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Retzius-Sparing RARP - Which Surgeon?

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User
Posted 16 Dec 2021 at 11:21

Hi lovely peeps, looking for advice on choosing the right surgeon

I know we can't name names on here, but general guidance would be great, or please message me if you prefer.

My diagnosis is PSA 5.8, 36ml prostate, Gleason 3+4, T2, 12mm lesion on right posterior peripheral zone (low right rear, near RH nerve bundle), contained within capsule. I have decided on Retzius-Sparing RARP, following various consultations, research, and discussions on here, particularly by TechGuy, Bollinge, and Jeremys (who I spoke to, thanks mate)

I had an excellent consultation with a surgeon who operates at Princess Grace Hospital, not the surgeons TechGuy/Bollinge/Jeremys had but still a top RS_RARP specialist, claims 1,000+ ops and BAUS list 251 for 2017-19 with excellent outcomes. He does Retzius-Sparing, NeuroSAFE, supra-pubic catheter, and says good chance of nerve sparing. All sounds good, he clearly knows his stuff, and I'm booked for op in late Jan.

However various people suggest I talk to other surgeons, particularly the two Santis/LBH guys. Been trying to contact them but taking time. So this is my question - should I persevere with other surgeons, or just settle with my current choice and stop worrying about it?

Or to put it another way, any reasons why I should NOT go with him, or Princess Grace Hospital? Obviously don't name&shame on here, but message me if you wish, and general guidance on making this decision would be much appreciated. I've done lots of googling, however there's limited info on Princess Grace, not listed on BAUS or NPCA.

This feels like a life-changing decision, I tend to overthink those, and don't want regrets. Cheers, B

User
Posted 18 Dec 2021 at 16:18

If I did it all again I’d go the same path. The prof whocannotbenamedhere might be worth chatting to if only for a second opinion/view. I did PGH for my biopsy before I met the Prof. In my view a nice place but I preferred London Bridge. Plus at the time the CQC report wasn’t up to the same levels of  London Bridge which has top marks all round. London Bridge food was epic and huge rooms in comparison although PGH had all  the skyTV channels.  London Bridge private floor is part of Guys Cancer centre and they had all the very latest robotic systems plus I felt it’s not a bad thing to be right on top of one of the best NHS hospitals should, in the unlikely event, anything go very wrong.

User
Posted 21 Dec 2021 at 18:36

Originally Posted by: Online Community Member


Re choice of surgeon, I'm realising just how nuanced this question is. I was rather naive to ask it...

There is no magic bullet, outcome is largely down to your personal situation, and what the surgeon finds when they get in there. Going private and thus having the choice of surgeon is not a magic bullet (I'm now seeing it more like pandora's box). Things like NeuroSAFE and Retzius-sparing can help in some situations, but are really not that significant.

spot on Benchmark. I think at first when you get diagnosed you panic and just want the best surgeon to get the cancer out. But there is no such thing as the “best” surgeon. It all depends on personal circumstance, site and spread of tumour etc. Same with procedures like Retizus sparing and NeuroSAFE. These can be really useful for some men but not for others. Wishing you the best of luck with everything 

User
Posted 09 Feb 2022 at 15:41
A brief follow-up, I had surgery on 28th Jan, same surgeon as Jeremys, at LBH/Guys. He did a fabulous job, and I seem to have been very fortunate with the outcome. Good negative margins, and fully continent (TWOC on day 7, now day 12). I'm posting a diary of my experience on here, separate thread, in the hope it helps others considering RARP

Thanks to everyone for your help and advice in choosing the right treatment, and what to expect. Hugely useful

Cheers, Ben

User
Posted 16 Dec 2021 at 12:25
Settle with what you have in place - you are over-thinking and if the other people you have contacted are not responding quickly, that would make me worried that there would be further unnecessary delays in being seen and getting the job done.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 16 Dec 2021 at 21:12

I contacted "hewhoshallnotbenamedhere" directly and received a prompt reply, but in the end I decided to go with the NHS. It's impossible to say whether I should have chosen differently, but given my circumstances, and what I've read, I think my outcomes have been pretty good - for now at least.

In 5/10 years things might seem different - who knows?

