Two issues here that might be of interest or help to some, to tackle in the same post.
I have always realized there may be variations from lab to lab, but assumed they would normally be quite small. But maybe not super-small, as I read this:
"Using the same laboratory is essential, because not all labs use the same assay to measure PSA, and the results can vary slightly. In [one] study testing the same blood sample using two different PSA assays, a 17-percent difference in the average PSA level [was found]. If you got back-to-back PSA tests at two different labs and they were markedly different, you might easily think something important was going on, when in fact there was no change.”
My MO thought a far bigger differential was unlikely, but not totally out of the question. So consider this monthly PSA trend, as reported by "Lab Apple" and "Lab Orange" (with both labs showing T at 4 or lower):
Lab A - 41.2
Lab A - 11.4
Lab O - 4.8
Lab O - 4.0
Lab A - 7.7
Anybody ever seen such a huge PSA difference due only to a difference in the lab? Well, I still haven't. The "Lab O" result, a week after the 7.7, just came in at 8.5. Seems right in line with (the very disturbing) trend.
So I got my expected answer on "comparing Apples and Oranges." (They appeared to be roughly the same shape, diameter and weight!) But what if that last reading at Lab A was only 4.7 and not 7.7? I think it would be impossible to simply presume your PSA was rising, since with a PSA in that range the difference of a full 1.0 from lab to lab is entirely within reason. So I would suggest to others, if you want to monitor a trend to the satisfaction of any docs involved (as well as to your own satisfaction), do so using the SAME lab every time. Or at least allow for the potential of a 20% difference or so (unless you know the assays are the same.)
And now onto the bigger issue, of how often to test. After the first few months of successful ADT+abi, my MO suggested testing every three month upon my visits, but I opted to see labs monthly. Hence the two "Lab O" entries above
So following the lead of only testing every three months, we would see a nice slow decline from 121 to 41 to 11.4 to 7.7. All is well! Next scheduled PSA on May 1, nearly three months away, so relax 'til then. Except for the fact that my little peek into the middle of the 3-mo period let me see the extra data points of a 4.8 and a 4.0, and make that 7.7 look like a massive failure rather than a modest success.
In this case, I think what I would not have known WOULD have hurt me. Instead of talking TODAY w/ my MO about possible clinical trials after abi failure, the lack of those data points would have meant not having that conversation until early May, with a PSA of who knows how high.
The simple point being, frequency of PSA testing is another case of "comparing Apples and Oranges." Because my initial prior therapy attempt failed very quickly, I felt in my case I would want to see labs AT LEAST every month.
[I think back to a possible mis-judgement made when I failed bicalutamide, in only doing PSA every three months: my 9/2020 labs had PSA 3.8, ALP 108, in a nice decline from 6/2020... three months later, my 1/2021 labs had PSA 23.4, ALP 267. Possibly could have caught the treatment failure, and switch to AR agonist, as early as October!]
So the question of "test every month?" or "test every three months?" seems highly situational and not suited for generalities. The extra data points can mean catching a treatment failure sooner rather than later.
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I was on 3 mo. from remission until 3 1/2 years when my MO decided a 1 mo. schedule would be better acct. I had reached the pt. where xtandi commonly fails.. My first test was the same followed by rising ALP for 6 mo. followed by rising PSA for following 6 mo. Then off to scans and RO for treatment which lowered PSA for 6 mo. Now 9 mo. after RT PSA is climbing again....ups and downs. Still on 1 mo. test schedule acct. PSA not stable...
Why would it have been a good idea to let my MO miss my PSA rise (one month doubling from about 4 to 8) until May?
And considering my wait at LabCorp is usually 5-10 minutes and its a few minutes out of my way, the "wasted" time amounts under half an hour a month. Trust me, I would have spent that extra half hour productively watch one more rerun of Seinfeld or The Office!
I have found also a difference between lab readings in PSA. The MO advised to use the same lab every time & now blood tests every two months as the readings go down.My advice is also to do something constructive & let the MO do what he is paid to do.
There are two assays which labs use to measure PSA...some labs measure Beckman Coulter method and other labs use Siemens method....Beckman Coulter give PSA reading 20 % higher than Siemens. Quest Diagnostics uses Siemens .
Quest also collects blood for some other companies that use Beckman tho. I just ordered a test on my own from Ulta and it said it was Beckman so I’ll consider it higher than normal. Though it was only .03. Good information to have, thank you
Actually, my MO just told me on the phone today we have no urgency to decide on chemo, 2nd gen antiandrogen, or any of several possible trials (like Lu177)... he said even if I got approved right away there would probably be a bit of a wait for getting the Lu, as it is limited, but that shouldn't be a problem... it's a marathon, not a sprint. Should I fire him? You clearly know better than he about the varying time frames of PC progression.
