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My Retzius sparing RARP + NeuroSAFE journey

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User
Posted 04 Nov 2021 at 15:09

I see Professor Whocannotbenamedhere is using a new robot in his private clinic, which only involves one laparoscopic puncture in the abdomen, rather than the six or seven wounds that we ended up with a few years ago.

Apparently, this robotic arm has four tentacles which roam your insides to do the business, like something out of ‘Alien’.

I had never heard of this, and only looked at his website as I was recommending the Prof to a sixty year old friend, who asked his GP for his first ever PSA test, who with a cursory “Have you got any symptoms?”, and thus told him to bugger off!

My mate paid for a private test by post, and the upshot is he has cancer G3+5=8, which might have killed him if left to the care and ministrations of his GP.

I believe a formal complaint is in train.

Cheers, John.

Edited by member 06 Nov 2021 at 12:40  | Reason: Not specified

User
Posted 04 Nov 2021 at 16:14

I wonder, John, whether the robot you refer to is the one made in Cambridge? It is called Versius and is made by CMR Surgical. Though that one does make 3 punctures and has 3 arms.

I mentioned this robot to the surgeon at Addenbrookes when I attended the hospital earlier today and asked whether they had been offered a discount on obtaining one or two.  His answer was: "Not yet"

 

 

Ivan

User
Posted 04 Nov 2021 at 16:45

Yeah might be the CMR or the new DaVinci single port system. Spoke to the prof about it last year as I have more that a passing interesting with robotics and machine learning. Will ask the Prof tomorrow if I remember as catching up with PSA results.

User
Posted 04 Nov 2021 at 16:48

All to common with PCa…if I had a quid for ever time I’ve been told this is the best cancer to have and very treatable..… 🤷🏼‍♂️😵‍💫🥶 Bottom line it’s still cancer and even at type 3+3 exhibits all the traits and can metastasise. Learning this on my own looking at various leading research papers make me act fast. The histology would say I’d made a timely decision 😵‍💫

User
Posted 06 Nov 2021 at 07:15

Originally Posted by: Online Community Member

Quarterly PSA bloods done on the 28th Oct…this time they got blood out of the old stone with ease.

Result was <0.006 so can’t ask for better than that as pretty much the two year post RARP point. Will touch base with the Prof at the end of the week🍻😎

 

Brilliant news TechGuy! Very happy for you!

I have my 2nd post op PSA coming up in early Dec and starting to get nervous. They only tested mine down to <0.03 last time. Do you think I should be asking for the ultra sensitive test like yours down to <0.006?

User
Posted 06 Nov 2021 at 08:32

Hi Jeremys 

It’s up to you really mate. Ask for the blood report maybe as my GP would always tell me <0.01 as a number but the report gives more viability.  personally I would just stick with the test you have. I had a couple of blips with data with was probably down to machine calibration or even assay used. Expected at these sensitivity levels I think but causes unnecessary worry. In the US I think the general threshold for BCR is 0.03 but more about how the numbers move as should always be the case.

Simon

User
Posted 06 Nov 2021 at 10:12

Originally Posted by: Online Community Member

Originally Posted by: Online Community Member

Quarterly PSA bloods done on the 28th Oct…this time they got blood out of the old stone with ease.

Result was <0.006 so can’t ask for better than that as pretty much the two year post RARP point. Will touch base with the Prof at the end of the week🍻😎

 

Brilliant news TechGuy! Very happy for you!

I have my 2nd post op PSA coming up in early Dec and starting to get nervous. They only tested mine down to <0.03 last time. Do you think I should be asking for the ultra sensitive test like yours down to <0.006?

 

No. Ultrasensitive PSA is becoming discredited anyway, if your hospital provides results to 0.03 then that is the assay of their equipment, and what would you gain now? If your reading came back as 0.026 this week and 0.029 next week, what would that tell you? It could have been 0.031 last time for all you know.

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

User
Posted 06 Nov 2021 at 11:10

Yeah I think the term is ‘noise’. Personally I like the raw data because that’s the stuff I use irl and without it I blue screen. But needs to be taken in context or can add to anxiety….as I’ve demonstrated 😵‍💫🤪

There is a lot to be said for Bollinges(John) approach and getting his <0.1 result which is more than enough in real terms. 🍻

User
Posted 06 Nov 2021 at 12:44

It’s the Da Vinci single port system, using an add-on gadget to an existing Da Vinci ‘octopus’  terminal.

Quite an advance!

Cheers, John.

User
Posted 06 Nov 2021 at 18:26

Hey John 

great convo with the Prof and he sends his regards and thanks for new leads. Apparently the new Da Vinci SP system isn’t in Europe at the moment but hopefully soon 🤖🤓

 

User
Posted 02 Mar 2022 at 12:12

Hi TechGuy,

 

Sorry it has been a long time and trying to PM you but your inbox is full. Just wondering how is your psa now, all stable and below 0.006? Would love to chat if possible and thanks so much! 

Best wishes

User
Posted 02 Mar 2022 at 12:17

Sorry just catching up on the threads and saw that you have pretty amazing results, such wonderful news!! 

User
Posted 02 Mar 2022 at 13:12

Hi AT

Yes thus far still <0.006. Next one due end of April so fingers crossed. Hope you are well and you husband numbers are good and he is making a good recovery.

Simon

User
Posted 02 Mar 2022 at 14:41

Thanks lots Simon, do you mind if I PM you? I can't seem to get through to your inbox as system says that it's full. 

