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Rising PSA's after treatment - an answer
Prostate Cancer | Last Active: Jan 11 8:59am | Replies (31)Comment receiving replies
The comments on this thread all resonate with me.
1 - Tx: Having had BCR at 1st postop PSA of .19, I was "spared" some of the wait & worry because I was directed to the Rad Onc and salvage radiation together with 4 mos ADT.
Post salvage tx PSA in Nov undetectable at < .02.
Now, I wait and worry for the 2d post salvage PSA in Feb. And wait, and wait (as in Casablanca).
2 - emotional: If PSA remains undetectable for a period of years (as predicted by the optimistic Rad Onc), I will be very, very happy; but will continue to live with the dread of the "knock on the door" of recurrence.
And people do not understand the foreboding. I am a positive person, but when almost certain recurrence is in your future with G 9 and EPE, that knowledge or expectation is always present.
And yes, friends and family think removal/treatment = cure. And if I have "the big one, Alice", before recurrence, then effectively they would be correct. If not...
3 - protocols: Clearly unclear.
SPPORT trial suggests salvage radiation to the whole prostate area and pelvic lymph nodes together with ADT has good outcomes (Kevin, you were correct and ahead of the curve).
Salvage tx sweet spot of .2 to .4/.5 has been trending lower.
The belief (aah, that word again) that PCa remains in the prostate bed/lymph nodes in the absence of PSMA PET identification at low levels of PSA was the basis of salvage tx for me. Hopes and prayers 🙏 for all of us is all that I can conclude. And may treatment breakthroughs be on the horizon.
4 - PSA monitoring post salvage tx: Regular PSA testing with a < .1 sensitivity may make some practical sense. I am receiving uPSA testing, however 2 of my tx buddies, each with a different Rad Onc, are testing with regular PSA tests.
And when my PSA rises above .02 and is detectable, but less than .1, what will that accomplish other than worry me? Because unless we are going to treat below .1 ...?
A 3rd RP friend (no BCR in over 3 yrs) is freaking out because his PSA went from .00something to still .00something higher (you get the point).
And yes, it does feel comforting to communicate these thoughts, concerns and fears with brothers in arms in this battle.
Best to all.
Replies to "The comments on this thread all resonate with me. 1 - Tx: Having had BCR at..."
"A 3rd RP friend (no BCR in over 3 yrs) is freaking out because his PSA went from .00something to still .00something higher (you get the point)."
It still baffles me any clinic would give patients their results to three decimals in any scenario. It's useless based on all the data to date and only creates unnecessary anxiety. There are some studies that show 0.01 and 0.015 were predictive but even 0.02 was not more than 75% accurate at best. Even if say two readings at or above 0.015 was confirmation of BCR, I doubt there's a single Urologist, Radiologist or Oncologist in the world that would recommend any treatment at that PSA level unless the doubling time was say, 4 months or less. Seems no one these days believe there's any advantage to doing SRT prior to 0.05. So there's no point of it no matter how you look at it. It's only detrimental to the patient psychologically.
When my result went from < 0.02 to 0.02 and I reached out to local small city Urology clinic about it, they were like that's a GREAT PSA you have nothing to worry about. Ya maybe relative to your patients about to go on Lupron with a PSA of 5. And even a gal at UCSF said, some labs don't use the < sign. Well if my lab changed their practice, they should have told me. Both naive responses in my opinion. Yes, I know it's no confirmation of BCR at this point but should I be testing in 2 month instead of 3 month intervals now? They both said "just keep monitoring" with no other information. (For uPSA, I doubt it since it didn't jump to 0.03 or 0.04)
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Haha, I'm just trying not to be that 3rd RP friend in #4 who is freaking out--and get ready for each day as it comes.