You also seem to be implying that it's somehow my fault that ADT via tE2 didn't work for me and that it is a "nonchalant" approach. Is that what the PATCH trial was all about, subjecting nonchalant men to a nonchalant approach to ADT that has the same 93% success rate as Lupron at getting T to castrate levels?
But I'm still confused: you said it is better to listen to the MO on when to test. And I'm telling you, instead, it would have been better to discover my bicalutamide failure two months earlier than I did just as it is better to discover my Zytiga failure now rather than wait two more months. It is my MO, not me, who has a lesser sense of urgency about discovering PSA rises.
So your logic apparently says there's no time to waste with treatment failures UNLESS your MO decides it is okay to throw the dice and take a chance on missing treatment failures for months at a time. Well, which is it? How can the MO be right if he's the one seeming more "nonchalant" regarding frequency of testing (and urgency of treatment)? He told me on the phone today HE was glad we had the extra data points.
I asked you why would it have been a good idea to let my MO miss my PSA rise (one month doubling from about 4 to 8) for few more months, and your answer regarding my emotional capacity seems like an ad hominem non sequitur... was that because you can't answer the question?
Hey, you still couldn't answer my questions... what a surprise. Somehow you made a simple observation of how data points define a trend all about me and how stupid I am.
Let me explain why I posted: to potentially help men who are looking for a trend to realize the perceived trend may be incorrect due to 1) an insufficient number of data points, and/or 2) differences in the way those data points are arrived at.
That observation is just that, an observation. It is not a judgement on how treatment is managed, or by whom, but a statement of matematical fact. A sequence of results that imply a certain trend may imply a different trend with additional data points, or with correctly adjusted ones. You replied that a "better idea is to let your MO decide when psa tests are required." Logically, that means you must think if your MO directs tests such that a treatment failure is discovered later rather than sooner, that is a better idea.
I simply asked WHY that is better. You can keep finding fun new ways to call me stupid instead of answering the question, but now that I've explained to you that the purpose of THIS thread was to help and support other men (and not to trash their treatment choices), perhaps you can explain to those men: why would it be a good idea to let one's MO miss a PSA rise when looking for a trend?
[Note that I started an earlier thread about my treatment failure and what I should do next. The other thread, where I am looking for help for the future, would be the more appropriate thread to point out my idiocy for past decisions, should that be the way you wish to contribute here.]
Is there a reason you went to different labs, such as traveling? I find it easy to believe there would be differences but I would go to a different lab only if my usual lab showed huge differences in tests in a small time period.
For example, if my PSA went from unmeasureable to 60 over 3 months, I would first go back to the same lab ASAP. If it's unmeasureable again or if it's 2.2, I would then go to a different lab.
Labcorp and Quest are local, my MO labs are a 2-1/2 hr round trip. I was getting monthly labs w/ MO when I went in for monthly Firmagon, switched to every three months when we switched to 3-mo Lupron. The two local lab orders were put in by my MO's PA at my request, but apparently those data points were not added in by the doc's team.
If I listened to the oncologist, he would told me his four PSA data points -- decline from 121 to 41 to 11.4 to 7.7 -- represented continued treatment success. At this moment, both he and I would believe that, as we would not have the three additional data points -- the 4.8 and 4.0 prior to the 7.7, and the 8.5 just now -- that put the trend in question. Instead, we both believe that ADT+abi just failed.
Once again, I fail to understand why being in the dark and missing the early catch, of an early treatment failure, is a more preferable outcome to having the data that has a better potential to catch it. It sounds like the "doctors-are-never-wrong" argument.
Why wouldn't the decisions be best made jointly, as agreed upon by patient, oncologist, and oncologist's team?
Heck! I once had TWO PSA test taken at the same lab at the same time. Results? Much to my shock, the difference in PSA was 2.5 point difference. I had two scripts I had to use and decided to see the results and I expected maybe a small difference.. That really made me think twice before making any hard decisions when it comes to just one spike in PSA reading. Not encouraging in the big name labs.
I had the exact same thing. Two blood draws within minutes of each other, sent to Quest, tested on the same machine about 10 minutes apart. One was 0.17, the other was 0,23. Go figure. I no longer get concerned by these sort of variations.
I paid about fourteen bucks to get that last, extra PSA test. I don't think "that money" is going to buy me a newer, better PET for mets, even after MANY months of not spending $14 on labs.
And, why would scans be any more or less anxiety provoking? I work under the assumption that the mets are there whether I can see them or not, or even whether most scans can see them or not. The better the scan, the more mets you can see... no anxiety in knowing how much more cancer you actually DO have than what showed up (or not) on the bone scan?
The usefulness of scans is in how they are going to impact treatment decisions. The choice of ADT+Zytiga+Chemo was a joint decision by my MO and me, and he never said that would change if we did scans to find out the exact nature and location of my met burden. Why would it?
