instructions to release every 1 to 2 hours

https://lunderg.com/incontinence-clamp/

 

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@MrCatman how do you like the clamp? I cath 4 times a day and leak a little in-between. My uro suggested the clamp, but I'm worried about a stricture

I'm at home mostly, so that helps. Any bending down and it cd come off. No evidence of stricture but that's a concern. I go about once every hour and a half, and take it off at night and pee two times during the night. Try not to lock it too tight. It's not a long term plan. Supposed to go back to the office in August and not sure how I feel about that. Might just retire...

 

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@Maxwell Will you give us an update on your decision about AUS (artificial urinary sphincter) and / or male sling?

Thank you,
Terry

 

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@thudson1965 Sure. I don't know why I didn't do it sooner, but since coming on this forum I've started tracking the weight of urine in each pad (subtracting out dry weight from total). In May, I leaked 8.4 ounces per day and averaged 2.3 pads per day. In June I leaked 7.0 ounces per day and again averaged 2.3 pads per day. My minimum leakage was 2.2 ounces in a day and the max was 21 ounces. I occasionally have a 1 pad day and have had to use as many as 5 in a day.

It's definitely affected my life, as I have trouble standing up for a while or walking much without leaking. I'm about 90 to 95 percent decided on getting the AUS, but it still worries me. Sex isn't the same as before surgery, but it's still good and I don't want to lose that with another surgery. Everything I've seen about it, though, says it doesn't affect sex.

It also worries me because I was in the 6-8% who don't get dry after surgery and have been in the smaller, worse-off group just about every step of the way. Will getting an AUS be different? Or will I be in the ~90% who are don't need pads afterward? I'd love to be dry again.

Just recently the issue of going swimming came up. How would I do that? I'd have to take the pad off before getting in the water and then put on a new pad before my swimsuit dries.

I go back to the urologist in August and may schedule it then. I've also thought about looking at getting the AUS at a clinic that does more than my urologist does. Does anyone here know where would be a good place for that? Cleveland Clinic? Johns Hopkins? Somewhere else?

Thanks for asking, Terry!

~ Maxwell

 

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Hi
You will lek minimally with an AUS. If they make the cuff too tight it stops the blood flow.
Im not really sure when I leak, sneezing, coughing are my best guesses. When the pelvic floor pressure
exceeds the cuff pressure bingo a drip or two.
I dont use any pad when swimming or sitting around in my swimsuit. So far it hasn't been a problem.
Two tenths of an ounce +- over a day isnt very much