I’ve been on the ultra sensitive PSA tests since my Prostatectomy on 10/2019, mainly because that’s what is available and my high Decipher score and the recommendation to start Early Salvage if it starts to rise to 0.03 range and up; I will be getting another test to make sure it’s not lab noise since it is low, but just curious if anyone else has had this before? Thanks
After 63 months of < undetectable PSA... - Prostate Cancer N...
After 63 months of < undetectable PSA my PSA went from <0.01 to 0.01? Has anyone had this before?
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RJAMSG
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The only purpose of uPSA tests is to drive patients crazy.
Once again, false!
NanoMRI has appointed himself my personal troll. No evidence from him, just trolling.
How cute you think you have a personal troll. How narcissistic.
Allen, I certainly have no interest in your pontifications but I will speak out on subject matters I have considerable experience and understanding with. As for evidence, there are currently some excellent discussions and shares regarding experiences and evidence with uPSA testing - available for curious minds.
Murray
I did not mean to have this question start anything in the group...
Thanks Mr. Allen, I know what you mean LOL, had I used Moffit, the VA or Quest which use the <0.05-<0.02 range I'd not be concerned :-), but I mostly have been using the UF lab over the past 5 years. What is one to do? My understanding is that to start early salvage you need to hit (.1 mark or slightly less) but if it take years/months to reach that in the mean time what are those insidious cells doing spreading around? Since my decipher is high they probably would want to do prostate bed/lymph/maybe hormones?
The group is usually fine, but one or two trolls always make things unpleasant, which makes them feel powerful on social media.
" the meantime what are those insidious cells doing spreading around?" You are completely safe in waiting. That was proved by three randomized clinical trials. They proved definitively that for most men there is no risk in waiting for PSA to reach 0.1 if it ever will.
prostatecancer.news/2019/09...
The decision for the high risk men (Gleason score = 8-10 and Stage T3 or T4) is different. Those men should not wait for any PSA tests, but should have immediate (adjuvant) radiation.
prostatecancer.news/2021/10...
sucks for the men that are not in the "most men" group. I was a simple 7, 4+3, yet cancer made it to para-aortic.
As for your continued attempts at insults, reflects on you.
Troll, I said "most men" because the exception is high risk men, who should be treated with adjuvant radiation. uPSA is a relic of the past.
Name calling over civility speaks volumes.
Nano, I recall you also had malignant melanoma(?), was that related to prostate or coincidence?
Thanks!
Do we know if that's a bug or a feature?
uPSA tests are widely and effectively used by top prostate oncologists and their patients as early warning signs that provide opportunities to implement treatments when the treatments have the best chance of success.
No. The top oncologists follow the science and have changed their ways. There is no difference in outcomes between waiting for BCR (if it ever occurs) and immediate (adjuvant) radiation.
prostatecancer.news/2019/09...
uPSA tracking has helped me achieve my goals.
Can you share some names of specific oncologists you think see uPSA tracking as not useful?
Mayo has stopped offering it, for example. Can you name any top oncologists who are stuck in the past?
You have no idea what your outcome would have been.
For the original poster RJAMSG:
If I have any regrets in my prostate journey they were waiting too long to get treatments. The first regret was not getting more frequent PSA tests in my 50's when my PSA doubled from 1.2 to 2.4. Nobody can know for sure, but earlier diagnosis and treatment might have been more successful.
The second regret was not getting salvage radiation when my post-prostatectomy PSA reached 0.12. Nobody can know for sure, but it might have been even more successful than when I got it at PSA 0.20. At minimum, it would have chopped months off of my anxiety of having a recurrence.
On the positive side:
On my second recurrence, I decided to consult with one of the world's most experienced prostate oncologists and get additional treatments when my PSA doubled over 5 months from 0.03 to 0.06. Those treatments gave me another 4+ years of undetectable PSA and freedom from ADT.
One smaller regret:
The only treatment I've had that I consider questionable was ADT. I'm not sure whether it helped (nobody can know for sure) because at the same time I had chemo and additional radiation. Every body is different, and for me ADT side effects were worse than any other treatments I've had.
Thanks for sharing, I’ve heard that from others also about ADT; Pluvicto could be a real game changer.
It will be interesting to see if radio-pharmaceuticals like Pluvicto are more successful when administered much earlier in the life of the cancer.
