PSA Post surgery: What questions to ask medical oncologist?

@spino thank you for replying.

So based on your experience, would it be okay to wait for the PSA test all the way into March?

We do have an appointment with MO just shortly after the New Year. Maybe we should ask then to see what she thinks.

My partner is being seen at the City of Hope, Duarte. That’s where the PSA blood tests have been conducted so far post op.

It’s really hard to not want to test monthly to catch this bugger before he decides to make a harmful move while also trying to relax for the holidays. Like the urologist said to us the day we got the, “C” news. From that day onwards, it consumes my mind. I wonder if that ever wanes?

@spino

Somehow we have the same results using hospital lab and WalkInLab. If there was any discrepancy, that would be a different story BUT at the same time - one looks at a trend, not just random numbers. When one has very high risk cancer and ambiguous surgical results, one tends to rely on markers for seeing possible trends in the a wrong direction.

We are definitely not an exception, many people do monthly tests BTW and we do not plan to do it indefinitely - just for the first 6 mos.

But, everybody has their own approach to any illness - some people are more proactive, some like to chill and hope for the best and follow usual protocols - we did the later one and we regret it.

@sriddle1 If you test frequently, you will get a clearer picture of the random variations (which we tend to forget when we see a specific number,) but not a clearer picture of the long term trends. Once the baseline/nadir/lowest point is reached, the climb will take time--of course, hopefully years rather than months. One of the points researchers may consider is doubling rate, so if you test again halfway between your last test and March, you might get a clearer idea of the actual bottom if it was still declining last time as the PSA dissipated from your body after surgery but then starts growing again before March, but then if you test every three months you'll know within a couple rounds if it appears to be moving. After about three rounds you may begin to know how fast it might be moving.
Here's my actual results: • ultrasensitive PSA (series) after surgery 2/27/22 from 0.012 8/22, 0.016 11/22, 0.012 2/23, [exclude < 0.006 6/23,] 0.020 12/23, .016 4/24, .019 10/24, .021 3/25, 10/25 .023 ng/mL. You may notice I exclude one measurement as likely wrong. This is using the Roche assay from Labcorp. I think Quest Diagnostics, the other major testing lab in our area, uses a different assay with a 0.020 minimum. [If you want more on this you might try a google (AI) prompt: what are the different assays for ultrasensitive psa after radical prostatectomy.]
The first test after my RALP, about 4 months later was either intentionally or more likely accidentally prescribed not specifying ultrasensitive so I always check on this now. In my case, the result in 12/23 (21 months in) was most alarming, but since then my urologist has considered my PSA stable rather than increasing.
In addition to absolute levels, researchers and clinicians also consider doubling rates. However, until 4/24 all my results were multiples of .004, which led me to believe that might be the sensitivity in the bottom range of the test. In that case the reporting choices might be >.006, .008, .012, .016, ... and one tick every 3 months looks like a doubling rate of every 6 months, but now the doubling rate looks like more than every 3 years. My urologist is more optimistic than I am and just calls it "stable, " and he has since 12/23. So far he's been right and I hope he continues to be, but I am STILL skeptical. If I had to guess I now expect it to come back between 5 and 15 years, but of course I don't know. My pathology after surgery was bilateral Gleason 4+3 with a small positive margin.
If you are comparing just the two sets--my results and yours, you can see why I would hope you are still declining after surgery as your absolute results are several times higher than mine, but that really isn't diagnostic or good medicine. Let's pray that your results stabilize, or failing that, that your doubling rate is slow.
@surftohealth88 is doing monthly tests for the first 6 months. That should do a great job of pinpointing the nadir. Since watchful waiting and various targeted ablation strategies (like radiation) are now more common, I would assume the population that opts for RALP is more likely to have complications than when more less serious cancers were also being treated by RP, laproscopic, robotic, or open. The clinical reference charts including more data points are intended to give more detailed guidance as to what to expect, but just looking at uPSA, you could try a Google AI prompt like "what psa level after prostatectomy leads to further treatment".
But, as you might be able to tell, I like to prepare for the worst and hope for something better, and I'm not (this kind of) a clinician, so I've been learning all this since about where you are at in the timeline. (Before the surgery I was focused on making that decision, then on the immediate recovery and side effects, only later on what would come after. I found this forum a few months after my surgery.)

As others have said, clinical data from the pathology report may help the forum shape their answers.

The frequency of PSA tests? That's a discussion between you and your medical team.

The better question may be "what clinical data constitutes sufficiency to act, aka, make a treatment decision?"

Pathology report is one.
Others:
PSA tests
Decipher test
Genomic testing
Imaging
MSKCC Nomograms

With the USPSA tests we do get an indication of activity. If you and the MO are discussing adjuvant salvage radiation therapy then USPSA can provide that data to support a decision.

With the PSA tests you may want a trend vice single data points. So, discussion with your medical team may include frequency, the number of tests (three?) that constitute a trend and, or, what PSA triggers the treatment decision?

When will he face a treatment decision, what will it be...? There is not enough clinical data for this forum to weigh in and even if there was, we would be outside our lanes in saying so.

I'll close with this...you may not yet have the clinical data to inform a treatment decision. In your discussion with the MO, that should be hammered out and the plan to gather it. The other part of the discussion with your MO may be that what clinical data constitutes a need to act?

What treatment will he do, when, for how long...you will have choices, best made with the maximum amount of clinical data to inform the decision.

In the meantime while you go about the process, try and just live your lives. Hard to do, I know but statistically he may have some time before the next treatment decision and may have a number of years left living with and managing his prostate cancer.

I'm at 12 years, those have been 12 pretty good years. This despite the words from my urologist when I was diagnosed, "damn Kevin, that's a pretty aggressive cancer...!"

Kevin