Extended haematuria after RARP

User

Posted 08 Sep 2018 at 16:14

Great news and overall Nick.

Thanks for the update.

Ido4

User

Posted 16 Nov 2018 at 12:52

Second post-op PSA results just in @ 0.02. Previous result 3 months ago was 0.01.

Noise or doubling, who can say. Probably have to wait another three months for the answer. Could be worse but not what I was looking for.

Nick

User

Posted 16 Nov 2018 at 13:01

I know how upsetting any increase can be. In this case I will put my science hat on. Your original 0.01 could have been 0.014 for example and the machine will read 0.01. The second reading could be 0.015 but the machine reads 0.02. You would have to see a continuing rise to suspect anything is going on.
I would hope it’s just “noise” as the machine might give three slightly different readings if repeated for the same sample even, especially at very low levels.
I sincerely hope that’s all it is.
Ian

Ido4

User

Posted 16 Nov 2018 at 14:16

Well, Nick, here at our billion-pound super-hospital here in Coventry the lowest PSA they test to is <0.1.

I had a test at the Royal Marsden a week or two ago and the lowest they go to there is <0.04, which was my reading 🤞🍾😁.

So basically, we have had the op done by the ‘best’ surgeon (based on a cohort of four or five here), and you and I are in the clear, so I suggest you worry about something else......for now🤞.

How is your continence presently and is there any sign of life down below, if you don’t mind me asking?

My continenence is fine, but my old man, what’s left of him, is in hibernation. Getting a pump to maybe wake him up. Am I bovvered? No.

Best of luck for the future.

Cheers, John.

Edited by member 01 Jun 2019 at 16:17 | Reason: Not specified

User

Posted 16 Nov 2018 at 16:34

Thanks gents. Ian, I particularly like your science hat! I’m not panic stricken, but as one of nature’s worriers another 0.01 would have been much easier to live with!

Continence is fine. I still know it in terms of discomfort and feelings of err, uncertainty, if I’ve had a long hard day. Difference is, whereas a hard day was 30 minutes vertical, I have recently survived (just) 11 hours wandering around Seville with about 9 of those on my feet. My feet were shouting for mercy too!

As regards ED, I was double nerve-sparing and have had signs of life from very early on. Now, it is occasionally possible to get just enough without any chemical or mechanical aid, though unreliable and short-lived. Sildanafil 25mg is reliably effective, but with unpleasant side effects. Tildanafil 10mg is less reliably effective but does have some effect (usually enough) and much less side effects. It also seems to last 24 - 36 hours. Can’t say I’ve noticed very much change in the last couple of months.

Cheers

Nick

User

Posted 28 Nov 2018 at 20:42

Had my consult with the Prof.

He was unbothered by the PSA result. Noise. Doesn’t like the super sensitive test for this reason.

Fair enough. So long as it’s not 0.04 in three months time!

Nick

User

Posted 18 May 2019 at 12:39

Just to bring this up to date.

Two more PSA tests at 3 month intervals, both 0.02. Test interval now extended to 6 months.

Continence fine. ED...... well not fully reliable but some action usually possible without drug assistance. Better results possible with drugs but not convinced it’s worth the resulting hangover.....

I’m content with the outcome so far.

Nick

User

Posted 01 Jun 2019 at 14:49

Hi Nick, reading this with interest as your story similar to mine...and same surgeon!

The blood issue for me seems to be a large hematoma (sp?) That is pushing my bladder to the size of a squashed teabag! I had another CT scan 2 months post op as I had a lot of discomfort and when they showed me the scan (I wasn't quite ready for it) my bladder was tiny and there was a huge lump about the size of a coconut. Before nearly fainting I was told the body will reabsorb and not to worry! I think it was bleeding as a result of the clexane injections I had to administer for 4 weeks (they don't do this in the US) and there is some agreement this was the case. My own progress was hindered by cellulitis and a continuing reaction to an antibiotic but I am curious when you mention bleeding, were you on the Clexane too?

