Update on my post RALP

User

Posted 04 Mar 2021 at 21:17

A little update on my situation 3 weeks post RALP...

First week home was a bit tricky and started with the four hour trip from the hospital. Can't say the UK roads are particularly friendly to post prostatectomy patients!

Getting used to the catheter being in 24/7 with a leg bag and night bag didn't take too long and I got used to emptying it regularly. I had a few issues after a couple of days that turned out to be my bowels causing the urine flow to slow dramatically as I was constipated. Took five days to go and it was very painful but after that urine flowed freely and I had little if any blood or debris.

I had the catheter 14 days and I was pretty fed up by the end of it. Having it out wasn't too bad, I've had them before when I had heart surgery so I knew what to expect... A short sharp yank! But I wasn't prepared for the leakage that happened immediately. Luckily I could pass urine even if it was small amounts.

Week three saw me trying to get used to the new incontinence issues, dealing with a Covid Vaccination that knocked me for six for four days and the onset of a possible infection. I'm now passing lots of debris and occasional blood. Some of the debris is quite large and definitely felt as it passes out. I'm on antibiotics as a precaution whilst the urine is analysed at the lab so I may need additional different antibiotics next week.

Mentally I'm tired as I've had to deal with all the prostate stress and side effects, a pretty awful vaccination experience and intermittent issues with my cardiac stuff. I'm not sleeping great due to feeling rubbish, having to get up and pee in the night and my mind not wanting to shut off.

I'm currently trying to sort out whether my GP is able to get a super sensitive PSA test for me which is what Charing Cross are asking for. I don't really want to have to spend eight hours in a car to get a 5 minute blood test in London if I can help it.

I'm doing pelvic floor exercises and using the squeezy app to track them. So far there's little if any improvement.

I'm wondering anyone else had large amounts of debris (I assume scabs and tissues from the various cuts) If so how long for?

Anyone had issues getting a super sensitive PSA test?

Long road ahead...

Edited by member 05 Mar 2021 at 01:21 | Reason: Typos

User

Posted 04 Mar 2021 at 23:19

Thanks for the update. I found going to my local hospital for tests a pain and that was only half an hour away, the idea of a four hour trip to London just for a blood test is terrible.

Dave

User

Posted 04 Mar 2021 at 23:50

I had debris for about 8 days while the catheter was in, but that largely cleared before it was taken out. I did get an infection, but that didn't seem to cause much change on the debris front. I didn't get the impression they were related.

Did you start the pelvic floor exercises before the RALP?

User

Posted 05 Mar 2021 at 00:12

I think ultra-sensitive tests are getting harder to source - they have been rather discredited so many labs have dropped them. No NHS hospital in our area offers them any more and our two local private hospitals both send the samples to the NHS hospital lab for processing.

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

User

Posted 05 Mar 2021 at 05:51

Why do you want a super-sensitive assay test so soon after your surgery? My surgeon and two oncologists told me they cause more worry than they are worth!

Our Matron, Lyn, above, will tell you pregnant / lactating (or something) and post-orgasmic women can apparently display PSA levels detectable in a super-sensitive test, so unless you are one of them, dismiss the idea.

Anyway, my local hospital only tests to 0.1 and even the premier cancer hospital in Britain, the Royal Marsden only tests to 0.04!

Wait three months post-op and have a normal PSA test at your GP, hospital, or where I live, in one of many local pharmacies. All the samples go to the same lab anyway.

Of course you will have haematuria and pass clots after surgery, but mine were never so large that I could feel them passing. Keep expecting something similar until all your external wounds are healed.

Best of luck.

Cheers, John.

User

Posted 05 Mar 2021 at 08:10

Originally Posted by: Online Community Member

Why do you want a super-sensitive assay test so soon after your surgery? My surgeon and two oncologists told me they cause more worry than they are worth!

Our Matron, Lyn, above, will tell you pregnant / lactating (or something) and post-orgasmic women can apparently display PSA levels detectable in a super-sensitive test, so unless you are one of them, dismiss the idea.

Anyway, my local hospital only tests to 0.1 and even the premier cancer hospital in Britain, the Royal Marsden only tests to 0.04!

Wait three months post-op and have a normal PSA test at your GP, hospital, or where I live, in one of many local pharmacies. All the samples go to the same lab anyway.

Of course you will have haematuria and pass clots after surgery, but mine were never so large that I could feel them passing. Keep expecting something similar until all your external wounds are healed.

Best of luck.

Cheers, John.

Hi John, the test is at the request of the surgeon at Charing Cross Hospital and will need to be done approx 5 weeks post surgery ready for my first review with him six weeks after the surgery. I assume this is standard practice at least at Charing Cross. (Anyone else had their RALP there?)

Regarding the clots etc.. I did end up finding several posts last night published by various hospitals that indicates it's not uncommon to have blood and clots passing for up to six weeks. Since I'm at week three I guess I shouldn't worry unless I get lots of fresh bright blood.

Cheers.

User

Posted 06 Mar 2021 at 11:01

Hi Chris,

I was still passing debris at four weeks post op.

As for my cuts, the biggest scab clung on until 4 to 5 weeks. (I had another one that took longer because it opened up after the staples were removed).

You're right, it's a long road ahead and mentally tiring, but there's fantastic support from everyone on this site.

Good luck with your recovery.

Kev.

User

Posted 10 Mar 2021 at 18:23

Sounds like a good recovery thus far. I had the same surgeon as Bollinge. I’ve had sensitive test every 3 months since surgery via my GP. Only because the lab at the local NHS hospital uses it by default. First three were <0.006 but my GP reported it as <0.01 until I learnt to ask for a copy of the blood report. Last one in November (12 month) was 0.007 so did raise an eyebrow although hoping it’s error or noise at this level although not a lot is done until you hit around 0.2. Got my next PSA on Monday just to check it was noise and not a general trend. I’m somewhat leaning towards Bollinge’s view of ignorance is bliss abs have the standard test as it does cause stress that’s for sure 🥶🤷🏼‍♂️👀

as you say debris and blood are are to be expected at this stage with twoc. I was always dry at night post TWOC albeit couple of nocturnal incidents after a barrel of beer. I wasn’t totally dry until 5/6 weeks. Mostly got slight drip/leak for first few weeks at the end of the day when tired. Pleased to report all settled after that. Slight hiccup at about six months with caffeine triggering retention but stopping caffeine drinks sorted that. Onwards and upwards! :-)

Notification

Join the online community now.