The biggest game changer I've seen has been using PSMA scans and SBRT for oligometastatic situations (without any ADT in many cases).
I dont understand why they use ultra sensitive psa tests!!?Is it money that talks or what.. The lowest psa here in europe is 0,1 you can/will measure. Ask your specialist NOT to take ultra sensitive psa tests.
Where did you get that blanket statement, about Europe, from?
Here in Greece, even if you asked for single decimal place reporting, I can't guide you where to get one. Two decimal places is the norm for cancer hospitals and private labs and I have personal experience with 10+ of them.
In Belgium:
In one lab we have 2 possibilities: PSA after treatment (to .01 precision) , Screening PSA (to .1 precision). I haven't checked if these are the same assay with different reporting.
In the University Hospital I go to they do to .001 precision.
For various reasons, I like my ultra sensitive PSA, I find it reassuring and at least some oncologists like it too.
It just needs patient education (or hide it from patients).
Ok.My mistake .Nordic countries.
ulfhbg told me that in Sweden (also Nordic 😉) they do NOT do ultrasensitive PSAs.
Misleading again.
This Gentleman in Sweden had his first PSA after RP <0.1, dubbed "undetectable", but when it started to rise they cut the BS out and switched to 2 decimal places reporting ever since (12 PSA tests).
healthunlocked.com/advanced...
Hi
Where in that thread did it exactly say how much under < 0.10 ?? She only stated below 0.1 which of course < 0.10 is !! Show a better thread or don’t talk about what’s standard in nordic countries please
Like any developed countries I’m sure Sweden, Finland, Denmark and Norway can have lab(s) that might do uPSA if you want but the STANDARD is measuring down to < 0.10 if you go to the public health care which most people do
Even when I had my treatment at Docrates in Finland they only measure down to < 0.10 and they are a well known private specialist clinic in Europe specializing in treating prostate cancer.
So, respect that especially if your not from the nordic countries !!
Hi!
Yes, the standard PSA measurement in Sweden, the lowest is < 0.10. I can only guess that there are lab(s) that might have the possibility to do uPSA but the standard is down to < 0.10 👍😇
The original poster didn't write <0.10 but <0.1. You can't understand the difference between one and two decimal places reporting, aka, the measurement precision.
No big deal, most lay people wouldn't.
They confuse the two, believing they are the same.
Hi !
But just to make it clear. In Nordic countries the lowest they report is < 0.10 and they reference it undetectable, whatever treatment you’ve gone through.
For you I understand the details is important about one, two or three decimals but please don’t argue that Sweden reports lower then < 0.10 if you don’t show proof of otherwise.
And, like I said. There are probably lab(s) as well in Sweden that might do full out uPSA if you can find them and pay for them
Can you produce one lab report printing <0,10 NOT <0,1?
My lab reports from 3, 6, 9 and 12 months are all reported < 0.10
What’s your problem?
With all due respect, I need to see a photo of one of them to be convinced.
Please look at the last line. P-PSA < 0.10 from my regional lab in Sweden.
Still not convinced that Sweden labs report only down to < 0.10 ?
PSA value
Excellent, you proved that your lab is reporting to the hundreds, aka, to two decimal places, which is the definition of an uPSA in the US, because, at least in Greece, there is no option between "ultra sensitive" and "standard" tests. There is only ONE PSA test. If now, you calmly review my previous posts you will find out that nowhere did I questioned the min reportable PSA value in your country. My objection was related to the reported decimal places. In Europe we are not that much after the buck, so as to charge extra for the precision that all mdern analyzers have built in. Goodnight and thanks for your cooperation.
I really don’t know what the proof is, especially when many of your threads and comments is the value of being below < 0.10, e.g. 0.09 and downwards that is the importance and not 0.1n for example
So by that reasoning you say we do one standard, uPSA in your meaning because we have two decimals but don’t measure below <0.10 which for me is the whole thing of uPSA, being able to represent lower PSA then 0.10
And I suppose you are saying that from a mathematical point there is significance between 0.1 and 0.10; you have measured the value to exactly 0.10 but then when you present as 0.1 that is not the same from a statistical point of view?
