Went ahead and had it done

[marinoperna]

with the MRI and bone scan clean, i decided that with a confirmed Gleason 8 (4+4) 10% involved ( Dr. Epstein) and low PSA 3.7 at last test with my last biopsy nearing 3 months, it was time to act. Decided to schedule surgery. It was to be on 4/29/21 (45 days from now) giving me a bit more time to check out my two other possible choices. Spoke with SBRT specialist Dr. Debra Freeman and HDBR's Dr. Biagioli both are indeed highly knowledgeable as well as personable enough to explain fully what I could expected. Dr. Freeman actually phoned to see how was doing. Dr. Biogioli actually suggested surgery (for the longest lifetime)

A big, Thank You to Tall_Allen for recommending them.

On April Fools Day i get a message that my surgery could be 2weeks sooner (4/13). No more time for thinking, wouldn't be able to get in anywhere else any sooner, so i confirmed. That's when the jitters, the what if's, started. With a phone call assurance from Moffitt's surgery chief, Dr. PowSang i was still nervous but committed to my decision, I was ready.

The 4 hour 18 minute surgery went by in a second (than you anesthesia). i awoke to see my lovely wife who assured me everything went well. Well indeed, five incisions and a drain. The only real pain i had was the removal of the drain. Man that hurt! Within 2 days i could get up from a chair, sofa or bed by myself. no pain meds not even a Tylenol. Super, but it was counting the days for catheter removal (full 14 days) that took a good toll on my psyche, seeing the tube, the electric shock with some wrong movements, the bag to carry and seeing the tube coming from a place where there should never be one (sorry to repeat).

Greatest day was 4/27 not only because i was cleared to have the catheter removed but also my biopsy report was ready. The Gleason 8, even with the second opinion from Epstein, was downgraded to Gleason 7 (a 3+4), no involvement with nerves or lymph nodes and only 5% of the prostate found to be cancerous. Yippie. Life is Great! Knowing that i'm not as sure i would have made this same decision! OH Well, no turning back the clock at this point

However, with everything going so well, that i've been spooked from the constant dripping. It's not just when coughing, laughing or picking up stuff, as i've read other having to deal with, it's simply constant. I have found that it actually will stop if i lay down or am sleeping, but if i dare move to get up there is no stopping the Niagara Falls to come!

Anyone else experience this? I'm hoping for someone to tell me this too will pass and not the sign of the wrong thing being cut. In all my reading i have not read of anyone with this same problem. Incontinence dribbling is one thing but this is ridiculous!

Sorry about all the background but thought if may be helpful to others in our situation.

Marino

[AlanMeyer Moderator]

I had radiation rather than surgery and have no experience with the dripping problem. Have you talked to the surgeon or his staff about it? What do they say? Can they recommend kegels or other exercise? What about putting a catheter back, or perhaps using an external catheter (something like a condom that fits around the penis but drains into a bag.) Some of the adult diapers work well to at least keep you from wetting your pants.

If you haven't talked to the doctor or his staff about it, call them as soon as practicable.

Good luck with it.

Alan

[OldTiredSailor]

RALP prostate removal late August 2018.

The constant dripping was annoying and caused me great stress because it seemed to not be getting better. After two months I could go hours with no problem then suddenly a gusher. I kept a detailed spreadsheet of my man pad weights and usage to see if there was a downward trend in the dripping frequency and volume.

There was a useful diminishing trend but it was SLOW - and inconsistent. I would go days with almost no leakage and then suddenly 12-hours of little or no control. Caffeine, alcohol, or pain meds seemed to cause the problem.

At six-months I felt I was making good progress with hardly any problems and then suddenly I would go hours with major leakage. At 12-months I was able to have good bladder control almost all the time but, still, occasional surprise drips.

Now, at 32-months I don't even wear a drip pad unless I am going to be doing serious, gut wrenching work or when I play pickleball.

