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PSA Anxiety.... I know better but can't help it.

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Posted 10/10/2013 5:14 PM (GMT -5)
H there,

I have lurked int he background since my boyfriends diagnosis in Nov of 2012.  Found it with a higher than normal PSA of 4.8 at 65 years of age. He had surgery in Dec 2012 at Mt. Sinai in NYC with Dr. Samadi.  The pathology was great... neg margins, neg SVI, no PNI, no lymph node invasion, organ contained, 20% bilateral tumor involvement with Gleason 3+4, so deemed a pT2c.  He is still leaking, but making slow progress.  Also ED is slowly improving.  Using trimix and pills.  His 3 and 6 month PSA at his surgeon's lab came back at <.01, so we were very happy.  In addition he receives disability benefits from the VA due to his time in special forces in Vietnam and exposure to agent orange, so 2x per year they do a complete blood workup. His first PSA post RP with the VA was <.01.  His second, in August came back at .02.  I know this is undetectable by all standards, but I cannot help thinking about it and worrying.  We go back to his surgeon for his 9 month PSA in another month.  I am hoping the most recent PSA at the VA was a blip or maybe they used another lab and all will be normal with his surgeons lab.  I can't help the crazy thoughts!  The fact that his disease was bilateral and was a GL 7 adds fuel to my fire, even though I intellectually know we're still undetectable.  A <.01 would just make me feel better.  Am I crazy? 

Posted 10/10/2013 5:21 PM (GMT -5)
Welcome to HW. Sorry you need to be talking to us.

First you're not crazy. Second, a change of .01 isn't enough to even think about. Could just be an error in the test machine or any of a number of completely explainable reasons. Questions like, was this using the same lab, with the same machine? come up.

These ultra sensitive tests seem to be designed to generate anxiety.

In any case you shouldn't be concerned unless you see a string of rising test results.

What you do have is a solid case for joining the zero club and every hope of having beaten this thing.

My advice, go enjoy life and let us know that the test result is.

All the best,
Andrew
Posted 10/10/2013 5:45 PM (GMT -5)
It is perfectly normal to have PSA anxiety. I told my doctor I didn't even want to know my exact numbers unless there is a concern on his part. All he has ever said to me is "undetectable" and that's the way I want it because with the ultra sensitive tests, as others have said, there can sometimes be needless worry. Odds are very much in your boyfriends favor that you both can celebrate a lifetime of zeros.

Good luck,
Tom
Posted 10/10/2013 6:38 PM (GMT -5)
Teddy, crazy you aren't...just anxious like so many. As a wife, I too dread my husband's annual PSA test but, after 5 years of this, I'm also able to tell myself to get a grip.

As mentioned, this is an issue with the ultra-sensitive PSA tests...a change from 0.01 to 0.02 can cause anxiety and a lot of fear. Your boyfriend's body will still produce very low levels of PSA which die off quickly. Due to the sensitivity of the PSA assay used by his doctor, these very low levels such up as "numbers." Using a standard PSA assay, they wouldn't show up...and his result would be <0.1.

From where I'm standing, I'd say your boyfriend is doing just fine. My husband is 5 years out from surgery and his PSA is either <0.1 (the urologist) or 0.02 (his primary care doctor). Both results pretty much mean the same thing: PSA is below the threshold of 0.1.
Posted 10/10/2013 8:22 PM (GMT -5)
Thanks for the encouragement. I know better... I just need to get a grip. The funny thing is back in 2001 my father was diagnosed with PC. He was cured with an open surgery. I didn't have as much info back then than I do now and I was much more at ease. What I knew was he had a higher than normal PSA, biopsy for a GL 6, surgery for a cure and undetectable every since. It seemed so simple back then. Now, with all the info and dissenting opinions, I can't seem to relax at all. To some degree, ignorance can be bliss.
Posted 10/10/2013 9:12 PM (GMT -5)
Hi Teddy,

Welcome. Trust me, PSA anxiety is just part of the deal. I've been doing this for 11 years now and would like to think I've read everything, know everything, and have a grip. But I just went through a bout of heightened anxiety because of a new lab reporting my results in a different way than the previous lab.

But let's take a step back and look at what you know so far. Your guy has had a pathology report of pT2c and has PSA readings since of <0.01 and 0.02. My uro has told me (and based on my test results over the years I have reason to believe him) that he doesn't trust any results less then 0.03 to even be meaningful--they can go up, they can go down--the test just isn't accurate way down at that low range. I've had upticks in that range that became lower in the next test.

And then, even if there is a pattern of increase, there is no reason to believe that any increase ramps up on a linear scale. In my personal experience I went about 4 years before hitting 0.1. And then when I hit 0.1 I stayed there for three more years before the PSA started moving again. And now -- more than three years after salvage radiation I am, according to my new lab, <0.02.

Get back to living your life and don't worry about these small blips in PSA (I'm telling myself this, even as I'm telling you). More important is to watch for acceleration -- and only after you are within some part of the reliable range of the test's bottom edge of sensitivity--which is higher than anything that has been reported to you yet.

BTW, also a Vietnam veteran on a partial disability for residual effects of PCa.
Jim
Posted 10/10/2013 9:16 PM (GMT -5)
Please don't fret, worry, or even be remotely concerned about the difference between a <.01 and a .02 PSA reading. This is exactly why Walsh and other PC experts are so against ultra sensitive PSA readings

You are so, so far below even the detectable threshold of .10, couldn't imagine it even being a concern.

Enjoy your "zero", you are doing well. No other way to say it.

David
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