User
Posted 18 Dec 2021 at 11:36

Also looking for a surgeon (I think ralp) Just signed up here (have newly diagnosed urgently requiring surgery family member) and not allowed to dm first yet. Would appreciate specific advice on hewhocannotbenamedhere from your findings and from other guys’ you mentioned (it all sounds like a riddle at this stage to me - not able to follow the hints🙈) if that’s possible at all please?

User
Posted 18 Dec 2021 at 16:28

Hi Katya

Just search Santis. For me I wanted one of the highest volume surgeons with good data and with a proven track record. Also be mindful that no surgeon can work miracles and in my case had I left it much longer my outcome could have been very different irrespective of surgeon.  There will always be varying outcomes as that’s the nature of cancer unfortunately. Stacking the cards in ones favour at least gives potentially better odds for a positive outcome.

cheers

Simon

 

Edited by member 18 Dec 2021 at 16:30  | Reason: Not specified

User
Posted 20 Dec 2021 at 20:29

Extra peace of mind? Have you had any DMs from the men who feel their lives have been ruined by these so called top guys? No? Or the ones who were rejected by a 'top guy' in case he ruined their stats or the man whose top dig surgeon refused to see him for any follow ups after the lab found a positive margin? No? Just the ones who had good outcomes? The posts and replies on this forum are skewed by inherent bias and the DMs are probably even more so.

With a bulging prostate and spread to muscles, I don't think choosing a fancy surgeon in London is your biggest issue. Your likelihood of having a great outcome is rather less than some of these members who are recklessly recommending based on their own apparently great outcome.

Do you know what the risks are? Are you clear on whether you are suitable for nerve sparing? Which muscles are affected? What was the MDT'S advice on whether you are even suitable for RP or whether it would be with planned adjuvant RT? What is your biggest worry - incontinence, erectile dysfunction or the cancer not being removed?

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

User
Posted 20 Dec 2021 at 22:14

I think you are quite confused - suggest you download the toolkit from this website or phone the number at the top of the page and order a paper copy. You can't make proper decisions until you understand your situation and choices.

Radical prostatectomy (RP) is surgical removal of the prostate as a first treatment. You can't have radical vs robotic- robotic RP IS radical. The different kinds of RP are
- open surgery
- keyhole surgery (aka laparoscopic or LARP)
- robotic surgery (aka Da Vinci or RALP)

RP can be nerve sparing, non nerve sparing or partial nerve sparing - the more nerves removed, the less likely to be able to have erections afterwards.

Then there is retzius sparing RP which makes incontinence less likely, and neurosafe or frozen section RP where tiny sections are looked at under a microscope during the op if there is a query about whether nerve sparing is a good idea.

And then there are men whose diagnosis means that surgery is not an option or surgery can be done but it is already known that this will not remove all the cancer so other treatment will follow. This is known as adjuvant treatment.

You said "Biopsy states: “Etraprostate  infiltration to skeletal muscles, no invasion to adiose tissue” - not sure what that really means?" It means that the cancer has spread into the muscle tissue at the apex of the prostate so a surgeon will need to make a wide cut to remove it but there is no sign of cancer in the fat layers (adipose) around that area.

With your stats I am a little surprised than anyone would be prepared to operate except with a plan for follow up radiotherapy if required so I guess one of the questions you need to ask the surgeons is "is it possible to remove all the cancer or will radiotherapy be needed anyway?" If RT would be needed anyway, the next question is "what is the benefit of having surgery if I will also need RT and risking two lots of side effects?" You will also want to ask whether nerve sparing is possible or advisable.

Edited by member 21 Dec 2021 at 10:03  | Reason: Not specified

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

User
Posted 21 Dec 2021 at 09:43
Agreed, useful post LynEyre

Re choice of surgeon, I'm realising just how nuanced this question is. I was rather naive to ask it...

There is no magic bullet, outcome is largely down to your personal situation, and what the surgeon finds when they get in there. Going private and thus having the choice of surgeon is not a magic bullet (I'm now seeing it more like pandora's box). Things like NeuroSAFE and Retzius-sparing can help in some situations, but are really not that significant.

Worth getting an experienced surgeon, particularly if your case is challenging, but there are plenty of those out there, both private and NHS, and BAUS lists their basic stats. Anecdotal info (such as you get on here) should be taken with a pinch of salt. As LynEyre says, if someone has a good outcome they're bound to rave about their surgeon.

