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recently diagnosed with prostate cancer end of july

User
Posted 15 Aug 2022 at 18:14

hi all

 

i have been diagnosed with prostate cancer gleeson 7 T3A. no symptoms. only picked up on a PSA test after i had a small stroke, PSA 8.7

im 60 ok health wise not the sort of person to put my worries on others(the wife). we have decided to have the prostate removed i couldnt have all other treatments a i also have ulcerative colitis again in control.

 

how long is it after the op that you start to feel better, i understand there will be problems with wetting and ED, but will have to deal with them as they happen.

 

many thanks

User
Posted 15 Aug 2022 at 20:42

Hi

I thought the catheter would be uncomfortable. 

Yes I am going to have robot operation. 

I dont have a date as yet but the consultant said he books up 6 to 8 weeks in advance which would roughly put operation the end September 

User
Posted 16 Aug 2022 at 08:52
Just to be clear - pelvic floor exercises are a good thing that everyone should do as they get older. But men who are left incontinent following RP are not incontinent because they didn't do their exercises well enough and it is insensitive to suggest that. A man may have a pelvic floor of steel but total incontinence.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 16 Aug 2022 at 13:10

I totally agree with your point Lyn but I don't think anyone was making that suggestion. Chris 

User
Posted 30 Oct 2022 at 20:51

Six weeks post op.

Yes to echo the above. Once the catheter is out you start to feel your on the road to recovery. Everyone seems to go through the same trip. Remember your pelvic floor exercises once the catheter is out. The uro-oncology nurse advised six times a day. 

 

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User
Posted 15 Aug 2022 at 19:53
Sorry to hear that you have joined the club.

I'm guessing that you are opting for RARP ( robot assisted radical prostatectomy). If that is the case then you'll feel fine almost as soon as you come round from the anaesthesia. Overnight stay in hospital , packed off home with catheter bags and all the other paraphernalia.

Best to take it easy for a few days and then try a bit of gentle exercise.

User
Posted 15 Aug 2022 at 20:01

Many thanks for the info. 

I must say I have been in clubs I wanted to join lol

User
Posted 15 Aug 2022 at 20:35
Hi Nick, sorry that you find yourself here, but the support is amazing. My husband was dx end of Jan and had RP mid March. Same Gleason and grade as you. The first 10 days whilst the catheter was in were the worst. The catheter was a bit restricting and he just felt like he’d been through a mangle - as you would after any abdominal surgery. When the catheter was removed he felt like a new man (his words). It’s been solid, steady progress since then. Get into the routine of pelvic floor exercises and make them part of your daily routine - they really help. He uses the squeezy app. Please message me if you have any specific questions. Do you have a survey date and I’m assuming you’re opting for robotic prostatectomy?
User
Posted 15 Aug 2022 at 20:42

Hi

I thought the catheter would be uncomfortable. 

Yes I am going to have robot operation. 

I dont have a date as yet but the consultant said he books up 6 to 8 weeks in advance which would roughly put operation the end September 

User
Posted 15 Aug 2022 at 20:55

I was diagnosed with PC in May  age 57 T3b Gleason 7 (3+4) also suffer from ulcerative colitis but been in remission for over 10 years, consultant said RP was only real option due to RT could kick start the colitis off again, so just waiting for date for op. I've been doing the pelvic floor exercises for a month now so hoping to get over one hurdle. 

Good luck 👍 

 

User
Posted 15 Aug 2022 at 21:00

I have In remission for about 8 years for colitis (probably because I started smoking again) although given up after stroke. 

 

Good luck to you. 

User
Posted 15 Aug 2022 at 21:33

Sorry you find yourself here but at least it's been found in time to be dealt with. I suppose priority number one (post op) is getting yourself back to continence and as Jayney says get cracking on the pelvic floor exercises beforehand. Hopefully you will given some advice on ED but have you been told whether the operation is likely to be nerve sparing? At least you will then know what your options are in dealing with ED. You might be offered 5 mg of daily Tadalafil. You generally need bigger a dose to assist with erections but there is evidence that a daily small dose helps increase blood flow to repair damaged nerves. However it is a bit of a post code lottery as to whether you can get it prescribed. You also hopefully be given advice about getting a vacuum pump to assist with your penile rehab. I'm now 6 months post op and my continence is more or less cracked apart from long distance walks. ED is still work in progress but I can manage penetrative sex with some chemical and mechanical assistance. How quickly these things happen varies widely from person to person but most people eventually get there. Good luck with your forthcoming op.

User
Posted 16 Aug 2022 at 06:14

Hi Nick, as Chris suggested it is a very good idea to start your pelvic floor exercises now. OH had his RARP 19th May and is now fully dry. 

User
Posted 16 Aug 2022 at 08:52
Just to be clear - pelvic floor exercises are a good thing that everyone should do as they get older. But men who are left incontinent following RP are not incontinent because they didn't do their exercises well enough and it is insensitive to suggest that. A man may have a pelvic floor of steel but total incontinence.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 16 Aug 2022 at 13:10

I totally agree with your point Lyn but I don't think anyone was making that suggestion. Chris 

User
Posted 16 Aug 2022 at 17:51

Hi Lynn, Chris is correct, nobody ever suggested or would suggest that it is any man's fault if they are incontinent.  In fact any man suffering Incontinence after an operation has my sympathy and deserves every bit of help available, but as you said we all   male and female should do them regularly. 

User
Posted 30 Oct 2022 at 18:45
Is an up had the op 9 days ago.

Maybe I'm a wimp but this is currently the worst moment of life.

Catheter is painful and uncomfortable as is sitting down.

I am sure things will improve soon

User
Posted 30 Oct 2022 at 20:04

Not long before you lose the catheter Nick then things should get a lot less painful. If it is the end of the penis that is hurting (I had that problem) try to get some Instillagel prescribed. I also found the catheter caused some discomfort in the Perineum when sitting down. Not much you can do about that except take painkillers and stick to a comfy seats.

User
Posted 30 Oct 2022 at 20:20

Originally Posted by: Online Community Member
Is an up had the op 9 days ago.
Maybe I'm a wimp but this is currently the worst moment of life.
Catheter is painful and uncomfortable as is sitting down.
I am sure things will improve soon

 

Good to hear the surgery is behind you and yes the first 10-14 are difficult. You will feel much better when catheter is out. Best wishes x

User
Posted 30 Oct 2022 at 20:25
Thanks for the help.

I have been feeling down about it

User
Posted 30 Oct 2022 at 20:51

Six weeks post op.

Yes to echo the above. Once the catheter is out you start to feel your on the road to recovery. Everyone seems to go through the same trip. Remember your pelvic floor exercises once the catheter is out. The uro-oncology nurse advised six times a day. 

 

User
Posted 03 Nov 2022 at 06:40

Originally Posted by: Online Community Member
Thanks for the help.
I have been feeling down about it

its a rollercoaster of emotion that’s for sure. Take one day at a time and listen to your body. Once the catheter is out, hopefully you will feel much better. X

 
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