9 years - first detectable .012 - Advanced Prostate...

Advanced Prostate Cancer

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9 years - first detectable .012

Philosophy165 profile image
97 Replies

Hi everyone,

I’ve always been <.008. This time same lab I am .012. RP 2015, Gleason 7, not sure which primary number, no surgical margins, cancer in 2 quadrants, no lymph node invasion. I always go to the same lab here in Canada, LifeLabs. Have Uro appointment on Thursday. Any thoughts on what I might ask him? Would you suggest trying to see an oncologist just to prepare for any further deviations? Thanks!

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Philosophy165
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Tall_Allen profile image
Tall_Allen

It's negligible. Congratulations.

allie2020 profile image
allie2020 in reply toTall_Allen

Yes, your PSA is very, very low. You are going great.

Philosophy165 profile image
Philosophy165 in reply toTall_Allen

Thanks for your answer Tall. I’ve been reading so much on .01 as indication of problems that it started to stress me out as I’ve never been detectable. You sure work hard at your replies. I’ve noticed some people take issue with the .01 benchmark. I’m not sure why there would be any movement given my long stretch of undetectable. I’ve even read that some other proteins can be misread as PSA in usPSA tests. Thanks again.

Tall_Allen profile image
Tall_Allen in reply toPhilosophy165

You are reading Internet garbage that causes needless anxiety.

Philosophy165 profile image
Philosophy165 in reply toTall_Allen

Thank you. I’ve always found the usPSA difficult anxiety wise but thought it to be best practice.

Justfor_ profile image
Justfor_ in reply toPhilosophy165

usPSA is indeed the best practice. The worst practice that fuels anxiety is to be sold to the idea of a "cure". I don't feel any anxiety because from the very start I understood that there is no "cure", but only a long lasting trade where QoL is surrendered in exchange to buying time. And in this respect, for 9 years now, your personal trade has proven extraordinarily profitable.

Tall_Allen profile image
Tall_Allen in reply toPhilosophy165

usPSA is no longer the best practice. In spite of well-meaning but uninformed people on the Internet, like Justfor_. There was a reason for it for many years before we got the data from 3 randomized trials that proved conclusively that there is no harm in waiting for PSA to rise to 0.1 or 0.2:

prostatecancer.news/2019/09...

There are some high risk cases that should not wait to have a PSA at all before getting salvage radiation.

Unfortunately, many labs started doing usPSAs in the interim and doctors got used to "checking the box." I know at UCLA, one can only get a usPSA test, which causes needless anxiety.

Justfor_ profile image
Justfor_ in reply toTall_Allen

For anyone interested. My "well-meaning but uninformed" take is the following: Isolated PSA values, especially the rounded ones like 0.1, 0.2, 05, 2.0, 4.0 etc, easily memorizable by lazy docs, are of little to no value. PSADT is an order of magnitude more informative re the progression of PCa. Yet, PSADT should be derived with some confidence of accuracy and not haphazardly. My criteria for the latter are: a) A time series of 5-6 monotonously rising PSA readings above the quantisation/rounding error dominance cut off, i.e 0.05 for 2 decimal places reporting, or 0.005 for 3. b) Oversampling attenuates quantisation noise, that is, 2 decimal places reporting can be useful bellow said cut off but it takes a hell lot more of time samples to mitigate the quantisation error. c) At some very distant time in the future, contemporary "informed" people, will grasp the founding principle of information theory: Information, like energy, can NOT be created out of nothing. 1st corollary of this is that irreversible loss of information takes place post rounding (think of these "magic" round numbers like 0.1 0.2 etc).

Tommyj2 profile image
Tommyj2 in reply toJustfor_

Huh?

dhccpa profile image
dhccpa in reply toJustfor_

I could not follow your response. Perhaps you dictated?

Justfor_ profile image
Justfor_ in reply todhccpa

If you can't see the difference between two PSA readings, one of 0.0x and another of 0.0x0, than you will be better off assuming that dictation rendered it incomprehensible.

dhccpa profile image
dhccpa in reply toJustfor_

Ahhh- now I understand fully!

Tall_Allen profile image
Tall_Allen in reply toJustfor_

You made my point, thanks. You don't seem to understand the difference between "clinically meaningful" and "numerical precision." I suggest you read "Noise: A Flaw In Human Judgment" by the recently deceased Nobel Laureate Daniel Kahneman et al.

