They say "Don't be concerned yet", I hear "Oh, crap"

[Cackalacky_cyclist]

Treatments thus far in my bio, but summary is RP in April 2019 (pT2N0M0) and then 6 month Lupron & salvage radiation to prostate bed January 2023. PSA <0.01 in January as expected with T=23, April showed T=176 (low normal), PSA < 0.01, and now in July T=281, PSA = 0.02.

My RO stated "...while that PSA number is not perfect (undetectable), it is not out of the ordinary. PSA is an 'imperfect test', and your next check in 3 months could well be undetectable; we have seen that happen. You should not be concerned at this time."

I want to not be concerned and I do trust my care team, but color me a perfectionist; it has been my understanding that any PSA after an RP is not the best news, though it may also be non-treatable news as well in that "it's a data point, more data is needed to determine if treatment changes are warranted". I do know that my current numbers fit that description.

My question to y'all is this: I understand anecdotally that PSA fluctuations occur (n=1, everyone is different and all that), but are there any studies that indicate PSA measurement variability after RP & salvage radiation where "PSA bumps" occur and PSA eventually goes back to undetectable? A follow-on question is what variability exists for the PSA test, really? (I've only ever used the same lab - Duke U.)

[Tony666]

I agree with your doctor. Your psa at 0.02 remains in the “undetectable” range and at those teensy numbers are highly suspect and uncertain. Chi lax. Enjoy your good situation.

[Tall_Allen]

If you are determined to drive yourself crazy, you can always find a reason. I practice mindfulness so that I don't do what you are doing to yourself.

[Cackalacky_cyclist in reply to Tall_Allen]

Tall_Allen , I’ve always told myself I also practice mindfulness, but obviously I have work to do. Thanks for pointing out I’m off the path

[Tall_Allen in reply to Cackalacky_cyclist]

I think it's called practice because it's always something that needs to be worked on.

[Cactus297 in reply to Tall_Allen]

I guess that means me right now too. My son’s going back to UCSD for his 6 mo PSA after 6 weeks of IMRT. His PSA was 20 after an October 24 RP surgery. He’s also taking generic Zytiga , prednisone and Lupron. His first three months check up after the IMRT was .07. Even with trying to practice mindfulness, I feel😵‍💫.

But I’m so grateful that he’s going back to UCSD and not to the Phoenix Mayo where he’ll be transferring to because they’ll be using the same lab and not having to change midstream.

[Justfor_]

Measurements primer:

1) Advertised intralab PSA test variance (typically) less than 20%.

2) For 2 decimal places reporting labs, like yours, the quantisation or rounding error becomes less than 1) beyond 0.06. (0.05 can be anything from 0.045 to 0.054 rounded - not decimated - to less decimal places, hence 0.01/0.05=20%).

Bottom line: If you want to make no- nonsense calculations wait until you get over 0.06 and allow a 30% change to detect a confirmed PSA rise. Alternatively, start from scratch using a lab that reports to the 3rd decimal place.

[Cackalacky_cyclist in reply to Justfor_]

Thanks Justfor_ , that’s what I was looking for.

[GoBucks]

Go get some ice cream. Yum.

[cesces]

That likely means you still have some prostate cells.

Which may or may not represent some microscopic metastasis.

I would start doing monthly PSA testing, then move to quarterly if you fail to see any trends.

[RS265]

TA nailed it. Go enjoy life and see where you are at in 3 months as nothing meanwhile can change your world. I drove my Uro and RO nuts at this point for no good reason. 😀

[maley2711]

You trust your care team.....but you are second-guessing them????? Then you don't trust them.....only one can be true. Any reason you haven't simply asked your care team for a quick explanation of when the PSA numbers would indicate a treatment revision?

Did you ask the lab about their claimed accuracy....in other words 0.02 +/- ???

[Cackalacky_cyclist in reply to maley2711]

I can see how you might think that based on the limited context I supplied. While the dichotomy may appear to exist, I assure you it does not. My question was framed towards the test result, and how it could be interpreted as undetectable. My care team told me everything being said on this thread, I was just too pigheaded to hear it after hearing what I did not want to hear. Also, we did cover the future “what ifs” relative to PSA cutoffs - nothing to do until I hit 1.0, approximately..

[Justfor_ in reply to Cackalacky_cyclist]

Typo alert! " nothing to do until you hit 0.1 (NOT 1.0) approximately". Are you dyslexic by any chance?

