Typical Plan When Post RP PSA goes from < 0.02 to >= 0.02?
I moved out of state since my prostatectomy so for the 18 months following I just did ultrasensitive PSA tests every 3 months. Up to 18 months they always came back < 0.02 but got my first one that said 0.02 (no other digits) instead of < 0.02. My post surgery pathology was "clean" my tumor was in the middle, no lymph node involvement with extended lymph no removal, no positive margins or seminal vesicle invasion. I was Gleason 3+4 but my pre-RP PSA was 29 (however higher PSA is typical with the tumors that are closer in and not at the peripheral of the prostate - but still it's a high risk factor.)
Some studies reference 0.01 as "undetectable" others 0.02 others 0.03 but all levels are extremely low.
I'm fully aware that there can be fluctuations unrelated to cancer recurrence at those low of levels but of course going from < 0.02 to 0.02 is a bit unnerving.
It's going to be a few weeks until I can establish a relationship with a Urologist in my new state so I have a couple burning questions that would be great to get answers to sooner than later.
I was planning after 18 months to go for tests every 6 months but with this slight change, I'm sure it's recommended to continue at every 3 to see if it is going up, at what velocity? Or do many Urologist recommend doing another test say a month later to rule-out lab error? Although when not testing to 3 digits the difference between 0.02 and < 0.02 is quite negligible. If it came back 0.02 or 0.03 though a month later it would at least confirm it was not just an anomaly.
The second question which I admit is pessimistic thinking but still nice to know is, for private insurance, what evidence/results does the Urologist need to provide to get salvage radiotherapy approved? Can people like me, assuming a slow year or more doubling time, still be years out from being approved for salvage therapy?
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I hate to say this, but you will live in doubt from here on in; I too suffer from the anxiety of small changes in PSA and I’ve told my radiation oncologist to get on with it already snd give me the damn hormones and radiation! I’m at .14 after 4 1/2 yrs post surgery and it has slowly but steadily gone up. We all know why, right?
But the Drs at Sloan told me .2 is the absolute lowest they will consider before PSMA and all the rest. In fact, a PSMA may show nothing at .2 and even some higher levels.
The anxiety and the constant thoughts of them fiddling while Rome burned was driving me crazy. But after years of this suddenly I came to the realization that all my worry and monday morning quarterbacking didn’t amount to spit. They are the experts, they’ve treated thousands and thousands of cases….whatever will be….WILL BE. I go for my next PSA in two weeks with the ‘normal’ anxiety we all have but I am no longer afraid of the outcome. I’ll do whatever I have to. Very sorry to hear of your pudendal nerve issues - I had never heard of that as a pre-existing condition before RP - and we all know just how great surgery is to really exaggerate something.
I have always been a worrier and a pessimist - as are you probably - and recurrent cancer isn’t exactly a prescription for calm and a good night’s sleep; just take the advice of all the great people here: live every day and try to be positive. Best to you!!
AL