The main thing I have learnt is that you should explore your options, if only to avoid the regret of not having done so, should things not go well. I have spoken to 4 surgeons, and not one has felt I was wasting their time. I'm now comfortable with my choice. But to be honest, my original NHS surgeon was very good.

User
Posted 21 Dec 2021 at 09:59

Originally Posted by: Online Community Member
I think you should pay heed to the wise words of Matron above (as ever).

I and three friends all had prostatectomies four years ago, three of us by some of the top-rated expensive surgeons alluded to above, and another on the NHS.

I am the only one who hasn’t had hormone treatment and radiation therapy since, so maybe they should have eschewed surgery and gone for an an oncological HT & RT solution in the first place.

Best of luck, whatever path you choose.

Cheers, John.

Exactly. And while you are cancer-free, you have total erectile dysfunction and a much shortened penis. You are okay with it but someone else might consider that to be a terrible outcome.

It would be interesting to know whether your friends recovered erections; is that something that you ever discuss? 

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

User
Posted 21 Dec 2021 at 14:21

Dr C is a fantastic surgeon (marsden based I think) grant60 saw him and was in at London Bridge at same time as me. He had his op day before and it was fantastic to meet in person. We would go on our daily exercise together laughing off the shoulder CO2 gas pain while giving the nurses plenty of banter. It was like student halls until our respective good ladies reeled us in 😵‍💫🤪🤣 

My decision to go with the prof was based not just on his very substantial stats, which were impressive, but the fact he travels around the world giving instructional presentations at urology conferences. Seemed like a good idea to go with a chap regarded as being a pioneer of minimally invasive urological surgery. Plus he had the same dry sense of humour I have. Through my professional computer-geek memberships we have had a talk from a top urological surgeon  from the North East…the prof turned out to be his mentor 😵‍💫 

During my surgery things turned out to be more complicated and required some additional bladder neck work. The prof took this in his stride as he revels in more complex cases when he can get them. Before surgery I watched his work on YouTube. Having some exposure to robotic systems and cybernetics his dexterity and talent was very obvious to me when operating…I could tell from decisive cuts and the general work flow the passion put in as it was like watching Picasso at work. For me it was a no brainer to entrust him with surgery in such a critical area.  

Fortunately I’ve not noticed any reduction in length. I took a pic before and after. The later was hard to explain as the nurse walked in on me, immediately post op, when I was checking the engine room. I’ve never seen a nurse speechless but it was a refreshing first. I compensated the embarrassment by helping her spec up a gaming laptop for her son while burning time during my 3 day stay.

post op potency is good. Not what it used to be but the morning glory still happens as good as ever but if tired things can be below parr whereas they were not pre-op. Tadalafil fills in where needed so I count myself as fortunate. For me me I expected no functionality post op and my expectations were for some degree of incontinence too but being cancer free was primary goal. Having continence and potency has been a fortunate bonus.

Edited by member 21 Dec 2021 at 14:24  | Reason: Not specified

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User
Posted 16 Dec 2021 at 12:25
Settle with what you have in place - you are over-thinking and if the other people you have contacted are not responding quickly, that would make me worried that there would be further unnecessary delays in being seen and getting the job done.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 16 Dec 2021 at 12:34
Thanks LynEyre!
User
Posted 16 Dec 2021 at 21:12

I contacted "hewhoshallnotbenamedhere" directly and received a prompt reply, but in the end I decided to go with the NHS. It's impossible to say whether I should have chosen differently, but given my circumstances, and what I've read, I think my outcomes have been pretty good - for now at least.

In 5/10 years things might seem different - who knows?

User
Posted 18 Dec 2021 at 11:36

Also looking for a surgeon (I think ralp) Just signed up here (have newly diagnosed urgently requiring surgery family member) and not allowed to dm first yet. Would appreciate specific advice on hewhocannotbenamedhere from your findings and from other guys’ you mentioned (it all sounds like a riddle at this stage to me - not able to follow the hints🙈) if that’s possible at all please?

User
Posted 18 Dec 2021 at 16:18

If I did it all again I’d go the same path. The prof whocannotbenamedhere might be worth chatting to if only for a second opinion/view. I did PGH for my biopsy before I met the Prof. In my view a nice place but I preferred London Bridge. Plus at the time the CQC report wasn’t up to the same levels of  London Bridge which has top marks all round. London Bridge food was epic and huge rooms in comparison although PGH had all  the skyTV channels.  London Bridge private floor is part of Guys Cancer centre and they had all the very latest robotic systems plus I felt it’s not a bad thing to be right on top of one of the best NHS hospitals should, in the unlikely event, anything go very wrong.

