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

@tom86 Well, perhaps it is true, statistically speaking that is is rare for a DRE to detect anything is PSA is <0.1. Clearly, my urologist (who was one of the tops in the Denver metro) never got tht memo. Actually, with one positive margin, he was always concerned about a recurrence after my RARP. He never did usPSA testing either, just the normal test. Of course, with usPSA testing, you can see trends developing at extremely low PSA, which is exactly the issue you are potentially facing. Sounds like the medical profession has swapped DRE anxiety for usPSA anxiety.

@melvinw
I reached out to Stanford University today in an effort to get a consult. A Oncology nurse called me back and I mentioned, "BTW, several men on the MAYO web site are claiming they have nodules detected via DRE post prostatectomy with no detectible PSA" She stated they do not do DRE on post prostatectomy patients and that is standard nationally for all major centers. Not done, period. No PSA, no nodule. Unless I am missing something, I do not understand how something this huge (based on some of the posts) can be overlooked. That takes care of the centers of excellence in CA as to their protocol. Not done, do not believe it is necessary.

@tom86 A DRE looks for swelling or abnormalities in the prostate gland; if there’s no gland to palpate, why do it?
@melvinw’s situation seems to be an outlier, but it prompted further treatment.
My first RO at Sloan did a DRE ( 5 yrs after surgery) and you would think he was searching for the Holy Grail - good God!!
When I told the second, younger RO about it he laughed and said they no longer did it - they now used PSMA PET.
I suspect Melvin’s nodule would have shown up on the PET but maybe not since some PCa types don’t produce a lot of PSA
Phil

Although I cannot provide ultra-sensitive PSA levels for the first couple of years after my radical prostatectomy, you might glean some insight. At age 62, I had RP in June 2020. Gleason 4+3 with 80% grade 4, pT3a, bladder neck involvement, positive margins, perineural invasion. My PSA tests were <0.1 for the next 2 years. At about the 2-year mark, PSA went to 0.1. Unfortunately, at about this time I was seriously injured, so PSA testing was on the back burner for about 10 months. Over about a 10-month period, my PSA jumped from 0.1 to 0.38. At a PSA level of 0.42, I had a PSMA-PET scan and was diagnosed with lymph node metastasis in the right pelvic wall. PSA got as high as 0.78 before Lupron treatment - two 3-month injections. PSA got to a low of .05. Lowest T Level was 139. Last PSA was May 2026 at .05. Looking back at my data, there were times 2 years post-RP that my PSA doubling rate was < 6 months - got as low as a 3.7-month doubling time. Wishing you the very best!

@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.

@tom86 A DRE looks for swelling or abnormalities in the prostate gland; if there’s no gland to palpate, why do it?
@melvinw’s situation seems to be an outlier, but it prompted further treatment.
My first RO at Sloan did a DRE ( 5 yrs after surgery) and you would think he was searching for the Holy Grail - good God!!
When I told the second, younger RO about it he laughed and said they no longer did it - they now used PSMA PET.
I suspect Melvin’s nodule would have shown up on the PET but maybe not since some PCa types don’t produce a lot of PSA
Phil

Nest week I get another PSA test. My 6 week one was .06. This next one will be 10 weeks later or 16 weeks total.
I was wondering, seems I heard that I shouldn't be working out lifting heavy things or doing my 3 mile walks days prior to PSA test. Like I said I lift weights several times a week and walk a lot. At the 6 weeks PSA test I was walking some, but no working out on weights as wasn't released to do that yet.
Anyway is it true, I shouldn't be working out on weights or 3 mile walks prior to PSA test? They are doiong lots of other blood workup, but know activity don't bother them, but have heard working out can falsely raise PSA?

@diverjer
Do you have a prostate or has it been removed? I would think if your psa is0.06 after RP that lifting weights may not be a concern? Maybe someone who knows more than me can weigh in?

Nest week I get another PSA test. My 6 week one was .06. This next one will be 10 weeks later or 16 weeks total.
I was wondering, seems I heard that I shouldn't be working out lifting heavy things or doing my 3 mile walks days prior to PSA test. Like I said I lift weights several times a week and walk a lot. At the 6 weeks PSA test I was walking some, but no working out on weights as wasn't released to do that yet.
Anyway is it true, I shouldn't be working out on weights or 3 mile walks prior to PSA test? They are doiong lots of other blood workup, but know activity don't bother them, but have heard working out can falsely raise PSA?