Six years after Radiation/4 Years after HIFU...sudden stress incontinence...then urinary blockage...now almost completely incontinent. WTF

[greatjohn]

I had Radiation in 2014...then PSA did not get under 4. Had HIFU in appx 2016...then found the cancer had spread to local bones and lymph nodes in pelvis(awarded the Stage 4 trophy)...started Lupron and PSA still didn't go down very low...did Chemo (6 sessions)...PSA finally dipped below 1.0 for the first time since diagnosis....last 18 months been coasting along (with slightly upwardly mobile PSA to now 5.34) on Lupron and Xtandi...

AND THEN...apprx. 8 Months ago...I started having what I learned was "stress incontinence". I went to a Urologist. They did the camera up my penis....saw a lot of dead tissue and scar tissue around prostate...told me to do Kegel exercises. I started those....less than 6 weeks later I ended up in the emergency room while on a 6 week road trip...with total blockage. Could not pee. I ended up for 3 days in the Mayo Clinic (in Rochester) emergency room. They let me go with a Foley catheter...I had that in for 6 weeks (completely road trip)...when my urologist removed it...I peed fine. ~~FOR 3 DAYS ! ! ! back in the emergency room in N.Y. city...Lenox Hill.(while attending the Prostate Cancer Conference) They catheterized me. When they took it out...I passed a huge piece of dead tissue and finally could pee. They gave me antibiotics for 10 days... I have been peeing GREAT since then(almost 2 months)...

Strangely, just after this...I noticed my "stress incontinence" was better...

HOWEVER, now for the past couple of weeks it has gotten MUCH worse and I wouldn't call it "stress" incontinence...I'd call it "INCONTINENCE".

It's a 1000 times better than being blocked and catheterized, but it's NOT fun. Why/how is this happening so quickly? has anyone had this kind of rapid fire deterioration of urinary function? Sorry this was long, but I wanted the back story to be here. This has all progressed over the past 8(ISH) months....from fine...to light "stress" incontinence....to complete blockage...to very light stress incontinence to ...THIS...almost 24/7 leaky faucet.

Wet & Wild in Sunny South Florida,

gJohn

p.s. sorry I could NOT think of a picture that would make this post "pop"...LOL.

[Tall_Allen]

Would an artificial urinary sphincter device help?

[greatjohn in reply to Tall_Allen]

I'm still hoping that this gets better (as quickly as it got worse). My urologist mentioned these the first visit. It's not something I would like yet....I'm still not that incontinent yet.

I was more curious if this is the normal progression that I had. Will be holding off and using the pads for the time being.

Thanks,

J.

[Tall_Allen in reply to greatjohn]

No, not normal, but it happens.

[farmanerd in reply to greatjohn]

You could always see a pelvic floor physical therapist. It may not help, but it's worth a shot.

restorationspt.com/blog/pel...

[greatjohn in reply to farmanerd]

I have that in mind...thanks. For now I am back to doing Kegels again.

[Hidden]

I didn’t realize that you’ve been at this for a year more than I have ... Time flys when we’re having fun ,eh? ... I don’t know if a valve could help you out now . ?We have a buddy that has one and he’s in control of his urology ...... one could never imagine the intricacies of human urology gone bad until it happens to you ...You will find a fix ... Take care ... ........... Scott

[greatjohn in reply to Hidden]

Thanks Scott...this years have really gone fast.

J.

[Hidden in reply to greatjohn]

We got lulu after dx at 3 months old over four years ago . Sparky and lulu bring us the love .

[greatjohn in reply to Hidden]

he's my little angel..(he's a devil) ....but he's still my little angel.

J.

[greatjohn in reply to Hidden]

P.S. my Anniversary...6 years...is a couple months away. Appx January 14th....the same time our puppy, Sparky , was born.

[arete1105]

sounds like your lower sphincter is affected and can't close off urination until you get to the bathroom. The nerve bundle there has been compromised by the radiation/cancer affecting your sphincter. The suggestion by TA is a good option. I talked to a person who had leakage and he got one of those battery operated on/off devices and said it works great.

[dadzone43]

Kegel kegel kegel.

Also I have two cases of Willow brand incontinence briefs to share. I'd happily ship them to you GJ.

[greatjohn in reply to dadzone43]

Thanks, but probably best to donate locally. I get them so inexpensively it's probably not worth it to ship them.

Thanks again though, that's very sweet.

gJ.

[dadzone43]

OK.

[Hirsch]

Sorry for all your issues. I would hope that our members should exercise caution before jumping into radiation as a therapy. It DOES have its NASTY complications. God speed

[Hidden in reply to Hirsch]

I share that concern. I was steered toward external beam radiation but chose HIFU instead. That was three years ago. OK on the quality of life front so far.

[Hirsch in reply to Hidden]

Good choice

[greatjohn in reply to Hidden]

I had the HIFU as salvage therapy AFTER radiation. I think that doubles up the damage from Radiation and HIFU....I'm hoping things are actually healing in there now...I've had almost 2 months of no blockage and peeing fine...just the leakage.

[j-o-h-n]

to greatjohn from greaterj-o-h-n

SEE arete1105's post above... I'll convert his post into technical terms "they fucked up your sphincter"....

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 11/22/2019 7:09 PM EST - JFK assassination 1963

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

Lol. Ouch.