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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 hintsπŸ™ˆ) 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 😡‍πŸ’«πŸ€ͺ🀣 

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 😡‍πŸ’« 

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 hintsπŸ™ˆ) 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 😡‍πŸ’«

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

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 10:31

Originally Posted by: Online Community Member
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.

Spot on, Benchmark. Also worth noting that the stats for different surgeons can't always be compared side by side as some are more willing to take on T2b / T3 cases while others cherry-pick only nice tidy T1 / T2a ... there is a way of deducing that from the BAUS data, but it is not immediately obvious. There are also a few urologists who refuse to share their outcomes with BAUS even though they are supposed to. 

Regret is a big deal. John rushed into the surgery despite our surgeon's advice to go home & take some time to think it all through. He has at times bitterly regretted having the op, mostly I think because he didn't take in the known and potential side effects, and this has caused him (and me) great distress since. I am so pleased that you have done all you have and now feel informed and comfortable with your decision. Best of luck to you!   

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

User
Posted 21 Dec 2021 at 10:58

Originally Posted by: Online Community Member
there is a way of deducing that from the BAUS data, but it is not immediately obvious

Just checking, I assume you mean by looking at the "Average Patient Risk Profile" at the bottom of each surgeon's stats page?

I found that useful, as some well-regarded surgeons have quite high complication rates, which make sense when you realise they do lots of T3 patients

User
Posted 21 Dec 2021 at 12:31

Very useful flow of info from everyone. 

From the point of diagnose dr advised RP followed by RT.

RP now anyway because of age - 46, and grade - 5, with likelihood of cancer coming back and needing surgery after RT anyway with much poorer outcomes then because of previous RT. 

So yes trying to find who has done SUCH complex surgeries quite a bit and that’s proving tricky as stats show low post op complications but not clear how risky cases were. 

Leaning towards dr C at Santis, prob will try inNHS because i surance proved some “preexisting”.. tbc have to run 

kat

thank you all

User
Posted 21 Dec 2021 at 13:22
The main objective with Lyn's John of dealing with his cancer, at least thus far, has been achieved by surgery and then RT albeit with side effects. Now compare this with my situation. The surgeon I saw, also representing the view of the MDT, thought it preferable that I had RT because it was doubtful all the cancer could be removed by surgicallly taking away the Prostate. However, the surgeon did say he would do a Prostatectomy if I wished but didn't recommend it. So I took the advise and after much research had what appeared to be the best RT available at the time (2008). Results for the first 2 to three years looked good, low PSA and no sight of cancer on high quality MRI's. Unfortunately, subsequent increasing PSA's and MRI's showed a small tumour within the Prostate. (Maybe there were some radio resistant cancer cells or some missed by the RT). I did consider a salvage Prostatectomy at this point as there are a few surgeons who will do this much more difficult operation after RT because a radiated Prostate is much more difficult to work on. However, I was told that this would almost 100% be likely to result in permanent urinary incontenance, which is something I wanted to avoid. So I had salvage HIFU which has just been repeated. Now I can say that had I had my Prostate removed at the outset, I may well have needed RT to the Prostate Bed but would not have needed subsequent HIFU because of not having a Prostate. There is no indication of any cancer outside the Prostate Bed now. The Royal Marsden went along with RT first but with the benefit of hindsight was this best? In short, I would now rather be in John's clinical situation than mine, though of course no two cases are quite the same.
Barry
User
Posted 21 Dec 2021 at 13:39

Originally Posted by: Online Community Member

Originally Posted by: Online Community Member
there is a way of deducing that from the BAUS data, but it is not immediately obvious

Just checking, I assume you mean by looking at the "Average Patient Risk Profile" at the bottom of each surgeon's stats page?

I found that useful, as some well-regarded surgeons have quite high complication rates, which make sense when you realise they do lots of T3 patients

 

Yes, so if you take three well known urologists:- 

Mr E takes on fewer T3s than the national average, his patients have a lower PSA than the national average and undertook 650 ops in 2 years so it isn't a surprise that he has proportionately fewer complications. 

Mr C takes on men with a slightly higher than average PSA, fewer G3+3 and more T3s than average so the fact that his complication rate is far lower than average is impressive.

Mr P's patients tend to have a PSA slightly lower than national average, he operates on fewer G(3+3) patients but he takes on 50% more T3 men than national average. It is therefore no surprise that his complication rate is slightly higher than might be expected. 

Mr M doesn't publish :-( 

You can also identify really interesting patterns by hospital. St James's, where I live, takes on a high number of T3s and men with higher than average PSA. We know that men in West Yorkshire have poorer health stats than in Surrey, for example - higher average BMI, more heart attacks, stroke rate is higher, etc - and they tend to be diagnosed with PCa later than men in other areas. As a result, nomograms like MSK have to be adjusted for a man diagnosed in West Yorks because his outcome is likely to be worse than the nomogram predicts. St James has developed its own nomograms to counteract this. The stats for St James' urologists therefore fit with the regional context. 

