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Retzius-Sparing Radical Prostatectomy - my story

User
Posted 25 Aug 2022 at 23:26

I had been on Active Surveillance for 4 years under the care of Basingstoke Hospital. After having an MRI followed by a Template Biopsy in March, I was given options for treatment at my results clinic in early May, including radiotherapy, HIFU and radical prostatectomy. After doing a lot of research on the internet, and talking to the specialist nurses at both Basingstoke Hospital (who do HIFU) and Royal Surrey County Hospital, Guildford (who do Radical Prostatectomies), I opted for a Retzius-Sparing, Robotically Assisted, Radical Prostatectomy at Guildford.

Basingstoke referred me to Guildford and I had a telephone consultation with the eminent Professor who-cannot-be-named-here at the end of June, and was told that I was a very suitable candidate for Retzius-Sparing Radical Prostatectomy, was put on the waiting list, and expected that the Professor himself would be doing my surgery in 8 – 12 weeks time, i.e. sometime between end of August and end of September.

It came as something of a surprise to get a phone call from the Royal Surrey near the end of July giving me a date for my surgery as soon as 1st August, but not to be done by the Prof as he was retiring! After a phone conversation with the surgeon who was available, I was reassured to find (a) that he had done over 300 RPs of which around 100 were Retzius-Sparing, and (b) that he’d been taught by the Prof. I agreed to go ahead.

I thought it might be useful to record a diary of my surgery and recovery in the manner of the one here https://community.prostatecanceruk.org/posts/t16224-Retzius-Sparing-Laparoscopic-Radical-Prostatectomy, particularly since there are a few things that have changed in the hospital procedures in the 4 years since John had his surgery. I doubt this will be as detailed or entertaining as John’s story, but here goes:

Day 1: Monday 1st August 2022
Admitted
to hospital at 12:15, last food at 7:00 and water at 11:00.

Was seen pretty promptly by the anaesthetist, a consultant & then by my surgeon.
Slightly alarming to be advised by the consultant of all the possible side effects & potential problems that could come with the surgery just before I signed the consent form! Also slightly worrying to be told by the surgeon that as my prostate was quite large (88ml), there was a slight possibility he might have to switch from a Retzius-Sparing approach to a conventional approach.
I went to surgery at around 13:30, and woke up at around 17:30. Saw the surgeon soon after, and he advised that it had gone very well, he was able to do Retzius-Sparing & preserve the nerves both sides.

Had a couple of cannulas and a penile catheter (the Royal Surrey have stopped using supra-pubic catheters due to increased infection rates). No obvious pain as I had a spinal anaesthetic as well as general.

Moved back to Elective Surgery ward a bit later.
Had
a jacket potato with cheese & a yoghurt for supper, but found it quite difficult to eat as my mouth & throat were very dry.
The Royal Surrey are now doing Radical Prostatectomies as day cases for some patients who come in for morning surgery, but as I was “done” in the afternoon, I had an overnight stay. I didn't get much sleep! I couldn't get comfortable for long & another patient was snoring his head off all night!

Day 2
6:45 catheter collection
bag changed to leg bag
6.55 first fart!
7.20 visit from surgeon & specialist nurse, who advised
no driving for 3 weeks, no heavy lifting for 6-8 weeks, no straining (i.e. on the toilet!) for 2 weeks
Had porridge for breakfast

Saw the specialist nurse again later, she went through procedure for self removal of catheter (to be done Wed 10 Aug). Sounded straightforward enough, if a little alarming!

I was given a supply of various painkillers, some laxatives, also spare catheter bags and the things needed for removal of the catheter. Slightly relieved that they now only give anti coagulants to high risk patients (BMI over 35, age over 75, or history of blood clots), so didn’t have to worry about having to inject myself.
I was released to go home at 12:45, had a chicken curry & rice, followed by salted caramel sponge & custard for lunch.
My wife collected me at 14.15, the 25 mile journey home was OK, not in any pain, just a bit surreal to think that I was going home less than 24 hours after such a major operation!

Had
a whole tin of baked beans to eat in the evening plus 2 sachets of laxative drink.

Day 3
Slept almost non-stop from 10pm to 7am.
Surprised to find that I had almost totally filled the 2 litre night catheter bag!
Ate breakfast & lunch.
No bowel movement all day!
Walked
around the garden a couple of times to try to help get things moving.
Tummy feeling quite sore &
also feeling very bloated & uncomfortable.
Took the laxatives as advised, but only needed very occasional painkillers when the incision wounds got sore.

