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My Retzius sparing RARP + NeuroSAFE journey

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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 :-/

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