Measurements have to do with information. Any digit that gets printed must be exact. Statistics are not. The digits there are approximate. Two different worlds. With single decimal reporting you have 0,1, 0,2, 0,3. 0,2 is anything between 0,15 and 0,24. With two decimal reporting 0,20 is 0,20, neither 0,19 nor 0,21, This is the notion of the higher sensitivity, the degree of extra drill down the numbers and them being valid. It is NOT how low it can measure. This is the minimum measurable value and is the point where the measurement accuracy becomes questionable. Accuracy and precision (drilll-down capability) are two different identities that most, not trained, people use interchangeably. They are two different animals.
You said that Sweden and nordic countries measures lower than < 0.10 / < 0.1 and now you know from first hand experience that we don’t.
So, please stop saying otherwise because your not from nordic countries and your definetily not an expert on nordic countries public health care systems and how they measure and report PSA
I’m objecting that your are telling me, a Swedish citizen doing regular PSA in my own country and have been doing it in Finland as Well, that I’m wrong. You perhaps realize how that sounds and you can’t even admit, seeing the evidence, that your actually wrong and that we only measure down < 0.10 and don’t use the ultraPSA to the fullest like you wan’t to have it
Wow that must suck, the need to be always wright
Short answer is yes. More informative answer is I realized <0.010 after my third treatment, salvage extended pelvic lymph node surgery. My RP was nine years ago with uPSA nadir of 0.051; we accepted cancer remained. I tracked the rise monthly to 0.1 when I had salvage RT to prostate bed - nadir 0.075. We missed - my cancer had spread further than guessed. I then had imaging at 0.093 followed by the salvage ePLND.
As to you starting something, this discussion around uPSA reoccurs. While some members share our experiences relying on uPSA, others (some who did not have RP, at least on other who does not face metastasis) rile against our usage.
Within countries and globally we face disparities on PSA testing (I have consulted, tested and been treated in several countries). In US, many medical centers still hold on to 0.2 post RP for determining 'recurrence'. Others, like myself, do not wish to give cancer time and obscurity (I am experiencing this challenge presently with metastatic melanoma).
In your reply to Allen you raise a key question - "...but if it take years/months to reach that in the mean time what are those insidious cells doing spreading around?" As individual patients we have the opportunity to take investigation and treatment actions ahead of common guidelines and more common practices.
When I joined this forum five years ago I was hopeful Health Unlocked was really about looking beyond most common thinking, most common practices. Many members indeed share how they get out ahead of common thinking, doing all they can to slow this beast. Fortunately, just a few members criticize.
I hope this helps. All the best!
Thanks for your updated information, and prayers for your melanoma too!
One person does not a SOC make, as I know all here know? If a person wants to subject himself to treatments earlier than that time at which SOC would suggest such a treatment, that is a personal choice......should insurers be forced to pay for such treatments, thatis a diffeerent discussion IMHO. No study predicts the outcome for any one individual, and no scientists/MDs should make that claim IMHO. Studies do predict the average/probable outcome.
After my RP in early 2020 I was getting quarterly PSA test results for three years, all registering less than 0.10 (FYI - Gleason at Biopsy was 5+5 and then after RP downgraded to 5+4=9 with a 0.82 high Decipher score.
Then a PSA test showed 0.10 so my doc started ultimate tests. First it was 0.099 then in three months it went up to 0.137. So I started looking into salvage radiation.
I do not want to be called a troll and really appreciate everyone’s opinions & comments. But for me I want to know if it is or is not moving upward overtime, and not be surprised again one day with a test showing my PSA reached the 0.10 level.
I take comfort in seeing the details of the detailed PSA test knowing full well that these ultimate measures can be volatile. 😊
It seems like many having had prostatectomy appriciate the uPSA and of course I can understand that, removing the major source of PSA, it might be helpful for your mind to have ultrasensitivity.
For me and my country men we don’t do the uPSA measurements so we look with interest the discussions it creates; the pros and cons 😉😂
Excellent point. After prostatectomy, PSA is far more useful !
I have NOT been tested ultrasensitive. Post-surgery my PSA taken at MSKCC was <0.05. Then after a few years started getting tests by my primary MD; these were reported as <0.1. Then one time it was reported as 0.1 (without the <), which sent me into a blind panic. So I ran back to MSK and once again got a reading of <0.05.
Labs screw up; on a metabolic panel I frequently get abnormal readings, that (with a couple of exceptions) always are normal on repeat. Doctors reading scans can be wrong. Maybe with AI now coming in to second-guess radiologists things will get better (but I won't bet the farm).
