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Retzuis Sparing v RALP

User
Posted 05 Nov 2018 at 21:25

Hi Everyone


Thank you to those who have replied to my question, which I asked on Carl M's thread.


Upon advice I have started my own thread.


To re-iterate, I am 49 years young, diagnosed with a Gleason 6 in July 2018. I had the MRI before the biopsy.  8 of the 15 cores taken in the biopsy were cancerous, spread across both halves of the prostate = T2a I believe.


I have met the Brachy surgeons and the RALP surgeon, but Retzuis sparing is not available at my local hospital (but is at one not too far away). I have no medical insurance.


I have been offered Active Surveillance, but because of the high volume of infected cells both sets of surgeons suggested I would have to have to under go some form of treatment within 2 years. As I am relatively fit, and not known for my patience, I would like to get on with some form of treatment now.


Initially I was leaning towards Brachy ( a friend had it 15 years ago and is very happy with the outcome). However I am concerned about a return of cancer to my prostate in future years ( I hope to have 20+ more years) and if I have Brachy now future options are more limited.


So now I am looking at the surgery, but do not like some of the side effects.  


Retzuis sparing seems a good alternative, but one surgeon I spoke to was concerned that working in such a small space was difficult, and he had some concerns about removing all the neck of the prostate when using this method.


Incontinence is the biggest worry, if I am honest.


So the 2 questions I have are:


please could persons share their experience's/knowledge of Retzuis sparing prostate removal, in as much detail as is allowed on this forum (but I will happily private message anyone at a later date). 


If I opt for the traditional RALP, with a good surgeon, will I experience some form of incontinence, and if so for how long ?


Thanks to all for your time, and I hope you all return to a clean bill of health soon.


Mark

User
Posted 05 Nov 2018 at 22:43

Copied from other thread:


I think there are only 3 members here that have had Retzius sparing so you are not going to get a huge amount of reliable or balanced data On this forum. It is a very new technique in the UK and not done in the same method as overseas (which is where you will get a lot of data from) so the main challenge in deciding whether or not to opt for Retzius sparing will be geographic - it can be quite problematic to have your op hundreds of miles from home unless you have clarified beforehand who is going to be responsible for your after-care. If you live local to the surgeon that does RS then obviously you don't have that additional worry to contend with.


Men in their 30s and 40s tend to have a more aggressive and persistent prostate cancer than those who are older, and 50% of cores affected is rather high so I doubt you would be suitable for AS as anything other than a holding position while you make decisions and any arrangements necessary (sperm banking if you haven't finished having a family, for example).


If you are considering AS, you can ask your doctors what % of the 8 cores was affected and whether the affected cells were deep in the gland or nearer the outer edge.


 


As to the question of whether you will experience incontinence with Da Vinci or routine keyhole RP, it is impossible to predict. Some ar3 fortunate and find that they have urinary control as soon as the catheter is removed. Over 80% of men are using one pad or less by 12 months post-op. Open surgery has a slightly lower risk of incontinence but requires a longer recovery time and hospital stay. Two men having the same op with the same surgeon can have very different outcomes, one being dry very quickly and the other left incontinent on a temporary or permanent basis - it is partly down to surgeon skill but also affected by your personal internal layout, how the sphincter recovers, whether the lower urinary valve has to be removed / resited and whether there is any accidental damage done to the urethra during the op. We hear too often on here about surgeons who minimised the risk of incontinence, leaving men shocked and distressed when it happen. Also important to ask surgeon to use clear language; the NHS  defines ‘incontinent’ as needing more than one pad per day so if a surgeon says that 98% of his or her patients are ‘continent’ 12 months post-op, I would ask them what % don’t actually wear any pads at all. 

Edited by member 05 Nov 2018 at 22:57  | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 06 Nov 2018 at 02:57
Hi again Mark,

I am in contact with three or four other blokes here who have also had their Retzius-sparing surgery carried out by Professor Whocannotbenamed, the same as me.

