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Bad News after PSA.1

Posted by bigtoe @bigtoe, 1 day ago

Had proton radiation of the prostate 2 years ago just after my 67 birthday at Mayo Rochester and was really happy with it, really no side effects. Last PSA test a month ago .1 great news I thought. Had a pelvic MRI for some pain in rectum after having 3 inner hemorrhoids taking care of which turned out was not the cause of the pain. MRI was sent to Mayo than came the call, they suspect a form of aggressive prostate cancer, possible small cell (deadly) which by the way doesn't raise your psa. Off to mayo next week for biopsy,pett scan to see how much it has spread and what form of aggressive cancer it is.

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mjp0512 | @mjp0512 | 1 day ago

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

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Too-Many | @toomany | 1 day ago

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.

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heavyphil | @heavyphil | 1 hour ago
In reply to @toomany "Well, I too, am deeply sorry to hear of this most recent development for you, and..." + (show)
Profile picture for Too-Many @toomany

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.

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@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

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