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Extended haematuria after RARP

User
Posted 23 Jul 2018 at 20:56

Hello All,


Brand new arrival on this forum though my PCa journey has been running for several months.


I've just turned 51 and have had prostate symptoms for decades, diagnosed as chronic prostatitis / enlarged prostate. Diagnosed with PCa in February this year having had further tests due to my Father being diagnosed (at stage 4) last year.  PSA as of last October was only 2.5.


Diagnosis by MRI and biopsy was organ-confined, small volume Gleeson 6 (3+3).


Long story short, I ended up opting to have a RARP, choosing the Retzius sparing method, done privately (work medical insurance finally paying off?) at London Bridge so that frozen section histology could be done while I was on the table.


Op itself seems to have gone well, disease was indeed organ confined, though Gleeson score ugraded to 7 (3+4) which I gather is very common, surgical margins considered negative.


Things become a bit less positive at this point.  Again, long story shortened, it seems I bled a reasonable amount during surgery, but continued to bleed afterwards.  This was not detected at the recovery hospital and I was discharged at the appointed time.  After a long and uncomfortable journey home, I went to bed to awaken after less than an hour with a blocked catheter and pain....  big pain.  Cue ambulance and local NHS to the rescue.  2 units of blood and 3 nights later I'm back home to try again.  Recovery is very slow - I'm flattened - can barely do stairs. 14 days after op it's time to try own plumbing.  Supra-pubic catheter turned off and for 10 hours or so, it works.  Then stops working..... catheter re-opened, works briefly then blocks and will not clear.  A & E again.....  They decide I have an infection.  Default antibiotic given, bladder/catheter flushed and sent home. Things get sore, then very sore, wee gets very cloudy, antibiotics not working.  It's the weekend....  Monday it is confirmed the culture shows infection and I have the wrong antibiotic.  Cipro is given and it works.  Yay!  Friday it's time to try the plumbing again.  It works..... and keeps working, though progressively more uncomfortable and wee very murky again.  Back to A & E on Saturday afternoon.... luckily there a football match on or something and it's really quiet! See the same excellent Doctor as last time, which is good news as the story is getting long.  Suspected continuing infection and Gentamicin IV....  Things mostly clear up, the plumbing keeps working and after a certain amount of negotiation the catheter is finally removed on the Wednesday, 27 days after the op.  Big Yay!  Only after it's been removed do you realise how much it's been poking the bladder, which is of course rather worse when the catheter is not being used as the bladder expands and contracts.


Meanwhile I've been growing some new blood and am now within sight of the normal zone.  I'm also starting to feeling like I might live, which is good.


However, the original theme of bleeding continues.  At no point since the operation has my urine been entirely blood-free.  Best was towards the end of my time on the catheter when I had finally left "rose" land and moved to "Chardonnay" land.  Even "Pinot Grigio" land if I drank enough, though always a return to "Rose" if I moved about much.


However, since returning to my own plumbing, there is blood every time.  The amount varies.  If I drink alot (>2L) and lie around all day then not so much.  If I spend much time standing or sitting upright (and I'm talking minutes, not hours) then I start to get sore and wee gets more discoloured.  Typically start of the stream will be murky brown, sometimes with small flakes or lumps, middle clearish and fresher, pinky stuff at the end, especially if I've been "active".  I'm also still prone to getting sore if "active", especially at the end of a wee.


Last two urine tests have grown nothing. I'm told that this is all "normal range".  A phrase I have come to dislike very much in the last 5 1/2 weeks because on two or three occasions now it has suddenly become "not normal".  


Also, as far as I can gather, most are relatively pain and blood-free quite soon after the op.  I am now 5 1/2 weeks post op and 2 1/2 weeks on my own plumbing......  Also, no noticeable improvement in the discomfort/blood situation in the last 10 days.  Indeed, the blood situation is probably a bit worse - most likely because I'm a bit more active than I was.


I realise that although it doesn't look great I'm probably not leaking very much blood.  However, I'm still taking it very easy indeed and time is passing.  My employer is getting restive, my wife is getting fed up.  At present it seems like if I were to be more active then I would bleed more, and possibly to the extent where clots might cause problems.  I really don't want to go there!


Really curious to know what your experiences are regarding bleeding/haematuria over the longer term are?