They all report their continence is fine, and were overwhelmed by the skill of our surgeon. It does seem a bit of a cheat that surgeons claim continence statistics when incontinence pads are still involved occasionally a year later. I bought a pack of fourteen Tena lights after my op and there are three or four still left in the box, never to be used (I hope).

Retzius-sparing is supposed to preserve erectile function (which in my case it hasn’t, yet). A friend from South Africa came to London and paid around twenty grand to a top Harley Street surgeon for his non Retzius prostatectomy, his operation went well and he has no incontinence problems now, five months post-op, like me. However his erectile function has not returned either.

I am almost in tears sometimes when I read about someone here who has had constant abdominal pain for three and a half years since his operation or the bloke who has been in nappies for five years. Obviously we here do not know the extent of their cancer their surgeon had to contend with, and thus how much to excise.

So as I think I said before, if you elect for surgery, do your research as to who is going to be doing it, and their volumes and ‘success’ rates. I suppose ‘success’ is removing the cancer, but you don’t want hideous side-effects for years after if possible.

There are many ‘What ifs?” with PCa, but I will never ask myself ‘What if I had had a different surgeon?’

Cheers, John.
User
Posted 08 Nov 2018 at 15:37
Another Retzius sparing patient here, done mid-June, by the same surgeon as cannot be named above.

While I didn't have a trouble-free run due to a post op bleed (which could have occurred whichever way the surgery was done) I'm happy with my choice. I should also say that my surgery was complicated by having a very large prostate.

I've had no real continence issues since catheter removal and still have pads left from the original box. Questionable whether they were actually needed at all after the first couple of days.

ED wise, there were signs of life from early on and now (nearly 5 months on) I have some, if rather unreliable function unaided and full function with sildanafil 25mg (though not liking the side-effects). Tadalafil 10mg is a bit less effective but very much less side effects.

As I understand it, the key with RARP, Retzius sparing or not, is a having a highly experienced high-volume surgeon. The benefit of Retzius sparing is that the direction of approach means that fewer key structures have to be cut allowing quicker recovery of full continence and erectile function. At one year post-op, figures are similar.

This is a serious procedure to deal with a serious disease. It's a question of minimum damage. No technique, including the radio-therapy routes are zero damage. RT can also cause continence issues and ED and in younger patients carriers the risk (albeit quite small) of late side effects.

Hope this helps a little with this very difficult decision.

Nick
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User
Posted 05 Nov 2018 at 22:43

Copied from other thread:


I think there are only 3 members here that have had Retzius sparing so you are not going to get a huge amount of reliable or balanced data On this forum. It is a very new technique in the UK and not done in the same method as overseas (which is where you will get a lot of data from) so the main challenge in deciding whether or not to opt for Retzius sparing will be geographic - it can be quite problematic to have your op hundreds of miles from home unless you have clarified beforehand who is going to be responsible for your after-care. If you live local to the surgeon that does RS then obviously you don't have that additional worry to contend with.


Men in their 30s and 40s tend to have a more aggressive and persistent prostate cancer than those who are older, and 50% of cores affected is rather high so I doubt you would be suitable for AS as anything other than a holding position while you make decisions and any arrangements necessary (sperm banking if you haven't finished having a family, for example).


If you are considering AS, you can ask your doctors what % of the 8 cores was affected and whether the affected cells were deep in the gland or nearer the outer edge.


 


As to the question of whether you will experience incontinence with Da Vinci or routine keyhole RP, it is impossible to predict. Some ar3 fortunate and find that they have urinary control as soon as the catheter is removed. Over 80% of men are using one pad or less by 12 months post-op. Open surgery has a slightly lower risk of incontinence but requires a longer recovery time and hospital stay. Two men having the same op with the same surgeon can have very different outcomes, one being dry very quickly and the other left incontinent on a temporary or permanent basis - it is partly down to surgeon skill but also affected by your personal internal layout, how the sphincter recovers, whether the lower urinary valve has to be removed / resited and whether there is any accidental damage done to the urethra during the op. We hear too often on here about surgeons who minimised the risk of incontinence, leaving men shocked and distressed when it happen. Also important to ask surgeon to use clear language; the NHS  defines ‘incontinent’ as needing more than one pad per day so if a surgeon says that 98% of his or her patients are ‘continent’ 12 months post-op, I would ask them what % don’t actually wear any pads at all. 

