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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 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

 
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