Thanks


 


Nick


 

User
Posted 16 Aug 2018 at 07:14

Hi Nick,


I had Retzius-sparing surgery on the NHS ten weeks ago. Not a trial, it’s available to anyone. Men, that is.....


I had rosé urine for only a couple of days in the piss-bag via the supra-pubic catheter, and then all clear Chardonnay once my natural tap was turned back on on day 10.


Around three weeks post-op, there was some brown urine (old blood) and lumpy blood clots passed, which came as a surprise, but I suppose that was just the internal wounds healing.


I spoke to the brilliant Professor E, who is the leading exponent of this procedure in Britain, last week, and he said he does not like or use the Hem-o-Lok clips referred to above. Those clips on occasion can ‘migrate’ and cause constriction and other problems with the urethra. The Prof says he uses good old dissolvable sutures instead. I think you may have had a different surgeon to me, as he doesn’t normally employ a urethral catheter.


The Retzius-sparing technique using laparoscopic robotics is an innovative procedure pioneered by Professor Bocciardi in Milan and Professor Rha in South Korea, Professor E learned from them both. Interestingly, Professor Rha is now experimenting with a potential rival to Da Vinci, a South Korea-made robotic system which is much cheaper. I think the makers of Da Vinci have something of a monopoly in the field.


Some surgeons say they miss the tactile element of open surgery, where they can feel any ’lumpy’ bits which may be cancerous requiring excision. This new robot features haptic feedback through the controls of the terminal, enabling the surgeon to ‘feel‘ around using the laparoscopic probes.


A PSA of <0.1 is the lowest the lab here in Coventry can test for, and is considered ‘undetectable‘, so yours at 0.01 is as good as it gets.


My continence is fine, but no sign of penile engorgement yet, although the nerves were spared on one side. Cialis 5mg daily has no effect.


I guess your long healing process is as much a result of your history of urinary problems as well as a consequence of your operation. Looks like you are on the mend at last anyway, and best of luck with that.


I sent a thank-you card to the Professor and his team at the Royal Surrey this week - the final line was ‘You or your sidekick Da Vinci owe me 2”!🤣’


Cheers, John

Edited by member 16 Aug 2018 at 08:13  | Reason: Not specified

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User
Posted 24 Jul 2018 at 00:28

There is little point in measuring yourself against most members on here since you have had what is still an experimental operation with only a couple of surgeons doing it in England and not so far available on the NHS outside of trial basis (I think). There are a couple of members on here that have recently had the same op as you but it sounds like you are unlucky and 18 months in, there is very little data on retzius-sparing post-op apart from what is published by the main urologist’s (who happens to be your surgeon, I think?) own company.

Edited by member 24 Jul 2018 at 00:32  | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 24 Jul 2018 at 00:30
PS a bit surprising that your employer and wife are twitchy. You have had major surgery and, depending on the type of employment, many find they need 8-12 weeks off work.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 24 Jul 2018 at 09:22

While I sort of take the point about the Retzius sparing technique still being unusual in th UK, I'm not sure it's relevant to my current situation.


Whether done from in front or behind, the end result is the same - a new joint between urethra and the bottom of the bladder. This might bleed, or not. From what I can gather, in most men it does not bleed for very long (days to weeks rather than weeks to months) unless they overdo things, and that is the clarification I'm seeking.


The stated advantage of the Retzius sparing approach is less damage to structures important to continence and potency and therefore gives better continence, especially early in the recovery process. Complications or not, I have no reason to doubt this is true as bladder control is good and was even at the first attempt after 2 weeks.


Complications likewise could have occurred with either approach. These do all stem from bleeding I believe and may prove to be the result of a familial blood disorder. This is being checked but the result won't be known for another couple of weeks. I've not had any issues previously though and I did have surgery last year, albeit less major.


Regards timescale, the issue is perhaps one of expectation versus reality. I feel I was led to believe that I'd be able to lead a fairly normal life and return to work within 4 to 5 weeks maximum, so that information fed through to those around me. Seems that this timescale is true for some, even most, though from my perspective now it seems somewhat incredible.


I remain very curious about others bleeding/haematuria experiences.


Nick

User
Posted 24 Jul 2018 at 10:38

Hi Nick, I had a laparoscopic radical prostatectomy in July 2015 and did experience some bleeding while the catheter was still in 10 days after the op, I had the catheter removed on day 11 and no further bleeding.


