Hello all, looking for your input here. I know that most of you will say that I’m just chasing a number here, but being an engineer, that’s kind of what I do…😂. I’ve been getting ultra-sensitive PSA done monthly with my bloodwork. My bio is complete so if you have questions regarding my history, everything is in there. My usPSA results since last November are below. What are your thoughts regarding these results:
After Chemo and beginning Zytiga USPSA showed <0.006 for each month since 5/31/22
08/22/23 - <0.006
11/15/23 - 0.012
12/13/23 - 0.015
01/10/24 - 0.021
02/07/24 - 0.022
03/06/24 - 0.027
04/02/24 - 0.034
04/30/24 - 0.037
06/08/24 - 0.048
06/24/24 - 0.045
07/24/24 - 0.053
08/20/24 - 0.057
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MrWonderful4U
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Some will tell you ultrasensitive testing should not be done - for those of us post RP this is deadly wrong.
After my unsuccessful salvage RT at 0.11 my third treatment, salvage ePLND, confirmed six cancerous pelvic nodes including common iliac and para-aortic.
I test at least bi-monthly. Current liquid blood biopsy and imaging at 0.033 have raised a concern.
So show us how the knowledge changed your medical decisions. I am now 3 years after radiation and 2 years of abiraterone and ADT. My regular PSA is negative. What would I do different if me ultra sensitive pSA was positive. Because if you are not going to prolong my life with the info I don’t want to know.
Although I can interpret a non-friendly attitude in this and other comments of yours, I will share a long sincere reply hoping to answer your question.
<0.010 was the value I chose to rely on prior to my RP. My post RP nadir was 0.050.
0.10 was the value set for next action - salvage RT. My salvage RT nadir 0.075.
Eleven months later my PSA was again back up to 0.10 so I went for imaging and subsequent salvage ePLND with the frozen section pathology method. That surgery confirmed six cancerous pelvic nodes including common iliac and para-aortic, and a welcomed nadir of <0.010. However, I did not presume I was 'cured' and began one year only of bicalutamide and set 0.030 as next actionable value.
Twenty-three months after my ePLND nadir of <0.010 and ten months after my last daily 150mg bicalutamide tablet the < dropped.
After eight months my uPSA rose into 0.02X range and then seven months later into the 0.03X range.
I began a supplements regime in hope of taking on CSCs, began lowering my ferritin and went on a low methionine diet. I also began imaging as my pelvic lymph nodes were identified at 0.13 - they had to be there at lesser values.
Gratefully, and interestingly, my PSA has stayed very low stable 0.03X range for thirty-eight months, but I carried on with annual imaging and added liquid blood biopsy testing.
As I have shared in a current post of mine, recent Pylarify PSMA identified 2.3 x 2 cm liver lesion confirmed by a second independent radiologist opinion. My concurrent GUARDANT360 liquid blood biopsy identified a TP53 R428Q biomarker. Both last years imaging and GUARDANT360 were clear,
I am now consulting with a gastroenterologist and have an upcoming MRCP MRI with pancreatic protocol. Yes I hope this is nothing more than a benign cyst and even better a 'false positive' by the Pylarify. But then, there is the TP53 somatic alteration.
Have my actions prolonged my life? Well, given that I was recommded for the STAMPEDE trial seven years ago, and given that my objective is to, if it comes to it, defer long term ADT, and thereby CR and chemo for as long as possible, yes, I think I am realizing a favorable outcome, especially given my cancer made it to the para-aortic.
On the other hand, if this lesion is indeed prostate cancer and I am doomed, maybe my approach has not prolonged my life. Or, if this lesion is indeed another cancer, maybe I will be one of the many who dies with and not from prostate cancer.
This forum is crowded with silly doctors' parrots and irradiation evangelists.
Any nonsense is highly praised, like there is NO PSADT bellow PSA of 0.1, you shouldn't be testing monthly as this causes anxiety and the list goes on and on.
You have already failed salvage RT, I wonder if you would do it again if you knew that the 5 year "cure" rate for your adverse features is 20%-30% tops and there are late SE caused by radiation.
Another field of nonsense is the relation of PSMA PET/CT detection probability with PSA. With 4.4 months of PSADT you are already within the 40%-50% detection bracket. I wouldn't wait any further over PSA 0.1 to get scanned, if you haven't done it already that is.
Well written. My doubling time over the past five years after stopping one year of bicalutamide has been 'very slow', from <0.010 to 0.03X. Yet my current GURANDANT360 liquid blood biopsy has identified at TP 53 mutation - last years was Not Detected. And concurrent Pylarify PSMA has identified a lesion - confirmed by second opinion. Further investigations underway.
