I'm interested in conversations about and I want to talk about
Know exactly what you want?
Show search

Notification

Error

Psa rise shock

Email this conversation Print this conversation
User
Posted 07 Jan 2021 at 04:41

Hi all. I have been a member for over a year and followed others journeys finding support from reading them.
Please be gentle as I find writing things down difficult.
I had my prostatectomy in September 2019 and all seemed ok.

december 2919 psa <0.01

april 2020 psa <0.01

then doe to the virus couldn’t get a phone meeting till June. He seemed happy and put me onto 6 month checks. 
then had a psa test in December 2020. Shock 0.05 . Having trouble getting meeting at this time still no date.

very worried as such a large rise in short time. What could this mean

 

User
Posted 07 Jan 2021 at 11:54

A PSA of 0.05 is NOT "a large rise"! In many hospitals this would be reported as "<0.1" and you'd be none the wiser. See what happens in 3 months' time and don't worry about it.

Chris

Edited by member 07 Jan 2021 at 12:11  | Reason: Not specified

User
Posted 09 Jan 2021 at 00:00

"presumably the lab my GP uses just quotes to 2 significant figures above the LLOQ."

I think it is fairly standard nationally - PSA >1.9 is reported to 1dp and from >10 as whole integers

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

User
Posted 09 Jan 2021 at 07:11

My initial PSA is given as 57.82 which does seem somewhat over precise.

Show Most Thanked Posts
User
Posted 07 Jan 2021 at 09:45

Hi Metro Man,

The "rise" reported could be down to other things e.g. a different lab being used that reports only down to 0.05, the lab missing off the "<" sign (as happened to me - I remember sweating for days!). It may be just a "blip" as I understand that some PSA can still be produced in very small amounts even if you've had your prostate removed. So, try not to worry - it's still a very low reading in anybody's book.

Speak to your consultant or one of the Prostate Nurses. They will probably want to repeat the test now (as in my case) or in a couple of months to verify / start to establish a trend.

Best

Flexi

User
Posted 07 Jan 2021 at 09:57

Thanks for your reply Flexi.
I had my retest at the usual hospital and assumed they are using the same labs.I had to phone the urology dept to chase the results and also an appointment. Things are very difficult due to the virus and never speak to the same person twice.they promised to phone back but never have.

I am still awaiting a reply on an appointment.

 

User
Posted 07 Jan 2021 at 10:50
Don't assume anything re PSA testing ! A retest would make sense but if it does come back the same result the important thing will be the trend over time. If it keeps going up you have a problem, if it doesn't you haven't.

What was your final stageing?

User
Posted 07 Jan 2021 at 11:48

My final staging was Gleason 7 (3 x 4 ) T2c clear margins the surgeon said he was happy he had got it all.

User
Posted 07 Jan 2021 at 11:54

A PSA of 0.05 is NOT "a large rise"! In many hospitals this would be reported as "<0.1" and you'd be none the wiser. See what happens in 3 months' time and don't worry about it.

Chris

Edited by member 07 Jan 2021 at 12:11  | Reason: Not specified

User
Posted 07 Jan 2021 at 12:25

Thanks Chris 

I am more concerned that it is a rapid rise from <0.01 to 0.05 in only 8 month. This works out as a doubling Tim of only 3 month

User
Posted 07 Jan 2021 at 14:28

Metro man 

I don't think doubling time is quite as relevant under 0.1, sure the scholars will correct me if I'm wrong. Nice guidance says PSA  at least every six months in the first two years, although some of us are able to persuade staff to do  different intervals. 

There can be slight variations in results, I had two vials taken at the same time and there was 0.01 difference. My oncologist says it is our samples that are unreliable not the testing equipment. My PSA did fluctuate slightly but the three year trend to 0.2 was upwards.

I prefer the two decimal point results, it gave me a clear direction to where I was heading. I no longer have PSA test anxiety the results are what they are.

Thanks Chris.

 

 

 

Edited by member 07 Jan 2021 at 14:30  | Reason: Spelling

User
Posted 07 Jan 2021 at 18:56
Doubling time at supersensetive values is irrelevant. You need consecutive rises above 0.1 for it to be relevant prognostically. + You cannot work out a doubling time with 2 values when one was a <.

Check my profile for details of my PSA journey and why I no longer have the supersensetive test

User
Posted 07 Jan 2021 at 19:48
Super sensitive tests just cause unnecessary anxiety, to my mind.

Chris

User
Posted 07 Jan 2021 at 20:03

Originally Posted by: Online Community Member
Super sensitive tests just cause unnecessary anxiety, to my mind.

Chris

But we're all different and the key thing there is that you wrote "to my mind".

Some people (engineering types/scientists etc.) would be anxious knowing that they could be getting more precise information and they're not. It just depends on how you're wired. Hanging out on PCUK forums can also cause PSA anxiety as you get to read about everyone else's too 😀

In Oxfordshire they do 3 monthly for at least the first year, then 6 monthly for the next year or two.

I was told they wouldn't take any action unless it reached 0.2, with possibly a PET scan if it went above 0.17. Hopefully we'll not get anywhere near that.

_____

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

Prost was the strongest, so Prost ate Ectomy.

User
Posted 07 Jan 2021 at 22:09

Thank you all for your valuable advice and support . Feeling a bit calmer and stronger .
this is the first time I reached out for support and I am glad I did 

User
Posted 08 Jan 2021 at 02:20

This is something I posted a day or so ago to someone else in the same situation as you:

“ My billion pound super hospital only tests down to 0.1, so less than 0.1 (or <0.1) is classed as undetectable.

I have spoken to my surgeon and two oncologists and none were in favour of what they call ‘super-sensitive assay’ to umpteen decimal points as it causes too much needless anxiety. Keep an eye on the figure, what you don’t want is successive increases.

Come and get your tests done here in Coventry and stop worrying 😉.”

In your case, cause for concern needs to be when you have successive increases over 0.1, which I won’t ever know about if and until my PSA tests are detectable at over 0.1!

If you do have recurrence, it’s usually ‘cured’ by HT and or, RT.

Best of luck.

Cheers, John.

Edited by member 08 Jan 2021 at 06:48  | Reason: Not specified

User
Posted 09 Jan 2021 at 00:00

"presumably the lab my GP uses just quotes to 2 significant figures above the LLOQ."

I think it is fairly standard nationally - PSA >1.9 is reported to 1dp and from >10 as whole integers

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

User
Posted 09 Jan 2021 at 07:11

My initial PSA is given as 57.82 which does seem somewhat over precise.

User
Posted 09 Jan 2021 at 09:10
That was when the Y10 kid was in for his 2 weeks work experience.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

 
Forum Jump  
Email this conversation Print this conversation

Join the online community now.

Click through to become a member and gain access to support, information and real time replies.




MenuTop ▲
©2024 Prostate Cancer UK