"Undetectable"

[Cyclingrealtor]

We hear the term of "undetectable" with a psa of < .1 used so often.

When I was first diagnosed and had an RALP I bought into the use of this theory. As the months clicked by and I was "undetectable" I was slowly gaining confidence and reassurance that this was true.

Eight months later a .1 shattered my confidence and trust with using this theory. Obviously I didn't understand that it's just clinically accepted reference point. It has nothing to do with your whole disease state. Within nine weeks I was at .4 and the EBRT and adt treatment unfolded.

After this experience I became a huge believer in the benefit of usPSA testing. While most docs won't treat until a .1, knowing early gives the patient time to research the next best treatment.

While the psa threshold is a decent biomarker after treatment it should be followed up with imaging and blood/liquid biopsies.

Here's what a research doc at UC Davis shared with me:

We are indeed using serial liquid biopsies at UC Davis to monitor the growth/progression of prostate cancer over time. We frequently see the circulating tumor DNA rise before the PSA increases, sometimes by several months.

Sometimes, prostate cancer changes and stops producing PSA completely. Then, serum PSA is no longer a good marker of cancer growth, but the serial liquid biopsy remains a good marker.

Whether screening or following treatment progress it's evident that multiple tools help get ahead of the disease the best we can.

[treedown]

I always thought that the preferred/undetectable level of PSA was much lower than.1 with a RALP. I thought <.1 was used after radiation. Perhaps I have that wrong. My insurance company sticks exactly to NCCN guidelines and does not approve anything outside of what it states. So no options for procedures for earlier detection unless I want to pay out of pocket, which I have had no need to do so far. Those who can have as many PSMA scans as they want clearly have my better insurance. I will be on Medicare in a few more years so maybe that will open up options if I make it that long.

[6357axbz]

Are the blood/liquid biopsies reliable? Is it just a simple blood test. Is it proven by a three phase clinical trial?

[NanoMRI in reply to 6357axbz]

FDA approved, medicare covered. Looks of web info on GUARDANT360 and Foundation One. I have had two GUARDANT360; last years was clear, this years identified TP53 mutation and Pylarify PSMA identified 2.3 x 2 cm hypotenuse liver lesion at uPSA 0.03X. Prior two PSMAs were 'clear'.

[6357axbz in reply to NanoMRI]

So the liquid biopsies didn’t show anything that the PSMA scans did

[NanoMRI in reply to 6357axbz]

they are very different investigative tools. My blood biospy identified circulating DNA mutations. The Pylarify indicates a cyst on my liver; at uPSA 0.033.

[6357axbz in reply to NanoMRI]

so what benefit were the liquid biopsies? The only test that positively identifies cancer is the psma?

[NanoMRI in reply to 6357axbz]

Biopsies confirm cancer, I do not believe we are there yet with prostate cancer imaging. Not following your line of questioning - there are many on-line sources with far more helpful information than I can offer.

[Cyclingrealtor in reply to 6357axbz]

PSMA pet scans have varying efficacy based on the cells being psma avid and to your overall level of psa and the ability of the imaging.

When you look at the reporting on psma testing they have a range of the chances of picking up metastasis.

Then you look at why some insurers won't pay for a psma pet based on a psa level of x. They know the higher the psa the better the chance of finding something based on the efficacy of the tracer and the ability of the scanner.

Using different diagnostic tools at lower levels help clarify what's most likely going on and open the door for more insight and investigation.

[street-air]

here is my string of undetectables post RP with gleason 9 so far. As I could sprout wings and fly more easily than get circulating tumor dna tested regularly, it has to do as a substitute.

psa

[NanoMRI in reply to street-air]

I did not begin scheduled imaging nor blood biopsy testing until my uPSA rose from <0.010 into 0.03X range. I do self-pay at times because well ahead of common practice.

[street-air in reply to NanoMRI]

that makes sense. The process here of arranging a blood draw to be sent to the right lab with the cooperation of primary doc, approval of urologist, makes my head hurt but probably with some dedication on the phone I could do it. Will put the idea in my in-case-of-rise list.

[goodmaann]

What is undetectable? For a long time it was <0.1 Along came ultra sensitive PSA. Then it is <0.003. But what does it mean in practice? Or clinically? FDA appears to stay with achieving <0.1 within 6 months, (except for radiation) good result. Is there any contrarian theory?

[NanoMRI in reply to goodmaann]

To answer your question, how about contrarian actual experience over theory?

IMO 'undetectable' is a dangerously misleading term. I have never seen this word on a single lab report - it seems to be a construct of the medical community embraced by many patients.Over ten years ago, prior to my RP, I chose to rely <0.010 as best indicator. In reverse chronological order:

As shared, just last month my Pylarify PSMA, done at 0.033, identified a 2.3 x 2 cm liver lesion "concerning for metastatic disease (of uncertain origin)". Concurrent Guardant360 liquid biopsy identified TP53 gene mutation; may or may not be PCa - biopsy coming up. (Last years Pylarify and GUARDANT, done in same 0.03X range, were clear).