Philosophy165 profile image
Philosophy165 in reply toTall_Allen

Thanks Allen for the reply. There is a reason why my question has caused this preponderance of replies for which I’m both surprised and grateful. It seems as though without access to the medical literature - and I’m sure even with it - there does not seem to be a definitive agreement among clinicians other than 0.2, which some would assert is not viable in many cases. My insurance won’t kick in until at least 0.1 apparently as I am in Canada. I will ask my uro but it could even be 0.2. The noise arising from perspectives and bias that give rise to variance in interpretation is a legitimate issue inasmuch as nothing seems to scream out at us from the diagnostic side making it easy to pronounce definitively on best practice with real life definitive results all the time. I’ve read many studies now. “Earlier is better” is a reasonable conclusion within the maelstrom of percentage points difference in 5 year or 3 year or 10 year or whatever survival rate. But so is wait until defined BCR if one is to let the whole wash of noise pass through and into our lives. All of the noise does indeed make it difficult to know. I did my degrees in philosophy and could expound philosophically for pages and pages. There is a moment in our lives when we have to rest in what is the reality. If we are 50 or 60 we have little time left to live even if we go to 90. It’s not a race. Do I win something by getting 30 more breaths and another sirloin steak? No. Most on this forum I can already see understand their mortality and are doing what they can to help each other through. Your contributions I have really valued because it helps cut some of the noise. I have valued all the other contributions as well and the obvious appoints of disagreement that I’ve stepped into. I will take all of what you and others have said into account this Thursday and you have no idea how much I have valued the input. It’s a very good forum and offers all of us some hope and guidance. Thank you!!

Tall_Allen profile image
Tall_Allen in reply toPhilosophy165

I'm not sure what you are getting at, but there is definitive medical science on this issue. In fact, it is rare to have such definitive agreement.

The issue seems to be your anxiety, not your PSA. I found that psychotherapy helped me a lot with my anxiety over my cancer diagnosis, and it may help you.

Philosophy165 profile image
Philosophy165 in reply toTall_Allen

Thanks again. Appreciate the advice. You’ve just confirmed the noise factor in terms of bias in interpretation, which we all have. My quandary comes from some reading I’ve done that talks about .03 as predictive.

Tall_Allen profile image
Tall_Allen in reply toPhilosophy165

The reading you've done is incorrect and outmoded. There is no quandary. It is all a product of your anxiety.

NanoMRI profile image
NanoMRI in reply toTall_Allen

Having had RP and five years since bicalutamide, I will continue with my usPSA testing, fully supported by my diverse international medical team, and no, it is not about anxiety, and I do not need psychotherapy. As a side note, standard of care is a legal term, not a medical term and I remain most grateful I am out ahead of prostate cancer "SoC". All the best to all of us experiencing prostate cancer that has spread beyond the gland. How wonderful for you Allen that yours did not.

Tall_Allen profile image
Tall_Allen in reply toNanoMRI

SOC is certainly a medical term. How wonderful for you that usPSA testing does not cause needless anxiety, as it does for most men. There is no current use for it.

NanoMRI profile image
NanoMRI in reply toTall_Allen

did not realize you speak for most men, and yes, SOC roots are legal.

Justfor_ profile image
Justfor_ in reply toNanoMRI

My take is that SoC (State of Change) is an incomplete indexing descriptor missing an ordinance or time identifier, for example: ver. 3.11, Fortran68, etc.

Justfor_ profile image
Justfor_ in reply toTall_Allen

Thanks for the offering, but I will pass. In case I read it, I would put in jeoparty my "uninformed" status. I would started calculating the area of the circle multiplying by 3 instead of the "unnecessary anxiety causing" π, and other very relaxing things. I don't think I can endure that much of relaxing happiness.

Jmr11820 profile image
Jmr11820 in reply toTall_Allen

So I’ve been 4 1/2 years with a PSA of 0.00. You’re saying if it should be .03 or .04 when we recheck next month, you would still advise waiting?

