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Open surgery vs RARP

User
Posted 20 May 2021 at 06:32

I was diagnosed back in January - T2cN0M0, multi-focal, Gleason 4+3. mpMRI suggested capsule intact and nothing in seminal vesicles. A 45 pin TP biopsy confirmed the cancer but found no evidence of peri-neural invasion or infiltration into adipose tissue (doesn't mean it's not there - I know).

At the time surgery was embargoed locally due to the covid lockdown so I have been on bicalutamide since January.

I now have 2 choices of surgery. RARP in Nottingham - non nerve sparing with 1 night in hospital. Open in Birmingham (with a well known cannotbenamedhere) nerve sparing with 3-4 nights in hospital.

I think I know which way to go but wondered what the consensus would be in the forum.

Edited by member 20 May 2021 at 11:37  | Reason: spelling

User
Posted 20 May 2021 at 18:29

I had RARP at City, I was 99 percent dry 4 days after catheter removal. I did have to have salvage RT three years later and did have a problem with scar tissue, possibly caused by the catheter removal. My op was 7 years ago and was just after the arrival of the Robot.

I also went to see a guy in Birmingham and I believe he only does open surgery. I didn't like his manner, he was / is not a fan of robotic surgery and seemed  say you can't beat getting your hands in there and having a good feel round, a comment I have heard a few times.

Thanks Chris

User
Posted 20 May 2021 at 19:32
That's a tough call. John opted for open surgery because the urologist gave sound explanations for why open would be preferable to keyhole in his case - firstly, previous abdominal surgery had left scarring which could impede the robot and secondly, the surgeon felt there would be a better chance of saving some nerves. That advice was very specific to his case and we believe that it was the right choice.

In your case, I would want a clear explanation from the open surgeon of why he believes he can save some nerves when your own urologist is advising non-nerve sparing. I think I would just want some reassurance that the Birmingham surgeon's ego isn't getting in the way.

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

User
Posted 20 May 2021 at 21:18

Originally Posted by: Online Community Member

I may just have to get used to the idea of being dead from the waist down.

Definitely not, you can have so much fun trying to overcome the problem. I was supposedly non nerve sparing, I will never make a full recovery, but the orgasms are out of this world.

 

Thanks Chris

User
Posted 21 May 2021 at 00:01

Hi 

Agree with Lyn , question why nerves can be spared.   More detail in my profile.  I didn't have choice, however 100% dry 48 hrs after catheter removal.  Surgeon told us he would make decision on nerve sparing during op.  Unfortunately non saved, one tumour on edge of capsule, however thankfully clear margins.   ED for 3 years, however nerves must regrow, re connect as been fine, steadily improving now over 6 years since op.   Either op option, there's a lot of collateral damage, risk probably very similar.  I was surprised how pain free and mobile I was, albeit washed out for about 2 weeks and couldn't tie my shoe laces. You are quite young so either option I'm sure you will recover well.

Regards Gordon

 

 

 

 

 

 

Edited by member 21 May 2021 at 00:03  | Reason: Not specified

User
Posted 21 May 2021 at 07:45

Consider robotic surgery at Guildford Surrey County Hospital performed by Professor Whocannotbenamedhere or one of his very experienced team.

I did, and I have no regrets whatsoever and am cancer-free three years later.

https://www.royalsurrey.nhs.uk/urology-/

Best of luck.

Cheers, John.

Edited by member 21 May 2021 at 08:33  | Reason: Not specified

User
Posted 21 May 2021 at 09:41

Thanks to everyone who has chipped in - you have all been a tremendous help to me in coming to my final choice, which is to focus on getting rid of the cancer (I hope) first and foremost.  I'll deal with what comes after when I get there.

Cheers - you are all ⭐⭐⭐⭐⭐

Show Most Thanked Posts
User
Posted 20 May 2021 at 18:29

I had RARP at City, I was 99 percent dry 4 days after catheter removal. I did have to have salvage RT three years later and did have a problem with scar tissue, possibly caused by the catheter removal. My op was 7 years ago and was just after the arrival of the Robot.

I also went to see a guy in Birmingham and I believe he only does open surgery. I didn't like his manner, he was / is not a fan of robotic surgery and seemed  say you can't beat getting your hands in there and having a good feel round, a comment I have heard a few times.

Thanks Chris

User
Posted 20 May 2021 at 19:32
That's a tough call. John opted for open surgery because the urologist gave sound explanations for why open would be preferable to keyhole in his case - firstly, previous abdominal surgery had left scarring which could impede the robot and secondly, the surgeon felt there would be a better chance of saving some nerves. That advice was very specific to his case and we believe that it was the right choice.

