My Retzius sparing RARP + NeuroSAFE journey

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

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

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.

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

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

Thanks lots, and this is very helpful! 

One year since RARP

PSA bloods taken on Tuesday 25th. Result back today: 0.007. So not as ideal as the three previous readings of <0.006. Still low as sensitive test but certainly a reality check.

I was due to move to 6 months PSA bloods but will have another test in 3 months to keep an eye on things. 

Same lab at local hospital etc

Edited by member 27 Nov 2020 at 15:35  | Reason: Not specified

Cheers Alex

Indeed. Need more data :-)

Will repeat in Late February and review then as it’s way to early to call as you say 🤓🤖

Onwards and upwards!

Calm down dear, and get checked again in six months. If you did have a detectable increase then, any metastases would be too small to do anything about them at that stage anyway.

Professor Whocannotbenamedhere told me he does not approve of ‘super-sensitive assay’ to umpteen decimal points as it causes more anxiety (such as yours) than it is worth.

Going for my six-monthly PSA on Monday, and hope to send the Prof his Christmas card (and WD40 for Da Vinci) with my PSA tests graph continuing to flat-line printed on it. 🤞 

Cheers, John.

John,

Appreciate your experiences, it is a great help.

As I'm new to the Forum, is it possible you could email me as I'm interested in following the same route as you with the same hospital. thanks

This useless private message system never seems to work, but you can email me at re.vision@btinternet.com

Cheers, John.

Edited by member 29 Nov 2020 at 02:04  | Reason: Not specified

He's a data freak. He'd take daily readings if he could, and plot them on an IoT-enabled device that he built and programmed himself. 😂You're suggestion of "LESS DATA" simply does not compute. 😀 

Edited by member 29 Nov 2020 at 10:11  | Reason: Not specified

I have been to various ‘amateur’ phlebotomists at local chemists and some struggle to get any blood out of me recently. They are allowed one attempt on each arm, and then they give you a ticket to push into the queue at the NHS Walk-In Centre to see a professional phlebotomist.

I asked why they could not take a sample from the bulging vein on the back of my hand, but apparently that requires a ‘butterfly’ needle that can only be administered by the NHS.

So I’m off to see Hayley at the pharmacy tomorrow at 7am, she’s a bloody good vampire, and I just hope she’s awake by then!

Cheers, John.

@John (Bollinge) The Prof says "Hello" :-)

Edited by member 11 Dec 2020 at 13:21  | Reason: Not specified

Still very good after this amount of time. Long may it continue! 👍

Wonderful compared to my 0.2 after 8 weeks, and 0.5 after 5 months. 😔

Take care.

Jim

‘Yes, bye bye’. Never felt a thing. Going to the dentist today for a filling, and I doubt that will be as painless.

When they phoned me for the Covid jab, they asked if I could make it at 11.27.

‘Sorry, I’m busy then, can you make it 11.28?’ They were doing one a minute!

We’ve got three cruises booked in the next eighteen months to make up for the four we had to cancel last year. Roll on the jab passport. We’ve held Yellow Fever vaccination passports for years.

Cheers, John.

Hope that comes back great too. Keep us posted!