Tall_Allen profile image
Tall_Allen in reply toJmr11820

When not one but 3 important randomized clinical trials (which is the highest level of evidence) tell us the same thing, we would be foolish to put our anxiety ahead of the science. I once believed as you do, but I am now convinced of it.

podsart profile image
podsart in reply toTall_Allen

Your link took me to: “Sunday, September 29, 2019

Adjuvant" similar to "Early Salvage" Radiation Outcome in Meta-analysis”

This doesn’t seem recent and having trouble seeing where it shows that: “conclusively that there is no harm in waiting for PSA to rise to 0.1 or 0.2:”

Can you please help me find where I missed the clear connection that “usPSA is no longer the best practice”

Tall_Allen profile image
Tall_Allen in reply topodsart

I doubt it ever be redone because those trials were so definitive and have permanently changed the standard of care. It would be unethical now to treat patients differently.

All three told us the same thing: there was no advantage in having immediate (adjuvant) radiation over waiting for the PSA to rise to 0.1 or 0.2.

If a PSA of 0.1 or 0.2 is necessary to trigger salvage treatment, there is no longer any use for PSA below 0.1. It only causes unnecessary anxiety.

Philosophy165 profile image
Philosophy165 in reply toTall_Allen

Thanks for this.

Tall_Allen profile image
Tall_Allen in reply topodsart

I just updated it with some newer info - mostly providing links.

podsart profile image
podsart in reply toTall_Allen

thanks ; is there a new link to this update?

Tall_Allen profile image
Tall_Allen in reply topodsart

No. Small additions, not enough to re-write. As I said, it won't change.

Papa1 profile image
Papa1 in reply toTall_Allen

You can lead them to water, but you can’t stop them from drinking the Cool-Aid.

RyderLake2 profile image
RyderLake2

Hello,

Half the members of this forum would love to have a PSA like yours.

NanoMRI profile image
NanoMRI

Sharing from my experiences relying on usPSA <0.010 as best indicator, rises above concerning (small rises certainly not negligible), and taking actions no later than 0.030. Answering your two questions, no, I would not see an oncologist at this time. I would ask Uro (push/demand) to begin monthly testing. If next two are rises, (first confirms and second starts trend), no later than 0.030 I would seek imaging; one of the available PSMAs and either mpMRI, fluciclovine or Mayo’s Choline for comparison. I would also be asking for a blood biopsy; I found the Guardant360 CDx very useful. Yes, I know acting at these very low PSAs is below common ‘guidelines’, but then, my intent remains to not give this beast time and obscurity and if it comes to it, to defer ADT/chemo/CR for as long as possible. Note 1, I am post RP, salvage RT, salvage pelvic lymph node surgery and a short time on bicalutamide as a concession of added insurance, and doing very well. Note 2, I have read the comments preceding mine. I hope this helps. All the best!

London441 profile image
London441 in reply toNanoMRI

“Taking actions no later than 0.030”?

I don’t understand that and don’t want to. To each his own.

street-air profile image
street-air in reply toNanoMRI

As far as I read pet psma imaging is no use below 0.20 as the false negative becomes the dominant signal. I doubt any other imaging is better. So not sure what imaging one would do at 0.1 or lower. It is just unlikely to see where it is coming from. At least thats what the studies say,?

Fortran1958 profile image
Fortran1958 in reply tostreet-air

I had 4 or 5 PSMA Pet scans over a 12 month period, with PSA of 0.2 through 0.33. Nothing definitive found. Urologist is waiting for PSA of 0.6 before next scan. Currently PSA at 0.51 2.5 years after hitting 0.2.

Justfor_ profile image
Justfor_ in reply toFortran1958

Next time, try 15 days of Enzalutamide (even Bicalutamide) before scanning. They stimulate PSMA expression. By the way, wasn't it Fortran IV before Fortran 68?

gsun profile image
gsun in reply toFortran1958

4 or 5 at that PSA? You wasted a lot of time and money that could have gone to other people. I don't know why your MO would have done that.

NanoMRI profile image
NanoMRI in reply tostreet-air

I respect and appreciate the ?. Six years ago, at usPSA 0.11, I traveled to Europe for Ga68 PSMA combined with the 'even better' Ferrotran nanoparticle MRI. Although the Ga68 was clear the nanoMRI identified five suspicious pelvic lymph nodes. Salvage extended pelvic lymph node surgery confirmed six cancerous pelvic lymph nodes. It has been said to me that my personal testimony is interesting and perhaps informative, but what is pertinent is recent medical studies and literature. I remain most grateful I get out ahead of common medical practices and hope my strategies will not end up being to my detriment.

