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My Retzius sparing RARP + NeuroSAFE journey

User
Posted 02 Nov 2020 at 20:46

Hi Chris

Good old spreadsheets....if its good enough for Covid-19 test & trace....whooops :D

If you are London based definitely worth spending a couple of hundred quid to chat with the UCLH HIFU team I'd say. It was my initial preferred route until I found mine was multi-focal. Plus after some research and seeing that PCa tends to be a multi-focal disease by its very nature this pushed me in the direction of surgery. Talking with a few peeps here and via local support groups I found the fantastic Prof Whocannotbenamedhere (Same as Bollinge) to give myself the best chance of a good outcome. He operates out of London Bridge amongst others. 

Tap up 'AndyProstate' on here as he's been through the HIFU journey at UCLH and recently had a RARP (Robotic Surgery). 

If the NHS route has heavy delays the Private options are worth scoping out if you have budget (around ~£20k) I was seen within a few weeks of initial consultation for a 2nd opinion with the Prof. Not sure of leads times with COVID but if you have the cash I would be tempted to explore these avenues. Luckily I had private medical which thankfully I'd never cancelled in the years I never needed it.

With a gleason of 4+3 i'd tend not to wait to long. My pre-op gleason score was 3+3. Post-op histology revealed final gleason score of 3+4. At some point its likely the tumour will break through the capsule of the prostate plus being a metastatic disease the sooner it can be treated the better.

Shout me if you need any more info as more than pleased to help. 

Simon

 

 

User
Posted 02 Nov 2020 at 23:34

These recent public studies are am interesting read ref: Retzius Sparing Robotic Assisted Radical Prostatectomy(RS-RARP):

https://www.sciencedirect.com/science/article/pii/S2666168320358304

https://www.auajournals.org/doi/10.1097/JU.0000000000001435#.X5G6Q9PhcuE.twitter

 

User
Posted 03 Nov 2020 at 14:50

Symantec, an interesting read of course, thank you.

I have no incontinence problems, and no Peyronie’s disease as what’s left of my penis is too short to turn a right angle and I can’t get it erect anyway!😉😂😉😷

You can’t have everything I suppose, and I haven’t got cancer, so happy days!

Cheers, John.

Edited by member 03 Nov 2020 at 14:52  | Reason: Not specified

User
Posted 04 Nov 2020 at 12:18

Originally Posted by: Online Community Member
If you click on my profile ‘Bollinge’ you can see my notes on my surgery with the same guy as Symantec (Tech Guy).

I and four friends aged around sixty were all diagnosed with cancer about two years ago. Three of us had ‘top-rated’ surgeons, yet the other three apart from me had recurrence and had to resort to radiation therapy, which they could have had anyway, without surgery.

So make sure you speak to an oncologist as well to discuss your options.

Hifu is a bit of a high-falutin’ innovation, not widely practiced, but ‘Old Barry’ here is well versed in it and able to advise. Get in touch with him.

Best of luck.

Cheers, John.

I have very similar PCa diagnosis to you, 4+3. Did you have RARP? Was it private or NHS? I'm worried about how long it's taking to come up with a treatment option and how long it takes to talk to any consultant/doctors!

User
Posted 04 Nov 2020 at 12:45
I saw the local NHS urologist, but a rich friend with it who had seen five different surgeons on three continents recommended Professor Whocannotbenamedhere who had done over three thousand prostatectomies and was pioneering Retzius-sparing in Britain.

I saw him privately in his palatial rooms in The Shard on the South Bank on London, @ £250 for twenty minutes. He charges £20,000 for the procedure Tech Guy had on his insurance, but I asked him to put me on his list on the NHS at Guildford, which he was happy to do.

When I mentioned Retzius-sparing to my local NHS surgeon at my ‘Dear John’ meeting, he said: ‘You’d better speak to Prof XXXX then. ‘I replied, funny enough, I have a consultation already arranged with him next week in London’. I had already twigged I had the Big C, so had made preparations for it.