Day 4
Fairly good night's sleep again. Woke up before 6
am with catheter night bag full again. Hard to know where all the pee is coming from, sure I didn’t used to produce that much during a night before!
Slept some more.
Had breakfast at 9:45, and then – a huge relief – at 10:30, first bowel movement since early on Day 1! Felt much more comfortable after that.
Felt well enough to cook lunch, but it was quite tiring standing up to do it.
Walked up the garden & threw a few balls for
our dog in the evening. He’s been very well behaved and seems to realise that something out of the ordinary has happened.

Day 5
Slept from 10ish to between 3 & 4 am when I
again had to empty the full night bag.
Couldn't get back to sleep for a while,
but eventually slept again until 9ish, when the night bag was pretty full again.
Second bowel movement!
Weighed myself - had lost 2 pounds
since before the op, now 13 stone 4.
Ate breakfast.
Third bowel movement.
Felt fairly OK, and cooked lunch again.

Day 6
Full nights sleep again, apart from emptying night bag.
Breakfast
Had at least 3 bowel movements
during the day!
Cooked
lunch again.
Did some light chores around the house, but felt pretty tired afterwards.

Day 7
Good nights sleep again, but a bit alarming, woke to find that urine wasn't draining into the night bag, think the bag or tube must have been twisted? Had to stand up & untwist it to empty the leg bag into it.
Bowel movement
s seem pretty regular now.
Weighed myself again - up 3 pounds since
Day 5!
Cooked a full English breakfast
Did some tidying up in the greenhouse. Wounds a bit sore from bending forward &
my waistband rubbing on them. Don’t notice them when just sitting or standing normally, and had just been wearing loose jogging bottoms most of the time, but normal trouser waistbands/belts irritate them
Changed the catheter leg bag.

Day 8
Decent nights sleep again.
Breakfast
Bowel movement
Cooked lunch
Had a lazy day after yesterday’s exertions in the greenhouse. Walked around the garden in the evening

Day 9
Slept for almost 11 hours, apart from getting up to empty night bag
Breakfast
Bowel movement
Cooked lunch
Very hot day

Day 10
Catheter removal day. Was supposed to do it at 7:00 but
didn’t do it until nearer 8:00 because I was advised to wait until after I’d had a bowel movement, as it was supposed to make it easier.
I had a certain amount of trepidation about the procedure, but actually the catheter removal was straightforward & painless.
Had no sign of leakage before my first natural wee, which was at 9:50.
Had 2 cups of decaf coffee & several glasses of squash or cordial
during the day & several wees during the day.
Wore an incontinence pad, but there seemed to be no hint of any incontinence other than a tiny dribble when I farted one time!
It felt a bit odd & sensitive due presumably to irritation of the urethra & bladder by the catheter,
but it was an incredible relief to find that I had control. During one wee I tested whether I could stop & start, & I could.

Day 11
Slept well. Had to get up once in the night for a wee & once at about 5:00am
Went down to
the south coast for a family event. Took our dog for a 2km walk down to the shore at Emsworth and back – the first walk other than around the garden since my op.
Wore a pad, but
really didn’t need it.
Very hot day again

Day 12
Slept from 10:00 ish to 7:00 without needing to get up for a wee & no leaks.
Another very hot day

Day 13
Slept from 10:00 ish to 8:30 but had to get up twice for wees.
It’s very noticeable that I’m sleeping a lot, and yet still get quite tired during the day.

Day 14
Slept well again.
Did some chores
Cooked a full English breakfast
Discarded pad later in the day as felt confident I didn't need it

Day 15
Slept well, only had to get up once for a wee.
One of my small wounds is getting rather sore & is showing signs of being infected.
First full day without a pad &
no problems.
Did a few chores, but totally ran out of energy in the afternoon

Day 16 - 21
Gradually continuing my recovery, still a bit tired most days & some soreness from my wounds, but feeling pretty good overall. Going for a few short walks. Finding I have very slight dribbles of urine on odd occasions, but not needing an incontinence pad, which is a fantastic result.

Day 22
Drove for
the first time since my operation1.5 hour journey home from Dorset. A bit tiring, but no problems.

Day 25
Drove for the second time – to my local prostate cancer support group meeting in the afternoon. Took some of the incontinence pads from Prostate Cancer UK’s surgical support pack to donate for anyone needing them more than me.

All wounds are healing gradually, but the one that was infected is taking longer & is still sore – think it gets irritated more by trouser waistbands than the others. I still get tired most days, but that is improving.

