Why Peter Leaks

Yes, the double entendre is deliberate. You'll have to look elsewhere for a funny.

In about two hours I will be leaving for an appointment with my urologist for a cystoscopy (my first ever, as it happens.) I am hopeful that I will get additional information about why I continue to leak 18 months after surgery and 13 months after I completed my adjuvant radiation therapy. I've been speculating about what the doctor will find. I thought I would give you guys a chance to guess. But first, a bit of background:

DaVinci RP June 2012. Surgeon had to cut close to sphincter to get all of the cancer. Some nerve sparing on one side. Very large prostate (over 90 grams).

After several months I noticed I was passing bits of ossified suture material. You can read about them (and see photos) here: uncle-freds-prostate.blogspot.com/2012/10/doing-bit-of-my-very-own-science.html. Mentioned this to urologist. He said he likes to wait a year after the end of treatment to evaluate continence.

IMRT (66.6 gray over 27 sessions) September-December 2012. Still pretty leaky when the radiation started.

First half of 2013: my leaking improved slowly until I was down to about 1 pad a day (occasionally 2 pade) but the pads were never dry at the end of the day.

Middle of 2013: I decided improvement seemed to have stopped. Continued to be uncomfortable, especially after Kegels. Felt like a scratchy object in the area of my bladder neck. Occasional pain in urethra, about half an inch from the end.

Second half of 2013: Weighed my pads every day to measure leakage. Kept a log and made a graph. Here it is: : /docs.google.com/spreadsheet/ccc?key=0As2Lx8MdiUugdHUwc3c5cVRLRklBSFRMU0lybzB0MHc&usp=drive_web#gid=3. It shows that leaking has been getting worse (despite a sensible level of diligence with my Kegels.)

Yesterday: I notice there is a spot in my perineum where my urethra doesn't like to be pressed on (sharp, gritty feeling).

Today (at 2:15): Maybe I find out something.

So, what is your guess?

1) Radiation cystitis plus an incompetent urinary sphincter?
2) Scar tissue?
3) 7 mm bladder stone embedded near the sphincter at the site of the surgical anastomosis?
4) Radiation damage, no information forthcoming about the leak?
5) I basically won't find out anything?

So, a guessing game. The choices aren't exclusive everybody can make the same guess if they want to.

I'm in for number three but am tempted to hedge with number 5. We'll see.

I'll post the results at midnight tonight.

Peter, I really can't guess, but it seems likely that the physical sensations are indicating something hopefully can be put right. I hope so. By the way, I've had several cystos, and if you just relax, they aren't bad at all.

I think it's left over from the surgery and that the radiation made it worse.

I certainly hope that they find something useful today. Hate to think you have to go through the procedure only to come home to no better info.

Hang in there,
Andrew

#3 or........... Candiru?

I did a cystoscopy two years after surgery because I had blood in my urine. Darn nurse had to hang out and help...

URO found a titanium clip that had a build on it which indicated my body was rejecting it... I think the URO almost shed as many tears I did trying to YANK the darn thing out... Ended up having to do day surgery to get it out.

So, David (Purg) was basically right. Choice number 4) -- Radiation cystitis plus nothing conclusive about the leak -- is the result. My urologist seemed to think my sphincter was working really well. He found some "paleness" in the bladder which he says is a frequent result of radiation but it wasn't particularly bad. There was a small area of inflamation near the bladder neck, but again neither bad nor worth the effort to treat. He increased my Vesicare from 5mg to 10mg daily and will see me in six months.

I have to admit I had allowed myself to hope that he would find something obvious and fixable like a bladder stone but nooo. Oh well.

So, the good news, I suppose, is that since my sphincter seems to be working I should be able to hope to do well with a sling. Since I am considering getting an implant at the same time, if I were to need an artificial urinary sphincter, its control, plus a pump for the implant, would be an awful lot of hardware clattering around in my scrotum, not that my ADT hasn't left me lots of room in there.

My next appointment with him is in mid July (not long after I return from GFMPH Alaska.) I'll probably talk about doing the sling and implant sometime next fall or early in the winter. By then I hope I will have been done with my ADT long enough to remember why the implant is a good idea.

I don't leak but second opinion urolgist/surgeon did a cysto test for investigtive purposes, maybe 6 months ago.

Luckily due to the Lupron I don't have a lot of feeling in my second belly button, the outie below the innie that I used to call my penis.

Cysto probably ties with the biopsy staple test as my least favorite.

LupronJim

Pww 99,

Sadly, there are quite a few of us. In an odd way I am lucky that my leaking is as bad as it is. There are various surgical interventions that can dry up men who are big-time leakers but the poor guys who just leak a little bit don't generally have anything done. The recovery for incontinence surgeries (slings and artificial sphincters) is similar to recovery from prostatectomy. Guys who leak a little aren't motivated to put themselves through that again.

There are some guys who leak at 8 months who dry up eventually. Scar tissue tends to flatten out and become more flexible. Most urologists like to wait a year after surgery before they look at next steps. You should be coming up on a year when you see your urologist in April. If you are still leaking you can talk to him about your options.

Good luck.

Knotreel,

Thanks for the info. It's always reassuring to hear from guys who have gone before.