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1st LapCorp PSA .019 CRAP!

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Posted 1/24/2025 11:05 AM (GMT -5)
Dalota, you wrote quite a bit to/about me so I shall respond. First, please look at my most recent replies to Chris. I do strive to share my experiences for others to take or leave. I do not tell others what to do - or not to do.

You wrote this to Chris - "I’m not exactly sure what Nano is trying to do but he should reconsider making some of his comments before posting.". What I do is share my experiences. I put a fair amount of time in sharing. I put my name in my little bio and you can search me out. I do all this because I feel we face many disparities and much misinformation, because we men with prostate cancer are acceptable losses to our health care system.

What I would never do is write/say anything close to this statement - " You absolutely have nothing to worry about."

As a side note, minimizing my case as a "rarity" is interesting. I have metastatic prostate cancer - as do millions of men. My RP and salvage RT are very common. Although not common here in US, my salvage ePLND is not uncommon in Europe, where I went to have it and the imaging that identified my pelvic node cancer at 0.13. Had I instead listened to the good number of docs here in the US I consulted with, I would have likely gone on the now completed STAMPEDE trial, possibly with chemo. I do not yet know if I made a life-shortening decision with my ePLND - but so far I like how things are looking.

A second side-note. Your use of rarity and your overall comments have a distinct similarity to what I hear from some on another platform - HU. Are you a member there under another UserName? If so, you know I use the same UserName.

All the best to all of us fighting this beast.
Posted 1/24/2025 11:22 AM (GMT -5)
I think its important that we all respect each others very diverse experiences. I also think it's important not to minimize anyone's worry, whether another person considers it needless or otherwise. And finally, I think it's important to be aware of the tone of our comments and keep them civil, respectiful, and worthy of addressing a peer, not a child. So far that has been "for the most part in this thread" , the case
Hopefully we can keep it that way.

Consider this a preemptive attempt at keeping a very valuable conversation going, not directed at any one person in particular.
Posted 1/26/2025 12:34 PM (GMT -5)
Chris, you went to THEE Ohio State University, a center of excellence. They tell it like it is. You are undetectable. Always have been all these years. I hope to reach your record. L'chaim!! And as always, Go Bucks!
Posted 1/28/2025 8:53 PM (GMT -5)
Nano,

I see you had a liquid blood biopsy....what did it show. I have read about them.
Posted 1/28/2025 9:29 PM (GMT -5)

ChrisR said...
...
I went back to LapCorp and re-tested just to make sure it was not a lab error....24 hours later the test came back 0.021 up from .019 24 hours ago....I know it does not mean anything but wish it went done instead.
....

I haven't been following this thread, but skimming it earlier, my eyes landed on ChrisR's comment about Labcorp's uPSA test and thought I could add something to (perhaps) lessen some anxiety.

The ROCHE assay that Labcorp uses happened (fortuitously for us) to be chosen as the subject of a 2017 study in the journal Practical Laboratory Medicine that I've posted about in the Forum in the past:

The significance of reporting to the thousandths place: Figuring out the laboratory limitations

The ROCHE assay was run 20 times on the same known (exact) PSA concentration of 0.010 μg/L. The results ranged from 0.009 to 0.013. The S.D. was about 0.001, which means that about 98% of tests will yield a result within ±0.002 (2 S.D.) of their actual value if it is around 0.01 under ideal lab conditions. Note that only 5 of the 20 runs resulted in exactly 0.010. So it would be unremarkable if the sample you give tested 0.021 and 0.019 when run consecutively. (The other target concentration tested was 0.200 μg/L.)

When you consider in all the intrinsic (your body) factors and extrinsic (the assay) factors that make real life different from ideal lab conditions, you can see why it can take quite a few data points to determine that a PSA that is rising very slowly over the course of several years, as was the case for me.

For those of the Nerdish faith among you, the paper makes fascinating reading smile and ends with:

"Although the current report uses PSA as an example, the data presented serves as an important reminder that the laboratory must fully understand the characteristics of testing methods to ensure integrity of all results."

Djin
Posted 1/28/2025 11:08 PM (GMT -5)
Thanks for posting Djin. I figured the difference was within tolerance of the test.

