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User
Posted 09 Jul 2024 at 21:49

So it’s all booked and confirmed. Pre-op meeting on Thursday, surgery next Wednesday, TWOC on 25th and pathology results on 29th. One of the benefits of luckily managing to go private, is apparently a much speedier process.

Trying to get to grips with the pelvic floor exercises. I’ve downloaded the Squeezy App, which is great for prompting you.

Only partially nerve sparing at best unfortunately, and non retzius sparing, but such is life.

14 months into this process now, and it’s starting to feel more than a little daunting.

User
Posted 27 Jul 2024 at 10:47

Hi Ian

yes, the first week of incontinence is the worst as it’s not what you expect (even though you read about it and think you’re prepared).  Then you kind of adjust and learn how to cope. Keep doing the pelvic floors, really important, and, keep your chin up and try and stay positive! Steve had been incontinent for six months post op now and although he does have his down moments, we are ever hopeful it is going to improve and we are getting on with life! You do learn how to adjust!

fingers crossed you have a quick improvement

 

Debbie

User
Posted 23 Sep 2024 at 13:44

I went back to work after 7 weeks in early June like you a desk job and it was probably October before my stamina and energy levels were back to something resembling normality. I was really surprised at how long it took to recover. I was luckily as well because I had the scope to come in later and finish earlier. Good luck with the recovery and remember listen to your body don’t push it too much too soon. 

User
Posted 09 Jul 2024 at 22:14

You'll be okay pal. I'll be thinking about you.

User
Posted 09 Jul 2024 at 22:19

With you chap, two years since my op. Keep doing the pelvic floor, hopefully it gives you a better chance of being dry.  I was pretty fit pre-op but it knocked me off my feet for the first couple of weeks so take it easy.

User
Posted 10 Jul 2024 at 12:50

Harry, Hope all goes well with the surgery. I did lots of PFEs before surgery and was 99 percent dry a few days after catheter removal. I put it down to the PFEs ,my wife said, "nothing to do with the skill of the surgeon then"?

Below is a link to some tips about the hospital stay and after care, main one don't forget the biscuits,apologies if I have already sent it.

https://community.prostatecanceruk.org/posts/t30614-Surgery-this-week#post296122

 

Thanks Chris 

 

User
Posted 17 Jul 2024 at 21:00

Good luck Harty, I hope everything goes smoothly for you.

Derek

User
Posted 17 Jul 2024 at 21:02

Thanks for the update mate. I'm glad everything went well. I hope you manage to get some kip.

User
Posted 17 Jul 2024 at 21:48

Cheers Steve 

Yes, it was a breeze. One minute I was chatting to the surgeon, the next I woke up a few hours later wondering where I was!

Yup, shoulder pain set in an hour ago.

Thanks for the tip ref the catheter 👍

User
Posted 19 Jul 2024 at 01:26

Harry, I have had urethral and suprapubic catheters on numerous occasions. I found I had a slight leak on many occasions and found a pad useful to soak up the on drip. A frequently mentioned issue is passing urine and sometimes a small trace of blood when sat on the toilet and passing a motion, known as bypassing. Have you passed a motion yet ,a full bowel can affect the bladder. No straining to pass that first motion.

Just make sure the catheter and bag pipes are not kinking as you stand up. Is the catheter secured to your upper thigh with a strap or adhesive device. Lots of bypassing can be a sign of the catheter getting clogged up, make sure you drink plenty to keep up the flow of urine through the catheter. Typicaly in this hot weather my over night output drops from upto a 1000mls a night down to 200mls. 

As always if in any doubt call your medical team, outside of normal hours I would ring the ward I was discharged from.

Hope recovery goes well take it easy but keep mobile.

Thanks Chris 

User
Posted 19 Jul 2024 at 07:23

Hello mate.

I'm glad that you are back home. It's a shame about the journey. No matter how well you plan things, someone always seems to manage to throw a spanner in the works.

I can't recall any catheter problems. I know, on day four, post op. I had four pints in the Club, to test out the plumbing. A stupid thing to do, but there were no leaks.  It's when they took it out I had problems. 

Take it easy and don't overdo things.

 

 

 

User
Posted 19 Jul 2024 at 19:29

Best wishes Ian

User
Posted 21 Jul 2024 at 18:59

Ian, it may be that the catheter is a bit too high in the bladder,that means the bladder starts to fill before it reaches the drain holes. The catheter balloon could also be close to the sensors that trigger urination.

As long as it is "just inconvenient" to leak, then put up with it for a few more days,do not try and do anything with it. 

