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Retzius-Sparing Laparoscopic Radical Prostatectomy

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User
Posted 08 Aug 2020 at 13:41

Originally Posted by: Online Community Member

John

Good news. I sent you a PM the other day but your inbox was full.

Thanks Chris

Have never been able to work out messages on this bulletin board, but you can email me at re.vision@btinternet.com

Cheers, John

User
Posted 01 Dec 2020 at 17:38
Results from PSA test yesterday arrived on my iPad this morning. Still undetectable after 2 1/2 years, despite the discovery of some lymph node involvement during the post-operative biopsy.

Hayley the vampire at the chemist was a little off her game yesterday, maybe because it was 07.00. I have to laugh when they say ‘You’ll just feel a little pinch’ or ‘a scratch’ when they’re sticking a bloody big needle in your arm.

I like to watch and the vampire was poking around and delving deeper and getting no blood out.

‘Have you had a drink today’

‘Why, does that make a difference?’

‘Yes’

‘OK, I’ll drink six pints before I come next time!’

Try arm two. More pinching and scratching and poking and delving. No good. ‘I should send you to hospital as we’re only allowed two attempts, but let’s try arm one again’.

Success!

I’ll take Hayley some chocolates and a bottle of Big Tom Bloody Mary mix before Christmas!

Thanks again to Professor Whocannotbenamedhere.

Cheers, John.

User
Posted 01 Dec 2020 at 18:05

Great result John.

Some of my best bruises appear after they've been fishing. 

User
Posted 01 Dec 2020 at 18:24

Great news John

i bet you were the model patient 🤪

like you I’m not too bothered with needles after the epidural. That set a new baseline for me...although not as painful as when I jumped on a 6” nail from a tree. Lifted my foot and the wood it was attached too came up with it 👀🥴

Enjoy tonight’s celebratory rehydration tipple 🍻

Edited by member 01 Dec 2020 at 18:27  | Reason: Not specified

User
Posted 01 Dec 2020 at 20:21
I have recently developed a condition which the Dermatologist diagnosed as an incurable benign condition called ‘Senile Perpura’.

‘Oi, who are you calling senile?’

Dermatologist: ‘Anyone over fifty’, with the result that my arms are always riddled with bruises, notwithstanding phlebotomy wounds. I always tell anyone who asks, that Her Loveliness (40 years of being unmarried this month) has been abusing me...

Symantec: As I have said before, my surgery, including the spinal anaesthetic (are you sure you had an epidural?) was virtually painless!

Cheers, John.

User
Posted 01 Dec 2020 at 20:57

Rude not too really...I would have done exactly the same. 🤪

The spinal thingy might have been spinal anaesthesia 🤷🏼‍♂️👀. Went in with a large needle above the lumbar area. Local anaesthetic took the edge off the pain but I did feel the dragons claw when they asked me to lean back slightly into the needle under the careful guidance of medical staff holding me while sat on operating prep table. More pressure than pain. Following this the team were keen to lay me down as everything below the area loses feeling apparently. As soon as I was horizontal the magic drugs were pumped in and I noticed the specific phases of going under which I narrated in detail 🤖. Next thing I knew....three hours had passed I waking with oxygen masks and no prostate. The words ‘were there negative margins’ took two attempts to mumble out 🤔🤠😜Next question which I didn’t verbalise were about any loss of length 🥴

 

Edited by member 01 Dec 2020 at 20:59  | Reason: Not specified

User
Posted 01 Dec 2020 at 21:01
Poor Hayley :-(
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 01 Dec 2020 at 21:08

Great result 👍🏼

User
Posted 02 Dec 2020 at 23:53

Long may it be undetectable

User
Posted 03 Dec 2020 at 11:26

Great result John. 

Ido4

User
Posted 03 Dec 2020 at 11:59
👍Good news hope it continues

Cheers

Bill

User
Posted 03 Dec 2020 at 12:00

Bollinge 

Pleased to hear your result, hope it continues. 