Edited by member 05 Nov 2018 at 22:57  | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 06 Nov 2018 at 02:57
Hi again Mark,

I am in contact with three or four other blokes here who have also had their Retzius-sparing surgery carried out by Professor Whocannotbenamed, the same as me.

They all report their continence is fine, and were overwhelmed by the skill of our surgeon. It does seem a bit of a cheat that surgeons claim continence statistics when incontinence pads are still involved occasionally a year later. I bought a pack of fourteen Tena lights after my op and there are three or four still left in the box, never to be used (I hope).

Retzius-sparing is supposed to preserve erectile function (which in my case it hasn’t, yet). A friend from South Africa came to London and paid around twenty grand to a top Harley Street surgeon for his non Retzius prostatectomy, his operation went well and he has no incontinence problems now, five months post-op, like me. However his erectile function has not returned either.

I am almost in tears sometimes when I read about someone here who has had constant abdominal pain for three and a half years since his operation or the bloke who has been in nappies for five years. Obviously we here do not know the extent of their cancer their surgeon had to contend with, and thus how much to excise.

So as I think I said before, if you elect for surgery, do your research as to who is going to be doing it, and their volumes and ‘success’ rates. I suppose ‘success’ is removing the cancer, but you don’t want hideous side-effects for years after if possible.

There are many ‘What ifs?” with PCa, but I will never ask myself ‘What if I had had a different surgeon?’

Cheers, John.
User
Posted 08 Nov 2018 at 15:37
Another Retzius sparing patient here, done mid-June, by the same surgeon as cannot be named above.

While I didn't have a trouble-free run due to a post op bleed (which could have occurred whichever way the surgery was done) I'm happy with my choice. I should also say that my surgery was complicated by having a very large prostate.

I've had no real continence issues since catheter removal and still have pads left from the original box. Questionable whether they were actually needed at all after the first couple of days.

ED wise, there were signs of life from early on and now (nearly 5 months on) I have some, if rather unreliable function unaided and full function with sildanafil 25mg (though not liking the side-effects). Tadalafil 10mg is a bit less effective but very much less side effects.

As I understand it, the key with RARP, Retzius sparing or not, is a having a highly experienced high-volume surgeon. The benefit of Retzius sparing is that the direction of approach means that fewer key structures have to be cut allowing quicker recovery of full continence and erectile function. At one year post-op, figures are similar.

This is a serious procedure to deal with a serious disease. It's a question of minimum damage. No technique, including the radio-therapy routes are zero damage. RT can also cause continence issues and ED and in younger patients carriers the risk (albeit quite small) of late side effects.

Hope this helps a little with this very difficult decision.

Nick
User
Posted 08 Nov 2018 at 21:36
Hi Nick
Thank you very much for taking the time to post such a comprehensive reply.
I did not realise the 1 year post op statistics were the same for either form of surgery.
I will look into the ED treatment when/if needed.
If I may ask, how long is it after surgery (either form) before people return to work and drive ?
Best Wishes
Mark
User
Posted 08 Nov 2018 at 21:46

Hi John


I think my original reply to your comments may have gone straight to your inbox, rather than appear as a post - apologies.


Thank you for your comments, and for being so open and honest.


I have to say I felt quite isolated with my decision dilemma a week ago, reading various expert opinions on the internet, and inevitably just going round in circles.


Finding this forum has been a light bulb moment.


Thank you to not only those that have answered my question directly, but all the others with their own threads that I have been looking at.


Now to find the name of this Professor Whocannotbenamed.......... 


Best Wishes,


Mark

User
Posted 09 Nov 2018 at 05:04

Originally Posted by: Online Community Member

If I may ask, how long is it after surgery (either form) before people return to work and drive ?
Best Wishes
Mark


Hi Mark,


I trotted across the road with my trolley bag to the hospital social club upon my discharge for a pint - I was parched - must have been the after-effects of the general anaesthetic. Maybe😉. Where they refused to serve me as I still had my hospital wristband on!