User
Posted 02 Mar 2022 at 17:56

Sure. Cleaned it down a bit but it was only half full to start 😵‍💫

User
Posted 28 Apr 2022 at 17:24

PSA Bloods update:

Just got my April 25th number which is 0.007. Very happy with that. Not as brilliant as <0.006 but I’ve learnt given the tests sensitivity that it’s to be expected… previous data shows thus far the numbers kick around around between <0.006 and 0.008 which could be down to machine calibration/assay_used. Anything below <0.01 is a win I think 😎 So all good for another 6 months. Review with the prof early next month. Happy bank holiday weekend all! 🍻🍾

User
Posted 28 Apr 2022 at 17:28

Brilliant news TechGuy. Very happy for you. I’m sure you are right that when the test is that supersensitive the odd 0.0001 here or there is probably just machine calibration. Mine only gets measured down to 2 decimals so hard to tell if its moving about at all or not. Have a great Bank Hols

User
Posted 28 Apr 2022 at 21:31
Great news Techguy 👍 long May it continue.
User
Posted 23 Nov 2022 at 10:35

6 month PSA bloods update:

Undetectable <0.006 

Very happy with that. Always a little tense when going through this process. Certainly character building 😵‍💫👀 Couple of happy tears shed when I got handed the blood report. Now onto annual checks as this is the three year mark since surgery. Will also be handed back to my GP for monitoring.

I feel very fortunate to have been looked after through this process by the Prof Whocannotbenamedhere - who I regard as a rockstar surgeon. Thus far my outcome has been excellent and exceeded expectations and the post surgery support has been exemplary. 

Wish everyone seasons greetings and may 2023 bring us all positive vibes.

User
Posted 23 Nov 2022 at 13:50

Great result Techguy. Sounds like things are going well. Best wishes for 2023 and beyond to you and yours. 

Ido4

User
Posted 23 Nov 2022 at 15:31
Wonderful news techGuy. Long may it continue.
User
Posted 23 Nov 2022 at 20:04

Brilliant news techguy 👍 so happy for you and long may it continue. Would love to be copying your post in a couple of years time 🤞🏼 Best wishes.

User
Posted 24 Nov 2022 at 00:45
👏👏👏
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 13 Dec 2023 at 12:15

Annual PSA blood test results:

<0.025 (using new Abbott Method from mid this year)

Happy days as still undetectable. 🤪😵‍💫🍾

Not the sensitivity scale has been changed. Seems to be across quite a few trusts if not nationally. Test sensitivity via my GP/hospital lab was <0.006 until July this year. Abbott Method sensitivity appears to be <0.025. All good…I guess less queries due to calibration error etc 

Seasons best wishes all.

 

Edited by member 02 Dec 2024 at 11:32  | Reason: Not specified

User
Posted 13 Dec 2023 at 12:36

Long may it continue. All the best. 🥳👍

User
Posted 13 Dec 2023 at 14:56

Good result, may it remain so.

Interesting to note your trust changed its testing regime to be <0.025. I had this this summer it was initially a bit of a jolt to go from previously <0.006 to the new valuation point. After some investigation concluded a change in test minimum.  

P.

User
Posted 13 Dec 2023 at 15:07

Thanks!

yeah looks like the change was implemented effective from 24th July 2023. I guess maybe standardisation as I’ve heard a few friends who have had RARPs reporting the same. When the GP staff member initially said my value was 0.025 I did double take as was expecting around ~0.006. But with context all good 🤣🤪😵‍💫

User
Posted 14 Dec 2023 at 07:55

Good news TechGuy. !!! What a relief. very happy for you and wishing you Merry Christmas

User
Posted 02 Dec 2024 at 11:28

Annual PSA blood test results

<0.025 (Abbott Method)

Happy days as still undetectable. 🤪😵‍💫🍻

All the best for the festive season! 

Edited by member 02 Dec 2024 at 11:31  | Reason: Not specified

User
Posted 02 Dec 2024 at 11:31

Great news. Long may it continue. 👍

User
Posted 18 Dec 2024 at 17:37

Originally Posted by: Online Community Member

All to common with PCa…if I had a quid for ever time I’ve been told this is the best cancer to have and very treatable..… 🤷🏼‍♂️😵‍💫🥶 Bottom line it’s still cancer and even at type 3+3 exhibits all the traits and can metastasise. Learning this on my own looking at various leading research papers make me act fast. The histology would say I’d made a timely decision 😵‍💫

Absolutely boils my p*** when I hear this from people! Like I should be over the moon that I have it… “That’s one of the good cancers to get” or “My dad had this and he was fine” - then you find out their dad was 85! 

Well I’m 45, and am not overjoyed with the prospects of post-RARP side effects and neither is my wife!

I read on a cancer forum a post someone wrote about toxic-positivity following their diagnosis and it really captured the way I was feeling about how people had approached my diagnosis. I don’t want pity or to be molly coddled, but constantly being told ‘you’ll be fine’ trivialises it really.

User
Posted 18 Dec 2024 at 18:01

Hi RickandMorty.

The reaction of others to your diagnosis can be annoying. However, I think it's human nature to make light of it so as not to upset you.

I got sick and tired of people telling me how well I looked post op. When I actually felt shite and my head was a shed. I often felt like biting back and saying, "Do you realise I've not slept well for months.  I'm still uncontrollably pissing myself and my cock is now as much use as a chocolate kettle"

But I didn't because I think they were just ill informed and doing their best to reassure me.

 

User
Posted 18 Dec 2024 at 18:22
At least you can eat a chocolate kettle!

A female "friend" of mine said how it was the best cancer to get while I was waiting for the RP that nearly killed me. Her husband now has it, I have resisted the urge to ask if she still thinks it's a good deal.

 
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