As I also share, at 0.11 I had six cancerous pelvic lymph nodes, including common iliac and para-aortic removed by salvage pelvic lymph node surgery (3rd treatment). How could the cancer not have been present and growing at lower values?

My salvage RT to prostate bed (2nd treatment) was done at 0.11, with nadir of 0.075. Obviously, my cancer had spread beyond the prostate bed. Confirmed by salvage ePLND a year later. (What if I done my salvage RT sooner - might all the cancer have been within the radiation field?).

My RP had a nadir of 0.050 - we knew cancer remained because we chose to rely on <0.010 as best indicator.

In clinical practice, these lower values identify remaining cancer sooner than <0.1, giving men opportunity to make decisions sooner, depriving this beast of time and obscurity.

[Pjford in reply to NanoMRI]

I’m at 0.11 after four 6 months , previously 31. Is that a good number ?

[NanoMRI in reply to Pjford]

As just a patient, I am always hesitant to offer advice or 'diagnose'. As I gave up my prostate, and per you bio you still have one, seems to me <0.01 is less applicable (excluding use ADT). For each of my three treatments and my year on ADT my medical team and I set a PSA objective each time.

0.11 is an excellent reduction from 31 - but I would be asking why it is not <0.01 (the value I rely on as best indictor). Hope this helps. All the best!

[Rickmartin1948]

Your info is really interesting thank you

In many countries undetectable is <.008

[Cyclingrealtor in reply to Rickmartin1948]

Thanks for sharing. That makes more sense than a .1 threshold.

From my observations the thousandths spot .xxX seems to either be that much more sensitive or possibly affected by testing "noise" of the equipment.

And with what we see in the numerous stories and what the UCD doc shared, it would be awesome to see "undetectable" reference dropped. Recurrence happens frequently with men who hit a < .1.

[gsun in reply to Rickmartin1948]

that is the number used in Vancouver, Canada.

[Grandpa4]

you really think your Doctor would delay a diagnosis so you can’t review the options. You should get a new one. As a physician I have met some pretty bad ones over the years but nothing that evil. What about saying that earlier diagnosis just hasn’t been shown to make a difference in the outcome. Giving people an extra 3-12 months of high quality life off meds might be better than aggressive therapy. Occasionally you might find people with really slowly growing cancers that can go years.

[Cyclingrealtor in reply to Grandpa4]

It was doctors who are "experts in disease prevention" at the USPSTF who made the recommendation to "not use psa testing for screening men of all ages".

It was those doctors who made NO exceptions for protecting known high risk populations (AA and family history).

We hear at PCRI and others on this forum trashing urologist frequently. "All they want to do is get you on the table as soon as possible because they make A LOT of money from surgery". Like oncologists and medical oncologists work for free?

While the outcome may be similar I believe it should be a shared decision to attack aggressively or passively. The patient lives with the quality of information and care provided by the medical community.

I have high respect for docs like a high school friend who said that he orders a psa test for every patient age 45 - 75 after discussion. This is well outside of USPSTF recommendations. He's a doctor with a brain who's not bowing down to healthcare and company policies.

My healthcare provider told me at 53 I was too young to consider screening. A neighbor has the same provider and was told at 70 psa testing is not recommended at all for his age. These are doctors making these statements.

So I believe in patient advocacy and self advocacy. Doctors are not all cut from the same cloth!

[Grandpa4 in reply to Cyclingrealtor]

I think we all agree the doctors made the wrong decision about PSA testing especially in those with family history of PSA. However when you look at the data PSA testing was not saving many lives and it was causing a lot of harm. The MRI has really added a lot as has PSA density but the decision was made thinking they were doing the right thing. I also agree not all doctors are equally skilled but you were implying they are evil. That they would purposely delay a diagnosis so you would not have time to look at options. I have never seen a doctor do something like that.

[Cyclingrealtor in reply to Grandpa4]

The "over treatment" theory was not proven!

The 2018 USPSTF looked to try and find empirical evidence to prove "over treatment" but they could not. It could be as low as 5% or as high as 40% according to their research. There was no way to achieve empirical evidence.

As far as "over treatment" why isn't there massive class action lawsuits? They could go back to the patient with overwhelming evidence and support by the "over treatment" wonks to prove their case.

If the USPSTF & Industrialized Healthcare Complex know "indolent or low grade cancer" so well why do we not have the perfect system to detect and treat only clinically significant disease and prevent over treatment?