Thanks Chris

 

 

User
Posted 03 Dec 2020 at 17:28

Another Great result John, long may it continue.

Ange

User
Posted 16 Jan 2021 at 17:54

I understand that the Retzius technique for surgery is radically different from the norm. Did you research it? As it's uncommon (I believe), maybe getting a high-volume surgeon on the NHS at a convenient location would be difficult. Do have any views on this avenue as opposed to the more usual RARP?

User
Posted 16 Jan 2021 at 18:20

Hi Bernster 

I checked it out after a few of the lovely folks on here and in a local support group mentioned it. The Retzius approach is gaining traction with urologists globally which is great news. Fundamentally it generally needs a more technically competent surgeon as the prostate is accessed through a very small area known as the cave of Retzius. The approach means the nerves associated with bladder control and bladder itself aren’t messed around with as much as the regular approach which means continence  rates post op are significantly better. Some quote as high as 98%+ 

Certainly for me it was a no brainer as once I decided to go down the surgical route I wanted to ensure the best outcome I could in terms of cancer control plus urinary continence. The approach I believe doesn’t really impact the stats for ED...that’s more about surgeon skills and fair dose of luck and dependant on how extensive the cancer plus how much nerve sparing can be done.

During  my Retzius sparing RARP I also had NeuroSafe which is often part of the package....this is essentially a pathologist on standby live who will immediately take frozen sections of the prostate before the surgeons close up to check the margins etc so if more tissue needs to be taken they can do it there and then.

Hope that adds some useful info. Please shout if you need more :-)

Simon

Edited by member 16 Jan 2021 at 18:23  | Reason: Not specified

User
Posted 16 Jan 2021 at 19:26

Thank you TechGuy for sharing your experiences. I'm not sure my local hospital (Bournemouth) practices this technique but I will ask the question. It certainly wasn't mentioned by my Consultant when we discussed nerv-sparing (and I didn't know about the Retzius technique then)  So I will probably have little chance unless I travel and/or pay privately, and maybe if I find a place, they may not have conducted the volume of such procedures.

So I'm not sure if it is a viable option for me.

I did find this research report (link below) which concludes with:

Implications for practice

Based on the current best evidence summarized in this review, Retzius‐sparing robotic‐assisted laparoscopic prostatectomy (RS‐RALP) compared to standard robotic‐assisted laparoscopic prostatectomy (RALP) may improve early continence up to six months and improve early urinary quality of life but ultimately results in similar continence outcomes at 12 months.

https://www.cochranelibrary.com/cdsr/doi/10.1002/14651858.CD013641.pub2/full#CD013641-abs-0002

User
Posted 16 Jan 2021 at 20:04

Hi Bernster

Very welcome. I was down that way yesterday in Boscombe having urgent wisdom tooth surgery. Grew up in the area. Definitely worth asking the consultant as he should know it as been around ~4-5years now. Key thing is to use a high volume surgeon who does >100 procedures a year and check their stats.

The surgeon I used is based out Guildford(NHS) and London Bridge Guys (Private). I went up to London Bridge which was an hour or so on the train. Not as ideal as my local hospital but the surgeons volumes and outcomes were very impressive and I good continence from catheter removal and didnt need pads after week 5. The odd occasional stress drip maybe once a month but improving all the time. ED outcome was better than expected and can have penetrative sex without viagra/tadalafil if not tired or pop a pill for a booster and feel like a youngster again.

Yes the main data for Retzius is speed of recovery but long term data is also strong v a procedure where more disturbance of the urinary control nerves are disturbed. My consultant said a normal RARP would maybe yield 80% continence after a year whereas Retzius takes that number nearer to 98% with a skilled pair of hands.

Ultimately I suspect you'd have to be willing to travel to London. Fairly direct from where you are...2hrs. Through NHS choices you can select hospital and consultant. Privately self pay you would be looking at about ~£22k.

