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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. 

User
Posted 27 Nov 2020 at 15:09

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

User
Posted 27 Nov 2020 at 17:24

Originally Posted by: Online Community Member

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.

Same lab at local hospital etc

Tiz but a mere blip of noise. Still <0.01 which would be classed as not detected in a lot of hospitals.

It's a great shame they never quote the uncertainty, U along with results. Right down at the bottom of the sensitivity scale it's probably rather a high percentage of the reading*. (I studied analytical chemistry).

It would look something like this (numbers pulled from derriere)... 0.007 +/- 0.0005

Like you, I'm a geek and data junkie and would like to spot a trend way before it's a problem. But that really is too small to call at this point.

At my recent review I was told they wouldn't start getting interested until 0.17 which would probably trigger a PSMA PET scan, with 0.2 being the threshold for "recurrence". Here's hoping neither of us ever get there. 👍

 

* https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3402036/ 

Online Community Member wrote:

The assay exhibited a functional sensitivity (20% inter-assay CV) of less than 0.00005 ng/mL (0.05 pg/mL), total imprecision of less than 10% from 1 to 50 pg/mL, and excellent agreement with the comparator method.

 

_____

Two cannibals named Ectomy and Prost, all alone on a Desert island.

Prost was the strongest, so Prost ate Ectomy.

User
Posted 27 Nov 2020 at 17:35

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!

User
Posted 27 Nov 2020 at 18:06

Techguy

That is a great result. Hope it continues. Interesting info from Alex.

Thanks Chris

User
Posted 28 Nov 2020 at 03:04

Originally Posted by: Online Community Member

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!

Symantec,

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.

User
Posted 28 Nov 2020 at 08:21

Fingers crossed @ TG

User
Posted 28 Nov 2020 at 12:41

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

 

User
Posted 28 Nov 2020 at 13:05

Brilliant to follow your experiences, it's certainly puts a light at the end of a tunnel

thanks

 

User
Posted 29 Nov 2020 at 02:03

Originally Posted by: Online Community Member

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

User
Posted 29 Nov 2020 at 08:36

Originally Posted by: Online Community Member

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

You have a GREAT test result, nothing of concern at all, 6 months next test, would do for me!

User
Posted 29 Nov 2020 at 10:09

Originally Posted by: Online Community Member

You have a GREAT test result, nothing of concern at all, 6 months next test, would do for me!

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

_____

Two cannibals named Ectomy and Prost, all alone on a Desert island.

Prost was the strongest, so Prost ate Ectomy.

User
Posted 29 Nov 2020 at 14:56

@Alex you nailed that 😀 Us data folks are very literal and should apply more fuzzy logic. I looked into buying a PCR for the home. Just need to date a nurse and I'd be sorted :-). 

@bob thanks mate. Yeah now its sunk in i'm a bit more relaxed....sauvignon Blanc works wonders :-/

@KevT Everything crossed :-)

@John Wise words mate. All points spot on. I'm more chilled now....in my head It kinda hoped the <0.006 figure would continue for at least 2 years post op but will see what next value is. As you say no need to panic at these levels. Have my quarterly review with the Prof on the 11th so will send him & DaVinci your regards.

@colwickchris Thanks mate

Blood were interesting. Usually flow without much trouble. This time my arm didnt want to yield more than the first ~30% without a fight. My fantastic nurse was very patient a adjusted the needled depth and I was pumping away with my fist. Had done all the usual prep like a litre or so of water beforehand plus worse thick clothes etc so blood vessels done go and hide from the cold. Time to hit the gym I think :-)

Have a good weekend all.

User
Posted 29 Nov 2020 at 15:20
Do mention ‘John Holland’ to Professor Whocannotbenamedhere when you see him. I doubt he’ll ever forget me amongst his 4,000 odd patients!

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.

User
Posted 29 Nov 2020 at 15:25

I will do....I had a hunch you would have memorable traits. Much like me I suspect :-)

I'm due a wisdom tooth extraction follow a CT scan around the same time too so the skype call should be interesting. 

Good luck with your vampire and hope the vein doesn't put up much of a struggle.