Justfor_ profile image
Justfor_ in reply toNanoMRI

Let us make some time-travel back in 1824 in Messologi (Greece).

Lord Byron (36 y.o.) is submitted to the SoC of the time, leech bleeding:

"... The doctors drew a full pound without much effort. Two hours later they took another pound ‘very thin in appearance’, after which Byron slept a little. On 17 April the doctors took a further ten ounces of blood arguing that it would make him sleep. Byron was talking wildly in delirium. Two other doctors were called in for consultation, Dr Loukas Vaya, physician toPrince Alexander Mavrogordato, patriot and first President of Greece, and Dr Treiber of the artillery brigade. Both agreed that Byron was too weak to be bled further. They gave him some Peruvian bark,7 water and wine to allay his thirst, and applied two blistering plasters* on the insides of his thighs. ..."

".., The 18 April was the Greek Easter Sunday, but as Byron was delirious and very ill, the celebrations in the town were suppressed in deference to him. Dr Bruno returned with the one remedy he knew and, getting the consent of the other doctors, applied 12 leeches and extracted two pounds of blood. ..."

"... On Easter Monday 19 April his breathing became stertorous and his pulse intermittent. He remained unconscious, moaning a little from time to time. At 6.15 pm Byron was seen to open his eyes and close them again. Byron was dead. "

Excerpts from here:

rcpe.ac.uk/sites/default/fi...

Will people, two centuries down the line, in April 2224, reading about current SoC i.e. RPs, RTs, ADTs and the rest, will get the same feelings with the ones you got by reading this post?

Just wondering....

NanoMRI profile image
NanoMRI in reply toJustfor_

odd how current thinking, SoC, is replaced by current thinking, latest SoC.

gsun profile image
gsun in reply toJustfor_

They probably will advance a lot but your analogy is stupid.

j-o-h-n profile image
j-o-h-n in reply toJustfor_

Update:

Leech bleeding = current definition of my alimony payment to my ex-wife....

And I have to be extra vigilant on May 5th (Greek Orthodox Easter). Yiasou!!!

Good Luck, Good Health and Good Humor.

j-o-h-n

Justfor_ profile image
Justfor_ in reply toj-o-h-n

That was GOOD!

Azores1 profile image
Azores1 in reply toJustfor_

Likely if not certainly.

dhccpa profile image
dhccpa in reply toNanoMRI

Has nanoMRI made it to USA shores yet?

NanoMRI profile image
NanoMRI in reply todhccpa

No. Well actually, it was here years back, known as Combidex, but the FDA stopped its progression, due to 'issues'. This is an ongoing research effort of mine, mired down in open records requests and document culling.

cigafred profile image
cigafred in reply todhccpa

Many years ago I had the nano-MRI in Nijmegan and as soon as I showed the pics to my radiation oncologist here (who had previously been with Zelesky at MSK) he interrupted our appointment to call Prof Dr. Barentsz to ask if he could license the technology for here in the US. The response was no, because, like Kwon at Mayo, there was an expensive machine that needed to be used.

dhccpa profile image
dhccpa in reply tocigafred

Tsk, tsk

Philosophy165 profile image
Philosophy165

Thanks Nano for your input. I am intending on using .03 as threshold in my discussions with my urologist. Do you have any studies on .03 as reliable indicator of BCR? Thanks to everyone who replied. Much appreciated.

NanoMRI profile image
NanoMRI in reply toPhilosophy165

I am not aware of a definitive study that will easily change long-established common clinical practices. But then, I have not looked much since I settled on <0.010 nine years ago - when I had my RP. Six years ago, at 0.11, I went to Europe for my salvage ePLND with frozen biopsy section (could not find a US center). Cancer was confirmed in six pelvic nodes - the 'furthest' being the left para-aortic (again at 0.11). Recently I was told the Mayo Clinic Rochester is now offering this procedure.

Following are two links from my library - I would like to think there are newer and better ones available. Note, I am not a big fan of statistical averages, etc. My focus is me and me not dying from this disease, nor having to face long-term ADT then seemingly inevitable CR.

prostatecancerfree.org/pca-...