Perhaps a difference in thinkings is that at least for me, I will no longer give this beast time and obscurity, and my intent is to delay any additional ADT and thereby possible CR and chemo for as long as possible. All the best to all of us fighting this beast and the disparities in diagnosis and treatment we face.
In the UK the current NHS guidance is for psa to rise to 0.5 before a PET scan is useful my private MO suggested a minimum of 0.2. Just wondered if this is the case how useful is usPSA?Need to update my bio as my latest psa was 0.53 and am just waiting on latest PET scan report next week.
Well, if you value low your health/life, not useful at all. Eventualy, we will all die some day, so how "useful" is the PET scan to start with? In ancient Greece those that professed such theories were called σοφιστές (sophists) and their arguments σοφιστείες (sophistries).
Now from theory lets get us to some tangible evidence:
By having frequent usPSA counts, the OP can have with the outmost certainty (if you understand what a regression coeffisient of 0.99 stands for) a derived PSADT of 4.4 months, which even the silliest of docs will agree that is alarming and needs to be addressed for. If he had single decimal place reporting in 3 months intervals he wound have got this message after a year at the earliest. And to borrow an expression from NanoMRI, it isn't wise to grant the beast obscurity to proliferate.
Your "useless" comment is your personal opinion that is not supported with medical training nor personal experience with mets, and your personal blog link is unrelated.
I am a believer more data the better and if you find something in the tests it can help one focus on a solution. Solutions are out there or will be soon. Staying vigilant and positive and focusing my learning helps me cope with the beast.
I understand- we all approach these things differently. I guess at age 78, I probably have a different perspective from a 60 or 70 year old. I am looking for worry free life for a couple of years and “what will be will be” then. Mean time carpe diem! And crack open another bottle otherwise the kids will drink it😎
Only if you let it. Also isn’t data what leads to research? For example gene mutations like ATM. Not actionable at the time but it is now after researchers collected enough samples of data showing a target to treat.
I can remember a time when i got diagnosed in 2013 there was no genetic testing offered because there was not treatments but now there are treatments. I was lucky five years after my RP slides were still valid and the data that was pulled out wasn’t actionable back then but my MSH6-Loss qualifies me for positive results from pembroluzumab treatment
So my morrow of the story is collect the data wether it us actionable or not.
So one can have the test when there are treatments for it. Having a test when there are no treatments available for the outcomes leads only to anxiety, not to breakthroughs. Breakthroughs are generated by clinical research, not by giving useless tests.
My frequent uPSA testing, annual imaging and liquid blood biopsy testing keep me from having unnecessary and avoidable anxieties, from becoming a hypochondria, and prevents under treatment.
But then, as I share, I had mets confirmed in my para-aortic pelvic lymph nodes by my third treatment, ePLND. Perhaps, I would feel differently if my experience were a one and done and I was inclined to preach medicine well over very short skis.
Test is only useless if you have no interest in wanting to know at the earliest point.
I am in that exact situation right now after being undetectable for12 years. My PSA is now rising and doubling every 3 months. I figure will be at .20 next month and get scans at The James.
I am 70 yrs old, active, with grandchildren and good life which I care to continue. Information is both a tool and a weapon I can use to make decisions to both my future and ways and means to combat this enemy of mine.
Tall Allen, for many years I have valued your opinions but as of late my perception is that you have become intolerant of others opinion and or choices if they are not of yours.
In my 16 year battle with this and religiously following research, studies and papers, I have found the progression of knowledge to this disease is very fluid.
When I was first diagnosed in 2008 with mostly 4-3 7 Gleason, almost all cores 80% or more and mostly high grade, 9.8 PSA and after RP I was staged 3B seminal invasion. I immediately biometrically failed. I had savage radiation and then 10 yrs of lupron and then said heck with it and went surgical castration. Now its back.
We had very little tools and choices in 2008. Now we have a great many more...Thankfully!
Most of all, I learned that this cancer and its journey is very very much personal. It affects each person differently both physically and mentally.
I respect your knowledge, your opinion and believe you are well meaning.
Your "interest" isn't a good enough reason to have a test. For example, I'm sure your "interested" in whether you have plaques in your brain , yet you don't go out and get a brain MRI just based on your "interest." Tests should only be done when a therapy can potentially change - that is a basic principle of medical science.
I only have one opinion - science is the only way to manage illness in the body. You obviously have a different opinion, so we will not agree, and I do not respect other opinions. I also believe in holistic treatment - body, mind and spirit. For mind, I advocate mindfulness, psychotherapy, and medication if necessary. For spirit, I study religion and philosophy, listen to music, look at art, read and write books, and practice being in a world that is bigger than myself. While every person can and should find his own way with mind and spirit, I only believe in science for the body.