If PSA and ALP are in steady decline and then low and stable with a given treatment (like ADT+Zytiga), why would a scan suddenly impact that course of treatment? If PSA suddenly trends up, a new scan is only going to be helpful if you have a recent baseline scan for comparison... or of course, helpful as the baseline for the next treatments under consideration. My MO said as we initiated ADT+Zytiga that the trend of PSA and ALP should reflect regression or progression, without a real need for scans during the treatment. Was he wrong?
You're making no sense to me. But then again if you already know what's going on, why worry?
You say: I fail to understand why being in the dark and missing the early catch, of an early treatment failure, is a more preferable outcome to having the data that has a better potential to catch it.
I think my point is along the lines of Herman_PSA_OK. There should be some expected variations in the results. You seem to be complaining about getting results.
Last thought: if your doctor isn't making you happy, find another one. There should be plenty. Best of luck.
I didn't think you would (or could) answer my question. But I'll ask again: why is an MO defaulting to a three-month testing period that misses a treatment failure a BETTER outcome than a patient preferring a monthly testing frequency that potentially catches the treatment failure?
You say your point is "there should be some expected variations in the results." Well, of course... that's what I was saying, too. But that has absolutely nothing to do with you saying, "as to the frequency, listen to your oncologist." The logical implication is, it would be better to follow his lead and then both be in the dark about a potential ongoing treatment failure, rather than asking him to order monthly labs that catch the failure early. Why would that be preferable?
It's an incredibly simple question. Can you answer it, or not?
I know exactly why your MO wants to do labs every 3 months. Because his hands are tied by Insurance companies...They track every Doctors' prescribing habits and prefer Doctors who reduce their cost most...These Doctors are called "Managed Care Friendly".I do labs every 2 weeks BUT I have to pay out of pocket as Insurance only allows labs every 3 months.
Even though my insurance has not denied any claims for monthly labs, I think you are probably at least partly right about a 3-mo default standard being driven by what insurers are willing to pay, as a rule. I would suspect it is also driven by the probable fact that, I assume, the vast majority of ADT patients are on a 3-mo Lupron program. So the default norm would be for most men with stable or declining PSA, show up for your shot and get your labs, see you in 3.
I know many European countries are moving to greater use of 6-mo Lupron to save money, but I have no idea what the standard frequency of PSA testing is there. But ideally, it would always be patient-centric and specific to the needs of the individual, as a result of a conversation between patient and doc, rather than a conversation between accountants at insurance or pharma companies and large corporate healthcare providers or government bureaucracies.
On a (maybe) related note, a study showed over 80% of ADT injections were administered beyond the strict 28-day month definition used in trials and that some delays substantially impacted T suppression... with almost half of tests (in late dosing) showing a value greater than 20 ng/dl compared to a fifth of tests for dosing on time. Further, only 13% of ADT doses in this study had an associated T measurement, implying that inadequate T suppression is often unidentified.
So when the doc tells you it won't matter if your Lupron is a week or two late, and no, you don't need your T tested either, is it really always best to listen to your doc?
Doing monthly since switching to Relugovix as both my URO and MO wanted to see the pattern was same as when I did injectable antagonist. All is stable at one year.
I just said; "a new scan is... of course helpful as the baseline for the next treatments under consideration. " Not only that, it is required for trial consideration if I hope to do Lu (for chemo-naive men who failed abi). The logic seems clear enough to me: watch closely for failure, and when failure arrives (as my MO assured me it would, virtually 100%), THEN do the scan as the baseline for pending treatment/trial options. And here we are... just a bit sooner than hoped/expected.
I’ve done tri-monthly for over six years now of undetectable . I’m on a failed adt test drug to date . Working for me so far . I think if ones Psa is rising then test monthly …
Harsh and sad if true ! I’m happy that you’re at .04 like me but I feel for anyone with a rising Psa . It’s a shit show
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Best kimchi in the world my friend . I still dream of that . Thank you thank you ! ❤️✌️
I'm like you. Been living with this disease since 2007, started monthly PSA testing in 2012, go to bi-weekly or weekly when there are reasons to believe scores are changing rapidly. I've seen changes over 50% in one week and 85% in two weeks.
The 22% difference between Beckman-Coulter and Siemens tests are old news. I posted about it 4 years ago, and it was old news then.
You seem to be saying, don't work together with the doc, don't be your own advocate, just follow his orders. Worry when he worries, don't worry when he doesn't worry. He's infallible, can never make mistakes or errors in judgement, and should not be questioned. That's not the opinion of many men here.
My example could have been reversed: suppose the patient wanted testing every three months to avoid anxiety but the doc thought monthly would be better, to catch more data for defining a likely trend. So obviously the MO is correct in THIS case, too, is he not?