So if I settle in the middle it is still 0.02 which is unsettling. I would think it should have been undetectable.

Given this is the first time I’ve ever been to LabCorp in 16 years who knows what this means at this point.

If my old lab had not switched to quest, I am sure I would still be <0.03 and moving on just as I have all the other years, but since it is detectable and I’ve had prostatectomy it’s obvious something is going on.
Posted 1/29/2025 6:34 AM (GMT -5)
Multiple tests are needed to confirm pattern. Several times over years I tested again, within a week or so. I saw these as affirming and not data points for pattern tracking.
Posted 1/29/2025 4:11 PM (GMT -5)
"....but since it is detectable and I’ve had prostatectomy it’s obvious something is going on."
Absolutely NOT true Chris. Are you or are you not <0.03 for 15 plus years? Are you or are you NOT still <0.03. I realize it has been many years since I was a math scholar but when did 0.019 and 0.021 get larger than 0.03? Please let me know if I am missing something.

Jim
Posted 1/29/2025 6:15 PM (GMT -5)
Jim, some of is post RP rely on <0.010 and lower and not 'undetectable'.

I realized <0.010 for two years then slow stable progression through .01X range, then 0.02X range, then 0.03X range for last 3.5 years.

Yes Chris has been very very low very stable for many years. However, more than anecdotal evidence this beast can and does roar back.
Posted 1/29/2025 8:15 PM (GMT -5)
Like many others before me this does look like recurrence...How can it be anything else when you don't have a prostate. However.......since my Labcorp test showed PSA and given my diagnosis of OC G6 that was re-confirmed 2 weeks ago by Johns Hopkins, I have combed through every single study and forum I could find for people with my same diagnosis. Maybe the studies don't go out 20-30 years.....I can't find a single person here or on any other forum that had OC G6 and is progressing to advanced disease. A couple have had SRT and a few have even had positive margins without progression and and couple have low but stable PSA. "gold horse" is holding at .04 for 20 years out. "pasayten" PSA has been slowly increasing for 17 years and a couple others with OC G6 had positive margins and are still either UD or holding a low PSA. Range 9-20 years.

I can't find a single study any where that OC G6 post ISUP 2005 any patient develope metastatic disease. Of the studies I found on this anyone who did were upgraded on review to higher Gleason scores. And in every study if an OC G6 had BCR they all were successfully treated with SRT. With the exception of "pasayten" above no BCR failures were seen after SRT. I don't know maybe someone here can find a study showing me where some of the patients with OC G6 died or progressed.

I am not saying I am not having recurrence.....but I can't find any study or any one anywhere or a person on any forum with advancing OC G6.....infact there aren't even any studies for G6 people getting HT and how they did compared to higher grade people....Does anyone know of a study done on HT that had G6 people in it? I can't find any. The studies I do see only talk about more advanced cases.

So, I'll bite.....maybe I am the 1st OC G6 to have lethal progression......anyone have any links to where this happens that contains post 2005 ISUP G6? If you do find one are the post-op pathologies confirmed as G6? Because in all the studies I found if it did metastasize every case was upgraded.

Here is what I read about OC G6......no metastatic disease in any of them.....
https://pubmed.ncbi.nlm.nih.gov/19683331/
https://bjui-journals.onlinelibrary.wiley.com/doi/10.1111/bju.12879
https://scholarworks.indianapolis.iu.edu/items/0c9a64e3-f283-478d-ac7c-cff6a05a9566
https://www.sciencedirect.com/science/article/abs/pii/S0090429513004408

Read what Epstein says about OC G6 in this study. If you’re going to listen to any doctor in this field, it would be him.
https://ascopost.com/issues/july-25-2018/when-can-patients-with-gleason-6-prostate-cancer-safely-undergo-active-surveillance/

https://www.sciencedirect.com/science/article/abs/pii/S0090429507023102

So, I don't know.....

Post Edited (ChrisR) : 1/29/2025 9:50:42 PM (GMT-5)

Posted 1/29/2025 9:07 PM (GMT -5)
Once cancer cells are detected in your prostate you will never get a seal of approval stating that you are unequivocally cured, meaning zero PCa cells in your body. We all live that knowledge, whether we have been undetectable for 1 year or for 20 years.

