Bad News after PSA.1

These kinds of phone calls really suck. Wishing you the best and that their WAG is just that and wrong. 👍

Well, I too, am deeply sorry to hear of this most recent development for you, and as always, I want to underscore that I am no doctor, so nothing I say here should be taken as 'gospel' or as a medical recommendation of any kind, but I know that if this were me, I would run (not walk) for second opinions on all of it, including a PSMA-PET scan if you've not had one yet.

If you underwent previous proton treatments, then presumably, you've had a biopsy long ago, and if so, wasn't there a Gleason score or Decipher test done at that time? I guess what I'm saying in summary is, that these many 'conclusions' that these various folks including Mayo have apparently given you (i.e., that your rectal pain was not from hemorrhoids, that its prostate cancer and an "aggressive" form of it at-that, and that none of it "raises your PSA"), should all be closely scrutinized and evaluated elsewhere. But that's just my 2-cents.

I'll hope that much (if not all!) of it, proves to be off-base, but either way, I wish you the very best. These are not easy episodes in our lives to deal with.

@toomany Well you took the words right out of my mouth! HOW was this not detected even BEFORE the proton radiation?
Did they miss this area aggressive area completely?
I can understand if this was done 10 yrs ago, but only 2? And at Mayo? Something isn’t right, that’s for damn sure…
Let’s hope it’s just another lousy, completely erroneous AI interpretation
of your results.
Phil

@heavyphil

Sorry you had to get a phone call like this. This damn sneaky disease is so unpredictable. You get a great PSA after 2 yrs and then this type of bad news. Just sucks! Also sucks that they would tell you over the phone that it's "deadly". That just isn't right.
Like the other poster asked what was you stats when treated 2 yrs ago, Gleason, MRI, PSMA, etc?
Wishing you the best.

I know makes no sense to me, still in shock because of my .1 psa test. I feel great worked out 3 to 4 times a week. Just in the last month I stopped the weights because I thought it was bothering my hemorrhoids.
I just remember years ago the Dr saying the good news is your not going to die from prostate cancer.
Never was told about the aggressive prostate cancer that doesn't raise your PSA. I attached a couple of articles I found on the subject.
I'll know more next week.

Thanks for the hugs!!!!
Jim

@copyman

Three spots
Gleason 3+4
4÷3 and 4+3
Pet scan looked good, no sign of cancer outside of prostate.
Note: I had only 5 radiation treatments.

Again, I don't know that I'd trust much of what you've told so far, but the one thing that is most baffling to me, is that if it is in-fact true, that there can be prostate cancer cells that do NOT have the PSMA surface protein (which I've not yet heard-of), then that would mean that a highly-specific and diagnostic prostate cancer imaging scan, like the PSMA-PET, would be utterly useless, since it would yield an 'untrue', false negative result. THAT, is what's scary to me! In fact, if true, it would seem to turn the whole equation of diagnosing and treating prostate cancer, upside-down. So second- and third-opinions, period! That's where I'd be heading, post-haste, and not from anyone at Mayo. Hopefully, that's what you're doing.

The very best of luck to you on this, and please keep us informed as you learn more.

@toomany