Rgds,

Mark

User

Posted 02 Jun 2019 at 10:08

Hi Mark,

Yes, I was also very struck with the similarities between our experiences. Same surgeon, same hospital, same (more of less) issues.

My issues were down to a large prostate complicating the surgery and at least one blood vessel left unsealed. In my case the leak was right on the new joint which led to some damage to it, creating a "void" plus a massive haematoma partly inside and partly outside the bladder.

I was operated on a Thursday and was taught to self inject clexane on the Friday and then again on the Sturday morning before being discharged. On both occasions I commented that I was unhappy about taking anti-coagulants when I was pretty sure I was still bleeding quite alot (wee like tomato juice in spite of large output) - made no odds!

However, as I was admitted to my local hospital that evening via A & E and they quickly realised that my main issue was blood loss - no more clexane after that!

I do fully understand the reasons for the clexane - post surgery blood clots are BAD, but obviously there needs to be some confidence that there are no internal leaks left and I did feel that there was a distinct lack of concern and curiosity at the recovery hospital about whether I might have any leaks.......

The part of the blood clot inside my bladder was responsible for the "extended haematuria" of the thread title - would have been useful to have had this explained early on though. This is long gone. I am curious about what has happened to the part that was outside my bladder though. I didn't see the scan results but the urologist at the second hospital was impressed with it's size. Things still don't feel entirely normal in that area though everything basically works..... There doesn't seem to be any curiosity about it in the medical profession though. Hopefully the healing process continues!

Nick

User

Posted 02 Jun 2019 at 13:44

Not all hospitals require all men to have clexane post-op - some prescribe it only on a case-by-case basis. In John's case, they said his blood was already good so risk of DVT was very low. It surprises me that some hospitals just give it routinely to all surgery patients!

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 02 Jun 2019 at 15:58

I am also surprised that Clexane was demanded in my case. I was told I had to do it or 'risk' PE and that is deadly! Same when I got the cellulitis - 3 antibiotics for a skin infection as there is a fear of sepsis etc. Now I am dealing with a large 'collection' in my groin and probable 'floxing' which is no picnic (burning skin, fatigue, blurred vision etc etc).

Is there just a 'one size fits all' approach or is there a danger of 'over-medication' as 98/100 people have no adverse reaction? My bloods were good but I was told to take all this stuff without anyone mentioning an opposing view. It has made me very vigilant now on what goes in my body, and reading the tablet documentation is very important. Before I was very flippant on this as I assumed that 'all pills' have a long list of reactions and 'whatever' but now I take things more seriously!

User

Posted 02 Jun 2019 at 16:35

It seems to be becoming more of a ‘one size fits all’ but as I said, not all hospitals do it so there must be some variation between CCGs / trusts.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 27 Sep 2019 at 08:38

John,

Just picked up the thread ref hem-o-lok....some interesting points. I note the prof who cannotbenamedonhere website features a recent video using the clips during RARP op.

Useful heads-up and another for the list of Q’s when appropriate to raise.

cheers

Edited by member 27 Sep 2019 at 09:00 | Reason: Not specified

User

Posted 27 Sep 2019 at 08:49

The Prof told me last year he doesn’t use Hem-o-Lok clips at all. It seems you’re doing your homework like I did.

Cheers, John

User

Posted 27 Sep 2019 at 09:02

Thanks John

My home office is evolving into ‘google’ for urology 🥴🤷🏼‍♂️🤖

best

User

Posted 11 Dec 2019 at 19:10

Another PSA test...... always a tense time....... 0.02 again. Phew! Happy with that.

Nick

User

Posted 11 Dec 2019 at 19:39

Best Xmas present ever! Excellent news and hope you can enjoy the holiday season to its fullest extent.

User

Posted 11 Dec 2019 at 19:58

Indeed!
Hope your recovery continues to go well so you can have a great Holiday season too!

User

Posted 11 Dec 2019 at 20:06

Thanks Nikko Catheter our tomorrow so will test some vin towards end of next week once I’ve given the urethra a good three weeks to heal.

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