Urinary blockage/leakage Post Radiation/HIFU

[greatjohn]

has anyone experienced blockage due to "necrotic tissue" / scarring along the urethra or on the prostate after having had Radiation to the prostate? I actually had radiation and then a year later had HIFU (High intensity focused ultra sound).

My urethra (upon being cystoscoped...looks like a war zone. I have experienced some horrible blockage (now 4 years late)....and ended up catheterized for 6 weeks...had it removed...peed for 3 days...then ended up in the emergency room again...(now that's been one week ago). On the last visit to the ER in N.Y. while at the prostate cancer conference...I had to be catheterized again...however...I flowed fine for about 2 hours...then got stopped up again. I passed a LARGE piece of necrotic/scar tissue out of my penis...like a bullet..and afterwards flowed like a garden hose. At the conference I spoke with an expert and she said I should have my urethra/prostate area "cleaned up"....with what I assuming would be a camera guided lasering of the walls...to make flow better.

Has anyone had this done (for this kind of purpose) and how were the results?

I've going to be talking with my urologist again...(who acted like I was making up the concept of doing this, but the expert mentioned it...and I saw a lot about it on the internet.)

gJohn

P.S. The picture is of the projectile (blockage) that shot out of me in the ER. It was very large.

[StayingOptimistic]

I have not had anything like that done but for whatever it’s worth mentioning, I have a 7 mm legion where the prostate was removed and attached to the urethra ( they call it anastomoses). I did a biopsy for it and came back negative for PC. they think it might be a scar tissue. sometimes I worry that it might turn out to be cancer and experience what you have. Hope not. I wish you the best of luck.

[Hidden]

That’s horrifying John. My head spun with your description of it .. I hope that you can find a fix .. I went through that cathing then blocked then k failure ... then a year with tubes . I’d follow that dr who says that he can help you .. Hang in there greatjohn.... I pray that you can find a way to improvement very soon . 😩

[greatjohn in reply to Hidden]

Thanks!

[Hidden in reply to greatjohn]

You will find a solution to this situation . I know the suffering all too well GJ .. It’s great that you did that trip .. Get this fixed so you can go on the next trip .. Avocate for what you need . much love .🎢

[greatjohn in reply to Hidden]

hug hugs...I'm inspired by your optimism!

Thanks,

J.

[Hidden in reply to greatjohn]

What you’re going through is fuc###.. you’re going to get past this . This Uro stuff is brutal man ., Get a cosco hot dog fir now . Make the dr fix ya brother .. nobody needs to suffer such .. 🌎

[Magnus1964]

I was told that I would probably have to have a TURP after radiation. And I did.

[greatjohn in reply to Magnus1964]

this has now been 5 years almost since radiation. The urologist acted like that was too long? How soon afterwards did you have it?

J.

[Magnus1964 in reply to greatjohn]

Maybe 6 to 8 months after my last radiation treatment.

[Hidden]

Whatever he’s acting like ,you need a fix brother ..

[rhbishop2]

Hi John

I had real problems after RRP and RT. First I had a stricture which almost blocked the flow. The Urologist had a couple of goes at tidying things up but that led to the opposite- almost no control at all. After messing about with various cumbersome and/or painful devices I was finally fitted with an artificial sphincter. I still leak a bit and it is odd having to squeeze your balls to pee but the device has been an absolute godsend. Hope they get you sorted.

Bob

[Hidden]

TURP (AKA roto-rooter surgery) is something I had for BPH years before my diagnosis and HIFU surgery. Some consider it a prerequisite for whole gland HIFU treatment. TURP comes in two flavors -- conventional and laser. My urologist was more experienced and comfortable with conventional so that is what I chose.

[greatjohn in reply to Hidden]

thanks...I want to know as much as possible from people before I speak with the urologist about how to address the issue.

j.

[j-o-h-n]

cmt.com/video-clips/r3ooge/...

Good Luck, Good Health and Good Humor.

j-o-h-n Saturday 10/12/2019 7:38 PM DST

[TFBUNDY]

Eyup. I had the same passage of necrotic bullets up to the size of a small pea. I passed lots of smaller stuff about 3 months after HIFU, and I seized up totally. Had self catherisation lessons - far less fun than you can imagine. Sort of sorted itself out after a few weeks, but I am very slooow... Now 11 months post HIFU and waiting for first mpMRI follow up. Urine retention and slow but I decided to let it settle down and have a cystoscopy after the MRI. Can't get a catheter in now no matter how hard I push the bloody thing. Either solid scar or a 'sinus' dead end in there. We shall see. Latest PSA 1.2 (focal ablation across the midline with about 40% gland destruction). Is this fun? I get super hard stiffies and I can feel the scarring pull as the urethra stretches out. Looking for volunteers. Don't tell the wife.... Lol

[greatjohn in reply to TFBUNDY]

Yes....this is far less fun than I imagined. 😳

All my issues just started now (almost 4 years after HIFU.)

PRAYING FOR MIRACLES.

I Have had over a week of easy peeing with good stream...so I am counting my blessings.

Everything feels great so far since passing my huge chunk of dead tissue.

All the best,

gJohn

[greatjohn in reply to greatjohn]

I should correct the dateline above. It appears to be only appx 3 years post HIFU for me.

J

[greatjohn in reply to TFBUNDY]

P.S. Bundy.. how low has your PSA gone?

You're sounding a bit like mine did....it never went below 1.0 until I did Chemo.

[TFBUNDY in reply to greatjohn]

Over the 10 months post HIFU PSAs have been 1.4 at 3 months, 1.2, 1, 1.2... I am happy with that. I have about 60% gland left

[greatjohn]

All the best.