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

User
Posted 21 Dec 2021 at 13:44

Originally Posted by: Online Community Member
In short, I would now rather be in John's clinical situation than mine, though of course no two cases are quite the same.

That really surprises me Barry! You are correct about listening to advice though - in the initial diagnosis letter, John's urologist said that although he was a T1a with a PSA of 3.1 there was a 55% chance of recurrence post-op. J didn't engage with that and went ahead with the surgery; no great surprise that the T1a was a gross underestimate, it was T3 and he needed salvage RT :-( 

"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 😡‍πŸ’«πŸ€ͺ🀣 

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 😡‍πŸ’« 

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

User
Posted 21 Dec 2021 at 16:46

Originally Posted by: Online Community Member

Originally Posted by: Online Community Member

Originally Posted by: Online Community Member
there is a way of deducing that from the BAUS data, but it is not immediately obvious

Just checking, I assume you mean by looking at the "Average Patient Risk Profile" at the bottom of each surgeon's stats page?

I found that useful, as some well-regarded surgeons have quite high complication rates, which make sense when you realise they do lots of T3 patients

 

Yes, so if you take three well known urologists:- 

Mr E takes on fewer T3s than the national average, his patients have a lower PSA than the national average and undertook 650 ops in 2 years so it isn't a surprise that he has proportionately fewer complications. 

Mr C takes on men with a slightly higher than average PSA, fewer G3+3 and more T3s than average so the fact that his complication rate is far lower than average is impressive.

Mr P's patients tend to have a PSA slightly lower than national average, he operates on fewer G(3+3) patients but he takes on 50% more T3 men than national average. It is therefore no surprise that his complication rate is slightly higher than might be expected. 

Mr M doesn't publish :-( 

You can also identify really interesting patterns by hospital. St James's, where I live, takes on a high number of T3s and men with higher than average PSA. We know that men in West Yorkshire have poorer health stats than in Surrey, for example - higher average BMI, more heart attacks, stroke rate is higher, etc - and they tend to be diagnosed with PCa later than men in other areas. As a result, nomograms like MSK have to be adjusted for a man diagnosed in West Yorks because his outcome is likely to be worse than the nomogram predicts. St James has developed its own nomograms to counteract this. The stats for St James' urologists therefore fit with the regional context. 

 

this is gold

assuming E and C are santis,

who/where are mr M and P?

just had a consultation with mr W hoping for NHS referral with mr C but mr P stats looks nice. Considering combo of grade and position and stage was told this is 5%case, which means it is rare and complex and while age is young this really calls for experience to deal with whatever comes out during surgery to have best chance at saving as much as possibly possible quality of life. 

mr P?.. I know cant name but please feel free to dm me. I still can not..

bw

kat

User
Posted 21 Dec 2021 at 16:47

Originally Posted by: Online Community Member
The main objective with Lyn's John of dealing with his cancer, at least thus far, has been achieved by surgery and then RT albeit with side effects. Now compare this with my situation. The surgeon I saw, also representing the view of the MDT, thought it preferable that I had RT because it was doubtful all the cancer could be removed by surgicallly taking away the Prostate. However, the surgeon did say he would do a Prostatectomy if I wished but didn't recommend it. So I took the advise and after much research had what appeared to be the best RT available at the time (2008). Results for the first 2 to three years looked good, low PSA and no sight of cancer on high quality MRI's. Unfortunately, subsequent increasing PSA's and MRI's showed a small tumour within the Prostate. (Maybe there were some radio resistant cancer cells or some missed by the RT). I did consider a salvage Prostatectomy at this point as there are a few surgeons who will do this much more difficult operation after RT because a radiated Prostate is much more difficult to work on. However, I was told that this would almost 100% be likely to result in permanent urinary incontenance, which is something I wanted to avoid. So I had salvage HIFU which has just been repeated. Now I can say that had I had my Prostate removed at the outset, I may well have needed RT to the Prostate Bed but would not have needed subsequent HIFU because of not having a Prostate. There is no indication of any cancer outside the Prostate Bed now. The Royal Marsden went along with RT first but with the benefit of hindsight was this best? In short, I would now rather be in John's clinical situation than mine, though of course no two cases are quite the same.