Added,I have a permanent suprapubic catheter and if I get bit of a UTI I can fill three pads a day.

Thanks Chris 

Edited by member 21 Jul 2024 at 19:01  | Reason: Not specified

User
Posted 25 Jul 2024 at 22:53

Hello mate.

My TWOC was also a nightmare. I started peeing uncontrollably all the way home. We had to stop enroute and find a chemist for some incontinence pants. My jeans were absolutely soaked and I felt so embarrassed.

Fortunately the deluge was only temporary and within a couple of days I was only needing one or two pads a day. I hope you're the same.

 

 

User
Posted 29 Jul 2024 at 22:34

Hi mate

Yes, we seem to be following a similar path through this little maze.

He took the seminal vesicles, but apparently he left the lymph nodes. I was surprised, as I thought he was taking them, but he tells me he rarely does. He knows best I guess.

I'll keep my fingers crossed for you tomorrow pal. Let me know how it goes.

User
Posted 23 Sep 2024 at 11:46

I got my first post op PSA result back at the weekend, and it was <0.02, so undetectable. Very relieved. I know there is a fair chance I might end up needing salvage treatment at some point, as I was T3a, but for now, I am hoping life can get back to some kind of normality.

I am coming up on 10 weeks since the op, and my continence seems to have taken a big step forward in the last week. Overnight change, from using 3-4 pads per day, to only 2 most days.

No mention yet of any help in the ED department, but I have a follow up call with the surgeon on Thursday, so will maybe mention this to him then.

All in all, I am seemingly making great progress, so am happy with that!

User
Posted 23 Sep 2024 at 20:00

Originally Posted by: Online Community Member

I got my first post op PSA result back at the weekend, and it was <0.02, so undetectable. Very relieved. I know there is a fair chance I might end up needing salvage treatment at some point, as I was T3a, but for now, I am hoping life can get back to some kind of normality.

I am coming up on 10 weeks since the op, and my continence seems to have taken a big step forward in the last week. Overnight change, from using 3-4 pads per day, to only 2 most days.

Brilliant result! Seeing that < sign must be a huge relief. And you're making great progress towards continence too.

Hopefully you can get some ED help soon too.

Cheers, kev.

User
Posted 23 Sep 2024 at 20:40

Good result, Ian.👍

Dave

User
Posted 20 Mar 2025 at 10:06

Great result Ian. Keep them<<<<<<< arrows flying, mate. 👍

I hope the incontinence and ED issues improve.

Show Most Thanked Posts
User
Posted 09 Jul 2024 at 22:14

You'll be okay pal. I'll be thinking about you.

User
Posted 09 Jul 2024 at 22:19

With you chap, two years since my op. Keep doing the pelvic floor, hopefully it gives you a better chance of being dry.  I was pretty fit pre-op but it knocked me off my feet for the first couple of weeks so take it easy.

User
Posted 10 Jul 2024 at 12:50

Harry, Hope all goes well with the surgery. I did lots of PFEs before surgery and was 99 percent dry a few days after catheter removal. I put it down to the PFEs ,my wife said, "nothing to do with the skill of the surgeon then"?

Below is a link to some tips about the hospital stay and after care, main one don't forget the biscuits,apologies if I have already sent it.

https://community.prostatecanceruk.org/posts/t30614-Surgery-this-week#post296122

 

Thanks Chris 

 

User
Posted 11 Jul 2024 at 21:08

Pre-op assessment today. All good apart from an apparently low Lymphocite count in my blood tests. Now waiting to find out what that means? Anyone had this flagged up in their tests?

User
Posted 17 Jul 2024 at 07:07

Originally Posted by: Online Community Member
 I'll be thinking about you.

I told you I would. 🙂

Good luck mate. I hope everything goes swimmingly. 

User
Posted 17 Jul 2024 at 20:53

Haha, cheers pal. Quick note as I’m needing a kip, but all done now. Surgeon happy with how it went, and thinks he got it all. He did say there was a lot in there, especially on the right hand side. He had to go quite wide in his words, to get it all out. So a nervous wait for news of margins now, but at least it’s done 👍

Im thinking this catheter could be quite handy on a night out…….

Cheers.

Ian.

User
Posted 17 Jul 2024 at 21:00

Good luck Harty, I hope everything goes smoothly for you.

Derek

User
Posted 17 Jul 2024 at 21:02

Thanks for the update mate. I'm glad everything went well. I hope you manage to get some kip.

User
Posted 17 Jul 2024 at 21:33
Well done! Do you agree that the anticipation was 10x worse than the actual event?