Even now, more than two beers, or a dose of strong pain medication will lead to some minor drips.

My urologist, with 25-years experience as a surgeon, told me a year is the minimum time needed to see what your long term recovery and control will be. And, he said most men keep improving for another year after that, which was exactly my experience.

Kegels, patience, and time is all that is needed!

[marinoperna in reply to OldTiredSailor]

Thank you for your reply. Never realize it could take that long. I decide to do the surgery as most of the docs i consulted with agreed it would (should) lead to the longest lifespan but now if i use up 1-2 years of my "youth" (i'm 71) there's really nothing to gain over some kind of radiation as the problems arise later in life (though maybe those guys have the same initial underlying problems as well!)

I have not started a spreadsheet but have noticed that if i sit or lay down the flow is almost non-existent however, i must be cognizant that before i try to stand to pinch the shaft shut or the gusher begins with no stopping till its all out. Then the insistent dripping starts all over. Did you have any of those same experiences?

Maxi pads are OK for around the house but just don't hold enough for the gushers (hate that warm feeling!). The Depends diaper holds more but still is quite full in just maybe 6-7 hours. Ever try a external catheter? Any success?

Marino

[CHPA in reply to OldTiredSailor]

I second the issue with alcohol. It relaxes muscles Including the bladder and adds liquid.

[jctaylor]

Just to confirm OldTiredSailor’s comments... You are very early in the healing process and your experience is pretty normal. I’m approaching 2 years post RP. Like you I had very little control right after surgery but today I have only minor leakage and hope to see continued improvement. Do your Kegels every day, it will get better!

[Murk]

I agree pretty normal, some do much better and there are others that the time is longer. We are all individuals and it varies. Just keep doing your quarterly or semi annual PSA tests

[marinoperna in reply to Murk]

Will do, Thanks

[j-o-h-n]

Hey Marino..... do your kegels kegels and more kegels..... Buy your depends at costco (good price)....Put a small pad in the inside front of your depends... change that frequently..... stay away from liquids before you go to bed.... (keep away from Marino ices)......Laugh, laugh and laugh....

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 04/30/2021 6:19 PM DST

[marinoperna in reply to j-o-h-n]

Thanks John, Humor is vital for certain!

[CHPA]

It took about three mm the for things to dry up. The occasional small leak up to six months. At 18 I’m just fine and going with the force of a kid… but on demand only. Go east on beer. The alcohol relaxes the bladder and the liquid volume can be a problem. Good to be alive

[marinoperna in reply to CHPA]

So 3 months to get any control? Long time but i can deal with that if my case is anywhere close.

A drip or two i could deal with but this incessant dribbling while standing or walking but then there is the uncontrollable gusher (unless i use the pinch method but that's not practical when away from home) every time if get up from sitting (or lying down) is all becoming a real bummer! Afraid to leave the houseThanks for writing

[CHPA in reply to marinoperna]

I assume you have been doing daily pelvic floor exercises?

[marinoperna in reply to CHPA]

Yes, per the doctors orders

[Golferforever]

Hi. I had the same leaking problem after my RP in October 2018. I tried a PT who taught me kegels with sensors. I found a terrific PT in Australia, Peter Dornan and purchased his book, “Conquering Incontinence”. He also has free excerpts on his website. I discontinued the PT and just followed his recommendations.

It takes time but you will improve as you heal and strengthen your core. Check YouTube for other core exercises to help incontinence.

One that really helped is called bridges. You lie on your back, knees up and raise your pelvis.

Good luck. PS I live in Hawaii but with the internet you can get great information.

[marinoperna in reply to Golferforever]

I will try to find the book - Thanks

[fluffyfur]

You just had your surgery and your expectations are waaaay too high. Wear Depends and put a pad in as well. Change pads and Depends often. The dripping is normal. Hubs leaked for at least four months and even then he got rid of the Depends and still had to wear pads. Do your Kegels.