My overnight bag on day 10 was rouge so we went to the NHS hospital where I had the op and the duty urologist told me everything was fine and the blood on the bag was a clot breaking away. I had no further bleeding that day or overnight before the catheter was removed.


As far as work is concerned I was off for 12 weeks. I needed the rest and recuperation as my job involved being on my feet a lot.


I hope you get this sorted soon.


Ian


 

User
Posted 25 Jul 2018 at 09:23
Hi Ian,

Thanks for your reply.

That's the thing really - now 40 days post op and catheter out for 14. Still blood coming through....... not in big quantities for sure and haemoglobin still rising well, so presumably not seriously impeding general recovery. Doesn't encourage me to increase my activity levels though. Not talking about marathon training here, but it would be useful to be able to stand at my workbench for more than few minutes or walk more than a few hundred metres.

Recovery time will be whatever it is. Discussed with employer yesterday and he's fine with it. Seems another friend of his is having a much worse time of it and had to have an second operation to remove huge clots..... That's bad.....

Nick
User
Posted 25 Jul 2018 at 15:43
It isn’t “normal” at all - that join should be healed by now. Old (brown) blood and clots can come away for 2 - 4 weeks post-op and tend to look worse if you do too much but there shouldn’t be any new blood. How long before you see the surgeon for post-op review? I don’t think I would be waiting too much longer before I started pushing for further investigations in case the join has not healed or some blood vessel has been accidentally damaged.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 25 Jul 2018 at 16:20

I agree with Lyn. Get things checked out as soon as you can.


Take care.


Ian

User
Posted 25 Jul 2018 at 16:47

Nick


I assume that with having the Retzius option you also had the extra complication of a SPC and that could be a cause, as advised get it checked sooner that later. Not sure if the Retzius option uses the Da Vinci kit, although fairly rare you could have a surgical clip migrating into the bladder or anastomosis.


Thanks Chris

User
Posted 25 Jul 2018 at 18:25
Thanks all. My feeling also is that while my situation might just about be within the "normal range" as I'm being told, it is on the edge of it and certainly not typical.

I did have a cystogram done before the SPC was removed and that was apparently ok.

Has been even murkier than "usual" today but mostly brownish with small dark lumps and flakes, so potentially clearance of historical leakage. Seems late for big clots to be breaking/clearing though? Not sure how long the blood has to hang around before it goes brown and flakey?

Will certainly contact the surgeon again and there has been talk with GP about bringing the next review forward. GP had a pretty grim looking sample last Friday but was fairly unimpressed. Comment was along the lines of "so it's got some blood in it...... but it didn't grow anything, and you had major surgery so we are not worried"

Retzius sparing is done with the DaVinci - indeed is only possible with it. Yes, SPC. Didn't like it much and it caused a fair amount of grief, but then I've never had the other sort to compare it to. Immediately felt better when it was removed.

Nick
User
Posted 15 Aug 2018 at 17:07
Update on this.

Contacted the surgeon again after my last post.He advised that the cystogram done pre catheter removal had shown a small defect (void) in the join, thought to be the result of the original bleed. This is considered small enough to be safe to leave to sort itself but is the reason for continued haematuria, (mostly) old blood from the void, and the discomfort. So although I'm a bit special (again), I was advised not to fret and carry on doing as much as I felt able.

For about a week nothing much changed, then I found I was able to do more without getting sore, even though it made the output murkier, if not downright lumpy at times. Then, about 5 days ago, the amount of blood decreased suddenly and although there is still a bit of discolouration if I've been "active", and even the odd black flake, my wee now looks like wee again - which is nice!

Meanwhile I can now manage a whole morning "vertical" if I don't jump about too much and can even manage a bit more later on if I lie down for an hour or so. May not sound like much, but this is progress and the rate of improvement seems to be increasing too.

Also got the result of first post-PSA test (8.5 weeks post op), which is 0.01 ug/l. Not zero, but not sure how the reporting works - perhaps it's as low as they go....?

Seeing the surgeon in person in a few days so all should be explained.......

Nick
User
Posted 15 Aug 2018 at 18:27

This all seems very positive Nick and good progress is being made.


I hope the appointment with the surgeon goes well.


I would consider a PSA of 0.01 as being undetectable but I will defer to others to confirm.