User
Posted 18 Dec 2021 at 16:28

Hi Katya

Just search Santis. For me I wanted one of the highest volume surgeons with good data and with a proven track record. Also be mindful that no surgeon can work miracles and in my case had I left it much longer my outcome could have been very different irrespective of surgeon.  There will always be varying outcomes as that’s the nature of cancer unfortunately. Stacking the cards in ones favour at least gives potentially better odds for a positive outcome.

cheers

Simon

 

Edited by member 18 Dec 2021 at 16:30  | Reason: Not specified

User
Posted 19 Dec 2021 at 19:38
Hi All

Thanks for your replies, most reassuring, sounds like I'm on the right track

And thanks for the private messages - unfortunately I can't reply as I'm a new member, but useful stuff.

I'll keep you posted on how things go

Cheers, B

User
Posted 20 Dec 2021 at 16:07

The issue is I would really like to know who  is a mystery expert surgeon is and seeing positive outcomes in some lively people who very usefully share their experiences here, would be nice to know who was their surgeon to have that extra peace of mind when choosing one.. 

Can I kindly ask anyone who’s happy to share who their surgeon was or know of a good one for robotic surgery in complex case ( capsule is bulging about to burst and muscles infiltrated - so really need one who’s done a fair bit of these to feel there are chances to save functions.. ) dm me with the name please? Can’t dm myself because new here.. 

User
Posted 20 Dec 2021 at 16:12

I think I might have “tailgated” on Benchmark’s post here. Hope no harm done - will give posting new a go

 

Kat

User
Posted 20 Dec 2021 at 16:20

Don't worry about tailgating, you're more than welcome to join the thread. I posted it partly thinking it may help others

I can't DM you either as I'm new, but there should be enough clues above for you to work out who's who

BAUS publish stats on all surgeons here https://www.baus.org.uk/patients/surgical_outcomes/radical_prostatectomy/

Edited by member 20 Dec 2021 at 16:20  | Reason: Not specified

User
Posted 20 Dec 2021 at 16:33

See above 😵‍💫

User
Posted 20 Dec 2021 at 16:39

Hi Simon yes thank you I looked up Santis - but dr E or Dr C? Not allowed to reply back yet here - sorry Benchmark for being on your tail

 

kat

User
Posted 20 Dec 2021 at 16:51

Prof whocannotbenamed would be my preferred choice 

User
Posted 20 Dec 2021 at 20:29

Extra peace of mind? Have you had any DMs from the men who feel their lives have been ruined by these so called top guys? No? Or the ones who were rejected by a 'top guy' in case he ruined their stats or the man whose top dig surgeon refused to see him for any follow ups after the lab found a positive margin? No? Just the ones who had good outcomes? The posts and replies on this forum are skewed by inherent bias and the DMs are probably even more so.

With a bulging prostate and spread to muscles, I don't think choosing a fancy surgeon in London is your biggest issue. Your likelihood of having a great outcome is rather less than some of these members who are recklessly recommending based on their own apparently great outcome.

Do you know what the risks are? Are you clear on whether you are suitable for nerve sparing? Which muscles are affected? What was the MDT'S advice on whether you are even suitable for RP or whether it would be with planned adjuvant RT? What is your biggest worry - incontinence, erectile dysfunction or the cancer not being removed?

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

User
Posted 20 Dec 2021 at 21:51

Thank you Benchmark for being understanding and supporting.

Thanks Tech guy - I searched sentis and can see your post above though still have no idea who hewhocannotbenamed is exactly. One has more complications than the other but is it because he is mainly dealing with less complex cases?..

lynEyre - much grateful for insightful post - we are not sure what some of acronyms mean -  RP? Ajuviant RT.. will search 

Scheduled consultations with dr W and Dr E - would be good to know what to ask. 

Biopsy states: “Etraprostate  infiltration to skeletal muscles, no invasion to adiose tissue” - not sure what that really means.. 