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

Philosophy165 profile image
Philosophy165 in reply toNanoMRI

Thank you very much for your time. I appreciate it very much.

Philosophy165 profile image
Philosophy165

I want to go in armed with studies on .03. I’m on provincial healthcare so I wouldn’t be surprised f there is no insurance before .2.

gsun profile image
gsun in reply toPhilosophy165

Are you in the Vancouver area?

tn12 profile image
tn12 in reply toPhilosophy165

We're in Ontario and the doctors aren't doing anything before 0.1. I think if you want anything done at 0.03 you'd have to pay out of pocket.

Philosophy165 profile image
Philosophy165 in reply totn12

Dry much appreciate your reply. It actually is surprising and a relief to see .1. I thought for sure OHIP would not pay until .2 or more!

tn12 profile image
tn12 in reply toPhilosophy165

OHIP pays whatever the doctors recommend.

Kaliber profile image
Kaliber

my psa is <0.1 …. ( what it actually is below this I don’t know or care about ) … I’m with Kaiser and it’s their standard …all 5 of the oncologist Ive had say looking at values below 0.1 only causes worry and psa can bounce around so much that knowing what happens below 0.1. Isn’t beneficial . the actual oncologist… specialist that it matters to aren’t concerned. At kaiser , when psa gets above 0.1 they may start to keep an eye on it, and starting to act when it reaches 2.0 .

Other organizations may differ , just mentioning how my medical team does it .. and I totally avoid concerns / anxieties , that looking at micro psa causes .

My psa was 1400-1600 when DXed . I’ve been <0.1 for nearly 6 years so far.

❤️❤️❤️

NanoMRI profile image
NanoMRI in reply toKaliber

I had six cancerous pelvic mets at 0.11 and as far as para-aortic; had to be there at <1. As I am not (yet anyways) on long-term ADT nor chemo, closely tracking these very low PSA numbers is crucial. I have been testing frequently for nine years and I do not experience 'bounce' in these low values - there is not much range to bounce within.

Kaliber profile image
Kaliber in reply toNanoMRI

Tall_Allens post , above, about usPSA says it all for aPCa treatment at Kaiser , where I get my treatment. The clinical trials that showed no advantage to it , except creating needless worry. You sound like you may have unusual circumstances possibly, and of course as patients are different, treatment centers vary as well. I’m kinda glad I don’t have to worry about usPSA , I worry enough with what I already have and know.

Just 6 Mets on your pelvis bone sounds pretty good to us guys that have pa’ve Mets lol. ( 1000s of Mets esp joints , skeleton / skull wide ). On the points of my pelvic bone , I have Mets that deformed the bone into what looks like curly cue rams horns. Freaked me out , totally, at first but I got used to it as time passed . From the little I see here , sounds like you have been pretty lucky , especially not having the load that ADT or chemo can bring for some of us ( me esp ). I hope you can keep that streak going and hang in there a long time brother. There is nothing good about aPCa . Best wishes brother.

❤️❤️❤️

NanoMRI profile image
NanoMRI in reply toKaliber

Kaliber I appreciate your reply and thank you for your best wishes. Yes, I consider myself most fortunate, lucky, and I am grateful beyond words.

An important clarification. To date, nine years since diagnosis, I have no known mets on my pelvis bone, nor anywhere outside of my pelvic region.

usPSA testing, which yes I understand is less useful to men facing distant metastasis, continues to be crucial to my treatment strategy; which is, if it comes to it, to defer ADT/chemo/CR as long as possible. So far, this is my situation.

I began relying on usPSA testing following my RP eight years ago, which resulted in a nadir of 0.050. My medical team and I accepted cancer remained, that it had indeed spread outside of the gland.

Over next nine months my usPSA slowly, steadily rose to 0.11, so I had salvage RT to prostate bed, without imaging, not wanting to give this beast any more time. My post salvage RT nadir was 0.075 - my cancer had spread beyond the prostate bed.

I continued monthly usPSA testing and again watched my numbers rise back up to 0.11. Instead of ADT/chemo I traveled to Europe for imaging not available in US - five suspicious lymph nodes were identified. I then chose salvage extended pelvic lymph node surgery which confirmed six cancerous pelvic lymph nodes. My post ePLND nadir was <0.010.

