Post surgery confusion!

User

Posted 04 Jan 2022 at 11:38

Hi everyone

My OH had RARP on Dec 8. TWOC 7 days later on Dec 15. Went back in on 17 Dec as his flow was very weak.

On 24 Dec his urine was very bloody and he went into retention and had to be back in hospital for catheter fitted on Xmas Day. Catheter removed on 30 Dec but the same thing happened. His urine became very bloody with clots and he went into retention again on New Year's Eve. Back in hospital New Year's Day for another catheter fitted which has now to be in for 2 weeks.

Throughout this whole process no one has really told us what is going on or why this is happening. My OH didn't even speak to his surgeon following the op. This morning I rang up to try and get some answers and someone from the urology dept rang us back (don't think he was a consultant or a surgeon) and told us that my OH had had a major operation and this could be expected when you have had bladder neck reconstruction. I was very shocked cos we had no idea of this. We thought bladder neck reconstruction only had to be done on a small number of cases and if it had been carried out, we assumed that we would have been told. The urologist told us that everyone has bladder reconstruction as part of RARP when the urethra is stitched back onto the bladder. I'm very confused! Anyone on here any ideas?

Also, is this level of (non) communication between hospital and patient to be expected and the same experience for others? We just feel totally in the dark about everything! Maybe we're asking too much to ask what's going on. I know the NHS is under enormous strain due to Covid atm.

We've got an appointment on Jan 13 for histology etc so hopefully we might get some more answers then. If there's any questions we should be asking at that meeting, please feel free to advise. I am all ears! This whole process has been a bit overwhelming for us and although I plunged myself into research after diagnosis, post op I'm now feeling a bit burnt out and "at sea"!

This forum and the friendly advice offered has been invaluable for me and my husband.

User

Posted 04 Jan 2022 at 12:35

I agree: it's confusing. As you say, the urether is stitched onto the bladder so there is always some BNR. It varies in degree. Mine was large due to a large median lobe. But the effect is the same: it made no odds. The issue is not so much the bladder (it can be twitchy, but that settles) but the other end, the urethra, with about 10mm used up by stitches. It's that recovering that drives continence. For me, a week with a catheter is at the short end: there are clots to pass etc. So putting it back in is not the end of the world and as the urethra heals, this is less time spent leaking, in all likelihood.

I suspect OH DID speak to the surgeon but the GA washed it away. I took notes and for my first post-op the surgeon wrote *** was here. Of other procedures where I did not do this - nothing. In other words, breathe a bit and as you are doing, look to the next meeting. Maybe start it with a laugh about forgetting the post-op (and make him or her cover if necessary) rather than leading with the chin and getting a poke "I did come" etc.

Now, for that histology report, hope for the best and prepare for the worst. It should be OK but these meetings can be very disappointing: mine was a horror story of EPE, upgrade, upstage, you name it, and with 4+3 bilateral, OH might need more treatment at some point. The surgeon will no doubt soothe and reassure, but come away with the name of the ART/SRT specialist you might be seeing as when and if. Frankly these surgeons overstay their welcome: IMO followups should always be with RT people. Hard to influence in that direction until the PSA rises or whatever but good to go in that direction. What is a surgeon going to do with recurrence? Good luck with the histology. ADD - as well as horror stories, downgrades do happen so it really is a bit of luck now. END ADD

Edited by member 04 Jan 2022 at 12:39 | Reason: add

User

Posted 04 Jan 2022 at 12:39

It is just one of the risks of the operation - some people are totally incontinent, some people go into retention and keep having to have the catheter put back in, some people have no problems.

There are two kinds of bladder neck reconstruction - the one that all men have as part of RP (they cut the urethra to remove the prostate and then reattach the remaining bit of the urethra to the bladder) or the kind that my husband had (the cancer had spread to the bottom of the bladder so they had to remove a bit and do a re-design.

I think that hospitals vary enormously in terms of aftercare. Some men here get immediate support from their district nursing team or GP while others have no contact with the hospital from being sent home until the follow up appointment with the surgeon at 6-8 weeks post-op. We didn't have any contact with anyone but J didn't have any problems so I can't say it struck us at the time. Your experience is a really good example of why travelling a long way away for the op can be problematic - imagine if you were having to go up & down to London for all these issues!

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

User

Posted 05 Jan 2022 at 23:25

Hiya - Per google - "Tamsulosin helps relax the muscles in the prostate and the opening of the bladder. This may help increase the flow of urine or decrease the symptoms". :)
If you google 'what does tamsulosin do' you will get a whole heap of info about it.
I've been on it for a number of years now and not had any issues with it personally - I'm also on Solifenacin for an overactive bladder; the 2 together have helped improve my flow no end tbf.....was waiting for minutes for something to happen, only getting a dribble, stop/start, p-ing 4 or 5 times in a couple of hours etc etc....alongside taking those (both once per day) I've also reduced my caffeine/fizzy drinks intake etc, anything that might irritate the bladder.

Obviously, your current circumstances are a lot different to mine though.