I have a telephone consultation with the hospital at the end of September to discuss my histology results, and then need to get a blood test done 10 - 12 weeks after surgery to check my PSA, but as things stand I’m feeling pretty positive about my choice to have a radical prostatectomy.

Edited by member 03 Sep 2022 at 10:25  | Reason: Not specified

User
Posted 25 Aug 2022 at 23:26

I had been on Active Surveillance for 4 years under the care of Basingstoke Hospital. After having an MRI followed by a Template Biopsy in March, I was given options for treatment at my results clinic in early May, including radiotherapy, HIFU and radical prostatectomy. After doing a lot of research on the internet, and talking to the specialist nurses at both Basingstoke Hospital (who do HIFU) and Royal Surrey County Hospital, Guildford (who do Radical Prostatectomies), I opted for a Retzius-Sparing, Robotically Assisted, Radical Prostatectomy at Guildford.

Basingstoke referred me to Guildford and I had a telephone consultation with the eminent Professor who-cannot-be-named-here at the end of June, and was told that I was a very suitable candidate for Retzius-Sparing Radical Prostatectomy, was put on the waiting list, and expected that the Professor himself would be doing my surgery in 8 – 12 weeks time, i.e. sometime between end of August and end of September.

It came as something of a surprise to get a phone call from the Royal Surrey near the end of July giving me a date for my surgery as soon as 1st August, but not to be done by the Prof as he was retiring! After a phone conversation with the surgeon who was available, I was reassured to find (a) that he had done over 300 RPs of which around 100 were Retzius-Sparing, and (b) that he’d been taught by the Prof. I agreed to go ahead.

I thought it might be useful to record a diary of my surgery and recovery in the manner of the one here https://community.prostatecanceruk.org/posts/t16224-Retzius-Sparing-Laparoscopic-Radical-Prostatectomy, particularly since there are a few things that have changed in the hospital procedures in the 4 years since John had his surgery. I doubt this will be as detailed or entertaining as John’s story, but here goes:

Day 1: Monday 1st August 2022
Admitted
to hospital at 12:15, last food at 7:00 and water at 11:00.

Was seen pretty promptly by the anaesthetist, a consultant & then by my surgeon.
Slightly alarming to be advised by the consultant of all the possible side effects & potential problems that could come with the surgery just before I signed the consent form! Also slightly worrying to be told by the surgeon that as my prostate was quite large (88ml), there was a slight possibility he might have to switch from a Retzius-Sparing approach to a conventional approach.
I went to surgery at around 13:30, and woke up at around 17:30. Saw the surgeon soon after, and he advised that it had gone very well, he was able to do Retzius-Sparing & preserve the nerves both sides.

Had a couple of cannulas and a penile catheter (the Royal Surrey have stopped using supra-pubic catheters due to increased infection rates). No obvious pain as I had a spinal anaesthetic as well as general.

Moved back to Elective Surgery ward a bit later.
Had
a jacket potato with cheese & a yoghurt for supper, but found it quite difficult to eat as my mouth & throat were very dry.
The Royal Surrey are now doing Radical Prostatectomies as day cases for some patients who come in for morning surgery, but as I was “done” in the afternoon, I had an overnight stay. I didn't get much sleep! I couldn't get comfortable for long & another patient was snoring his head off all night!

Day 2
6:45 catheter collection
bag changed to leg bag
6.55 first fart!
7.20 visit from surgeon & specialist nurse, who advised
no driving for 3 weeks, no heavy lifting for 6-8 weeks, no straining (i.e. on the toilet!) for 2 weeks
Had porridge for breakfast

Saw the specialist nurse again later, she went through procedure for self removal of catheter (to be done Wed 10 Aug). Sounded straightforward enough, if a little alarming!

I was given a supply of various painkillers, some laxatives, also spare catheter bags and the things needed for removal of the catheter. Slightly relieved that they now only give anti coagulants to high risk patients (BMI over 35, age over 75, or history of blood clots), so didn’t have to worry about having to inject myself.
I was released to go home at 12:45, had a chicken curry & rice, followed by salted caramel sponge & custard for lunch.
My wife collected me at 14.15, the 25 mile journey home was OK, not in any pain, just a bit surreal to think that I was going home less than 24 hours after such a major operation!

Had
a whole tin of baked beans to eat in the evening plus 2 sachets of laxative drink.

Day 3
Slept almost non-stop from 10pm to 7am.
Surprised to find that I had almost totally filled the 2 litre night catheter bag!
Ate breakfast & lunch.
No bowel movement all day!
Walked
around the garden a couple of times to try to help get things moving.
Tummy feeling quite sore &
also feeling very bloated & uncomfortable.
Took the laxatives as advised, but only needed very occasional painkillers when the incision wounds got sore.

