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Deciding between RALP and Retzius

User
Posted 31 Oct 2018 at 16:26

Quick background... Me and my GPs had been tracking my PSA levels since 2011, seeing it rise from 3.9 to 7.9 in the most recent test. As a result, a prostate MRI was performed (which revealed a mass) and a subsequent biopsy was performed. The net... I was diagnosed with a cT2a tumour and a 3+4 Gleason score.


I am deciding between either having a more traditional RALP procedure or going the Retzius Sparing procedure, and would be interested in hearing from others that considered both of these, and what drove their final decision.


For those that have had the Retzius procedure, I am interested in knowing where you had it done and what your results have been.


Thank you in advance... Carl M


 

User
Posted 08 Jan 2020 at 06:04
Making lists of 'top' surgeons in London is a bit weird unless you live in London - some of the best prostate cancer surgeons are outside the capital.

Urological surgeons are required to publish their data; you can look at their outcomes online although there are a small number who ignore the requirement. Alternatively, google the Daily Mail best prostate surgeons and you will find what is commonly known as the list of Golden boys.

When speaking to a surgeon, the data you need includes:
% of men with positive margins
% of men who needed adjuvant or salvage treatment within 1 year / 5 years
% of men who were continent at 12 months post op (keeping in mind that the definition of continence is 'using 1 pad per day or less')
% of men who could gain an erection sufficient for penetrative sex at 12 months post op (defined as natural erections or using chemical or mechanical assistance)
How many RPs they do each year

Retzius sparing is very new and there are really only 3 surgeons in England with a decent amount of experience at this; my concern would be a surgeon who is just learning the technique and needs some target practice. The same goes for da Vinci RP. Even worse, the surgeon who used to do loads of ops but now mostly lectures and just does the occasional RP to keep their hand in. Ideally you want someone who does at least 100 RPs each year. And when you talk to the top surgeons, their caution would always be the urologist with a huge marketing machine and not much substance.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 01 Nov 2018 at 00:47

Hi Carl,


There are only a handful of surgeons in Britain who do Retzius-sparing surgery and I chose the foremost one who has over 3000 prostatectomies under his belt. He learnt his craft from Professor Rha in South Korea and Professor Bocciardi in Milan who is really the pioneer of the technique.


Professor Whocannotbenamed here uses a supra-pubic catheter not involving the urethra, meaning that you are virtually continent the day the catheter is removed on day 10 and you have no sensation of pissing razor blades! Be prepared for one or two accidents though, and invest in a waterproof mattress protector, about a tenner from eBay or Dunelm Mills.


I read here daily about post-operative problems, including one guy who says he has had abdominal pain for three and a half years and another who has been incontinent for five years. I can honestly say I have had more pain from a sore throat and am dry as a bone.


They key is to go with a high-volume surgeon. Even the Professor’s protégés at his hospital have only done a handful of Retzius-sparing procedures between them because of their technical complexity, despite them being fully-qualified consultant urological surgeons, whereas he does 300-400 a year. My local surgeon does about 70 prostatectomies a year, which is why I travelled to Guildford.


Retzius-sparing or not, unfortunately I now have total erectile dysfunction currently, and around 2” of length seems to have been lost somewhere in the operating theatre. I had partial nerve-sparing on one side, and they say it takes up to two years to recover, so I am looking forward to rampant sex some time in 2020!


I am so pleased with my operation as I seem to have been cured (for now), and I will send the Prof. a bottle of Champagne at Christmas, together with a can of WD40 for his pet robot, Da Vinci.


The Professor charges £19,950 for the surgery in his private clinic, or it‘s ‘free‘ on the NHS if you join his short waiting list.


All the best, whichever way you go.


Cheers, John.

Edited by member 01 Nov 2018 at 00:50  | Reason: Not specified

User
Posted 05 Nov 2018 at 03:14
Hi Mark Ja,

With a low Gleason score of six you might be an ideal candidate for Active Surveillance, maybe for a few years with regular follow-ups. Was that option discussed with you?

I had Retzius-sparing surgery five months ago, and couldn’t be more pleased about the procedure. If you click on my profile you can read all the gory details!

Just a suggestion, why don’t you start a new thread under your own pseudonym so people here will get the full picture and be able to offer you advice accordingly?

Cheers, John.
User
Posted 05 Nov 2018 at 04:36

Originally Posted by: Online Community Member


The "permanency" of removal appeals, but the side effects do not..... (surely too young for a catheter). 



Obviously the catheter is only temporary!

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User
Posted 31 Oct 2018 at 23:38

Hi Carl


I opted for the Retzius procedure mainly based on my surgeons continence success rates. Hundred percent no regrets. Totally continent since catheter removed - day and night including any physical/ sports exercise. I felt at my age continence was a massive issue. My physio daughter also had me on a strict regime of pelvic floor exercises since day of diagnosis though and I really think this helped continence recovery. At six weeks post op review I was given clear margins, nerves on both sides saved and an undetectable PSA but also discovered the seminal vesicles had been invaded. Biggest issue for me was the catheter - in place for a very testing 8 days but just a memory now. I had my surgery at the Royal Berkshire in Reading.