In your case, I would want a clear explanation from the open surgeon of why he believes he can save some nerves when your own urologist is advising non-nerve sparing. I think I would just want some reassurance that the Birmingham surgeon's ego isn't getting in the way.

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

User
Posted 20 May 2021 at 19:36

I probably saw the same chap - quite an ego and definitely tried to put me off the robot (probably means he couldn't master it!). I was initially being lured in by the prospect of some nerve sparing but if I go to Brum it means even more delay. I may just have to get used to the idea of being dead from the waist down.

User
Posted 20 May 2021 at 21:18

Originally Posted by: Online Community Member

I may just have to get used to the idea of being dead from the waist down.

Definitely not, you can have so much fun trying to overcome the problem. I was supposedly non nerve sparing, I will never make a full recovery, but the orgasms are out of this world.

 

Thanks Chris

User
Posted 20 May 2021 at 21:54

Originally Posted by: Online Community Member
I would want a clear explanation from the open surgeon of why he believes he can save some nerves when your own urologist is advising non-nerve sparing.

Indeed - at first I was swayed by the willingness to spare the nerves (it's as though he would because he could) plus the high profile, but in contrast the guy who did my biopsy and would do the RARP has been nothing but brutally honest that his job is to get rid of the cancer and try to keep me continent. That's it.  Sadly I'm going into this with a pre-existing degree of ED so nerve sparing or not I don't think I'm looking at a good outcome in that department.

User
Posted 20 May 2021 at 21:58

Originally Posted by: Online Community Member
I will never make a full recovery, but the orgasms are out of this world.

That's cheered me up no end as I was feeling pretty low. Cheers Chris :-)

User
Posted 20 May 2021 at 23:46
"Sadly I'm going into this with a pre-existing degree of ED so nerve sparing or not I don't think I'm looking at a good outcome in that department."

Don't be defeated before you have tried. My dad was left with ED after his prostatectomy at the age of 62. He has been widowed twice since then but has a new partner and is still enjoying sex. He was 84 last month. He uses a very high dose injection.

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

User
Posted 21 May 2021 at 00:01

Hi 

Agree with Lyn , question why nerves can be spared.   More detail in my profile.  I didn't have choice, however 100% dry 48 hrs after catheter removal.  Surgeon told us he would make decision on nerve sparing during op.  Unfortunately non saved, one tumour on edge of capsule, however thankfully clear margins.   ED for 3 years, however nerves must regrow, re connect as been fine, steadily improving now over 6 years since op.   Either op option, there's a lot of collateral damage, risk probably very similar.  I was surprised how pain free and mobile I was, albeit washed out for about 2 weeks and couldn't tie my shoe laces. You are quite young so either option I'm sure you will recover well.

Regards Gordon

 

 

 

 

 

 

Edited by member 21 May 2021 at 00:03  | Reason: Not specified

User
Posted 21 May 2021 at 07:20

I'm not sure what's best in your case but I had open, nerve sparing surgery March last year by a well known surgeon in Birmingham. I was T2C at the time of the operation. I've been content with the outcome so far. 

Good luck

User
Posted 21 May 2021 at 07:45

Consider robotic surgery at Guildford Surrey County Hospital performed by Professor Whocannotbenamedhere or one of his very experienced team.

I did, and I have no regrets whatsoever and am cancer-free three years later.

https://www.royalsurrey.nhs.uk/urology-/

Best of luck.

Cheers, John.

Edited by member 21 May 2021 at 08:33  | Reason: Not specified

User
Posted 21 May 2021 at 09:37

Originally Posted by: Online Community Member
Unfortunately non saved...   ED for 3 years, however nerves must regrow, re connect as been fine, steadily improving now over 6 years since op.

It's reassuring to know that it is at least possible - let's see if I get lucky 🍀

Thanks

User
Posted 21 May 2021 at 09:41

Thanks to everyone who has chipped in - you have all been a tremendous help to me in coming to my final choice, which is to focus on getting rid of the cancer (I hope) first and foremost.  I'll deal with what comes after when I get there.

Cheers - you are all ⭐⭐⭐⭐⭐

User
Posted 25 Jun 2021 at 09:50

So... a little update.  I'm now 2 weeks and a day past my RARP and 1 week and a day past my TWOC.