Simon

User
Posted 29 Nov 2020 at 16:02
😂🤞
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 11 Dec 2020 at 13:04

Just spoke to the Prof Whocantbenamedhere. He wasn't too concerned about the slight increase in PSA from <0.006 to 0.007. But we agreed to check it again in March rather than 6 months down the line. I've got an ongoing wisdom tooth issue at the moment which is causing inflammation in the area so hopefully the slight increase may be attributed to a swollen submandibular gland....here's hoping eh!

Anyway time to put it on the back burner and wait for more data :-)

 

Edited by member 11 Dec 2020 at 13:09  | Reason: Not specified

User
Posted 11 Dec 2020 at 13:05

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

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

User
Posted 18 Mar 2021 at 12:35

PSA Bloods at 16 months March 2021 0.008.

So historically:

Feb 2020 <0.006

May 2020 <0.006

August <0.006

Nov 2020 0.007

Mar 2021 0.008

So not ideal but not too concerned at this stage. Will suggest reviewing after 6 months. I'm still hoping its something to so with my salivary glands inflamed with ongoing impacted wisdom tooth issue which kicked off Q3 last year. Had crown surgically removed back in January but surgeon couldn't get all of it as embedded deep and would risk nerve damage.  Gland very much still up if not worse. Probably have to risk having whats left removed with a risk of temporary/perm nerve damage. 

I won't start chewing my nails just yet until around ~0.03 should I ever reach that :-/

 

 

User
Posted 18 Mar 2021 at 17:45

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

User
Posted 18 Mar 2021 at 18:01

Thank you. Yeah totally so defo needs perspective as no guarantees with this journey. My view for surgery was always to at min buy me quality of life time hopefully until immunology matures. I think I was right on the borderline for T3.

Hope things are ok with you Jim.

just had my AZ (Oxford)Covid-19 vaccine so at least that’s done. Pretty much didn’t even feel the needle. After spinal anaesthesia I didn’t take much notice.

User
Posted 18 Mar 2021 at 18:38
Symantec,

As I have said before, my local hospital only tests to 0.1, so anything under that is ‘undetectable’.

Professor Whocannotbenamedhere told me himself he is no fan of super-sensitive assay, as it causes too many anxieties and problems due to due to ‘noise’, exactly as you are experiencing now.

Come and get your tests done in Coventry, and worry about something else!

Cheers, John.

User
Posted 18 Mar 2021 at 19:00

Thanks John :-)

I'm coming around to your way of thinking. My nurse taking bloods said similar. I'm pretty chilled after it so all good. Will suggest to the Prof we schedule next set for six months. Summer beers and BBQ's are calling. Hope all is well with you and hope you've been vaccinated :D

User
Posted 19 Mar 2021 at 07:09
Yes, I had my first Oxford / Astra Zeneca shot a month ago. I watched the needle and the doctor pulled it away, and I asked ‘Have you done it?’

‘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.

User
Posted 19 Mar 2021 at 07:17

yeah all very straight forward. At the 22 day mark will be ready for pub gardens and self shopping. Should be epic to get out and about again. Those cruise companies are needing the cash injection. Those that survive will be doing well I suspect as the masses emerge. Have a good weekend and hope the dentist goes relatively painlessly. 🥶🤪

User
Posted 11 Jun 2021 at 17:15

Quarterly (June) PSA Blood result <0.006. Which is great. Looks like previous numbers might have been machine error/noise/calibration. Fingers crossed for next test late September.

thanks to the folks here for the heads up about possible vaccine v PSA anomaly. I booked up my PSA the day before my 2nd jab. 

Have a good weekend all!

User
Posted 11 Jun 2021 at 18:12

Originally Posted by: Online Community Member

Quarterly (June) PSA Blood result <0.006. Which is great.

 

Excellent. 😀 I've got one next week. 

_____

Two cannibals named Ectomy and Prost, all alone on a Desert island.

Prost was the strongest, so Prost ate Ectomy.

User
Posted 11 Jun 2021 at 19:17

Hope that comes back great too. Keep us posted!

User
Posted 11 Jun 2021 at 20:52

Great news!

User
Posted 11 Jun 2021 at 22:44

Great news. Long may that continue.

Ido4

User
Posted 12 Jun 2021 at 15:40

Less than 6 thousandths of a thousand-millionths in a thousandth of a litre.  A miracle of detection.  All the best, Peter

User
Posted 12 Jun 2021 at 16:00
Brilliant
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 12 Jun 2021 at 16:16

That's great news! 

 
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