Day 4
Fairly good night's sleep again. Woke up before 6
am with catheter night bag full again. Hard to know where all the pee is coming from, sure I didn’t used to produce that much during a night before!
Slept some more.
Had breakfast at 9:45, and then – a huge relief – at 10:30, first bowel movement since early on Day 1! Felt much more comfortable after that.
Felt well enough to cook lunch, but it was quite tiring standing up to do it.
Walked up the garden & threw a few balls for
our dog in the evening. He’s been very well behaved and seems to realise that something out of the ordinary has happened.

Day 5
Slept from 10ish to between 3 & 4 am when I
again had to empty the full night bag.
Couldn't get back to sleep for a while,
but eventually slept again until 9ish, when the night bag was pretty full again.
Second bowel movement!
Weighed myself - had lost 2 pounds
since before the op, now 13 stone 4.
Ate breakfast.
Third bowel movement.
Felt fairly OK, and cooked lunch again.

Day 6
Full nights sleep again, apart from emptying night bag.
Breakfast
Had at least 3 bowel movements
during the day!
Cooked
lunch again.
Did some light chores around the house, but felt pretty tired afterwards.

Day 7
Good nights sleep again, but a bit alarming, woke to find that urine wasn't draining into the night bag, think the bag or tube must have been twisted? Had to stand up & untwist it to empty the leg bag into it.
Bowel movement
s seem pretty regular now.
Weighed myself again - up 3 pounds since
Day 5!
Cooked a full English breakfast
Did some tidying up in the greenhouse. Wounds a bit sore from bending forward &
my waistband rubbing on them. Don’t notice them when just sitting or standing normally, and had just been wearing loose jogging bottoms most of the time, but normal trouser waistbands/belts irritate them
Changed the catheter leg bag.

Day 8
Decent nights sleep again.
Breakfast
Bowel movement
Cooked lunch
Had a lazy day after yesterday’s exertions in the greenhouse. Walked around the garden in the evening

Day 9
Slept for almost 11 hours, apart from getting up to empty night bag
Breakfast
Bowel movement
Cooked lunch
Very hot day

Day 10
Catheter removal day. Was supposed to do it at 7:00 but
didn’t do it until nearer 8:00 because I was advised to wait until after I’d had a bowel movement, as it was supposed to make it easier.
I had a certain amount of trepidation about the procedure, but actually the catheter removal was straightforward & painless.
Had no sign of leakage before my first natural wee, which was at 9:50.
Had 2 cups of decaf coffee & several glasses of squash or cordial
during the day & several wees during the day.
Wore an incontinence pad, but there seemed to be no hint of any incontinence other than a tiny dribble when I farted one time!
It felt a bit odd & sensitive due presumably to irritation of the urethra & bladder by the catheter,
but it was an incredible relief to find that I had control. During one wee I tested whether I could stop & start, & I could.

Day 11
Slept well. Had to get up once in the night for a wee & once at about 5:00am
Went down to
the south coast for a family event. Took our dog for a 2km walk down to the shore at Emsworth and back – the first walk other than around the garden since my op.
Wore a pad, but
really didn’t need it.
Very hot day again

Day 12
Slept from 10:00 ish to 7:00 without needing to get up for a wee & no leaks.
Another very hot day

Day 13
Slept from 10:00 ish to 8:30 but had to get up twice for wees.
It’s very noticeable that I’m sleeping a lot, and yet still get quite tired during the day.

Day 14
Slept well again.
Did some chores
Cooked a full English breakfast
Discarded pad later in the day as felt confident I didn't need it

Day 15
Slept well, only had to get up once for a wee.
One of my small wounds is getting rather sore & is showing signs of being infected.
First full day without a pad &
no problems.
Did a few chores, but totally ran out of energy in the afternoon

Day 16 - 21
Gradually continuing my recovery, still a bit tired most days & some soreness from my wounds, but feeling pretty good overall. Going for a few short walks. Finding I have very slight dribbles of urine on odd occasions, but not needing an incontinence pad, which is a fantastic result.

Day 22
Drove for
the first time since my operation1.5 hour journey home from Dorset. A bit tiring, but no problems.

Day 25
Drove for the second time – to my local prostate cancer support group meeting in the afternoon. Took some of the incontinence pads from Prostate Cancer UK’s surgical support pack to donate for anyone needing them more than me.

All wounds are healing gradually, but the one that was infected is taking longer & is still sore – think it gets irritated more by trouser waistbands than the others. I still get tired most days, but that is improving.