[Cackalacky_cyclist in reply to Justfor_]

Always 😉

[maley2711 in reply to Cackalacky_cyclist]

Congrats on your selection of Docs ! Some will argue the PSA breakpoint for considering additional tests, treatments, etc. 0.1 seems very low as a breakpoint...studies to show that??

[Justfor_ in reply to maley2711]

You can have this link for starters:

ncbi.nlm.nih.gov/pmc/articl...

accompanied by the following reasoning:

The "don't do anything until PSA >1.0" is a well known "magic" number, BUT, a) is old school (before the advent of the PSMA PET/CT imaging) and more importantly, b) applicable to patients that had RT as a primary treatment having their prostate in place. The OP has had RP and then early sRT when his PSA rose to 0.12, indicative of his cautiousness. If his PSA keeps rising, which I wish him not to, the next thing to do is PSMA PET/CT imaging. This makes sense above min PSA=0.1 or, as I read here, 0.2 for insurance coverage, which IMO shall be the ultimate wait-and-see PSA limit.

From the link that I posted above it is evident that the probability of distant metastases follows PSA. OP has had early sRT only in the prostate fossa, thus opening a window of opportunity to have additional irradiation in the pelvic field in the case any lymph node lights up during the PSMA scan. I can't picture him waiting until PSA >1.0 only to be informed that he has got distant metastases...

[maley2711 in reply to Justfor_]

Who is arguing for any particular PSA breakpoint? I didn't. There are many factors that are in play......one of biggest that few if any determinative studies of benefit of detection at ultra-low PSA using PSMA PET. i am not taking a position one way or the other...I do know that, unfortunately, billing for PSMA PET is significant.....in my case, total billing for tracer and the scan labor and equipment was $12k.

Anyway, thanks for that study/review.

[Jp2sea]

Your understandably nervous, and your suspicion might be true that the psa is not zero. The scan-xiety really sucks, but in reality, there is nothing to be done now except enjoy the time you have. Try to put this result in the back of your mind and focus on the priority that we should all have -- to celebrate life while we have it. Aim to do something new and exciting as often as possible with friends and family. Carpe Diem!

[RMontana]

…you can check other resources and references but your PSA is undetectable. I am not sure where your doctor is finding otherwise. Your PSA is very low. In fact, you may want to ask for ultra low PSA tests at this point. This would give you PSA numbers down in the three digits. There is plenty of documentation to show that following your uPSA levels can be predictive off bio chemical failure by 12 to 14 months. Most Doctors do not agree, but I find that the documentation and/or studies are conclusive.

healthunlocked.com/active-s...

healthunlocked.com/active-s...

And PSA doubling time is much more important than PSA numbers. Here are some references and articles that I found. Right now from my vantage point you are in good shape. I only wish I had your outcomes in pathology. It looks very good to me.

healthunlocked.com/active-s...

…you have been very aggressive with your treatment given your pathology. You have also been very fortunate to have your testosterone bounce back so quickly, now don’t forget about erectile dysfunction. If your doctors have not counseled you, you will suffer damage to your penile tissue due to the fact that you no longer have nocturnal erections; over time (the next year) your penis will atrophy both in length and girth. No one told me this. I waited 2 1/2 years as I was told that my natural function could return. I don’t think that was advisable. Keep an eye on this aspect of your overall recovery. Don’t wait too long to take some type of action. If PD5 inhibitors work, take them. If not use a vacuum pump or injections. But you’ve got to keep oxygen flowing through your penis or it will atrophy.

If you want more information on this, let me know. I just add this because we are generally not counseled on ED and the impacts that surgery and ADT have. I hope you were. Take care. Rick.

[jmarsh]

My path seems similar to yours except I'm RP in 12/21 and ADT began 6/22 , then 33 radiation treatments to follow. Still on ADT until 6/24. My PSA is still at 0.0 but always a little bit of anxiety each time I get a test. I am also at Duke. My MO is Armstrong and RO was Lee. What about you?

[Cackalacky_cyclist in reply to jmarsh]

RO is Lee and my MO is Labriola, so far both are very good at what they do.

[jmarsh in reply to Cackalacky_cyclist]

I totally understand the worry, even if some say you’re overthinking. You want to be cured and put all of this behind you. So do I!

[CountryJoe]

With so many things to worry about in this life, I just cant understand being concerns about a PSA of .02. Forgive me.

[j-o-h-n]

No wonder you're Cackalacky.....

Good Luck, Good Health and Good Humor.

j-o-h-n Tuesday 07/25/2023 7:00 PM DST