5 years after Cyberknife and doctor w... - Advanced Prostate...

Advanced Prostate Cancer

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5 years after Cyberknife and doctor wants to TURP: transurethral resection of the prostate. Anybody been there?

Tak-Druk profile image
20 Replies

I've been having small blood clots come out when I urinate for several months now. Occasionally a little blood in urine. I've been thoroughly CT scanned and it's not showing prostate cancer lesions.

I've had a cystoscopy of the bladder and there bladder itself looked pretty clean. However, we could see messed up tissue and lesions where the urethra passes through the prostate. Doctor wants to TURP to be absolutely sure it's not secondary bladder cancer (because the messed up tissues do look a little bit like the "sea anemones" which bladder cancer can form as they grow out of the lining/walls of the bladder.) Doc thinks it is very likely just a delayed reaction of tissue damaged by Cyberknife from 5 years ago.

My urine flow is really pretty good, so I'm not needing relief there. I'm worried that this tissue is already compromised and it will not heal well from the TURP. Doc says it will sort of 'cauterize' and could help stop the blood clots and little bits of tissue from flying out in my urine stream. These would be 'secondary benefits'... the main goal is to get a good tissue biopsy to check for bladder cancer, even though that seems unlikely.

Basically, I'm not into any unnecessary surgeries. And I feel like urologists (and other surgeons) can be a little bit trigger happy. It's supposed to be relatively simple; but I do get to spend the night in the hospital so they can continuously irrigate and make sure I'm able to pee before they send me home.

I'm not so much looking for advice as I'm interested in people's positive or negative experiences with TURP; particularly if you've had this done after experiencing sbrt and radiation cystitis or problems.

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Tak-Druk profile image
Tak-Druk
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20 Replies

Do what you’ve got to do to get that blood from urine.. that’s no bueno.. others have had turp with success so they will answer you . Whatever you do I hope it goes well . Selfishly because who knows? I could need it also someday .. Take care

cesanon profile image
cesanon

Why not shop around for some second opinions.

If they all say basically the same thing, maybe you should listen. If not you may find some options.

arete1105 profile image
arete1105

If you do get the TURP, aren't they going to give you an bladder catheter for 2 weeks while it heals down below. I had a client( no cancer) who had the TURP and he swears by it.

Tak-Druk profile image
Tak-Druk in reply to arete1105

Interesting about the extended time with a catheter... My understanding is that it'll be in overnight; it will have "in" and "out" so they can irrigate. But doc says they'll take it out in the morning and once I'm peeing okay without it I go home. Maybe it's not 2 weeks because they're really doing a minimal amount of work.

Tall_Allen profile image
Tall_Allen

I think you should discuss with a radiation oncologist. It's very common to have occasional blood in urine or after orgasm as scar tissue breaks off. It's usually benign.

It's possible you have bladder cancer too - can't they just biopsy without a TURP?

Tak-Druk profile image
Tak-Druk in reply to Tall_Allen

Yeah... It's been consistently happening for 6 months now: not interfering with urination, but I'm regularly passing little clots. It doesn't bother me physically at all... now I'm just used to it. I watched the cystoscopy, and we could see where they were coming from, where the tissue looked irritated and there were little flecks of blood: seemed to be in the urethra at the prostate, where the radiation dose would have been very high. The bladder wall seemed okay.

When I had the cystoscopy the doc took some kind of tissue/urine sample straight from the urethra, but said the TURP instrument had different capabilities to get the biopsy needed.

Seems like I need to have more conversation with the doc before I go through with it. Maybe I can get a phone consult or something.

arete1105 profile image
arete1105

Just curious why you are having this problem 5 yrs after Cyberknife. I had SBRT(same as Cyberknife) 3/16 and after 2 yrs it is back to normal- for me it is Flomax every nite. But I can piss like a race horse. I did piss blood into the 3rd yr, but don't know why and it shortly quit.

If your flow is good, am curious why the TURP. TURP is opening up the prostate opening through surgery. TURP is like a roto rooter to the prostate.

It seems like TURP is over-kill just to get a sample. I think TA also made reference to that same issue.

Tak-Druk profile image
Tak-Druk in reply to arete1105

Thanks. I think you are right that TURP in the sense that you are talking about it is overkill. The doc said that the TURP was necessary to get the proper tissue sample... I think she would be going light on the roto-rooter aspect, since I do not really have flow problems. But I am at least seeing that I need to get more clarity from the doctor on the purpose and necessity of this procedure.

my bet buddy of 47 years had that surgery he died last summer at 64 don't know of what. , since the wife was scared of autopsy. he had a turp,i worked at hospitals as a orderly and aide. for men its the worst i tell u not fun for sure. the prostrate is like a donut with a hole in the center. when the prostrate grows and plugs the hole then they go in and cut out and make the hole bigger so they can pee normal. one of the comments said a cather yes but like we say the size of a garden hose. they pump normal saline in it continuous so no blood clots form

charlie

paulofaus profile image
paulofaus

I had an unsuccessful TURP last July, followed by cyberknife (26 grays to the prostate) followed by another TURP. I am now fully incontinent as my sphincter was destroyed by cancer and finished off by radiation. Being incontinent is no fun, but it's still better than self-catheterising 6 times again because you can't pee. I also pass blood clots and have blood in my urine, so I'll be getting a cystoscopy under general anaesthetic next week for my uro to investigate. He said, subject to what he finds in there, he may recommend hyperbaric oxygen therapy to help with healing.