Couple of tips - when they offer you paracetemol TAKE IT! The shoulder pain is awful and the painkillers keep it at bay so start as soon as it's offered :)

With the catheter, never touch the piece from the penis to the adaptor - use sterile cloth soaked in antiseptic. It has to be 100% sterile at all times.

Apart from that just lie back and chill until they force you out of bed to walk and shower LOL

User
Posted 17 Jul 2024 at 21:33

At least there’s no noise here. This place is like a 5 star hotel 👍

User
Posted 17 Jul 2024 at 21:48

Cheers Steve 

Yes, it was a breeze. One minute I was chatting to the surgeon, the next I woke up a few hours later wondering where I was!

Yup, shoulder pain set in an hour ago.

Thanks for the tip ref the catheter 👍

User
Posted 18 Jul 2024 at 23:08

Well the good news is they let me home today. The bad news was the journey. We had it all planned, taxi from hospital to station, first class seats booked next to the loo for the 50 minute journey to Peterborough. Cue cancellations. Lots of them. Ended up crammed on a commuter train which took 2.5 hours to get through to Peterborough. Not much fun.

At least I’m home now. Can anyone advise if it’s normal for the catheter to leak a bit when transitioning from sitting to standing, or trying to bend over? Didn’t expect to be wearing pads with it fitted?

Otherwise all seems fine other than a bit sore after that journey.

User
Posted 19 Jul 2024 at 01:26

Harry, I have had urethral and suprapubic catheters on numerous occasions. I found I had a slight leak on many occasions and found a pad useful to soak up the on drip. A frequently mentioned issue is passing urine and sometimes a small trace of blood when sat on the toilet and passing a motion, known as bypassing. Have you passed a motion yet ,a full bowel can affect the bladder. No straining to pass that first motion.

Just make sure the catheter and bag pipes are not kinking as you stand up. Is the catheter secured to your upper thigh with a strap or adhesive device. Lots of bypassing can be a sign of the catheter getting clogged up, make sure you drink plenty to keep up the flow of urine through the catheter. Typicaly in this hot weather my over night output drops from upto a 1000mls a night down to 200mls. 

As always if in any doubt call your medical team, outside of normal hours I would ring the ward I was discharged from.

Hope recovery goes well take it easy but keep mobile.

Thanks Chris 

User
Posted 19 Jul 2024 at 07:23

Hello mate.

I'm glad that you are back home. It's a shame about the journey. No matter how well you plan things, someone always seems to manage to throw a spanner in the works.

I can't recall any catheter problems. I know, on day four, post op. I had four pints in the Club, to test out the plumbing. A stupid thing to do, but there were no leaks.  It's when they took it out I had problems. 

Take it easy and don't overdo things.

 

 

 

User
Posted 19 Jul 2024 at 19:29

Best wishes Ian

User
Posted 19 Jul 2024 at 21:01

Thanks Keith. Was sat feeling a bit sorry for myself earlier, but have realised there’s no reason to do so, as hopefully I’ve just got rid of this horrible disease! A few weeks of discomfort and the long term side effects are actually a small price to pay for that 👍

User
Posted 21 Jul 2024 at 16:05

I was starting to get concerned earlier, as my leg bag wasn’t filling much, and what did come through was very red. They sent me home with a spare bag though, so I managed to change it and all now seems fine. Can only assume a bit of clot or tissue had wedged in the pipe.

Have managed the 1 mile walk the last two days (very slow), but have felt wiped out afterwards. Good progress though.

User
Posted 21 Jul 2024 at 17:23

Harty, you can sometimes get an air lock and changing the bag solves it. Perhaps just ease off the amount of walking until the catheter is out. It's also been warmish today are you drinking a bit more. I found I always drained better when laying down and made sure the bag was below the bladder.

Hopefully not long before it comes out. I always made sure I was well hydrated before getting to the hospital for my trial without catheter (twoc). I also took a towel,seat cover and change of underwear to the twoc , I never needed them but better to have than want.

Thanks Chris 

User
Posted 21 Jul 2024 at 17:49

Thanks Chris. Yes it may have been airlocked, but since changing it the contents are nice and yellow again. Anyhow it’s working again. The main issue with it is that it is still bypassing when I sit down or stand up. It’s not an issue, but I couldn’t survive without at least 3 pads a day, which I am surprised about when catheterised.

Cheers

Ian.

User
Posted 21 Jul 2024 at 18:59

Ian, it may be that the catheter is a bit too high in the bladder,that means the bladder starts to fill before it reaches the drain holes. The catheter balloon could also be close to the sensors that trigger urination.