Seeing perspective of someone who went through it all is invaluable

πŸ’ͺ🏻πŸ’ͺπŸ»πŸ™πŸ»πŸ™πŸ»πŸ™πŸ»

kat

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 22 Dec 2021 at 00:27
Quote:

this is gold

assuming E and C are santis,

who/where are mr M and P?

just had a consultation with mr W hoping for NHS referral with mr C but mr P stats looks nice. Considering combo of grade and position and stage was told this is 5%case, which means it is rare and complex and while age is young this really calls for experience to deal with whatever comes out during surgery to have best chance at saving as much as possibly possible quality of life. 

mr P?.. I know cant name but please feel free to dm me. I still can not..

bw

kat

I think you have missed my point Katya - misters C / E / M / P could be anyone. As it happens, Mr P is Mr Prostate, my husband's urologist... and I refer to his oncologist as Mr B aka Mr Bottom. 

The main thing is that I wouldn't choose an allegedly amazing surgeon who clearly cherrypicks only straightforward cases; I would be more interested in whether they are engaging and honest at the appointment, how big their ego is and whether I feel confident when I leave the consulting room. 

I don't use the DM facility - I think it is a dreadful thing that the charity should never have added to the forum. 

Edited by member 22 Dec 2021 at 00:32  | Reason: Not specified

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

User
Posted 22 Dec 2021 at 01:30

Does it seems so? No worries :) Whatever point it is the above was a much required exercise in reading data - thank you for that and for igniting further debate which motivated people to shareπŸ”₯ - hearing from everyone helps tremendously to process the devastating news and to feel more in control of it all. 

nite lovely people πŸ’™

kat

 

User
Posted 22 Dec 2021 at 01:54

My OH has just had his surgery with Mr C at London Bridge today, all seems to have gone well and he is doing ok thankfully.

The main reason we chose this route was because my OH was originally diagnosed with advanced prostate cancer that had spread to his bone so surgery wasn’t an option in our local area. We wanted a second opinion as it was a really scary time and maybe felt we just wanted someone to tell us better news (clutching at straw’s possibly). As it turned out after a PSMA pet scan it confirmed no mets in the bone, but 1 possibly 2 lymph nodes involved. So still surgery not the recommended treatment plan by either MDT. Other half really wanted surgery and even being T3a N1 Mr C agreed that he would do it and promised to look after him the best he could. He was very realistic about possible outcomes and how it might change our lives. We also know how likely it is for RT in the future and he is currently on Prostap, but one day at a time for now.

I completely agree that there are amazing surgeons throughout the country and not always a need to move out of your area or go private, but from first meeting our Mr we felt we were in the best hands, just his manner and positivity alone gave us a massive boost which alone I think gives you a better chance of fighting this.

I think my OH has had 50% nerve sparing, it wasn’t our highest priority as initially we expected him to be on HT for life so had come to terms a bit with how things would change. He has had to have bladder neck reconstruction. Although I have seen others have had this I don’t know much about it and how it might affect continence….if anyone has any advice that would be helpful. I know his catheter is to stay in longer because of it.

Best of luck to all who are making these decisions, I know how stressful it all can be 😊

 

User
Posted 22 Dec 2021 at 04:58

Originally Posted by: Online Community Member

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? 

Thank you Matron, for reminding me of my penile inadequacies, reinforced by Her Loveliness, when she saw me naked this week and remarked ‘Where’s it gone?’ - he’d retreated into a forest of pubic hair.

Strangely, these potential side-effects were never ever discussed with me prior to surgery!

Those three friends and I have a disparate relationship, inasmuch that we are in different parts of the country and one on another continent, so we don’t sit down together in the pub and ask ‘How’s your hard-ons?’ 

I think the guy under the NHS surgeon might be on the one pad a day ‘success’ rate of incontinence.

Nevertheless, we are all cancer-free and getting on with whatever is left of our elderly lives.

I get my Old Age Pension next month. What will I do with another £170 a week? I spent fifty-odd quid on a round of cocktails on a yacht here in Gibraltar last night.

Merry Christmas everyone!

Cheers, John.

User
Posted 22 Dec 2021 at 16:08

Hi Elaine

Im glad it went well. I had the same surgeon and also had bladder neck reconstruction. I was pretty much fully continent at TWOC after two weeks so I hope your OH will also be ok. Wishing him a speedy recovery. The next couple of weeks are trying with the catheter but he will get used to it. Plenty of rest and make sure stools are loose for first poo. Expect some bloody bypass too from the penis tip when pooing. That freaked me out as I had not been warned but perfectly normal. Wishing you a Merry Christmas and a Happy New Year

Jeremy 

 

User
Posted 22 Dec 2021 at 17:08

Hi Elaine 

Great news you’ve got a significant hurdle out the way. Urology can be a little unsettled for some time. I was pretty much continent after twoc but would leak a little when tired towards the end of the day. This settled at week five when the stitches around the bladder neck started to soften. I experienced a voiding issues six months after surgery which appeared to get triggered by caffeine so have avoided since and haven’t had to deal with this again. Urology improves over the next year or so as things settle plus the brain has to relearn/remap to adapt with the changes make in bladder control.

