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Retzius-Sparing RARP - Which Surgeon?

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˜‚

 
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