As long as it is "just inconvenient" to leak, then put up with it for a few more days,do not try and do anything with it. 

Added,I have a permanent suprapubic catheter and if I get bit of a UTI I can fill three pads a day.

Thanks Chris 

Edited by member 21 Jul 2024 at 19:01  | Reason: Not specified

User
Posted 25 Jul 2024 at 22:40

Back in for the TWOC today, and it has been horrendous. The actual removal was surprisingly quick and easy. In fact I didn't even know they had got it out until they held it up and showed me. However, I immediately realised (as did they by the mess I made) that I had complete lack of control over my bladder. It is (still, 12 hours later) just constantly leaking. I couldn't even do the peeing in the jug test, as I just could not retain any water to try and actually force a voluntary pee.

They scanned my bladder and sure enough it was completely empty. It was/is just behaving like the catheter was still fitted, but unfortunately with no safety bag attached. After another nightmare journey home on the train (someone jumped further up the line so Kings Cross shut down for 3.5 hours) I had gone through 8 pads and a change of trousers. I was expecting not to be dry for a while, but nothing on this scale.

They tell me it should settle down over the next few days. I really hope so, as this is a bit depressing. Is this a common reaction when having it removed?

Ian.

User
Posted 25 Jul 2024 at 22:53

Hello mate.

My TWOC was also a nightmare. I started peeing uncontrollably all the way home. We had to stop enroute and find a chemist for some incontinence pants. My jeans were absolutely soaked and I felt so embarrassed.

Fortunately the deluge was only temporary and within a couple of days I was only needing one or two pads a day. I hope you're the same.

 

 

User
Posted 25 Jul 2024 at 22:57

Cheers Adrian

That's reassuring.

Like the new avatar. I see you have traded your good lady for a pint of best!

 

User
Posted 25 Jul 2024 at 23:17

Yeah. The beer's got a better head on it.😆

Actually the photo was taken by my darling wife on 29th Feb last year. Only 4 days after my prostatectomy. I had 4 pints of Staropramen lager just to test out the catheter. It passed.

Edited by member 25 Jul 2024 at 23:34  | Reason: Additional text

User
Posted 26 Jul 2024 at 10:52

Hi Ian,

That brings memories "flooding" back. I also had zero control immediately after TWOC. Lying down "helped" although the slightest movement and getting back upright meant instant leakage.  Initially I was very dispirited - I had been doing pelvic floor exercises for a couple of months prior to my op (delayed due the response to covid) and it seemed to have had little effect.

There was gradual improvement over the next few weeks, but I had hoped for better and was very downhearted.

The real step change came about 5-6 weeks post op when I suddenly passed some clot debris after the bladder neck sutures dissolved (took me by surprise!).  All of a sudden I had much better control and that's how it still is 3 years post-op.  I'd call it 98% continence - tea gives me issues and if I'm on the beer I have to be mindful that I may need to hit the loo in a hurry.  Day-to-day I do not need pads at all.  The only time I use them is when I'm out hiking, as fatigue and exertion can lead to the odd drip (it really is just a drip).

Keep up with the PFE and try not to let it get you down (easy to say now I don't have the problem) - things should improve soon, watch out for the clot debris and improvement after it's been passed.

Ian (another one...)

User
Posted 26 Jul 2024 at 15:29

Thanks Ian, that sounds encouraging. I too am much better lying, or even sitting down. The minute I get up again the floodgates literally open.

I'll keep an eye out for that debris!

Cheers

Ian.

User
Posted 27 Jul 2024 at 10:47

Hi Ian

yes, the first week of incontinence is the worst as it’s not what you expect (even though you read about it and think you’re prepared).  Then you kind of adjust and learn how to cope. Keep doing the pelvic floors, really important, and, keep your chin up and try and stay positive! Steve had been incontinent for six months post op now and although he does have his down moments, we are ever hopeful it is going to improve and we are getting on with life! You do learn how to adjust!

fingers crossed you have a quick improvement

 

Debbie

User
Posted 29 Jul 2024 at 22:06

I had my post op histology results back this evening. Still G7 but uprated to T3a as it had ruptured the prostate wall on the right hand side. He's happy he got it all though, so fingers crossed. He also confirmed from my urine sample taken on Thursday that I have a UTI, which probably explains some of my constant leakage issues. A couple of weeks on antibiotics to sort that out.

Whilst clearly very relieved that he says he got it all out, It is very frustrating that my disease progressed this far in12 months, whilst I was supposedly being monitored closely on AS. They were still trying to persuade me to wait and have another PSA test in September. I thank my lucky stars that I pushed back and insisted on being referred for surgery.

