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Another one bite the dust

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User

Posted 05 Sep 2021 at 09:34

@TechGuy, hey good to hear from you!

That's one thing I have noticed with prostate cancer: it forces you to live more in the now and less in the future.

One day at a time...

User

Posted 30 Jan 2024 at 13:29

Hello survivors,

A bit of an update as it has been a while since I last posted.

I had my RP surgery followed by PSA monitoring, which is arranged through my local GP clinic.

I have been slowly recovering and my PSA for 2 years was recorded as "< 0.01 ug/L". My consultant said it was undetectable. I was happy. 😀

At 2.5 year mark, my PSA test came back as "0.1 ug/L" on the letter. 😟

It represents a 10-fold increase over 6 months, which is a source of great anxiety.

Also, I have noted that they dropped a decimal in the test results. My consultant initial reaction was to suggest a change in 'reference range'. I tried calling the pathology lab at Epsom & St Helier NHS trust and the person I spoke to is not aware of any change in test protocol. I do not know if the same lab was used for the previous tests (there is only mention of the lab name on the last test result letter) so I am a bit at a loss.

My questions are:

is the dropping of 1 decimal significant and could a possible change in test lab or set-up explain the difference?

has something similar happen to someone else on the forum?

One day at a time...

User

Posted 30 Jan 2024 at 13:56

Totally understand the anxiety. Do you have the blood report? A copy should be available to you if not. Could be missing a < sign. Definitely consult with your doctor. My urologist always said we need at least 3 data points to determine a pattern and to have every 3 months if concerned.

User

Posted 30 Jan 2024 at 14:15

I know a number of hospitals now only test down to 0.1 and my last 4 or so test results have all shown less than 0.1. Previously my results were given as less than 0.04 (The previously lowest testing range). It could well be that the hospital, or the testing lab, has changed the test range and your results are only missing the less than sign. I would certainly want to clarify this with the hospital before deciding on what to do next.

Ivan

User

Posted 30 Jan 2024 at 14:20

Thank you for your replies.

I have now spoken to the lab and they have confirmed that my test assay has not changed and has always been the same. My test result is indeed 0.1 ug/L. So I went from <0.01 ug/L to 0.1 ug/L in 6 months.

Not great... wondering what is the next course of action.

One day at a time...

User

Posted 30 Jan 2024 at 15:58

This has not met the criteria for recurrence, so no immediate panic. Get a retest, then get tests every three months to see what is happening.

Dave

User

Posted 30 Jan 2024 at 16:40

Bob, for many of us, a post surgery PSA of 0.1 will bring us back under the umbrella urology. For me it meant more frequent PSA tests and as I approached 0.2 I was also referred to oncology. Treatment didn't start until I was just over 0.2. protocol is charging all the time and they may let you get beyond 0.3 before starting treatment.

Wondering is fine, worrying won't change the future results.

Thanks Chris

User

Posted 30 Jan 2024 at 16:54

Bob, we are in the same boat - RARP in May 23, initially a PSA of < 0.01 and then, 6 months later it's at 0.12. Next PSA test is March so we will see what's going on - if > 0.2 then I am to be referred for SRT.
Oh what fun! NOT

User

Posted 03 Feb 2024 at 08:42

Thanks for the sound advice. My main problem is the anxiety. I wish I could be ad level headed as you!

One day at a time...

User

Posted 03 Feb 2024 at 08:48

Thanks Chris. The latter from my gp states the psa level is satisfactory (in spite of tenfold increase from less than 0.01 to 0.1) so I guess 0.2 is the threshold triggering action... but does it make sense to wait that long ? A colleague of mine with PC had RP. His psa was 0.05, then 0.12 3 months later and 0.14, at which point he was referred to RT, which brought his psa to undetectable. It seems that, in his case, they did not wait for 0.2...?

One day at a time...