The surgeon was very pleased with the way the operation went and even though we had a recap on his reservations about nerve sparing, in my case it turned out that I was one of the fortunate ones where the neurovascular bundles just fall away from the prostate without any intervention.  One side he left intact and he took a little of the other bundle (on the side where I was 4+3).  It also helped that I used the 3-4 month wait for surgery to lose about 12-13 kg of lard and clear the way for him.

Home next day feeling like an elephant had stomped on my guts.  Lifetime supply of laxatives provided along with 2 pairs of TED socks to squeeze into for 28 days and 30 clexane pre-filled syringes to jab into what little love handle I've got left (looking like a bruised pin cushion), along with 6 night bags and a useless stand (use a bucket).

The catheter and leg bag were just grim - constantly wondering "Is it full? Has the line kinked? Is it tugging?"  I honed an excellent skill set of showering and toileting with bag and I hope never to use those skills again.  I had got myself some instillagel just in case but I'm relieved (ha!) that I didn't need to use it.  Very grateful to this forum for tipping me off about the catheter bypass that accompanies a bowel movement, at least I wasn't parked there in a panic thinking "OMG that can't be right!!".

More than anything it's the incontinence post-TWOC that gets me down.  I was dry at night from the first night - delighted to wake up in the dark and think "I need to go" rather than to find that I already had gone.  But daytime it's a different story.  I can sneeze without fear but even just relaxing at home there are odd drips and leaks at random.  If I try just a short walk outside on the flat, say just a mile, I'm leaking like crazy - drip, drip, dribble every step.  I'm probably expecting too much, but I'm not going to lie, it's really getting me down.

Between diagnosis and operation I think I've been on a pretty even keel mentally but the operation itself (it's my first ever) really woke me up to the reality that I have cancer (fingers crossed "had" but there's no guarantee) that really has brought tears.

Pain and swelling very much reduced and strength is returning.  Now it's just the wait for the verdict from histopathology.

Cheers
Upkeep

User
Posted 25 Jun 2021 at 13:06
Very early days but due to situation it's always something on your mind. Usually this can improve over time but could take I quite awhile. You could keep a record of your progress so you can be encouraged at the situation improves.
Barry
User
Posted 25 Jun 2021 at 13:22

I really wouldn't worry about the day time leakage. Its perfectly normal. As soon as i got tired in the early days I had very little control. It started improving but was probably about week 10 before I felt "normal"

Edited by member 25 Jun 2021 at 13:23  | Reason: Not specified

User
Posted 26 Jun 2021 at 07:32

Good to know it's probably just me being impatient :-)

User
Posted 23 Jul 2021 at 13:23

Does anyone have experience of post-op incisional hernia?  I'm now about 6 weeks post RARP and most of the trocar wounds have healed nicely with only the tiniest "lump" underneath.  There is one trocar wound that has healed nicely in the skin but underneath it there is a firm (and somewhat tender) lump about the size of a kidney bean.  I'm wondering if it's just a bit of "angry" scar tissue or if it could be the beginnings of an incisional hernia - seems a bit small to be honest.  My out patient assessment is 2 weeks away so I can ask the surgeon in person then, but I was curious to find out if anyone had had a hernia after surgery.

Upkeep

Edited by member 23 Jul 2021 at 19:00  | Reason: Spelling (again)

User
Posted 23 Jul 2021 at 15:13

A up mate yes i have a slight bulge under one of my wounds as well think its just scar tissue  hope your keeping ok and don't forget that pint when your ready take care 

Bob

User
Posted 23 Jul 2021 at 15:58
OK, I had to look it up but, a TROCAR wound is the remnant and consequence of a laparoscopic perforation during surgery.

Cheers, John.

User
Posted 23 Jul 2021 at 16:02
Hernia is a common problem after keyhole / LRP - particularly in men who tried to do too much too soon.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 10 Sep 2021 at 09:20

Continence update... 3 months post-op and I no longer need to wear a pad in the daytime. Totally dry. I'll probably still pop one in if I go to the pub or have a few glasses with dinner (pride before a fall etc) but overall I'm pretty happy with that.

Surgeon's opinion of my lump was "fatty necrosis" and to be fair it has now completely resolved.

Only one thing remains and that's the total ED. Currently not even 100 mg sildenafil will shift it so I continue with the pump 3 times a week.  Not too discouraged though as I figured this would be the last function to return to anything like normal. At least the blue pill side effects haven't been too bad.

Post-op PSA <0.01 ng/mL next one due next week. Will need to watch this like a hawk as my stage turned out to be T3aN0M0 although Gleason went from 4+3 to 3+4. Not sure how reliable the Gleason is as I had been on 150 mg bicalutamide for 4 months or so.

 
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