The source of the PSA really could only a couple things, as far I can see. It is either from grade 3 cells left behind (which is what I lean toward), or it’s from grade 4 cells that were left behind and/or travelled somewhere else in the body. Very highly doubtful grade 5 cells.

I couldn’t see where you may have listed the volume of your tumor, but my impression has always been the larger the tumor the better chance higher grade cells in the mix. It may just take one rogue cell to cause all kinds of problems. I also have been under the impression that 16 years is a long effing time for grade 4 or 5 cells to suddenly make a move — but I don’t know if that’s factual.

I can’t tell if you’re pursuing this out of concern, or if it has become academic for you.

No one can you that you’re in the clear, but maybe someone could say that you’re 98% in the clear. Isn’t that what the JH pathologist more or less said?
Posted 1/29/2025 9:20 PM (GMT -5)
Actually, I just updated the last article which was from Epstein at Johns Hopkins. Read what he says it has zero chance of metastasizing or causing death if it’s OC G6 at prostatectomy. Maybe he was exaggerating I don’t know.
Posted 1/29/2025 11:53 PM (GMT -5)
Yes, the general consensus of the experts is that G6 does not metastasize.
Posted 2/1/2025 1:43 PM (GMT -5)
Nano said: "However, more than anecdotal evidence this beast can and does roar back." I disagree. Chris has done all the research and found zero evidence of that for G6. Chris is unfortunately hyper worried about the miniscule chance at a recurrence all because he took a different PSA test. Why else would he say "Maybe I was given lip service at OSU". That's not what you get from a Center of Excellence. And then about Dr Epstein Chris says "Maybe he was exaggerating". I would like an answer to my prior post:

Are you or are you not <0.03 for 15 plus years? Are you or are you NOT still <0.03? I realize it has been many years since I was a math scholar but when did 0.019 and 0.021 get larger than 0.03? Please let me know if I am missing something.

Easy for me to say.
Posted 2/2/2025 4:55 PM (GMT -5)
All we have in science is consensus of experts. In science there are exactly zero sure things. That's just how it is.

Chris, the consensus of the best students of Prostate cancer, worldwide, is that 'true' G6 cancer does not metastasize. That's based on the best information from thousands of patients worldwide, with hundreds of doctors monitoring them. They are not blowing you off, to use your phrase. The understanding is that men who are diagnosed with G6 will appear with higher grades later on exist is because a new tumor appears.

Now, G6 can, and occasionally does, expand, grow, get larger. That's a known situation, and is usually why, in this day and age, that occasionally a G6 man on AS is given a recommendation for tumor reduction treatment.

Chris, as others are pointedly asking, and pointing out to you, you're getting some readings wandering around 0.015-0.020, and they (and the rest of us are wondering) why the panic? those values are ALL <0.030. No, it's not "undetectable". You have asked numerous experts, and consulted numerous publications that are all telling you the same thing: you don't have a problem TODAY. Prostate cancer is not going to kill you tomorrow, or even this year, or (most likely) for the next 10 years.

Be careful about mentally and emotionally going down this rathole. You're looking for certainty, you're looking for an answer that cannot be given. No one will give you the answer you want, there are no guarantees. All any of us can do, regardless of our treatment status, diagnosis, and prognosis, is to do our best to grasp the idea that we have minimal, if not truly zero control over it. And then find a way to accept that reality.
Posted 2/3/2025 12:54 AM (GMT -5)
Sometimes only time can cure us of our problems. Given enough time, it cures us of all of our problems.

ChrisR….I don’t see anything to suggest all of your problems will be cured anytime soon.

Hang in there buddy.
Posted 2/3/2025 9:16 AM (GMT -5)
Guys,

Thank you very much for all your responses and support. I do not want to appear ungrateful to anyone here offering advice and support. All of the responses here make rational sense and as you know when a person is in an irrational state it takes time for them to sink in. I know I am very lucky with my initial dx. and hope that others here with bigger challenges don't feel I am minimizing theirs. I have had an event free 16 years and I know how lucky that is.

Thanks again to everyone.....I will keep you guys updated.

Chris
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