Don't have explanation - fine by me - Advanced Prostate...

Advanced Prostate Cancer

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Don't have explanation - fine by me

NanoMRI profile image
16 Replies

A year ago I shared my first post - "Holding very low stable usPSA - 0.03X range for six years; no ADT, no chemo".

Seven years now since my third treatment, salvage extended pelvic lymph node dissection using frozen section pathology method. My latest uPSA results, from last week to last September: 0.029; 0.0.28; 0.029; 0.031; 0.025. (Been doing frequent testing since my RP nine years ago, so I am quite familiar all the possible explanations and dislikes of uPSA testing).

What I find really interesting, is that two years ago I stepped up my strength training with great gains to date. And, last September, I began immunotherapy for Stage 4 Melanoma. Initially doublet Opdivo and Yervoy, now singlet Opdivo, Yes, not Keytruda, and yes, I know, both anecdotal.

None-the-less, most grateful I am NEAD for both cancers based on current comparative imaging methods and liquid blood biopsy testing. All the best to all of us!

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NanoMRI profile image
NanoMRI
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16 Replies
FlyJ profile image
FlyJ

Great news! Enjoy the peace of mind.

NanoMRI profile image
NanoMRI in reply toFlyJ

Thanks FlyJ!!! Peace of mind - priceless. Costs investigations, worth it! :)

SanOnofre profile image
SanOnofre

NanoMRI , question on your uPSA readings: How often do you receive an erroneous value? For example, I recently received a Quest reading psa 0.04 (previous ones have all been reported <0.04). So, the next day I tested at Labcorp, and they reported psa <0.006. I'm thinking maybe uPSA is more prone to lab errors, quality control?...

NanoMRI profile image
NanoMRI in reply toSanOnofre

You might disregard my opinion because in '76 or so I was one of the thousands that marched against San Onofre; that experience is one of my memorable early lessons in understanding the reality of disparities in scientific community, general misinformation and herd mentality.

My big ask about erroneous values, errors, QC etc is which value do we believe. The one we like? (Control room experience would be a great foundation to have in answering this question).

In my nearly 100 tests over years since early screening then Dx, in different labs with different assays crossing multiple US States and other countries, I have yet to experience an erroneous value or error with PSA testing, including ultra sensitive. I have learned to ascertain the lowest value the labs I use report to. One time, I was expecting repeatable <0.010 and got a 0.2. Came to find out that independent lab in the French countryside simply chose to not report below 0.2. My next tests, <0.010. Phew!!

I see in your bio you had <0.04 in '21, perhaps your reported RP nadir? Perhaps that lab does not report below <0.04. Perhaps one explanation for the 0.04 is that along the reporting pathway the < was simply dropped; maybe an admin error? If this were the cause then your readings are in alignment for <0.006 is indeed below <0.04.

But, let's say the 0.04 was not an error, in other words, the value fluctuated between <0.04 (0.039 for example) to 0.040. Although this slight change is acceptable to me, with changes in hydration being one explanation, these values are incompatible with <0.006. So, one has to be very wrong; but which one? I would retest both labs as soon as possible and ask the Quest lab what their lowest reportable value for the given assay is, including LoD - limit of detection; LoB - limit of blank; LoQ - loss of reliability.

I very much understand medical centers, docs and patients who blow off uPSA testing. I think the rational is irrational. IMO they simply do not want to deal with the questions that arise from these low numbers as it is so much easier to wait for 0.2 (or 0.1 for some) to declare 'recurrence' post RP. Given that I had six cancerous pelvic lymph nodes at 0.13 I believe cancer has to be present at much lower values; why I do not wait.

An interesting lab testing side-bar. Just now my latest LabCorp Covid anti-body test result has come in. I have been anti-body testing since late 2020 when Quest first offered this test. I had a tough week with Covid in February 2020 while in France. Later that year back home in Texas I got my first antibody test - positive for Covid antibodies. Today, no vaccine(s) along the way, still have antibodies. Are these from original infection or 100% unknown to me subsequent exposures that maintain/boost my immunity? (talk about controversies)

"SARS-CoV-2 Spike Ab Dilution 3645

Reference Interval: Negative<0.8, Unit: U/mL

SARS-CoV-2 Spike Ab Interp Result Notes Positive"

Thank you for indulging my pontification - this subject is very important to me and I am an uPSA nerd, if you will ;)

SanOnofre profile image
SanOnofre in reply toNanoMRI

Great information! Thank you, NanoMRI. The more I learn and understand, the greater sense of control I feel over this disease.

Don_1213 profile image
Don_1213 in reply toNanoMRI

I'll just comment - Quest once ran two PSA* tests on blood that was drawn during the same draw session. One vial after the other, then both off to the lab, same machine, same tech, same MD reading it, the same day.

The values were about 25% different (0.23 vs 0.17 IIRC) so - sh!t happens and the lesson should be - don't panic over one oddball value on a test. Get retested if it's important enough.

* = the reason for the two tests was - two physicans had the PSA test as part of a bigger battery of tests in each own's prescription, and apparently they couldn't be shared from one physician to another. Seemed really stupid to me - but that's how it was.

petabyte profile image
petabyte

🎉 Great result, congrats.

Your doctors should write this up in a case report and perhaps it will attract the interest of PCa researchers!

NanoMRI profile image
NanoMRI in reply topetabyte

Oh, how I wish! I find it so disheartening prostate cancer is seen as the 'good cancer' and we men with prostate cancer are seen as acceptable losses. Recently I learned melanoma cancer is often referred to as it just a 'skin cancer'. A few docs are following me and there is a new interest given my current process with Stage 4 melanoma.

j-o-h-n profile image
j-o-h-n

Just for info purposes: For my lung metastasis due to a melanoma.....Keytruda worked for me. (MSKcc).

Good Luck, Good Health and Good Humor.

j-o-h-n

Mgtd profile image
Mgtd

Would you clarify for me what an Ultra Sensitive PSA reading looks like when written out. I have seen PSA listed as 0.1, 0.01 or 0.001 for example . Does three digits designate ultra sensitive? Thanks

NanoMRI profile image
NanoMRI in reply toMgtd

the test report should so state, mine from LabCorp do. When I self-order I select ultrasensitive vs 'other' available tests. My ultra-sensitive report to the thousands.

Mgtd profile image
Mgtd in reply toNanoMRI

Thanks

Don717 profile image
Don717

Man that's excellent news!! Great to see success...and perhaps some due to your diligence?? Nice work.

NanoMRI profile image
NanoMRI in reply toDon717

Appreciate your kind words. This has taken some effort.

Tacho profile image
Tacho

Congrats as that is where we all want to be!

NanoMRI profile image
NanoMRI in reply toTacho

thank you Tacho - hoping it stays!

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