Hoping to preserve as much functions as possible - he still has hopefully a life to live. The cancer is highly aggresive - grade 5 so removing is paramount.. 

Wonder what pros and cons in radical vs robotic surgery.. 

tricky.. 

User
Posted 20 Dec 2021 at 22:14

I think you are quite confused - suggest you download the toolkit from this website or phone the number at the top of the page and order a paper copy. You can't make proper decisions until you understand your situation and choices.

Radical prostatectomy (RP) is surgical removal of the prostate as a first treatment. You can't have radical vs robotic- robotic RP IS radical. The different kinds of RP are
- open surgery
- keyhole surgery (aka laparoscopic or LARP)
- robotic surgery (aka Da Vinci or RALP)

RP can be nerve sparing, non nerve sparing or partial nerve sparing - the more nerves removed, the less likely to be able to have erections afterwards.

Then there is retzius sparing RP which makes incontinence less likely, and neurosafe or frozen section RP where tiny sections are looked at under a microscope during the op if there is a query about whether nerve sparing is a good idea.

And then there are men whose diagnosis means that surgery is not an option or surgery can be done but it is already known that this will not remove all the cancer so other treatment will follow. This is known as adjuvant treatment.

You said "Biopsy states: “Etraprostate  infiltration to skeletal muscles, no invasion to adiose tissue” - not sure what that really means?" It means that the cancer has spread into the muscle tissue at the apex of the prostate so a surgeon will need to make a wide cut to remove it but there is no sign of cancer in the fat layers (adipose) around that area.

With your stats I am a little surprised than anyone would be prepared to operate except with a plan for follow up radiotherapy if required so I guess one of the questions you need to ask the surgeons is "is it possible to remove all the cancer or will radiotherapy be needed anyway?" If RT would be needed anyway, the next question is "what is the benefit of having surgery if I will also need RT and risking two lots of side effects?" You will also want to ask whether nerve sparing is possible or advisable.

Edited by member 21 Dec 2021 at 10:03  | Reason: Not specified

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

User
Posted 21 Dec 2021 at 02:33
I think you should pay heed to the wise words of Matron above (as ever).

I and three friends all had prostatectomies four years ago, three of us by some of the top-rated expensive surgeons alluded to above, and another on the NHS.

I am the only one who hasn’t had hormone treatment and radiation therapy since, so maybe they should have eschewed surgery and gone for an an oncological HT & RT solution in the first place.

Best of luck, whatever path you choose.

Cheers, John.

User
Posted 21 Dec 2021 at 09:43
Agreed, useful post LynEyre

Re choice of surgeon, I'm realising just how nuanced this question is. I was rather naive to ask it...

There is no magic bullet, outcome is largely down to your personal situation, and what the surgeon finds when they get in there. Going private and thus having the choice of surgeon is not a magic bullet (I'm now seeing it more like pandora's box). Things like NeuroSAFE and Retzius-sparing can help in some situations, but are really not that significant.

Worth getting an experienced surgeon, particularly if your case is challenging, but there are plenty of those out there, both private and NHS, and BAUS lists their basic stats. Anecdotal info (such as you get on here) should be taken with a pinch of salt. As LynEyre says, if someone has a good outcome they're bound to rave about their surgeon.

The main thing I have learnt is that you should explore your options, if only to avoid the regret of not having done so, should things not go well. I have spoken to 4 surgeons, and not one has felt I was wasting their time. I'm now comfortable with my choice. But to be honest, my original NHS surgeon was very good.

User
Posted 21 Dec 2021 at 09:48

All wise words. In reality unfortunately with cancer even when low grade (localised) still has all the properties and ability to spread. Early research is starting to show metastasis can occur a lot more early on that one would think. Metastasis is not fully understood but research is gradually revealing what goes on….it’s why I acted fast as at some stage the cancer seeds remote locations and can remain dormant for an unspecified time. It’s very likely in my case, although this far a great outcome, there are cancer cells sitting quietly within an intracellular matrix getting messages from adjacent cells not to grow. This signal can fail over time and then the whole process of interventional medicine begins again to treat it.

in terms of who does the work at the coal face. With my op there were surgical staff in training but I confirmed the prof would be doing the actual procedure or I’d be enquiring about a discount :-)

Best of luck with the path you take.

Simon

Edited by member 21 Dec 2021 at 09:52  | Reason: Not specified

 
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