After much thought and many consultations I did one year on bicalutamide for added insurance - a compromise to my thinking. I also carried on with very frequent usPSA testing.

Here is a summary of my last six years of usPSA testing (no added anxieties for me):

<0.010 - 23 months

0.01X range - 8 months

0.02X range - 7 months

0.03X range - 33 months

Any hour now I will be receiving my latest self-directed usPSA testing result along with Testosterone and Vitamin D.

Kaliber all the best to you and all the best to all of us!

Keith

Kaliber profile image
Kaliber in reply toNanoMRI

Roger that big guy. Preciate it. ❤️❤️❤️

Tony666 profile image
Tony666

just my own two cents. I wish there was a psa standard between the regular <0.1 and the ultra <0.01. For example, if there was one at <0.05 I would use it.

NanoMRI profile image
NanoMRI in reply toTony666

My RP nadir was 0.050 and cancer remained and grew and spread. Had to be there at <0.50. After my ePLND nadir of <0.010, which held two years, I have tracked rise over past four years through 0.01X, 0.02X and into and holding 0.03X range these past 33 months.

gsun profile image
gsun in reply toNanoMRI

.03 for the last 33 months? Congrats! You are doing great. My nadir of <.008 held for about a year and has gone to .053 over the last two. I'm good.

NanoMRI profile image
NanoMRI in reply togsun

Yes, I am very grateful. I continue to watch my usPSA closely as I only did one year on bicalutamide and that ended five years ago. Because I am not (yet) back on ADT, I base my treatment plan on usPSA testing. For example, my post RP nadir, eight years ago, was 0.050. I was not good - cancer remained and was spreading.

London441 profile image
London441 in reply toTony666

Why?

inthefight profile image
inthefight in reply toTony666

I think it depends on what the oncologist orders. Our prior oncologist ordered three digit test results but our new one asks for the <.05 test. Same lab being used.

Channelhomec profile image
Channelhomec in reply toTony666

Sloan does< 0.05

Channelhomec profile image
Channelhomec in reply toTony666

Sloan does< 0.05

cigafred profile image
cigafred in reply toTony666

NorthShore in Illinois uses Roche, for which the low is <0.02 ng/mL.

London441 profile image
London441

It means nothing. You might want to know which Gleason 7 you had though.

RMontana profile image
RMontana

I would recommend that you retest in about two or three weeks. Mine has always been .006 and I had one test at .012. I then retested three weeks later and since then I’ve been .006. So I would retest first. You can’t bounce up temporarily. And yes, it’s still low, but it would concern me if it just kept going up. So don’t give up yet I would retest. Rick

RMontana profile image
RMontana in reply toRMontana

...here is more info. I looked at your BIO; not much there. I dont know if you got a RP or RT...assuming you got a RP there is a background level of PSA that you have from other organs in your body. Take a look at this result I got from my Ai search...

SEARCH: "After a radical prostatectomy, the prostate gland is removed, and ideally, the PSA (prostate-specific antigen) level should drop to an undetectable level, as the prostate is the primary source of PSA in the body. However, some men may have a detectable PSA level after surgery due to other cells in the body that can produce small amounts of PSA. This is not necessarily indicative of cancer recurrence, especially if the PSA level is low and not rising over time 1 , 7.

The use of ultra-sensitive PSA assays can detect very low levels of PSA in the blood. According to the 'American Society for therapeutic radiology and oncology', a low level or undetectable PSA level is defined as ≤0.06 ng/mL or 0.02 ng/mL 2. These ultra-sensitive tests can measure PSA levels that are much lower than the traditional assays, which typically measure down to levels of 0.1 ng/mL."

Ai LINK: perplexity.ai/search/What-i...

REFERENCES:

1. cancer.org/cancer/types/pro...

7. healthline.com/health/prost...

RJAMSG profile image
RJAMSG

I had a similar situation so I rechecked it in a couple weeks and it returned to < undetectable, chalked it up to lab error, please add your history information to bio too when you are able thanks

NanoMRI profile image
NanoMRI in reply toRJAMSG

As I share, I do frequent self-direct usPSA testing and I do see fluctuations - but never attribute them to lab error. I do wonder, which result would be the error - the one we like or the one we do not like? I find regular testing reflects the actual trend.

