I am about 1 year out from my prostatectomy. I've been checking my PSA every month at the same lab and every month it's been < 0.02 ng/ml. Today it was 0.02 ng/ml without the "less than" sign.
The response I've seen before to other patients who have had this kind of result is usually "oh, wait until you get 1 or 2 more results" ... but I can tell, you, where I sit now, only a few minutes from reading the test result, it's hard to calm the nerves.
I don't know that I'm looking for anything other than support right now. Thank you.
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MakeItRainbows
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Some patients mistakenly believe the added precision (extra decimals) of uPSA tests means it is more accurate. There is no meaning to a test that doesn't have treatment implications. There is no reason anymore to have uPSA tests. It is a relic of the past.
While it’s true that BCR is defined as 0.2, and that many/most treatment protocols start then, it’s another thing to say that uPSA is inaccurate. What makes you say it’s inaccurate?
Docs around the world will not "spend" time for cases less than 0.1. The honest/forward ones will bluntly tell you: "Come back when you breach 0.1". On the flip side the "carrying" ones will devise a series or silly excuses to get rid of you and at the same time pretend that this is for your own good.
Sadly I concur - the common approach/desire is to position this disease as a chronic illness and treat it with ADT. After RP this disease does not really "recur", it was still there. As I share I had six cancerous pelvic lymph nodes removed by my third treatment, salvage ePLND, at 0.13. All the cancer had to be there before 0.1.
I didn't say it's inaccurate. I wrote: "Some patients mistakenly believe the added precision (extra decimals) of uPSA tests means it is more accurate. "
The accuracy of a measurement i.e the fraction of the total error to the actual value is measurement apparatus specific. It is what it is. The total error, i.e. the difference between actual and indicated values is the sum of a number of partial errors, like random, calibration, operation, etc errors. It is the responsibility of the measuring lab to keep all these errors -exept the random one- within specs so that the reported values are meaningful. For the random one, the only tool in the toolbox for shrinking it is the exact repetition of the measurement N times and averaging results. On the other hand, there is a very simple way to degrade the measured accuracy by merely dropping valid digits. Doing so, one introduces deliberately a "rounding" error. Now, you may ask who is silly enough to throw away the baby with the bath water?, These docs that their SOC cookbook has no pertinent recepy to offer and TA is parroting.
Keep on with monthly tests. 0.03 is the "something is brewing" early wake-up call. 0.06 is the 50-50% split point for a textbook BCR (two consecutive tests above 0.2) within the next 2 years. The "bright" side of loosing the less than sign is that after 5-6 monthly tests you will be able to derive a no-nonsense PSADT, the only objective and prognostic metric there is. Good luck.
You are looking for support - I hope this is helpful. What you are doing is certainly not meaningless. I have been testing frequently with ultrasensitive testing since my RP nearly nine years ago. This type of testing calms my nerves and anxieties as I know this beast will not sneak up on me and at a volume of cancer that leaves me no alternative but ADT.
As you acknowledged, several more tests are needed to begin identifying a rising trend. I choose to rely on <0.010 as best indictor. Testing to the thousands provides a clearer picture with minor fluctuations at these very low levels.
After my RP and subsequent salvage RT I waited until 0.1 to take action. I now begin imaging and liquid blood biopsy testing at 0.03.
It is a hard balance… is more information better? I would have said before cancer almost unequivocally yes, but I have since learned there’s more nuance.
The group I'm with only reports a low reading of >0.1. They can test into 3 digits but only report as >0.1 - when I asked why they said that if they were seeing numbers increasing from .02 to .04, they wouldn't do anything anyway so why report it and cause stress. They would wait till it got above 0.1 so they could do a PSMA test to find out what we are up against and treat it accordingly.
I love this as I would live in peace/ignorance and not worry about it until there something that could be done.
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