Anyway, I got a drink after involving a pair of scissors and Her Loveliness finally arrived but couldn’t park the car, so I had to. So in fact I ‘drove’ within an hour of leaving hospital. The hospital discharge leaflets say that you should not drive until you are able to jam your brakes on and do an emergency stop. Our wonderful Matron here points out that some car insurers may stipulate a certain time-span before recommencing driving, so check with yours.


I was not in any pain and could certainly stop, so I drove again properly the day after discharge. As for work, I do most of mine on this here ipad, so I even did some from my hospital bed whilst connected up to a plumber’s nightmare of pipework! They say you should have around six weeks off if you have laparoscopic surgery, and probably longer with open surgery. If you do any kind of manual work, the time off would be longer. You wouldn’t want to upset all that internal stitching and plumbing.


I know nothing about radiotherapy except - in my case - to avoid it!


Cheers, John.

User
Posted 09 Nov 2018 at 21:06
Hi John
Thank you again.
I am a Primary Food Producer (used to call myself a Farmer, but started feeling a bit left behind in the job title department !) so manual work and driving are a daily activity for me. Having said that, no one is indispensable, so I am sure they will manage fine without me for a while.
Used to always be up for a pint or 3, but too much time spent peeing means I have moved onto shorts now !
Thanks also for the private message. Unfortunately the system will still not allow me to respond privately, in case I am spam.
Attempting to get an appointment with Professor .
Cheers
Mark
User
Posted 09 Nov 2018 at 23:37
Some insurers say simply that you can drive when you are able to execute an emergency stop, others stipulate 6 weeks. In our case, John had a company car and the employer’s insurer refused to cover him until 12 weeks post op plus they wanted a letter from the surgeon confirming that he was fit to drive (which the surgeon refused to provide because, as he pointed out, he had no idea what John’s standard of driving was before). Best to check with your own insurer though.

General advice is that you will be off work for 6-8 weeks after keyhole RP and 10-12 weeks after open RP, but this would be longer if the work involves lifting.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 11 Nov 2018 at 15:49

Hi John


According to Prostate Cancer UK I am still a spammer, so I will post publicly my thanks to you for the last message you sent me.


It seems like I am lucky enough to be speaking to the right people, and agree with the sentiments included in your message.


I feel I know the direction I am going in now, and will update the site once final decisions are made.


Thanks to you and other users on this forum for sharing their invaluable experiences/thought process/opinions.


Best Wishes to all


Mark

User
Posted 20 Nov 2018 at 21:17
Hi John, LynEyre, Nick (names in alphabetical order (!), as you have all been very helpful) and anyone else who makes the time to read this reply/question.
I have a meeting with Retzius sparing Professor at the end of the week, and am looking for guidance on the right questions to ask.
So far I have got:
1) I have read somewhere (German hospital I think) that some surgeons have the margins of the prostate tested whilst the patient is on the operating table, and if they come back positive they remove a bit more. Is this something anyone else has heard of ?
2) In your post LynEyre you mentioned they use a different Retzius technique in the UK to abroad. Do you have anymore info, but I will ask the question.
3) Catheter (I really do not want one) - Does the surgeon use a supra catheter.
4) Post operative care - can this/should this be done at a more local hospital.

Any other questions I should ask ?

I have looked at the number of operations this individual has performed and am happy he is about as good as it gets.

Now saving up to buy that pint you suggested John, and to enjoy the view!

Thanks to all
Mark
User
Posted 21 Nov 2018 at 06:50
In some hospitals and I think at one private London hospital where your man works, they do real-time pathology on bits removed to see if they are cancerous. Didn’t happen in my case.

Very few surgeons here use the Retzuis-sparing technique because of its technical complexity, and because they have not been trained to do it by the likes of Professor Rha in Seoul and the doyen of the method, Professor Bocciardi in Milan.

You will have a supra-pubic catheter for ten days, much more comfortable than a urethral one.