RJAMSG profile image
RJAMSG in reply toNanoMRI

Mine was definitely lab error because everyone before that one was <0.01 and then after that 1 error/outlier have been <0.01 😊

NanoMRI profile image
NanoMRI in reply toRJAMSG

I am not challenging, sharing. :) As we know the trend is important. The occasional bumps up I have realized and graphed over the years, always followed by drops, were indicating the coming of a rising trend. Also, I came to understand some minor fluctuations reflect changes in hydration and biotin supplements are known to slightly impact usPSA. A <0.01 (the value I rely on as best indicator) could be 0.009. You have not share your errored value - maybe just the loss of < or maybe 0.011 before return to <0.010. Yes these very low values seem picky - maybe irrelevant to some - which is why the trend over time is critical.

EdBar profile image
EdBar

I had the same thing happen after years of being undetectable, for me it was the beginning of some tumors becoming castrate resistant. When it reached 0.2 I had a PSMA scan done that revealed a tumor on my rib that I had radiated with three sessions of SBRT. PSA fell back to nearly undetectable. About a year later same thing happened, this time a different rib, same treatment, same result. My last two PSA tests were 0.08 and 0.09, so no change. Just continue to track PSA and keep your foot on its throat through treatment.

Ed

Boacan profile image
Boacan

I’m in a similar situation as I had RALP in January 2020 with Gleason 3+4 and pathology of clear margins and nodes. I have been usPSA undetectable for 4 years. Most recent test of April 9, 2024, came back at .03 (same lab). Urologist wants to test again in 3 months and take a “wait & see” approach referencing clinical studies that have shown no harm in waiting until PSA rises to .20 - If PSA rises to that level, PSMA scan will be taken to try and identify location. If cancer’s location cannot be found, then salvage radiation to the prostate bed along with ADT will be recommended. I’ve read all previous replies but see there are several on both sides of the fence regarding when to take action. I appreciate you all and any insights or information you have in these difficult situations.

NanoMRI profile image
NanoMRI in reply toBoacan

Overall a good friendly discussion across the fence. As for the clinical studies that suggest no harm in waiting, well, as ADT/chemo were first recommended to me seven years ago, yes, I have waited on ADT/chemo, but have acted twice at 0.11, first with salvage RT to prostate bed then salvage ePLND. I see no reason to give this beat time and obscurity. My reason to wait on prolonged ADT is to defer side-effects the seeming inevitable CR. All the best to all of us!

SeosamhM profile image
SeosamhM

Ah, the PSA debate once again rears its head but, as TA's obvious irritation indicates, it really shouldn't be a debate. PSA levels are exceedingly context driven - this explains the ongoing struggle in preventative care to decide on a definitive algorithm for PSA's use in men's health screening.

Once we have advanced PCa, PSA levels are great for trending, but little else. Since PSA is so important in this regard, we tend to ignore the science of PSA expression in our bodies - it's complicated (See: ncbi.nlm.nih.gov/books/NBK5.... As example, from this source:

Prostate cancer cells do not produce more PSA than benign cells; in fact, they tend to manufacture less. However, malignant cells will more easily allow PSA to pass through the cell wall into the surrounding extracellular fluid and eventually reach the bloodstream. This is because malignant prostate cells lack a basal layer that would otherwise restrict the passage of PSA outside the cell. Very high Gleason score cancer cells that are highly undifferentiated may not produce a significant amount of PSA.

There are enough confounding factors in that one paragraph to lead me - as a highly educated fellow that has biochemistry experience - to eliminate PSA as the ultimate standard in tracking my cancer status and to knock it back down to "another tool in the toolbox". And then there's this little gem:

The term “prostate-specific antigen” isn’t exactly correct, because there are other cells in the body that produce PSA at very low levels. Urethral glands can, and so can salivary glands, normal breast tissue and some cancers besides prostate. The parallel structures to the prostate gland in women, Skene’s glands, may produce PSA, but not enough to register on a blood test.

(See: detroitnews.com/story/life/...

This alone really should blow some people's minds when talking about ultra-sensitive PSA tests in the wrong context. Yes, we are always at war with our cancer, and it can be an insidious disease. But we cannot scramble the squadron at every blip on the radar.

