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I am worried about recurrence 16 years after RRP.
I had RRP in 2008 at Johns Hopkins by Dr. Partin. I was 42. My post-op was Gleason 6 totally contained with no adverse pathological features. All PSA have been < 0.03 This year my Dr. switched to Quest labs and my PSA came back at .04 I had a life insurance physical 8 years ago and they sent my blood work to Quest and I got the same reading. Quest has a history of not reporting the "Total, PSA" test as < 0.04 So, being paranoid as I am I went to LabCorp and got an ultra sensitive PSA. 1st one I have ever had and it came back as .021 I had Johns Hopkins pull my prostectomy slides and re-read them and they said I am still Gleason 6 or GG1 organ confined by today's standards and total confined to prostate. I am now in freak out mode because LabCorp test should be < .006 for undectectable. I was told by JH that GG1 has a 4/10% of recurrence and they don't believe reading below .03 are accurate.....yet LabCorp does it all the time....so I have BCR with a cancer that by today's grading does not have the ability to spread, yet it has in my opinion.
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crhoads, there is a new contrast agent since your RRP. Pylarify-- FDA approved in 2023. Its best function is in detecting recurrence locating metastasis of prostate cancer. Ask your urologist to order a PSMA/PET. Peace of mind and/or early detection. https://www.pylarify.com/
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1 ReactionYour results are “undetectable cancer”. Worrying about minor little changes in the under .0 results is a waste of time. Since you started out as a Gleason six, you probably will never see anything happen for the rest of your life.
Relax and forget about the great results you see, under .1 is Considered undetectable and you are way under that.
Being that you started off as a Gleeson six you probably shouldn’t have done anything and have gone on active surveillance for the rest of your life, that cancer may have never gone anywhere and your RP may have never been necessary.
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2 ReactionsI agree. The change is so small, you have little to worry about. A PET scan may give you extra peace of mind if you prefer.
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2 ReactionsAgree with all of the above and it is only considered recurrent or returning if your PSA is .2 or higher. That’s POINT TWO! Your is POINT ZERO TWO - 10X Lower than the threshold of having to worry….relax bro
Well, possible, likely, don't know.
Given your clinical data, I'd consider not hitting the panic button.
Some things you know - Gleason Score, Grade Group and Pathology Report, all pointing to low risk.
What you don't know:
Is there a continuous upward trend in your PSA, by that I mean say three or more PSA tests spaced possible three months apart, same lab, same assay, same pre-draw routine on your part.
Multiple PSA tests may confirm a trend vice a single data point which given different labs or simply unknown variations, may or may not be "actionable" clinical data. The multiple PSA tests may also give you more clinical data such as PSADT and PSAV. which can aid in decision making. General "rule of thumb for PSADT:
< 3-6 months - treat now
< 12-6 months - gray zone, look for other clinical data in decision making, say imaging.
> 12 months - possibly no treatment decision necessary, continue to monitor
You could image with Pylarify as https://connect.mayoclinic.org/member/00-4189785887e69e0c419260/ and https://connect.mayoclinic.org/member/00-7c172167b26ffb93350352/ say, but understand several things about that choice:
Depending on insurance, they may require the other CT and MRI scans first, or, deny based on the PSA level and detection rate. Then there is the question of if it comes back negative, what will the insurance do about covering subsequent ones?
At that PSA, it may not locate anything, then what?
I am not sure I would say "does not have the ability to spread...!" With micro-metastatic disease, even GG1 and GS6 prostate may have already been outside the prostate before your surgery. This is a very insidious cancer and there vare no absolutes...
There can be variations in PSA for which one's medical team has no explanation. When my medical team switched me to USPSA, I went from "undetectable" to .326, yikes! We retested in a month and it went down. Later it went up again and then mysteriously went down. It was not until 2023 when it went up three consecutive times using the same lab, same assay, same pre-draw routine, that it was time to image and then decide.
What would I do were I you, nothing yet. I would sort out the PSA testing, discuss with my medical team the frequency, same lab, same assay and I would follow the same pre-draw routine. Discuss with your medical team what clinical data would constitute sufficiency to start treatment - how many PSA tests and how far apart, what PSA do we image, with which one...
Meanwhile, enjoy life!
Kevin
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3 ReactionsThis sounds like a situation where the newer PSE test might be useful. It’s supposed to tell you if there is any cancer in your body. At least that’s my understanding.
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2 ReactionsThis poor man is OVER REACTING.
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1 ReactionI don't think so. Anyone with a history of a cancer diagnosis would be wary & on guard. Nothing wrong with that.
The good news is that prostate cancer is one of the slowest-going cancers, so not much to panic about.
But reassurance is always good.
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4 ReactionsRead JeffMarc response....hes the most knowledgeable guy on this forum since you dont believe me.
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1 ReactionI think all of us here will always have our antennae up for any - ANY- change in our PSA’s, PSE’s, scans, etc.
That is probably cancer’s greatest curse: that no matter how “in the clear” you might be, you will always be waiting for this to slowly sneak up on you once again.
@crhoads is in such an enviable position compared to many on the forum, yet he’s sweating bullets over micro - no sorry, NANO milliliter concentrations in his PSA. It’s just the nature of the beast…