This over treatment theory is just a way to attack the achilles heel of treating all cancer and because prostate cancer did not have an A, B, C, or D grade at the time of the ACA control of primary care recommendations.

After 5 years about 40% and at 10 years about a combined 60% of men on AS will need an intervention of active treatment according to expert Dr Ted Schafer.

AS is also a proposal that was pitched to the 2012 USPSTF by the true experts, urologists and oncologists, but it was shot down.

The goal of the USPSTF was to stop a population based screening recommendation for prostate cancer like women are afforded with pap smears and mammograms.

The ACA was put in place to guarantee revenue for the IHC, provide legal mitigation, and implement the "evidence based" era of health care, and give power to the USPSTF to be the gatekeepers to specialty care. There's a massive shift towards creating corporate medicine under the guise of healthcare policy, evidence based medicine, and "best practices".

As far as docs, I have friends who are docs and are great people as is the neurosurgical group my Mom has worked at for the last 38 years.

With these connections I have seen the massive shift that has been taking place over the last 2 - 3 decades for doctors. Maintaining private practice is benn getting squeezed tighter and tighter. Many docs have become nothing more than an employee of massive corporations.

[Grandpa4 in reply to Cyclingrealtor]

I agree with everything mostly. I never used the term over treatment. At the time doctors were pursuing a high PSA with every technique they had. The result was a lot on infertile men and not much to show for it. They decided looking at the data it wasn’t worth it. I totally disagree with this and they have reversed their decision on this approach but it was carefully thought out at the time. The MRI and guided biopsies has made this a better approach. I had my PSA checked every year and I now have metastatic prostate cancer. My PSA was 2.9. It is not a great test.

[NanoMRI in reply to Grandpa4]

I learned of multiparametric MRI and guided biopsies ten years ago in London, England, where I was living and working at the time. My US urologist had never mentioned mpMRI to me despite my 'high' PSA. I also learned of genomic testing at that time, also in use England; it was not yet approved in US.

Imagine how many lives could have been saved and how many men spared ADT if ten years ago screening all men in the 40's had began, looking for PSA under 1.0, and further investigation with mpMRI for any concern. Today, Dr Matt Cooperberg, UCSF, is promoting this 'smarter screening'.

IMO PSA is a valid test - it is what we do with result that matters. The problem as I see it is the medical complex wants to treat this disease as a chronic illness - 'here's your pill - good luck'!

[EdBar]

I always used usPSA test per Snuffy Myers until I became resistant a couple years ago and it no longer made sense. The Quest test that I get is undetectable when it goes below 0.06. The Labcorp usPSA test I used to get was undetectable below 0.016.

Ed

[Mikes21 in reply to EdBar]

No less than sigh in front of labcorp .016? Thx

[EdBar in reply to Mikes21]

Ya when I was getting usPSA test I used Labcorp, now the way my PSA is running I just use Quest which is who my oncologist group uses.

[Hidden]

My MO considers 0.1 as undetectable. The MO from PCRI considers 0.1 undetectable.

[NanoMRI in reply to Hidden]

I consulted with the MO from PCRI, paid out-of -pocket fees. His advise to me, which I still have in writing, was and is still wrong.

[Mikes21 in reply to NanoMRI]

What was the psa they told you? Thx

[NanoMRI in reply to Mikes21]

After nanoMRI in Europe identified five suspicious pelvic lymph nodes they recommend I return to Texas to get one more PSA test at the same lab, and that 0.11 did not warrant action. I did not return and I went forward with the salvage lymph node surgery which confirmed six cancerous nodes.

[MarkWakely]

Six years after my RALP, my PSA went from .01 to .10 My diet was terrible at the time and I had been taking a Methylated B12 formula (with folate) since I have a low intrinsic factor and my B12 levels were below the normal range. I quit the B12 and vastly improved my diet and six months later, my PSA dropped back down to .01 My most recent PSA was .04, possibly because my diet isn't quite as healthy as before. My doctor said my PSA was just bouncing along the bottom and was essentially "background noise" and not to worry about it. I've also been dehydrated in the past (once seriously, affecting my kidneys) and that too can result in an abnormally high PSA:

community.prostatecanceruk.....

[Cyclingrealtor in reply to MarkWakely]

Great self advocacy and keeping an eye on the numbers and also taking other factors into the equation! 👍🏻🩵

[Cali3 in reply to Cyclingrealtor]

Are you getting these done periodically with UC Davis? If you don’t mind me asking who is research doc/mo who is being really proactive?

[Cyclingrealtor in reply to Cali3]

It's a doc in their cancer research who has spoken at a local group.

If you are part of the UCD healthcare you can sign up with his department because not every patient gets the testing, like in most other academic settings.

The reason I share his findings is that we see too many men only using psa as the definitive test of success. While scans and blood/ liquid biopsies are also good markers to track progress.