This being said, you should always discuss things with your care team. No question is a dumb question and you are your own best advocate, e.g., if your PSA continues to climb and there are other indicators (e.g., a rising ALP), when do you and your team investigate further (like a PSMA scan)?

Good luck and continued good health to you, sir! - Joe M.

ImDD profile image
ImDD

Have you already had a biopsy? No treatment? Just tracking PSA? Need more context.

Michael-F profile image
Michael-F

My 12 year post RP uPSA = 0.080 ng/ml. Just when I thought I would finally graduate from testing every 6 months to annual testing, my 1st clinically detectible result sprang up. Maybe my prostate gland is undergoing regeneration and will be fully in tact and functional in 10 millenia!

Keep in mind your latest PSA result is an infinitesimally small quantity: 0.000000000012 gram! Clinical Detectability => 0.05 ng/ml. There is no reason for concern. Simply speak to your URO specialist and continue to monitor your PSA at appropriate intervals.

The AUA defines BR: "biochemical recurrence is a rise in PSA in prostate cancer patients after treatment with surgery or radiation (PSA of 0.2ng/mL and a confirmatory value of 0.2ng/mL or greater following radical prostatectomy and nadir + 2.0ng/mL following radiation)."

SeosamhM is correct. Periprostatic and other tissues can/do produce extremely small amounts of PSA. These levels should be steady state, but likely "bounce" slightly. In the event of 3 or more consecutive increases, the concern of early stage recurrence becomes elevated.

IMO, uPSA monitoring should be a judgement call by the URO specialist and reserved for those in elevated risks categories following treartment. All others should use the a 0.1 PSA assay and simply look for the "<" symbol preceding the result!

Good luck All!

MF

Philosophy165 profile image
Philosophy165 in reply toMichael-F

Thanks for the reply. Much appreciated.

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

Ironic........... we have indeed turned into females....................... worrying about a Period.........

Good Luck, Good Health and Good Humor.

j-o-h-n

Kaliber profile image
Kaliber in reply toj-o-h-n

Rotflol …. For you it’s “ NO “ , period.

Just say’in

j-o-h-n profile image
j-o-h-n in reply toKaliber

For our mental health, this banter must come to a Full Stop.

Just say’in

Good Luck, Good Health and Good Humor.

j-o-h-n

Philosophy165 profile image
Philosophy165 in reply toj-o-h-n

I agree. Sorry for stirring the pot.

j-o-h-n profile image
j-o-h-n in reply toPhilosophy165

No issue........ I was just messing with Mr. Kal......a dear brother and friend.

Having Pca, it seems that "Too many cooks smoke the pot"......... Just keep posting whatever is whatever......Thanks for being here.......

Good Luck, Good Health and Good Humor.

j-o-h-n

Philosophy165 profile image
Philosophy165 in reply toj-o-h-n

Thanks John. I can see that usPSA is a huge debatable deal. Just have to do what we can and live with it.

Kaliber profile image
Kaliber in reply toj-o-h-n

Good for you buddy for having some “ mental health “, it’s admirable I admit. I think that you know I’d never cast any actual negativity your way. You’re the guru of fun spin and your longevity is an example we all hope to emulate. Nothing but love and respect for you buddy.

❤️❤️❤️

j-o-h-n profile image
j-o-h-n in reply toKaliber

Thank you Mr. Pal..... oops Mr. Kal,

I was just playing along with the posting:

Full Stop = Period...... (Anyway it's done with, Period)....

Good Luck, Good Health and Good Humor.

j-o-h-n

Kaliber profile image
Kaliber in reply toj-o-h-n

❤️❤️❤️

FMOH_N profile image
FMOH_N

usPSA of 0.03 maybe a better threshold/cutoff

europepmc.org/article/pmc/4...

Stoneartist profile image
Stoneartist

Im at PSA=0.18 - up from a nadir of <0.09 - and expecting the next step to be a second round of Chemo. Since chemo only works on fast growing cancer cells I am perfectly happy to wait til PSA goes over 2.0 before taking further action. I am still symptom free, happy, and living life to the full ----- dont worry -- be happy ☺️

Channelhomec profile image
Channelhomec

Has any one had psa after salvage 4years ago jump to 0.1 then drop the lasts 24 months 0.03 just asking since we were talking on psa had salvage in 2019..

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