Good Luck!
Nick

Edited by member 05 Jan 2022 at 23:26 | Reason: Additional info

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User

Posted 04 Jan 2022 at 12:35

Edited by member 04 Jan 2022 at 12:39 | Reason: add

User

Posted 04 Jan 2022 at 12:39

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

User

Posted 04 Jan 2022 at 17:05

Thanks SUM good advice and perhaps the best way to approach things going forward. I don't blame the staff for being busy etc but it's just so hard when you're having to live through it and don't know what is going on/what the long term implications could be. I guess it's hard dealing with uncertainty which is where we are now. Out of interest what is an ART/SRT specialist?? I'm finding it hard to keep up with all the acronyms! Thanks again for your time replying

User

Posted 04 Jan 2022 at 17:17

Thanks Lyn useful info. They were probably referring just to the general reconstruction as part of the op then, rather than any specific bladder reconstruction work.

I know what you mean about being treated outside the area you live. We definitely have no regrets in going outside of area as our Trust is currently in Special Measures with a damning recent investigation and report into their Urology Dept. But I certainly wouldn't have wanted to travel further out of area than we did. One and a half hours away is quite far enough! It's manageable though and I think just the number of complications and having to go into hospital on both Christmas and New Year's Day (especially when we have a young child) was the thing that was really stressful for us, rather than the location.

If we had have chosen to be treated in London, we would definitely have sought accommodation in London for three weeks after the op to be near to the hospital, but for my OH we're nearly 4 weeks post op now and still problems. So yeah, your point about choosing treatment near to where you live is really valid. I definitely wouldn't recommend anyone to do a "hit and run" RARP at a major centre and go home the day after without appropriate aftercare nearby. We assumed everything would be fine after the op and it would just be a matter of recovery. But this hasn't been the case.

User

Posted 04 Jan 2022 at 18:10

Sorry: you had me googling TWOC and opened the acronym door: adjuvant or salvage radiotherapy. We’re all dealing with uncertainty, and it stinks. I don’t like people mimimising prostate cancer, but on the bright side that uncertainty does mean hope as opposed to some others.

User

Posted 04 Jan 2022 at 18:57

Thanks SUM. Yeah I only just learnt TWOC! 🤣 Good to learn another new one! Wishing you all the best and yes I think it’s the uncertainty that’s the worst thing

User

Posted 05 Jan 2022 at 02:41

I heard the acronym TWOC about 20 years ago. It means Taking WithOut Consent (stealing or joy riding a motor vehicle). When I got a referral for a TWOC, I was mighty confused.

Dave

User

Posted 05 Jan 2022 at 07:45

😂😂 Brilliant Dave!

User

Posted 05 Jan 2022 at 20:34

OH just had phone call from urology nurse to say that consultant has prescribed my OH Tamsulosin (to relax his pelvic floor muscles) to be taken 2 days before catheter removal. Has anyone else had any experience with this drug? My husband was surprised his consultant prescribed it because in my OH's opinion the retention was due to clots because his urine was very bloody w clots. However, there was no mention of this in his notes. At first his flow was very slow after initial catheter removal and then improved a lot before the blood/clots started and he went into retention (which happened twice). We're certainly no experts and don't want to go against what the consultant is saying but I'm not sure the consultant is aware of the full picture as my OH was admitted twice over the Xmas holidays and has not seen or spoken to my husband since the op. Husband not v keen on taking this Tamsulosin stuff as he doesn't think it's a pelvic floor muscle thing and doesn't want to weaken his pelvic floor if that's not what the problem is. No idea what to do 🤷🏼‍♀️ So just posting on here because that's what you do when you're completely clueless! 😂

User

Posted 05 Jan 2022 at 23:25

Obviously, your current circumstances are a lot different to mine though.

Good Luck!
Nick

Edited by member 05 Jan 2022 at 23:26 | Reason: Additional info

User

Posted 05 Jan 2022 at 23:26

RobotA

I went into retention on and off for three days after a dilatation to the scar tissue at my anastomosis/ joint. I have never gone into retention because of clots, debris or even a kidney stone.

Thanks Chris

User

Posted 06 Jan 2022 at 01:05

I think the surgeon does know what has gone on as he is clearly aware that there is a TWOC planned for much later than anticipated. Best to take the Tamsulosin as directed - urologists usually know what's what.

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

User

Posted 06 Jan 2022 at 08:02

Thanks Nick, Chris, Lyn. All good to know. And reassuring. I think maybe we are questioning things too much. I think dealings with our local trust and the subsequent damning reports about their urology dept have left their mark on us, which means we’re now questioning everything! In our Trust a man with prostate cancer had months to live because our Trust’s urology dept didn’t give him the right scan. They also needlessly removed the testicles of a man in his 20s. It’s frightening stuff. We also had a bit of an ordeal with getting a timely diagnosis so I think unfortunately it’s knocked us a bit and makes us question everything, even through we’ve now moved to a much better Trust. I don’t think the hospital visits over Xmas and NY (when urology dept was shut) has helped matters because we’ve not really had much info as to what is going on. But yes we should leave it to the professionals and just take the drugs! Thanks everyone.

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