Best of luck with the progress and hope you can both enjoy Christmas in a more relaxed frame of mind. 🍾🍻

Cheers

simom

User
Posted 22 Dec 2021 at 17:36

Thanks so much Jeremy & Simon for your replies. Really helpful with regards to the bladder neck and has really put my mind at ease. Great advice about the caffeine, I’ve told Rob caffeine will be off limits but he will be more inclined to believe me seeing your post πŸ˜‚ I sent him in to hospital with prune juice, lactolose, cranberry juice & peppermint tea so hopeful the first 2 will help with his first bowel movement 🀦🏻‍♀️

We’re staying in London for the next couple of weeks until catheter removed and post op review. No visiting allowed at the hospital but walked up with the dog before to give him a wave πŸ˜‚

Hope you have a wonderful Christmas, take care and very best wishes for the new year x

User
Posted 22 Dec 2021 at 17:59

Elaine

There might be some good news for Rob…I found Sauvignon Blanc was an excellent way to relax my bladder and get the water works going again. It was a moment of genius and I tested is a few times just to ensure it wasn’t a red herring. As little as 250ml Brancott was needed to offset the negative effect caused by caffeine. ultimately it was easier just to stop caffeine, as minimal sacrifice, Ito avoid the stress associated with retention. I make the Prof smile whenever I mention Sauvignon Blanc therapy but obviously don’t advocate Vin as a cure all…I found it a useful tool to have in the box of tricks as a last resort  πŸ˜΅‍πŸ’«πŸ€ͺ🀠🍾

Edited by member 22 Dec 2021 at 18:01  | Reason: Not specified

User
Posted 22 Dec 2021 at 18:03

πŸ˜‚πŸ˜‚ he’ll definitely like the sound of that one Simon 🀣 I’ll obviously continue to be the supportive wife and try it out with him πŸ₯‚πŸ˜‚

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 09 Feb 2022 at 15:44

Great news Ben. Long may it continue 🍻🍾

User
Posted 09 Feb 2022 at 16:22

Great news Ben. We got a similar outcome on a tricky diagnosis. We’re back down to see the same surgeon next week for 8week post op review…always a pleasure as I know whatever doubts I have this week he will diminish them next week with all of his positivity πŸ˜‚ just a little worried for PSA result (which I know is normal)

So glad everything has gone so well for you and wish you continued and speedy recovery πŸ‘πŸ½

User
Posted 23 May 2022 at 17:23
Hi, I'm new on here and have been going through all the good stuff in the various conversations!

I wonder if anyone knows of a surgeon in the North of England who uses the Retzius-sparing technique? I get the rule about not naming names, so just the hospital concerned would be a great help.

I'm familiar with the big names (not) named above, I think, but they all seem to work in London and the South-East. Just a bit concerned about travelling post-op...

Thanks,

Jeremy

User
Posted 23 May 2022 at 18:22

Hi Jeremy

I know a couple of guys that travelled down from Midlands and Manchester to see the Prof Whocantbenamedhere @ London Bridge. I did similar as it’s still 2hrs door to door for me. Pretty straight forward train journey and stay over night before etc as early check in. Not ideal as having a surgeon more local but I wanted to see one of the pioneers in this sphere with high volumes under the belt. Best of luck with your search. 

Simon

User
Posted 23 May 2022 at 22:06
Pretty sure someone on here had retzius sparing in Liverpool?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 24 May 2022 at 07:19
I live 3+ hours from London but was happy to travel to get the best surgeon. I stayed with friends in town for a short while afterwards, wouldn't have fancied a long journey the day I left hospital. Maybe persuade a partner/friend to go with you and stay in London for a few days?
User
Posted 24 May 2022 at 09:45

Thanks Lyn, I think we've identified someone on the Wirral - just waiting to hear back via his secretary. Maybe the same guy?

Ben, Simon - thanks for your experiences. My wife would come along as well and we could stay someone near, as you say. Not as good as your own home, though πŸ˜„

J

Edited by member 24 May 2022 at 09:48  | Reason: Not specified

User
Posted 03 Jun 2022 at 11:54

When I decided to go for RARP, I was just directed to Oxford Churchill as my local hospital didn’t have a robot. It did not occur to me to ask for a ‘rock star’ surgeon, I was just happy to have it done. I didn’t ask the surgeon how many he had done or what his success rate was, maybe I should have, but it’s too late now.

It’s probably not a popular view, but the surgeons get experience by doing surgery and there were 2 surgeons and a support team in the theatre when I was done, so I didn’t feel like I was at any great risk.

 

 
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