smroush profile image
smroush

I had a partial resection, via the urethra, of a prostate cancer (PCa) tumor in my bladder in July 2012; I was 62 at that time. It was what led to a definitive PCa diagnosis. I think the purpose of the resection was two fold. The tumor was blocking one of my ureters (tubes from kidneys to bladder) and causing my right kidney to swell and hurt. The partial resection enabled them to place a kidney stent in order to maintain urine flow from the right kidney. The second purpose was they were able to get enough tissue from the kidney for a biopsy, leading to the definitive PCa diagnosis. I had kidney stents in for over 8 months until external beam radiation and ADT reduced the tumor size enough to remove the stents.

Viewing the procedure from 6.5 years later, it seemed fairly simply and straightforward. I had a catheter in for 3 or 4 days afterwards and had a steadily decreasing amount of blood in my urine for 10 or 12 days. I was a little weak and unsteady for the first day or two afterwards, but nothing too bad. Not too much pain, especially after the first 24 hours. It was all done on an out-patient basis. I had no radiation prior to the procedure, though I did several months later. I think I went back to work about 5 days after the procedure.

Best of luck to you!

geo52 profile image
geo52

Hey TK, the TURP is no big deal. I went home the same day. Was 100% blocked pee by cath only prior. When I went for a check up a few days later I was informed they found PC G4+3 and I needed radiation or surgery. NOW! So I elected RRP researching only the 2 modalities. Yeah, dumb but what did I know? I had the RRP 8/29 and am now in BRC very rapid doubling. My thinking is the TURP let the cells escape prior to RRP.

Note: I have had no as in 0 leakage from either procedure and pee like a 16 year old. Upcoming radiation may change that. The bad: instant ed post turp and retrograd orgasim...no change after RRP.

p3d1 profile image
p3d1

Hi Tak-Druk, I had a TURP in 10/17. It is not a nice experience but I am glad I had it. Apart from the need to clear the prostate of a "near" blockage, it provided enough material for genetic testing later. For some trials they need a blood (Genetic) and biopsy (Somatic) for testing. They will release you after the procedure when your retention is below a certain level. I was released the same day. Good luck if you decide to go ahead with it.

LVRob129 profile image
LVRob129

These guys are all being nice lol. I had TURP for a complete blockage post HIFU treatment. Previously treated with Proton Beam 7 years earlier. The operation itself is fine, I had a catheter for 5 days and the pain when they took that out was HUGE. I can pee now, have some stress incontinence still 7 months later.

The less they mess with stuff down there the better IMO.

Tak-Druk profile image
Tak-Druk in reply to LVRob129

Thanks for shooting straight. I was told it could actually result in some leakage because it would open up some of the constriction (that seems to wax and wane) through the prostate, and that the urethral sphincter might not be prepared for the newfound freedom and lack of back-up pressure. I'm still wavering, but leaning into the idea of this procedure. I think I just need to talk to the doctor a little bit more so that I can feel right about the decision before I go under; that way I can take the whatever consequences come without second guessing myself. Right now, I still feel like I just have some more questions I would like answered to feel more comfortable about it.

j-o-h-n profile image
j-o-h-n

Second opinion...ASAP (Again I don't trust anyone with a dash in his ID)

Good Luck, Good Health and Good Humor.

j-o-h-n Thursday 03/14/2019 7:17 PM DST

Tak-Druk profile image
Tak-Druk in reply to j-o-h-n

Right. I don't trust surgeons or people with dashes in their ID. Thanks! I think I will seek further info.

j-o-h-n profile image
j-o-h-n in reply to Tak-Druk

Okay TakDASHDruk, I haven't had a TURP but I did have the old fashioned RPD at a great hospital in NYC. - Sloan Kettering Memorial Cancer Center one of the best in the USA. If possible and practical try to get a second opinion there.

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 03/15/2019 11:53 PM DST

GeorgeGlass profile image
GeorgeGlass

what were the results? How are you doing? What did you do for treatment?

George

Tak-Druk profile image
Tak-Druk

Thanks for asking George... The procedure went well. I turns out that I had prostate cancer cells in the biopsy they took from my urethra.

My prostate was originally radiated with cyberknife, so it may not have successfully killed all the cancer (which is a bit of a moot point for me because it seems that my cancer had most likely already escaped my prostate before I had cyberknife); so this might give me pause if I was doing it over and looking for a curative alternative to RP.)

They scraped and cauterized during the procedure, so the bleeding and blood clots in my urine have stopped after the procedure. It seems like I had a weaker stream and a harder time pushing out my urine for at least 3 weeks after the procedure. I have also had a real extreme urgency to pee, so much that I have been going in parking lots and on the side of the road when it hits. But things are evening out and becoming more normal slowly over time.

The doc says there's not telling when prostate cancer may show up back in the urethra or bladder neck and cause problems... could be months, could be years.

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