By this logic, doctor's always right, no matter the outcome. If we caught the treatment failure early because the doc wanted monthly testing, and we should always listen to the doc, then that is the preferred outcome. If we caught the treatment failure late because the doc wanted 3-month testing, and we should listen to the doc, then THAT is the preferred outcome. But would that be?
You still haven't explained in what world it's better to catch a treatment failure later rather than earlier. My doc just told me he's glad we caught it sooner rather than later.
And as far as it being the patient rather than the doc who "makes the decisions," that was never claimed by me. It only makes sense that the patient (and his "team" if he has one) and the doc (and his team, which he always has) discuss pros and cons of various options. In fact, I did not go off-reservation, but my extra labs were ordered by my doc's PA after he and I discussed the potential benefit. It appears my doc himself was out of the loop on that.
Men with PC do not need to be confrontational with their docs, but they should ALWAYS think about why the doc suggests what he does, and ask him or his team members questions if they arise. There is no need to follow with blind, unthinking consent.
"Did you get accepted to participate in the Patch Clinical Trial? If not, why would you be experimenting on yourself? "
What are you even talking about? You are making a fool of yourself. My care is and has been administered by Dana Farber, never by myself. For tE2, it was per PATCH protocols, following the Lancet report of about a year ago:
"Results from this study demonstrate the appropriateness of tE2 for the treatment of men with prostate cancer, "wrote Mantia and Choudhury [oncologists at Dana Farber].
“The PATCH trial suggests that tE2 is an appropriate treatment strategy in men with prostate cancer, with a decreased risk of several androgen-deprivation therapy-related side-effects and similar cardiovascular risk as LHRHa. At present, no differences in efficacy have been shown between androgen-deprivation treatments; therefore, therapeutic decisions are based on availability, costs, side-effect profiles, pharmacodynamics of testosterone suppression and recovery, convenience, and likelihood of adherence. The choice of agent should be individualized based on the patient’s disease state, comorbidities, and preferences,” concluded Mantia and Choudhury.
Since when do you think Dana Farber is in the business facilitating self-experiments?
The tE2 failed for me because the expected feedback mechanism did not bring T even close to castrate levels. The reported failure for tE2 to achieve a castrate state in men, over a few decades, is EXACTLY the same as for Lupron, at 7%.
Let me guess your opinion... the reason men fail to become castrate with Lupron is ALSO entirely their own fault, for not choosing a method of T suppression that would have worked better?
Another excellent job of avoiding every single point I made and refusing, again, to answer the questions posed. And yes, you DO know your limitations... they include the inability to maintain logical consistency within a claim, and the awesome unlimited ability to dodge and distract, and turn the conversation to become about the person making the point of debate rather than the debate point itself. Masterful. Okay if I call you Donald?
Glad you are winning "the race" with so many of us here, buddy boy. Everyone loves a "winner." Personally, I am probably like a lot of men, in that I didn't approach my therapies with a keen eye towards bragging about my superior abilities to achieve treatment success, and towards polishing up my "Low-PSA-of-The-Year" trophies that I keep on the mantle. But then, some guys like to turn everything into a pissing contest.
Then I'll get the last word in. (LOL, I know I won't... like me, you can't help yourself.)
Yes, once again I "miss" your point because you are still dodging your original logical inconsistency.
You say you hope "others can compare results to yours and hopefully make wise treatment choices for themselves based on outcomes."
I don't understand why THEY would make treatment choices for themselves based on outcomes when you said above "let your MO decide when psa tests are required." How can you suggest the patient be making a treatment decision when you advise leaving the decisions to the MO? It is HE who should make the decisions, not the patient, according to you.
And if the treatment choice should be based on outcomes of stories shared by fellow patients, starting from the outcome of either "missed catching early failure" or "caught early failure," which of those two outcomes would you consider superior?
If it's the latter (as it obviously is), then when I provided my results so others could hopefully make wise treatment choices for themselves based on good outcomes, wouldn't they likely want to make the choice that has better potential for detecting treatment failure earlier rather than later?
Neither the specifics of my PSA results, nor of my prior treatment choices, nor of whether it was me or my doc that made the choice of more frequent or less frequent testing, has any bearing on the ability of another patient to extrapolate from the example the fact that a lack of data points can confuse an existing interpretation of a trend (as also can an excess of points, or points not arrived at by the same standard).
There also seems a good possibility that your original post stating "let your MO decide when psa tests are required" was personally specific and directed entirely at me, as in "there's no way Noah should have input into questioning what his MO, whoever that is, wants to do, even if the MO has not made an active decision but is on 'default' setting." In which case, the purpose of the post was to bust my balls. Which is okay, but then renders your claim of wanting to help others with that post utterly false, as it implies even the WORST, most forgetful, over-worked, incompetent or mistake-prone doc will always come up with the superior ways to proceed compared to a patient that has thought through the possible outcomes but remains deficient in "emotional capacity."
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