← Return to Post Prostatectomy 6 years. PSA <.01 until now. Anyone else ?

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@heavyphil Ha, everything about my situation seems to be an outlier.

My nodule indeed showed up on a PET scan, and with an SUVmax of 13.3, even though my PSA was 0.11

But also, when my PSA hit 0.11 after ten years of being undetectable, my new urologist didn’t even want to restest. He fobbed it off as “lab variance” and said come back in a year. Of course, he didn’t have all my medical records at the time (or didn’t bother looking to see that I had a nodule). I talked to my PCP the next day and he immediately ordered a PSA retest, which came back at 0.12 (so much for "lab variance"). Then I messaged the urologist, told him about the restest and sent my medical report from two years prior that showed a 1-cm nodule detected during a DRE. At that point, it became a 5-alarm fire. He immediately ordered a PET scan and referred me to a colleage in his group that specialized in advance prostate cancer. AND insurance approved the PET scan.

So, let’s say the nodule had not been detected by a DRE when my PSA hit 0.11. Would the urologist have done a DRE then? Without DRE evidence of a nodule, would any doctor order a PET scan when PSA was only 0.11, and would insurance approve? Probably not, on all counts. But sometimes the hoof beats do turn out to be zebras.

After the PET scan, I got opinions from three oncologists about treatment. The second one (an MO) wanted to hit me with three different hormone drugs before starting radiation therapy. So, I went from a urologist responding to my 0.11 PSA with “meh, see you in a year” to an oncologist wanting to start WWIII in my body, all within a fewe weeks.

And to top off the whole outlier nature of my situation, I switched to usPSA testing from Labcorp just before starting IMRT (no ADT). It yielded 0. 097 (i.e, “undectable" in the good ol days). But at that point both PET and MRI scans had confirmed the local recurrence.

This whole relapse episode has re-affirmed a couple things: You gotta be your own advocate--sometimes you need to push forward, and sometimes you need to push back. And sometimes a finger up the butt saves the day.

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Replies to "@heavyphil Ha, everything about my situation seems to be an outlier. My nodule indeed showed up..."

@melvinw
A urologist is good for initial treatment for prostate cancer and maybe doing the surgery, after that you need to go to a different doctor because they are not competent to treat advanced cases and reoccurrences after a prostatectomy. He should’ve referred you right away to a different doctor, Preferably an oncologist that specializes in prostate cancer. Telling you to come back in a year, sure is dumb, Were you not supposed to get another PSA test for a year? We have heard from so many people that have been under treated by their urologist.

I have never heard of three different hormone drugs used at once, Do you mean they mentioned three different ones you could pick from?

I know you had radiation, but was that after your PSA rose higher than .11, You don’t ever seem to mention that.