 

User
Posted 16 Jan 2021 at 20:12
Hi TechGuy

Would you mind sharing the name of your surgeon? I assume you went privately, but do you know if he also provides his services to the NHS? If you want to keep that confidential, you could email me on: contactb.today@yahoo.co.uk

One other thing: we hear that London hospitals are reducing the number of major surgeries in favour of Covid-19 patients. Yet another factor!

User
Posted 16 Jan 2021 at 20:21

PM'd you as we cant share on the discussion group unfortunately. Yeah Covid is a curve ball.

 

User
Posted 16 Jan 2021 at 21:15

Thanks for your message, Simon. Unfortunately I can't respond as it says:

"To protect our members from spam, newly registered members aren't allowed to send private messages. Private messaging will become available after you've participated more in public conversations."

 

So I'll have to wait!

User
Posted 16 Jan 2021 at 21:17

Thats cool.  Yes, I think there is a timeout as was an issue for me. Please also check out my thread if you've not seen it as plenty of info there. Just shout if you need anything as happy to help where I can like the folks helped me during this journey.

User
Posted 17 Jan 2021 at 00:51
You will find the name of Professor Whocannotbenamedhere from the Royal Surrey County Hospital in Guildford if you Google ‘Santis prostate’

Best of luck.

Cheers, John.

User
Posted 17 Jan 2021 at 11:22

Thanking TechGuy and Bollinge. I read about this Professor and his work and location around Christmas time, when I started my research shortly after my diagnosis on 14/12/20 (carved into my brain!).

I haven't contacted him yet, but I can imagine he gives preference to private patients, or there will be a long wait under NHS, if he in fact services the latter. I do wonder what is happening with the rollout of his technique.

User
Posted 17 Jan 2021 at 11:46

He’s a great guy and says it how it is. I spoke to him before Xmas for quarterly review and he said he is still busy with RARPs both privately and NHS albeit with Covid secure processes. 

Retzius technique was co-developed by two urological surgeons (Italian and South Korean) The prof has spent a lot of time with them and regularly meets at conferences to give instruction and demos. He was due to travel around the US with some of them last year but not sure if that happened with the travel restrictions. 

I’d be tempted to just get a second opinion as that always seems prudent. I know the Prof has a clinic at BMI Basingstoke but worth posing the question.

Just be mindful that even with a high volume surgeon with great skills still doesn’t make them a miracle worker. With me there was more work to be done than the MRI/biopsy revealed and we are only as good as the last PSA bloods. All you can really do is loads the dice 🎲 as much as possible if your favour 🤖

Edited by member 17 Jan 2021 at 11:48  | Reason: Not specified

User
Posted 17 Jan 2021 at 12:49
Also keep in mind that not everyone feels the same way about an individual surgeon. Some specialists have big marketing teams working for them and having a couple of people who rave about their experience has to be weighed against those who have had poor outcomes or felt that their aftercare was severely lacking. Neither our urologist or onco or the oncologist who used to come to deliver the talk at the Leicester meet up each year had a good word to say about a surgeon that is supposedly one of the best in the world. Some surgeons have great results because they cherry-pick their cases; some have what look like statistically not-so-great outcomes because they are more willing to operate on T3 men, etc.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 26 Mar 2021 at 15:57

I think I have a spot of long Covid - a persistent productive cough, following an episode of SARS-like symptoms about a year ago.

I asked at the time, one of my itinerant GPs (they all seem to be temporary locums or part-timers), for a Covid antigen/antibody test, and he said: ”I’ll get back to you”, and of course never did.

Anyway, a year later under a chest consultant, I had a post-Covid blood test which showed no sign of any antibodies - too late? This whole time I have never had a stethoscope near my chest!

So they want to give me an iodine-enhanced tracer CT scan of my lungs, and asked me to get a kidney/liver function blood test prior. I asked the doctor to add PSA to that test.

All the results came back AOK, including a <0.1 ‘undetectable’ PSA result.

Happy days!

Cheers, John.