User

Posted 03 Feb 2024 at 09:00

Steve,

Sorry you're on the same boat! Hopefully, the radiotherapy (if needed), will bring you psa back to undetectable. That certainly was the case for a colleague of mine.

One day at a time...

User

Posted 15 Feb 2024 at 09:28

Saw the oncologist and had a repeat psa test which came back as less than 0.1 (the lab test accuracy does not provide result below 0 1). A drop from my previous results of 0.10. I have reintroduced cinnamon in my diet and added agaricus blazei. SRT is off the table. For the time being, that is... Oh the joy of living with Damocles' sword hanging over my head!

One day at a time...

User

Posted 15 Feb 2024 at 10:46

Hi Bob.

I'm still a little confused. Earlier you said that your PSA tests were all done at the same lab.

Originally Posted by: Online Community Member

My test result is indeed 0.1 ug/L. So I went from <0.01 ug/L to 0.1 ug/L in 6 months.

These figures indicated the lowest they measure to is 0.01.

In your last post you say that their lowest measurement is 0.1.

Edited by member 15 Feb 2024 at 10:49 | Reason: Typo

User

Posted 16 Feb 2024 at 08:35

Adrian,

Yes, the situation is confusing to say the least. My last test showing less than 0.1 was from a different lab. All my previous tests were by the same lab and showed less than 0.01 until the penultimate test which showed 0.1 exactly.

One day at a time...

User

Posted 28 Feb 2024 at 10:46

Ok, so here are my last 4 PSA test results:

08/23: <0.01 ug/L (usual lab)

29/01/24: 0.10 ug/L (usual lab)

13/02/24: <0.1 ug/L (different lab, test made just after consultation with oncologist)

23/02/24: 0.10 ug/L (usual lab)

It seems my PSA is exactly 0.10 ug/L, so just detectable.

My question is: should I proceed with SRT or wait? My oncologist has prepared the consent form for SRT. With a psa of 0.1, she thought that, while I am still in the safe zone (i.e. <0.2 ug/L), there is no point in waiting further and is proposing SRT. However, the 13/02 test result came back as <0.1 and she said there was no rush. My PSA is probably somewhere between 0.09 and 0.1 and different lab assays return slightly different test results, hence the confusion.

I know NHS will not trigger SRT until PSA reaches or exceeds 0.2 ug/L. Maybe the private health sector is happy to be more proactive?

Any views on this?

One day at a time...

User

Posted 28 Feb 2024 at 10:53

did you get this number from the lab blood report? I’ve noticed sometimes the person typing in the number on GP systems misses the rather crucial < sign. Happened to me with my most recent as was entered initially on the GP system as 0.025. When in fact the blood report showed <0.025. This was later corrected on the GP system.

User

Posted 28 Feb 2024 at 11:09

Originally Posted by: Online Community Member

With a psa of 0.1, she thought that, while I am still in the safe zone (i.e. <0.2 ug/L), there is no point in waiting further and is proposing SRT. However, the 13/02 test result came back as <0.1 and she said there was no rush.

She seems to have drastically changed her opinion purely on the lack of the < sign.

User

Posted 28 Feb 2024 at 12:10

Less than sign, < , can be significant. My last four annual tests via my GP were <0.04, <0.04, <0.07, <0.01 compared with <0.003 annually over the same period measured at a private hospital in London where I had my prostatectomy.

'Physics is like sex: sure, it may give some practical results, but that’s not why we do it.' Richard Feynman (1918-1988) Nobel Prize laureate

User

Posted 28 Feb 2024 at 13:14

Originally Posted by: Online Community Member

Less than sign, < , can be significant.

But on the rare occassion, like Bob's, can be exactly the same.

Very nice avatar. 👍

User

Posted 28 Feb 2024 at 15:22

Yes, of course and thank you!

'Physics is like sex: sure, it may give some practical results, but that’s not why we do it.' Richard Feynman (1918-1988) Nobel Prize laureate

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