Post-operative care consists of catheter removal on day ten, it takes a few seconds. The urologist here has been very accommodating. I thought he would be pissed off that I had gone elsewhere for surgery, but that was not the case, and I am now back ‘under his wing’ and in touch with both urology and oncology at my local hospital. Make sure similar arrangements are in place for you. The urology nurse there is very good, and she liaised with her counterpart here to arrange the catheter removal.

I hope it all goes as well for you as it did for me. It’s been an ‘interesting’ year! I found I had cancer last November, and now I do not. What’s not to like? Oh, did I mention the missing 2”.............?😉

Best of luck.

Cheers, John.
User
Posted 21 Nov 2018 at 07:28
Thanks John - I will let you know how we got on.
I will have a look about for your missing 2 inches, but cannot promise you anything.......
Cheers
Mark
User
Posted 26 Nov 2018 at 08:01
My surgery was done at Private Care at Guys, London Bridge so that on the spot pathology could be done. This means that surgical margins could be checked (they were clear) before I was put back together.

As regards recovery time, I’d say there is an element of luck involved. John seems to have got the best case, which was pretty close to what I’d originally been told, whereas the complications I had meant I was out for nearly 12weeks. On the plus side I have no missing inches..... so swings and roundabouts!

Nick
User
Posted 23 Dec 2018 at 19:43
Hi Everyone
It's been a while since I posted, but we have not been idle.
Decision made - I will be having a conventional RALP operation on the 7th Feb 2019, at Stevenage.
I visited the private surgeon in London, who was very helpful. Unfortunately he could not offer me Retzuis sparing at his local hospital on the NHS, and I have no medical insurance. However, as pointed out by others on this site, after one year the recovery statistics are the same which ever route you choose.
I have been fortunate enough to be offered surgery by a high volume surgeon on the NHS, who has funding for a trial which allows for the margins to be checked whilst I am on the operating table (Neuro Safe).
As also mentioned by others, the choice of which route you go down, if offered a choice, is very personal.
For me, I am not enjoying the 3 monthly PSA checks (bit like hoping you have not won the lottery every 12 weeks), I am not keen to repeat the biopsy procedure (if I did have to I would find the money and have the more thorough Prostate Mapping - something new readers may choose to investigate), I am "only"49 so wonder vaguely the long term effect of exposing my prostate to such high intense radiotherapy (I hasten to add I have not found any evidence that shows any long term effects) and finally if the problem reappears in the bed of my prostate it leaves me open to the option for them to zap it in the future.
In preparation for the op I am running three times a week, trying to remember to do the pelvic floor exercises, and also invested in an hours private lesson from a local Pilates teacher, who has also given me some more exercises to do !
I thank each and everyone who has offered advice to date, or whose stories I have read, and will investigate what I need to get ready for the op, and for my recovery, in the New Year.
Meantime I intend to drink too much and have a Christmas full of laughter with my family.
Merry Christmas to all, and a healthy New Year.
Mark
User
Posted 23 Dec 2018 at 20:26
Enjoy your Christmas and New Year festivities. All the best for a successful operation and a good recovery.
Good food, drink, company and laughter are great tonics.
Ian
User
Posted 23 Dec 2018 at 21:51

Well, good luck Mark.


If it ever came to it you wouldn’t have had to pay for a template biopsy as you could have had one on the NHS as so many have had to have, subsequent to a TRUS. Anyway that’s a moot point as you have now been diagnosed.


You are lucky to be able to ‘enjoy’ the live biopsy to see what bits of you can be left alone, something Professor Whocannotbenamed can only offer at a certain London hospital as part of his twenty grand package.


I do no exercise, no Kegel, no pelvic floor, no Pilates, and am right as rain. Apart from a truncated and limp dick.....😉


I hope you are as well or better in six month’s time.


Best of luck with the surgery and enjoy your Christmas.


Consumption of plenty of fluids is recommended post-prostatectomy.....if not before...🍾🍷🍾🍷🍻


Cheers, John

Edited by member 24 Dec 2018 at 05:44  | Reason: Not specified

 
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