Edited by member 26 Mar 2021 at 15:59  | Reason: Not specified

User
Posted 26 Mar 2021 at 16:10

That’s great news John.  ‘Happy Days’ indeed!!

Angex 

User
Posted 27 Mar 2021 at 18:48

Great result 👍🏼

User
Posted 27 Mar 2021 at 19:42
I hope the scan shows nothing of concern x
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 27 Mar 2021 at 19:51

John, great result on the PSA , hope you get the chest problem sorted.

Thanks Chris

User
Posted 28 Mar 2021 at 03:42

Originally Posted by: Online Community Member
I hope the scan shows nothing of concern x

I’ve had a chest X-Ray and sputum test which were clear. I have no breathlessness, just a chronic cough, which is just a bloody nuisance, but no problem.

The telepathic consultant more or less diagnosed bronchiectasis over the telephone without ever seeing me, so that’s why I’m having the CT scan, and yet another telephone consultation with her afterwards.

I wonder if our Covid Health Service will rely exclusively on Zoom consultations in the future?

Cheers, John.

User
Posted 28 Mar 2021 at 10:37
I'm not sure.

5 weeks ago I was referred to a new specialist on a 14 day cancer pathway. Managed to have a phone appointment last week but in the confirmation letter, all the info is wrong. Biopsy appointment has come through for 22nd April - 9 weeks for a 14 day pathway is not great.

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

User
Posted 28 Mar 2021 at 11:03

Good result on the PSA. Hope the scans come back clear. Keep calm and drink tea ☕️ 🫖 💪

S

User
Posted 28 Mar 2021 at 22:13

Great PSA result John. Hope the cough resolves.

Ido4

User
Posted 29 Mar 2021 at 03:08

Originally Posted by: Online Community Member
5 weeks ago I was referred to a new specialist on a 14 day cancer pathway.

Sorry, I should have said earlier that I hope your tests come through rapidly and it all amounts to nought. You certainly have the spectre if The Big C hovering round your family!

We do tend to get our money’s worth out of the Covid Health Service as we get older...

Although my 86 year old father-in-law has just forked out fifteen grand for a hip replacement op next week, as he can’t afford a 12-18 month wait to get it on the CHS.

Out of interest, I checked and the price of that surgery in the US and it’s around $30,000, and in the quote I looked at, even if you have insurance, they expect you to pay three grand excess yourself, or co-payment as it’s known there.

No wonder all the doctors there are millionaires.

Cheers, John.

 

Edited by member 29 Mar 2021 at 11:59  | Reason: Not specified

User
Posted 29 Mar 2021 at 12:49

My father just had hip replacement done in Ottawa as he has been been out there a while as a resident. No charge and just under two months waiting time 🤷🏼‍♂️

User
Posted 29 Mar 2021 at 14:07
Cheers Bollinge, so do I 👍
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 26 Nov 2021 at 15:01
Six-monthly PSA test this week, four years after diagnosis, and still ‘undetectable’ at <0.1 😀

Looks like I may have another six months to live, that’s if the South African scariant doesn’t get me!

Cheers, John.

User
Posted 26 Nov 2021 at 15:05

Fantastic news, John. Long may it continue and cheers 🍻

Simon

User
Posted 26 Nov 2021 at 15:13

John

good news, long may your recovery continue.

Thanks Chris 

 

User
Posted 26 Nov 2021 at 15:21

Thats great news john im 6 month post op and mine are 0.03 so alk good so far 

User
Posted 26 Nov 2021 at 15:52
Have I really been putting up with you for 4 years - how time flies! 🤯

Good result x

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

User
Posted 26 Nov 2021 at 15:56

Great result 👍

User
Posted 26 Nov 2021 at 18:06

Brilliant news 👍🏽

User
Posted 26 Nov 2021 at 23:24

Well done young man 

User
Posted 27 Nov 2021 at 07:08
Well done bollinge, shame your dick is <2in too!
User
Posted 27 Nov 2021 at 11:03

Great news John. 

Ido4

 
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