[NanoMRI in reply to MarkWakely]

Over the past six plus year I have tracked my uPSA from <0.010 post salvage ePLND through 0.01X, 0.02X and into 0.03X range. Never thought of this as noise. As I share, recent Pylarify has identified a lesion on my liver and GUARDANT360 liquid blood biopsy has identified a TP53 mutation. In coming weeks with further investigations we will know if this is noise or...

I sincerely hope your 0.04 is noise. All the best to all of us fighting this beast!

[MarkWakely in reply to NanoMRI]

Thanks. I'll be getting another PSA test later this year. When I had my RALP, there were no positive margins and lymph nodes were not involved. My PSA was 4.2 and Gleason 3+3.

[Mikes21 in reply to MarkWakely]

So how’s yours psa now? I went from <.006 to .014 with labcorp so I don’t know if that was due to dehydration? Did your mo say that’s possible? Thx

[MarkWakely in reply to Mikes21]

My understanding is that PSA "bouncing around the bottom" can be due to other factors like dehydration, especially if no cancer was found outside the prostate, but that's not an iron-clad guarantee . I had robotic surgery at the University of Chicago by Doctor Shalhav in February 2011. It was caught very early at a time before "watchful waiting" was a thing. Shalhav said he did not do a lymph node biopsy based on my grade one. He was reassured that decision was correct due to no positive margins. I tend to get dehydrated, once bad enough to almost send me to the hospital. Apparently, your sense of thirst diminishes as you get older:

webmd.com/healthy-aging/wha...

And as I mentioned before, dehydration can cause a spike in PSA;

community.prostatecanceruk....

I won't be getting another PSA test until early December, but since I've experienced these PSA ups and downs before, I'm not too concerned. I just need to remember to keep hydrated, avoid certain vitamins like methylated B12 with methylfolate (which once gave me my highest PSA score post-surgery of 0.1) and eat a healthy diet.

[Mikes21 in reply to MarkWakely]

Wow I hope you’re right about vitamin b12 affecting psa cause I was taking it and may have overloaded in the April May time zone that was due to dizziness. I’ll know where psa is next month and let you know

[Mikes21 in reply to MarkWakely]

thanks and I tend to get dehydrated too so I’ll definitely push water before next psa draw

[Cyclingrealtor in reply to Mikes21]

I use Labcorp for my usPSA and have been < .006 for a year. I use that because standardized .X came back to bite me.

It looks like the thousandths is an unstable number from observation but the hundredths seems to be a better indicator if a rise starts. And then with 3 or more increases one should have a consult with their doc.

[SimMartin]

Ive just finished 19 months of zoladex and RT after previously being mis diagnosed with one side contained G7 (3+<10%4) and going for HIFU then it turns out it’s G9 (4+20%5) within 6 months -

I achieved a PSA of 0.01 at the 3monrh first PSA after RT and a testosterone that ended up at <0.5. So I read these as more or less undetectable or below lab range to detect.

I was anxious for the first 3 month post coming off zoladex - given my high risk G9 and previous errors of assessment off risk and grade of the PCa.

So I get my PSA from my usual place and then he testosterone is only 0.8 so very slight increase (though taken at 4pm so may be under estimated) but the PSA come back 0.03 ! Slightly freaked I check with the doctors portal results page and it says <0.03 - so less than means that I have no idea if it’s the same 0.01 or they’ve change the test or lab !

Their reaction is - well it’s still indectabke and anyway we would do nothing unless it was was rising a lot over several 3 momth tests or reached +2 your nadir ie 2.00.

All very well but why not use usPSA and be clear what’s happening over time - it’s surely up to me to choose what I do how I use the information!?

It’s left me somewhat uneasy and tempted to find a private lab that I scan use myself to monitor over the coming months/years.

Having had several disagreements with medics on my journey- not least being told at 59 that I really shouldn’t be doing yearly PSA tests as I had no symptoms and it would only worry me and it’s nearly always nothing (I insisted anyway) without that monitoring I would have missed the early stages 10 years later as I had no symptoms at all not even night urinary visits (still don’t BTW). And my PSA was then only 4.1 at aged 69 - of course I knew it had doubled in 18 months, and I had no enlarged prostate issues. So my doctor had that in record and referred me for MpMRI and CT etc.

Other errors and disagreements abound and I changed oncologist twice until I found one who listened. But I had good private health cover until the end of this year.

So as I begin to rely on NHS U.K. healthcare SOC it’s concerning that the whole issue around monitoring those of us on a challenging journey can’t be clear about something simple like a PSA test.

[Mikes21 in reply to SimMartin]

Is your lab labcorp? Thx

[SimMartin in reply to Mikes21]

I doubt it as I live in SW London