I have a telephone consultation with the hospital at the end of September to discuss my histology results, and then need to get a blood test done 10 - 12 weeks after surgery to check my PSA, but as things stand I’m feeling pretty positive about my choice to have a radical prostatectomy.

Edited by member 03 Sep 2022 at 10:25  | Reason: Not specified

User
Posted 01 Sep 2022 at 07:48

Good luck with your recovery Toby. The worst is over. Well done

User
Posted 01 Sep 2022 at 08:20

Interesting read Toby. About to go through a RARP myself so it's good to hear others experience.

User
Posted 01 Sep 2022 at 08:27
Wishing you well with your recovery x
User
Posted 03 Sep 2022 at 08:51

Great journey and long may it continue.

I wondered when the Prof might retire…will ask him if that extends to private work when we speak in November. 

keep us posted of your progress.

Simon

User
Posted 03 Sep 2022 at 10:31

Thanks for the good wishes all.

My surgeon said the Prof is only retiring from NHS work at the Royal Surrey.

Mike (my real name, Toby's just my login name!)

User
Posted 03 Sep 2022 at 16:07

Great report, thanks.

Self-removal of foley catheters does seem to be new and increasing - I have heard of a few people doing it recently.

User
Posted 14 Sep 2022 at 09:07

Thanks so much for the diary. It was really encouraging  to read  such an upbeat  account.

It has helped me to think less nervously about the RP option for me.

I'm very pleased for you and wish you all the best for your onward journey.

Steven

User
Posted 14 Oct 2022 at 16:45

Chris, the only advice if the catheter got stuck was that I'd have to ring the hospital - and possibly have to go in to have it removed.  But fortunately removing it myself was really easy & painless.

The thought of the catheter being stitched to the urethra made me wince 😮

Thanks for the good wishes.

Mike

PS Have changed my display name from Toby because it was confusing everyone!

Show Most Thanked Posts
User
Posted 01 Sep 2022 at 07:48

Good luck with your recovery Toby. The worst is over. Well done

User
Posted 01 Sep 2022 at 08:20

Interesting read Toby. About to go through a RARP myself so it's good to hear others experience.

User
Posted 01 Sep 2022 at 08:27
Wishing you well with your recovery x
User
Posted 03 Sep 2022 at 08:51

Great journey and long may it continue.

I wondered when the Prof might retire…will ask him if that extends to private work when we speak in November. 

keep us posted of your progress.

Simon

User
Posted 03 Sep 2022 at 10:31

Thanks for the good wishes all.

My surgeon said the Prof is only retiring from NHS work at the Royal Surrey.

Mike (my real name, Toby's just my login name!)

User
Posted 03 Sep 2022 at 16:07

Great report, thanks.

Self-removal of foley catheters does seem to be new and increasing - I have heard of a few people doing it recently.

User
Posted 14 Sep 2022 at 09:07

Thanks so much for the diary. It was really encouraging  to read  such an upbeat  account.

It has helped me to think less nervously about the RP option for me.

I'm very pleased for you and wish you all the best for your onward journey.

Steven

User
Posted 13 Oct 2022 at 14:14

A quick update to my story to say that -

Histology results came back 27/09/2022, Gleason 4+3, pT3a, margins negative.

Just got my first post-op PSA results today, <0.1 ng/ml, i.e. undetectable!

So, all good!  Feeling very relieved.

My one annoying small wound that was infected & kept getting knocked/irritated by my trouser waistband has finally healed!  I had to revert back to having a plaster covering it for a couple of weeks & that has done the trick.

Oh, and regarding self-removal of catheters - just seen this https://www.royalsurrey.nhs.uk/news/royal-surrey-celebrates-success-of-selfremoval-of-catheter-project-7741

Mike

 

User
Posted 14 Oct 2022 at 11:09

Toby , were you given any advice on what to do if the catheter got stuck. My post RARP catheter got stuck on the way out and was swiftly removed, it caused me ongoing problems, self removal may have prevented that. There have been some very rare cases where the catheter has been stitched to the urethra.

Hope your recovery goes well.

Thanks Chris 

User
Posted 14 Oct 2022 at 16:45

Chris, the only advice if the catheter got stuck was that I'd have to ring the hospital - and possibly have to go in to have it removed.  But fortunately removing it myself was really easy & painless.

The thought of the catheter being stitched to the urethra made me wince 😮

Thanks for the good wishes.

Mike

PS Have changed my display name from Toby because it was confusing everyone!

 
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