All the best,


Ian

User
Posted 15 Aug 2018 at 23:29

Nick


Pleased to hear things are beginning to settle down. A PSA of 0.01 has got to be considered very good news .


Thanks Chris

User
Posted 16 Aug 2018 at 07:14

Hi Nick,


I had Retzius-sparing surgery on the NHS ten weeks ago. Not a trial, it’s available to anyone. Men, that is.....


I had rosé urine for only a couple of days in the piss-bag via the supra-pubic catheter, and then all clear Chardonnay once my natural tap was turned back on on day 10.


Around three weeks post-op, there was some brown urine (old blood) and lumpy blood clots passed, which came as a surprise, but I suppose that was just the internal wounds healing.


I spoke to the brilliant Professor E, who is the leading exponent of this procedure in Britain, last week, and he said he does not like or use the Hem-o-Lok clips referred to above. Those clips on occasion can ‘migrate’ and cause constriction and other problems with the urethra. The Prof says he uses good old dissolvable sutures instead. I think you may have had a different surgeon to me, as he doesn’t normally employ a urethral catheter.


The Retzius-sparing technique using laparoscopic robotics is an innovative procedure pioneered by Professor Bocciardi in Milan and Professor Rha in South Korea, Professor E learned from them both. Interestingly, Professor Rha is now experimenting with a potential rival to Da Vinci, a South Korea-made robotic system which is much cheaper. I think the makers of Da Vinci have something of a monopoly in the field.


Some surgeons say they miss the tactile element of open surgery, where they can feel any ’lumpy’ bits which may be cancerous requiring excision. This new robot features haptic feedback through the controls of the terminal, enabling the surgeon to ‘feel‘ around using the laparoscopic probes.


A PSA of <0.1 is the lowest the lab here in Coventry can test for, and is considered ‘undetectable‘, so yours at 0.01 is as good as it gets.


My continence is fine, but no sign of penile engorgement yet, although the nerves were spared on one side. Cialis 5mg daily has no effect.


I guess your long healing process is as much a result of your history of urinary problems as well as a consequence of your operation. Looks like you are on the mend at last anyway, and best of luck with that.


I sent a thank-you card to the Professor and his team at the Royal Surrey this week - the final line was ‘You or your sidekick Da Vinci owe me 2”!🤣’


Cheers, John

Edited by member 16 Aug 2018 at 08:13  | Reason: Not specified

User
Posted 16 Aug 2018 at 08:52

Just be careful with the pump (if you don't have one ask the doc about it!)  I started with one as instructed and caused a bleed!  Rang the nurse and she said I was over doing it! Women have no idea - I guess what you don't have you can't miss! 


Lots of posts on supersensitive PSA results on here and on USA sites. 0.01 is not undetectable in supersensitive terms but is with the older 0.1 measure. 8 weeks after surgery it's a good result - a less than 0.01 will be even better at 6 months post op.


Ask your surgeon about why he uses supersensitive AND what he considers to be success and when he (or she! ) would consider ajuvant or salvage RT. Please post the response here..


 


 

User
Posted 16 Aug 2018 at 09:56
Thanks for all responses.

Ian, Chris, This is what I want to hear..... hope it's true!

John, Thanks for your long and considered reply. I've also been following your beautifully written personal account with interest and not a little dark amusement. The bit about the unauthorised "Brazilian" made me laugh out loud at a time when laughs were scarce. Had a parallel experience so could relate! We are talking about the same man. I did discover later that I might well have been able get Retzius sparing done on the NHS by him. As it turned out the Urology consultant who supervised my secondary recovery at my local hospital knows him reasonably well...... unfortunately that consultant was not the one I saw when treatment options were being discussed! Especially since I was already strongly leaning towards RS and naming names. Wouldn't have had the added benefit of "live histology" that way though.
Believe some clips were used somewhere (possibly due to the additional challenge presented by my 60cc prostate), as their presence, and correct location was mentioned following my precautionary post-bleed CT scan and also discussed pre-MRI. The MRI was a later side-trip to look at the "incidentalomas" the CT scan noted in my liver...... Those turned out to be haemangiomas and of no further interest, but added unwanted anxiety for a couple of weeks.
As said before, complications aside, I've no complaints about the outcome so far, especially with the low PSA, as the original aims of the op are being met. PCa control seems good, bladder function is good with minimal leakage (used smallest pads for the first week but didn't really need them, not used them since). ED..... well yes. There are signs of life, and were from a very early stage, but not quite enough to be actually useful. This without any assistance, chemical or mechanical.