Good luck with your journey


 

Edited by member 01 Nov 2018 at 06:31  | Reason: Not specified

User
Posted 01 Nov 2018 at 00:47

Hi Carl,


There are only a handful of surgeons in Britain who do Retzius-sparing surgery and I chose the foremost one who has over 3000 prostatectomies under his belt. He learnt his craft from Professor Rha in South Korea and Professor Bocciardi in Milan who is really the pioneer of the technique.


Professor Whocannotbenamed here uses a supra-pubic catheter not involving the urethra, meaning that you are virtually continent the day the catheter is removed on day 10 and you have no sensation of pissing razor blades! Be prepared for one or two accidents though, and invest in a waterproof mattress protector, about a tenner from eBay or Dunelm Mills.


I read here daily about post-operative problems, including one guy who says he has had abdominal pain for three and a half years and another who has been incontinent for five years. I can honestly say I have had more pain from a sore throat and am dry as a bone.


They key is to go with a high-volume surgeon. Even the Professor’s protégés at his hospital have only done a handful of Retzius-sparing procedures between them because of their technical complexity, despite them being fully-qualified consultant urological surgeons, whereas he does 300-400 a year. My local surgeon does about 70 prostatectomies a year, which is why I travelled to Guildford.


Retzius-sparing or not, unfortunately I now have total erectile dysfunction currently, and around 2” of length seems to have been lost somewhere in the operating theatre. I had partial nerve-sparing on one side, and they say it takes up to two years to recover, so I am looking forward to rampant sex some time in 2020!


I am so pleased with my operation as I seem to have been cured (for now), and I will send the Prof. a bottle of Champagne at Christmas, together with a can of WD40 for his pet robot, Da Vinci.


The Professor charges £19,950 for the surgery in his private clinic, or it‘s ‘free‘ on the NHS if you join his short waiting list.


All the best, whichever way you go.


Cheers, John.

Edited by member 01 Nov 2018 at 00:50  | Reason: Not specified

User
Posted 01 Nov 2018 at 10:44

I had robotic RP in 2014, travelling to Germany to a leading Professor of Urology- on advice of my Urologist - cost £10,000


he used a different technique and I had an annoying Catheter in for only 5 days.


totally incontinent when the Catheter was first removed but within 6 weeks I was, and remain, totally dry with no urinary problems


Erectile dysfunction initially but this improved over the 1st 6 months and I was able to enjoy a full sex life once again


 


unfortunately my PSA started to rise in 2017 and I have had radiotherapy to treat the area - so far so good, no real further problems encountered but I have to wait a year or 2 to see if it has been successful (after the HT is finished)

Edited by member 01 Nov 2018 at 12:02  | Reason: Not specified

User
Posted 04 Nov 2018 at 20:01

Hi Everyone


Excuse my hesitancy, but this is my first involvement in any forum/support group - I am one of those blokes who normally just puts his head down and gets on with it (whatever it is at the time).


I am 49 years of age, have been diagnosed with Prostate Cancer, a Gleason 6, T2a, with 8 of the 15 cores in the biopsy being affected.


I have met the Brachy and RALP surgeons and now have to make my decision.


The "permanency" of removal appeals, but the side effects do not..... (surely too young for a catheter). 


I agree with the comments about more experience = better results, and I am very keen to hear about people's experience with the Retzius sparing.


I have heard one comment that because the area the surgeon is working in is so small, there is some concern about complete removal of the prostate, especially around the neck area of the prostate, if opting for Retzius technique.


So far there seem to be pro's and cons for all options.


Thanks

User
Posted 05 Nov 2018 at 03:14
Hi Mark Ja,

With a low Gleason score of six you might be an ideal candidate for Active Surveillance, maybe for a few years with regular follow-ups. Was that option discussed with you?

I had Retzius-sparing surgery five months ago, and couldn’t be more pleased about the procedure. If you click on my profile you can read all the gory details!

Just a suggestion, why don’t you start a new thread under your own pseudonym so people here will get the full picture and be able to offer you advice accordingly?

Cheers, John.
User
Posted 05 Nov 2018 at 04:36

Originally Posted by: Online Community Member


The "permanency" of removal appeals, but the side effects do not..... (surely too young for a catheter). 



Obviously the catheter is only temporary!

User
Posted 05 Nov 2018 at 07:49

Originally Posted by: Online Community Member


Originally Posted by: Online Community Member


The "permanency" of removal appeals, but the side effects do not..... (surely too young for a catheter). 



Obviously the catheter is only temporary!



.... except for the unfortunate :-/ 

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 05 Nov 2018 at 21:03
Hi Carl M
Sincere apologies for "invading" your thread - I am obviously new to this forum business.
I just felt I had the same question as yourself.
I would be very interested in hearing your final decision, and wish you a speedy return to full health.
Cheers
Mark
User
Posted 05 Nov 2018 at 21:28

Hi John,


Thanks for your reply.


If the moderator approves me, I have started a new thread as you suggested.