At the height of the previous lockdown, the Prof and his team had their prostate surgery clinic up to 80% capacity, and I would think it’s up to 100% now. As Matron said, PCa is usually slow-growing, and I waited seven months from diagnosis to surgery, which was down to me, not the NHS.

You can find more about prostatectomy if you search for ‘Santis prostate’.

Best of luck.

Cheers, John.

User
Posted 04 Nov 2020 at 12:48

Many thanks John, I'll go check that out!

User
Posted 04 Nov 2020 at 13:08

The private route timings were fast. I booked to see the Prof for an initial consultation on 1st Nov ‘19 at London Bridge (second opinion) and to ask if he was happy do take me on for surgery. Lead time for that was about a week from memory. I could have had surgery  the following week (due to a cancellation) but I put it back for 3 weeks to get all my affairs in order etc Plus 8 weeks previous I had the biopsy so I was mindful to let that heal and be less ‘sticky’ internally.

I forwarded a case notes summary before the consultation then took a folder with complete history and disc with copy of my recent scan which he welcomed.

Surgery took place early morning on Weds 27th Nov 19 and I got home mid (via a 90min train trip/bus) afternoon on Friday 29th......crazy day as we left~ 30mins before whole area went into lockdown with the London Bridge terror attack.

End to end a very smooth experience. 

Edited by member 04 Nov 2020 at 13:11  | Reason: Not specified

User
Posted 04 Nov 2020 at 13:15

Originally Posted by: Online Community Member

The private route timings were fast. I booked to see the Prof for an initial consultation on 1st Nov ‘19 at London Bridge (second opinion) and to ask if he was happy do take me on for surgery. Lead time for that was about a week from memory. I could have had surgery  the following week (due to a cancellation) but I put it back for 3 weeks to get all my affairs in order etc Plus 8 weeks previous I had the biopsy so I was mindful to let that heal and be less ‘sticky’ internally.

I forwarded a case notes summary before the consultation then took a folder with complete history and disc with copy of my recent scan which he welcomed.

Surgery took place early morning on Weds 27th Nov 19 and I got home mid (via a 90min train trip/bus) afternoon on Friday 29th......crazy day as we left~ 30mins before whole area went into lockdown with the London Bridge terror attack.

End to end a very smooth experience. 

 

Sounds like a positive experience. Sadly I don't have 20k around and due to my hear bypass in 2017 no medical cover! That being said I could cover a consultation to discuss my case and see if it's a candidate for RARP type surgery. If so I'd need to get referred to his NHS hospital in Surrey and no idea on the wait time for that.

User
Posted 04 Nov 2020 at 13:50

Hi Chris

I’d say worth the consultation if only for another perspective. I found the Prof very easy to discuss my case with and it just rubber stamped my gut feeling that this was the route to take. He demonstrated immense knowledge and very impartial. Following the meeting I bit the bullet and decided to move ahead with the RARP as felt I was in safe hands with the best probability of a good outcome.

Not a single regret since.

Good luck and shout if you have any more questions.

Simon

User
Posted 04 Nov 2020 at 16:19

Originally Posted by: Online Community Member
Sadly I don't have 20k around and due to my hear bypass in 2017 no medical cover! That being said I could cover a consultation to discuss my case and see if it's a candidate for RARP type surgery. If so I'd need to get referred to his NHS hospital in Surrey and no idea on the wait time for that.

 

You might need to check & re-think before you spend lots of money on private consultations. In many cases, a previous heart bypass rules out keyhole surgery because it puts so much stress on the heart - you are tipped head down for a number of hours on the operating table. If you want surgery, you may have to look for a surgeon who offers open RP and accept that recovery will take a bit longer. 

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

User
Posted 09 Nov 2020 at 14:04

Thanks lots, and this is very helpful! 

User
Posted 09 Nov 2020 at 14:05

Really appreciate it, Lyn. 

 
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