Anyway, at least it is now gone, and will hopefully stay that way 👍

User
Posted 29 Jul 2024 at 22:18

Hi Ian

As you know I was T3a as well, but Gleason 9(4+5). It's my 18 month PSA check tomorrow. I'm hoping it will still be undetectable. 🤞

Do you know if your surgeon took out your seminal vesicles or any lymph nodes?

User
Posted 29 Jul 2024 at 22:34

Hi mate

Yes, we seem to be following a similar path through this little maze.

He took the seminal vesicles, but apparently he left the lymph nodes. I was surprised, as I thought he was taking them, but he tells me he rarely does. He knows best I guess.

I'll keep my fingers crossed for you tomorrow pal. Let me know how it goes.

User
Posted 29 Jul 2024 at 22:50

Originally Posted by: Online Community Member
I'll keep my fingers crossed for you tomorrow pal. Let me know how it goes.

Cheers mate. Hopefully I'll get the result sometime on Wednesday, and let you know.

User
Posted 23 Sep 2024 at 11:46

I got my first post op PSA result back at the weekend, and it was <0.02, so undetectable. Very relieved. I know there is a fair chance I might end up needing salvage treatment at some point, as I was T3a, but for now, I am hoping life can get back to some kind of normality.

I am coming up on 10 weeks since the op, and my continence seems to have taken a big step forward in the last week. Overnight change, from using 3-4 pads per day, to only 2 most days.

No mention yet of any help in the ED department, but I have a follow up call with the surgeon on Thursday, so will maybe mention this to him then.

All in all, I am seemingly making great progress, so am happy with that!

User
Posted 23 Sep 2024 at 12:08

Originally Posted by: Online Community Member
I got my first post op PSA result back at the weekend, and it was <0.02, so undetectable. Very relieved.

Brilliant news Ian!

I'm so pleased that your incontinence is improving too. I got an appointment at the ED clinic about 5/6 months after the op.

Have you returned to work? If so, how's it going?

User
Posted 23 Sep 2024 at 12:27

Hi Adrian

Yes mate, first week back last week. It's going ok, but despite having a very sedentary job (basically sitting behind a desk or in meeting rooms all day) I am getting very tired really quickly. I was pretty wiped out by Friday to be honest. I guess sitting around at home for 8 weeks got me out of the habit of early starts!

User
Posted 23 Sep 2024 at 13:44

I went back to work after 7 weeks in early June like you a desk job and it was probably October before my stamina and energy levels were back to something resembling normality. I was really surprised at how long it took to recover. I was luckily as well because I had the scope to come in later and finish earlier. Good luck with the recovery and remember listen to your body don’t push it too much too soon. 

User
Posted 23 Sep 2024 at 20:00

Originally Posted by: Online Community Member

I got my first post op PSA result back at the weekend, and it was <0.02, so undetectable. Very relieved. I know there is a fair chance I might end up needing salvage treatment at some point, as I was T3a, but for now, I am hoping life can get back to some kind of normality.

I am coming up on 10 weeks since the op, and my continence seems to have taken a big step forward in the last week. Overnight change, from using 3-4 pads per day, to only 2 most days.

Brilliant result! Seeing that < sign must be a huge relief. And you're making great progress towards continence too.

Hopefully you can get some ED help soon too.

Cheers, kev.

User
Posted 23 Sep 2024 at 20:40

Good result, Ian.👍

Dave

User
Posted 24 Sep 2024 at 07:51
Great news Ian 👍
User
Posted 24 Sep 2024 at 14:57

Great news Ian and good luck with your recovery.

Derek

 

User
Posted 20 Mar 2025 at 09:34

Well, 8 months post op now, and my latest PSA result came back yesterday at <0.02, so I'm very happy.

ED and Incontinence are still issues, but I guess it's still relatively early days, and if I'm honest, I've been a bit slack (no pun intended) with my pelvic floor exercises. I need to double down on these, as I'd really like to get back into running, but at the moment that isn't really an option.

Still getting the 3 monthly anxiety when testing comes around, but I guess that's normal.

All the best to everyone in this exclusive club.

Ian.

User
Posted 20 Mar 2025 at 10:06

Great result Ian. Keep them<<<<<<< arrows flying, mate. 👍

I hope the incontinence and ED issues improve.

User
Posted 20 Mar 2025 at 18:49

Hi Ian, 

Excellent result, I'll raise a glass to that 🍺

Keep working on the continence and ED issues, hopefully you'll make some progress. Have you tried injections yet?

Cheers, 

Kev.

 
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