Francij, pump? Hoping not to need to go there.........
I will ask about super sensitive PSA, and where the boundaries are thought to be, but have read elsewhere that our man is not a believer. Not sure why.

Nick
User
Posted 16 Aug 2018 at 10:37

Our surgeon says he’s not a believer in super-sensitive PSA assays, and dependent on what the two oncologists I intend to see have to say, I will not be having any chemical castration or ray-gun attack as long as my PSA remains ‘undetectable’ at <0.1!


Intriguingly, when I asked him where in the world he would undergo prostate surgery if he had to have it, he mentioned the Martini-Klinik in Hamburg, and Professor Haese in particular. According to their website, they do not appear to offer a Retzius-saving procedure!

Edited by member 16 Aug 2018 at 12:44  | Reason: Not specified

User
Posted 17 Aug 2018 at 00:01

Re pump - if you are no longer getting regular hard erections apparently you **** will shrivel and drop off (exaggeration! )  . The pump provides valuable re-hab and is I believe recommended for all post op patients.


Re supersensitive 0.01 IS supersensitive?

Edited by moderator 17 Aug 2018 at 00:16  | Reason: Language

User
Posted 08 Sep 2018 at 10:46
An update following a meeting with the surgeon.

The reason for the prolonged haematuria and discomfort has been discussed and explained at length. As mentioned before, there was some damage to the anastomosis caused by the post op bleed. This caused a void which was filled with a big blood clot. The blood I was seeing was mostly old blood from this clot breaking down and washing out. Now the clot has gone the void should resolve without any further intervention. There was/is as further blood clot under the bladder sitting on the pelvic floor which is not open to the bladder. This will gradually dissolve-absorb but is the reason for continuing (though now much reduced) discomfort after long periods stood or sat upright. This should be fully resolved within the next two to three months. Would have been nice to have this explained at the beginning (or at least after the cystogram) but never mind.......

Re the original purpose of the mission - cancer control, the news is good.
Small cancer, well inside a big prostate. All surgical margins negative. Final Gleesons of 3+4=7 which was a 1 point increase from the original biopsy and a very common finding. PSA 0.01, or maybe less than as the surgery results interface I view the results on doesn't seem to do symbols. Anyway, he's content with the result and is not a fan of super-sensitive testing as he considers "noise" to be an issue and all to frequently a cause of unneeded concern.

Testing of PSA to be 3 monthly for a couple of years but it is considered unlikely to show any change. Hope that proves true. They don't use the cure word but 95% probability of extended remission will hopefully suffice!

ED.... Sildanafil works consistently but I can't say I enjoy the side effects, which resemble a bilateral migraine, though mercifully only 3 - 4 hour duration (I'm all to familiar with migraine but usually unilateral and 24 - 30 hours). Significantly reducing the dosage has helped the side effects without loss of the desired effect. There has been the occasional success without drugs but certainly not reliable although this does seem be improving.

So, very successful overall. As bladder control/continence is not an issue and hasn't been from the beginning, I consider that the Retzius-sparing technique has delivered on its primary promise. Another observation is that my flow and control are already actually better than they were pre-op (due to the large prostate I assume) so, if the the ED fully resolves I could actually come out ahead......

This I think would be the result of:
Unusually early identification. (Due to long term prostate symptoms, non-cancer related and family history)
Prompt surgery
Retzius sparing approach by one the best surgeons in the land

This not to sound smug or to say that I'd necessarily recommend my exact route (the last 3 months have been tough), but more to reassure those still considering their options that surgery can deliver excellent results in a relatively short time.

Thanks for all the support advice received here. It's a great resource and I wish I'd found it a bit sooner.

Nick
User
Posted 08 Sep 2018 at 11:09
Hi Nick,

Very pleased for you. I was told by the oncologist this week I am cured, although my prognosis is not quite as rosy as yours because there was lymph node involvement. We’ll see.

Try Cialis (Tadalafil) instead of Sildenafil. Both I and a friend suffered nausea when we tried Viagra.

Very pleased to have found my way to that brilliant surgeon, Professor Whocannotbenamed, who I guess did you.
User
Posted 08 Sep 2018 at 17:14

Great news and overall Nick.


Thanks for the update.

 
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