I may well message you at a later date, if you do not mind ?


Cheers 


Mark

User
Posted 10 Nov 2018 at 15:00

Hi Mark!


No apology necessary. It is somewhat daunting to digest all of the information available and then apply it to yourself. My greatest comfort has come from follow up consultations with a couple of surgeons and have decided against the classic Retzius Sparing. My surgery will be done in London, in a private clinic, by one of our top surgeons. 


My surgeon's numbers, results and recommendation by two other surgeons helped me with my decision. Everyone's case is different of course. While my tumour's clinical grade is cT2a and have a Gleason score of 3+4, my decision to have surgery what based on the following:


1. I am 66, fit and have been doing Active Surveillance of my PSA for 7 years; during which time it has steadily gone up from 3.9 to 7.9. It will only continue to go up and better to have this done whilst very healthy.


2. My prostate is too small for seed therapy.


3. Removal of the prostate gives me the best chance to avoid this particular cancer and get on with life. The RALP approach my surgeon uses has yielded very good continence results.


My surgery is scheduled for December 11 and I will happily provide feedback on the results as they become available.


Cheers... Carl


 

User
Posted 10 Nov 2018 at 15:21
Hi Carl,

I’m not suggesting Retzius-sparing surgery is the be-all and end-all of prostatectomies, but the one I had was virtually pain-free! How you can have major abdominal surgery and suffer less pain than a sore throat is amazing to me, and a tribute to modern minimally-invasive surgery.

My friend flew in from South Africa, paid twenty grand and had conventional RALP with a top surgeon at a London hospital five months ago, and we are at a similar stage, both continent, but both with limp dicks, despite pharmaceutical ‘assistance’!

I think the key to this for the best outcomes in the long term, is to seek out a high volume surgeon of some repute, as you and I have done, and put your life (and sex life 😉) in their hands.

Best of luck with your procedure. I wish you a speedy recovery.

Cheers, John.
User
Posted 10 Nov 2018 at 19:23

Hi John.


Thanks for the follow up. Your posts on the surgery procedures and your results have been great, and I've read them all. While making the decision itself was somewhat hard, now that it is made, I'm looking forward to getting it done, recovering and getting back to swimming, race walking, hiking and rowing... along with cooking and walking the dogs.


Your point about going with high volume surgeons is perhaps the one most consistent recommendation across all forums (UK, American Cancer Society, etc). One of my consultants does approximately 60 a year at present, and concurred with taking the high volume approach. It boiled down to two surgeons; one down around Canterbury and one at London Bridge, both of them very good. When I decided to go with London Bridge, the other surgeon got in touch with me to inquire about who I selected. His reason... he wanted to make sure I'd made a good decision. When I told him who it was, he said congratulations, great choice and that I was in very good hands. 


Now that is customer focused. 


So, I look forward to posting some follow up results in December. 


Cheers and thanks again John... Carl

User
Posted 11 Nov 2018 at 15:54

Hi Carl


Thanks for the reply, and sharing your decision. 


Hope all goes well on the 11th, and I wish you a speedy recovery.


Best Wishes


Mark

User
Posted 08 Jan 2020 at 01:40

Hi Carl, happy new year! May I enquire due to what reason that you have decided against retzius-sparing pls? We are researching and weighing up the pros and cons for my hubby who is in his early 40s, G6 in one quadrant of his prostate, 3/3 targets biopsy showed G6 with 56%, 58% and 27% of each cores and with another 4 cores of 5% 6% and 27% in other cores but in the same quadrant. He has been on active surveillance coming up to one year now, psa fluctuating between 4.4-5.6. We are stuck with focal, AS or surgery. If non retzius sparing, which surgeon did you choose in the end? I have drawn up a list of all the top surgeons in London and we are absolutely clueless of how to make a decision... your advice and experience will be highly appreciated! Thanks very much! 

User
Posted 08 Jan 2020 at 06:04
Making lists of 'top' surgeons in London is a bit weird unless you live in London - some of the best prostate cancer surgeons are outside the capital.

Urological surgeons are required to publish their data; you can look at their outcomes online although there are a small number who ignore the requirement. Alternatively, google the Daily Mail best prostate surgeons and you will find what is commonly known as the list of Golden boys.

When speaking to a surgeon, the data you need includes:
% of men with positive margins
% of men who needed adjuvant or salvage treatment within 1 year / 5 years
% of men who were continent at 12 months post op (keeping in mind that the definition of continence is 'using 1 pad per day or less')
% of men who could gain an erection sufficient for penetrative sex at 12 months post op (defined as natural erections or using chemical or mechanical assistance)
How many RPs they do each year

Retzius sparing is very new and there are really only 3 surgeons in England with a decent amount of experience at this; my concern would be a surgeon who is just learning the technique and needs some target practice. The same goes for da Vinci RP. Even worse, the surgeon who used to do loads of ops but now mostly lectures and just does the occasional RP to keep their hand in. Ideally you want someone who does at least 100 RPs each year. And when you talk to the top surgeons, their caution would always be the urologist with a huge marketing machine and not much substance.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
 
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