The surgery is over…but..

User

Posted 23 Jan 2024 at 20:27

Congratulations Debbie! Upwards and onwards from here on! As someone already alluded to, he should try to take it nice and easy in the next few weeks.

User

Posted 23 Jan 2024 at 20:32

Fantastic news Debbie! Please give him my best wishes 👍

User

Posted 24 Jan 2024 at 00:03

Wow Debbie, Steve has really been through it and I’m sure my you really have too. So pleased he is home, onwards and upwards now 🤞🏼

User

Posted 31 Jan 2024 at 11:28

Latest update…today is 3 week post op, catheter still in (surgeon said up to 4 weeks to ensure join healed) but expecting to get a call today for cystogram and removal date over the next few week. Steve is coping with it knowing it’s not for much longer.

on a very positive note, his surgeon phoned this morning to say he’d just had the prostate histology report and all margins clear, all contained in prostate….wooooooo another big hurdle over!!

I know there’s a few people on here at the moment trying to make the difficult decision which treatment option to go for (we know how difficult that is) but for us, looks like we made the right decision for surgery at this point as it’s the best outcome we could have hoped for.

Debbie

User

Posted 31 Jan 2024 at 12:05

Brilliant news Debbie. I'm so pleased for you both. I'm very close to a year on and posted this yesterday.

https://community.prostatecanceruk.org/posts/t30214-Almost-a-year-on-after-RARP

I hope Steve continues to make a smooth and speedy recovery.

User

Posted 31 Jan 2024 at 12:29

So pleased for you both Debbie, you’ve been through the mill a bit but I’m delighted that the histology report is good and wish Steve a speedy recovery(take it easy though!).

All the best to you both,

Derek

User

Posted 31 Jan 2024 at 12:44

Hi Debbie

I had to have my catheter in for over fives week waiting for the leaky joint! At the time I had a scan week after week to check if the leak had healed, in many ways it was probably the most stressful time following surgery; our bodies are amazing at self-healing. He will be fine.

'Physics is like sex: sure, it may give some practical results, but that’s not why we do it.' Richard Feynman (1918-1988) Nobel Prize laureate

User

Posted 31 Jan 2024 at 13:11

Debbie, good news on the histology. At least the catheter should mean no night time loo visits.

Thanks Chris

User

Posted 31 Jan 2024 at 14:09

Brilliant news Debbie, really pleased for you both. Rob had his catheter in for 4 weeks also but didn’t find it too bad x

User

Posted 01 Feb 2024 at 08:15

Brilliant, fantastic, Congratulations Debbie!, A cause for celebration.

The catheter issue will soon be a history.

User

Posted 10 Feb 2024 at 08:37

The next stage….incontinence!!

Bladder/urethra join all good so catheter removed on Thursday! Steve is 31 days post surgery and catheter was in for 29 days.

As expected, absolutely no bladder control…..we just wondered from others’ experiences, how long was it before you first got some ability to hold/stop the flow? (He’s doing his pelvic floors and getting mobile now the catheter isn’t restricting him).

Debbie

User

Posted 10 Feb 2024 at 10:32

Hi Debbie everyone is different, I was lucky & only wore the pads for a week which was just for security the main problems was when I got up from sitting to standing without concentrating on holding my bladder muscles, but has I mentioned only for about a week.

There is some good pads you can purchase & the full briefs if continence is poor, I’m sure as the weeks go by & the concentration & muscles improve so will Steve’s continence.

Walking & light exercises are all a benefit but don’t overdo it I waited the full 6 weeks befor getting back to jogging.

All the best Jeff.

User

Posted 10 Feb 2024 at 13:03

Give it some time to let things settle down and when peeing, try and stop the flow to help identify the muscles that can control it.

I was reasonably successful but then got prescribed a course of 'perineal physiotherapy' also known as pelvic floor therapy and which is frequently used by women after child birth.

I had my 4th session yesterday and it is making a big difference - so much so that I no longer wear a pad around the house - just when I go out, for safety.

I posted a bit about it under the living with cancer topic.

User

Posted 10 Feb 2024 at 13:46

Debbie, I was also lucky to be 99 percent dry 4 days after catheter removal. Those first few days were pretty uncontrollable. Remember there is probably still some healing happening,I had lots of scabs and debris coming out for a few weeks after surgery.

Thanks Chris

User

Posted 10 Feb 2024 at 16:41

Hi Debbie.

I was like an out of control fountain during the day for well over a month, but weirdly was dry through the night almost immediately. I was padless after about 7/8 months. I think my bladder is still weaker than it was pre op. However my wife maintains that I was a dribbler months prior to the op.

User

Posted 10 Feb 2024 at 18:26

Thanks for responding everyone….its reassuring to know that it can change round quite quickly. Today is only second full day without catheter and this afternoon Steve got his first semi controlled release….he managed to hobble to the bathroom and hold some urine until he got there!

User

Posted 19 Mar 2024 at 14:09

Hey everyone - Steve's first post op PSA result all good - less than 0.05 (nearest the lab measures to).

Had follow up meeting with surgeon at Blackburn on 12th March, expected to be signed off back to our local health authority/urologist but surgeon not happy that there are no signs of any change in the incontinence, he said he expected some signs of dryness at night. He said that the join of the urethra to the bladder around the valve was particularly tricky so he would rather Steve stay under his care for a bit longer as if there was no signs of improvement in the incontinence within the next 12 weeks he would want to investigate further.

Can't argue with that!

Local urologist won't refer to incontinence nurse until it's been six months!!

Steve has been referred to the ED clinic to get the ball rolling there and apparently he will be contacted direct by an ED pump specialist and the SomaErect was mentioned (which I've read about on here).

Despite the incontinence, we have started 'getting on with life' managed a family trip to Centerparcs (although Steve didn't do the water stuff!) then been for a theatre going couple of days in London, walked miles every day and although he is tired...coped really well! He's having a chilled week now though!

User

Posted 19 Mar 2024 at 16:40

That’s wonderful news Debbie I’m so pleased for you both! It’s always nice to hear the good news stories. Hopefully you can get the incontinence issues sorted and Steve can get on with his recovery.

wishing you both All the Best…and keep us posted😊

Derek

User

Posted 19 Mar 2024 at 16:42

Hi Debbie,

Great news about the PSA result. I hope that the incontinence issue will quickly improve.

User

Posted 19 Mar 2024 at 20:08

Excellent News Debbie. I am almost 2yrs post surgery, grateful to God that the PSA is still undetectable based from my last test a week ago. ED is still so so, however become an expert at using the pump and despite the frustrations in the early days, I have no issues using the pump now. Incontinence is still there, but night time only. So he will get better.

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