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Typical Plan When Post RP PSA goes from < 0.02 to >= 0.02?
Prostate Cancer | Last Active: Feb 18 2:57pm | Replies (21)Comment receiving replies
I've read there can be multiple causes for ultrasensitive PSA fluctuations especially for those getting results to 3 decimals! But it seems accuracy better than 0.005 is questionable. From what I just read uPSAs are considered reliable to 0.01. So could mean a 0.015 could be anywhere in between 0.01 to 0.02. It's crazy to think the tests used to only go one decimal and still due for screen purposes. Boy, opting for 3 digit tests seems like a recipe for some serious anxiety. Which I can then see why many places consider "undetectable" as < 0.02. Giving numbers lower than that is splitting hairs in my opinion.
The problem is now I have to live in doubt until my next test. I think I'd prefer to go in a day later for another draw just to rule out lab error which is also a possible factor. That would give me chance of more peace of mind until the next test 3 months later (although someone told me when they hit 0.02 their doctor recommended going in in 2 months rather than 3).
My tests are free being on Platinum insurance plan.
Replies to "I've read there can be multiple causes for ultrasensitive PSA fluctuations especially for those getting results..."
Well, here is my 2 cents worth of input:
PSA/uPSA testing remains confusing to me in a couple of ways.
What I have seen in various sources:
After RP, undetectable has been identified as < .1
After radiation as primary tx, < .2 as a "goal". However PSA reading should go down over time until each man reaches a nadir, and then follow from there.
Focusing on RP only at 72 w/ G 9 and EPE; my initial PSA postop was .19 (confirmed. 18), resulting in immediate referral to Rad Onc.
Salvage radiation plus 4 mos short term ADT.
Blessedly 1st post salvage tx uPSA < .02 undetectable at Quest Labs, the lower limit of its testing accuracy.
Note: Johns Hopkins uPSA testing floor < .03
The difference, as well as lower testing floors, are a mystery to me.
And, a rad tx friend with a different Rad Onc was tested post salvage tx at JH using the std PSA and was reported as < .1 undetectable. Do not know why the different test used.
Generally: Salvage radiation tx post RP initiated at .2 - .4/.5 is the "sweet spot"
See SPPORT trial and PCI video on rising PSA following tx Jan 2023.
However some Rad Oncs initiate tx earlier.
Comment: salvage radiation tx w/ or w/o ADT should be covered by insurance under any scenario when Dr deems it medically necessary.
"Step therapy", such as a bone scan before a PSMA PET scan or denial of treatments still deemed "experimental " are insurance company issues/requirements.
While I am ruminating, Orgovyx is a prescription drug (my Part D Medicare drug plan covered it at a 25% coinsurance; reached catastrophic coverage stage after 4 scrips; the math eluded me).
Eligard/Lupron should be covered more comprehensively under Medicare Part B as injectable.
After 4 mos of Orgovyx, my side effects 95% gone; Testosterone at 1st post tx testing (about 5 mos after completion) had recovered to 274 (439 prior to tx).
And we are informed that PSMA PET Scan only 20 - 30 % reliable at PSA less than .2
I had PSMA PET Scan after RP and prior to Salvage tx which did not identify PCa, and in that situation, the belief is that cancer cells remain in the prostate bed and possibly the prostate lymph nodes (plns).
So radiation to the whole pelvic floor (WPRT) as well as plns prescribed and performed together w/ short course ADT.
So following initial tx decision between RP or Radiation, it appears that the next steps are more varied and Dr dependent.
All somewhat disconcerting.
End where I began: I do not understand the why's and wherefores of the different PSA tests and testing limitations.
May the New Year bring better health and happiness to all. And God bless us, everyone.
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
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I get it, there is anxiety on every degree of this circle.
My biochemical recurrence increased from 9 to 19 in 3 months so with my treatment the test is just whether it is less than 0.1 There is no reason in my situation to get additional significant digits, as there will always be a trace amount of PSA.
Get the test, do some research, enjoy life, repeat the enjoyment!