The truth is Tall_Allen is correct. No one can micromanage PCa, but you can drive yourself crazy following micro-changes in PSA levels. This cancer has a mind of its own, ready to ambush your hopes of a cure. (And that is what we truly want.) Yes, keep up with PSA levels, but the event horizon is <0.1. Never give up hope, always keep current on treatment, and deal with your mortality as best you can. PSA isn't cancer, but you can allow yourself to be destroyed by, in the scheme of things, insignificant decimal points on a lab report.
or, one can choose to not drive themselves crazy, not be destroyed, and use uPSA, post RP and when not on ADT, as one of several investigative methods to not give cancer time and obscurity.
Yes, at about the same timing. It caused us some concern, but appears to be a lab or recording error. The next and all subsequent tests have shown undetectable as of 144 months post RRP. I hope your next results will show the same as mine.
Yes. My oncologists believe the uPSA trend is meaningful even at low numbers. After prostatectomy, PSA trajectory is usually a very good indicator of cancer growth.
You are relatively young, so unless you have other comorbidities that may shorten your life, you have this "hobby" for another 2-4 decades. With recurrent cancer, that is a long war. As you can see from my Bio, I've been proactive with my treatments. 19 years in, my PSA is again undetectable without any ADT. Whenever my PSA begins rising, I get it checked monthly so I can have the earliest possible warning and opportunity for treatment.
Beware of anyone besides your oncologists trying to tell you what (or when) you should or should not do regarding treatments. Blindly applying clinical studies to individual patients is not good medicine. Especially in prostate cancer, every individual and every situation is unique.
If you don't already have a medical oncologist who has had at least 80-100 prostate cancer patients, I suggest you add one to your medical team.
I also suggest discussing with your oncologist the merits of getting a PSMA scan prior to having salvage radiation.
🐴🤺 Best I can do without a "beating a dead horse" emoji!!
Hi all, I am belgian and in a situation with early rising psa after RP (0,03 at this stage but "doubling" every 5 months which is fast). Victim to the anxiety this uPSA follow-up causes, I tried to get some research done. What I found was that even with psa returning to levels of 0,2 only roughly 25% of these men will ever develop clinical significant desease (can off course be further stratified with Gleason score and adverse features) - justifying the prudence doctors demonstrate in trying to avoid overtreatment and destroying quality of live when not needed. Further to uPsa - "slow" ePSADT (=early PSA doubling time) being 2yrs plus, is a very good predictor to lasting slow progression also beyond 0,2 (which is then a less risky situation). Oppositely when uPSA doubles fast (as in in my case), it is a bad predictor of future progression - only in 40% of the cases, it extends itself to fast conitnued progression and thus is truly a high risk situation. In that case you risk a 60% over overtreatment if you decide to do anything before psa 0,1 in my interpretation. these are the studies/presentations where you can read more about it :
sciencedirect.com/science/a...
youtube.com/watch?v=VjtIRQB...
Two trends are now gaining more and more momentum - further scrutiny on when to use any type of treatment when in the "grey zone" and as much as possible avoidance or postponement of systemic treatment when desease is still in oligometastatic state - here imaging comes into play. And that is where I find it disappointing to hear that radboud in nijmegen has stopped supporting the nano mri technique which was told to be more specific and sensitive even then psma pet. The fact that nobody in the world picked up on this technology and belgium and germany also opted out even during the test in holland, does prove something must be wrong with it ... hope one day they correct it and get things right. Hope this was usefull to share. All the best to all.
My focus is to not be one of the "roughly 25%", nor to be overtreated.
I am most fortunate and most grateful I found my way to Professor Barentsz at Radboud UMC, then salvage ePLND at OLV Hospital Aalst, Belgium, and seven years later holding in what might be apply called "grey zone".
The nanoMRI is laboring through commercial development with SPL Medical, Germany.
I see that when using 7T MRI machines the results are even better but I'm really surprised this is taking so long to be adopted.
pubmed.ncbi.nlm.nih.gov/381...
Probably too expensive for most places, where was this hospital? Just when you thought 3T was finally breaking through 😊
I guess here:
radboudumc.nl/en/news/2021/...
I know there are a few around Belgium as well but they are big and expensive and mostly for research.
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