I am scheduled in 2 weeks and I promise you that the order that went in will be the ultrasensitive test. I'm guessing those doctors want to know,
So you figure I am wrong for having a test that is routinely ordered by the 3 different prostate cancer oncologists seen over 16 yrs.
What you do is your business but don't tell me or my doctors we are wrong,
I am not telling you, your wrong because you think its useless, maybe you don't care to know because of the anxiety or whatever dis-concern may cause you or you just don't find any value in the early numbers the test can provide. That is your business and see nothing wrong with that, for you.
I personally take the trajectory and other information provided, rationalize it and plan strategies for what may ensue.
BTW I have advanced prostate cancer that is not going away this is known. The odds for it to return were very good based on my history and pathology. Sadly that day maybe here. I am thankful for all the new treatments and that I made the 16 yrs to get to them.
I have no symptoms or any reason to believe I have plaque on the brain. Therefore I see absolutely no reason to get a very very expensive MRI of the brain nor believe my doctor would put in an order for one.
I figure I have reason to get an inexpensive PSA test which has given doctors and myself advance warning to its return.
Right On, Tall_Allen! The people in this world who fail to understand the value of science and how it works is very frustrating. It would be nice if posts suggesting treatment and evaluation on this site were strict science based.
what is not science based about utilizing ultrasensitive PSA? All the docs and cancer centers that prescribe it are wrong? All the labs that offer it are wrong? All the insurances including Medicare that pay for it are wrong? All us patients who utilize ultrasensitive testing are wrong? I have shared a very detailed explanation of how I use this testing - can you share what is working and not science based about my experiences?
This is a very good point. It also proves you are wrong about uPSA testing being useless. In 8/2021 I had 8/12 cores positive. MRI showed two PIRADS 5 lesions with ECE and bi-lateral SVI.
I was preparing to make many important decisions regarding finances, retirement, relationships-all aspects of my life.
RP 11/2021. Fortunately pT2 pathology. Been <0.03 ever since.
Since then I've been active in farming, my excavating business and life in general and enjoying every minute.
If my PSA begins to rise, I will not wait for my PSA to reach 0.1 to put some of those decisions into motion.
I won't put my head in the sand when it comes to leading my life.
Thanks for proving my point. You will do nothing unless your PSA reaches 0.2. You won't be able to find a competent doctor willing to give you salvage radiation for minor fluctuations in your uPSA. Doctors take an oath to do no harm, even if they have to deal with an anxious patient.
I am not at all agreeing with you - nice try though.
Why did you skip over my comment of my experiences with competent docs treating at lower than 0.2? Again, I was treated at 0.1X , twice. These experiences of mine negate your comment "You will do nothing unless your PSA reaches 0.2".
Frequent uPSA testing means I do not have to wait until 0.1 or 0.2, giving this beast time and obscurity.
Monthly uPSA testing after my RP nadir of 0.050 showed a steady rise to 0.13 when I had salvage RT.
Then monthly uPSA testing clearly showed a steady rise from my salvage RT nadir of 0.075 to 0.11 when I had salvage ePLND.
And uPSA testing has clearly showed rise from my salvage ePLND nadir of <0.010 though 0.01X, 0.02X and into 0.03X range. As I am sharing, current imaging and liquid blood biopsy testing have raised concerns worthy of further investigations.
It is a shame the guideline to speak from one's experiences was recently dropped.
How good for you Allen that you do not face metastatic prostate cancer and ADT as you were 'cured' by a single focal treatment.
If you bothered to read my post, you would see I wasn't talking about treatment decisions. The science says if my PSA reaches 0.05, it means I still have pca to some degree. If recurrence becomes likely, that information has value to me well before treatment is appropriate.
I read your post and replied. PSA below 0.1 or 0.2 after prostatectomy doesn't mean anything. Medical information only has value if it can result in a treatment decision. Otherwise, it only feeds anxiety and may lead to the harm of overtreatment. That's why researchers did those RCTs - to spare patients that harm.
Which medical specialist utilize uPSA to monitor PSA of their patients? I've listened to many interviews of the biggest researchers and I've never once heard of uPSA being used.
Thank you all for your replies. I understand that most people (physicians included) say not to test using usPSA. I prefer to watch numbers however. What I see in my data is a very consistent elevation in my PSA. If it were bouncing around (up and down) I wouldn’t be nearly as concerned. I do get a PET every 3 months and so far nothing has shown up.
Perhaps an anecdote, prior to my diagnosis, my PSA bounced between lows of 3.X to high of 20.2 and back down by more than half over years Various reasons were given (theorized). Looking back I suspect it was at some level reflective of cancer activity.
Since my salvage ePLND and over the past five years I have seen a few single digit bounces in hundredth place, and many in thousands. It is the trend I look at based on monthly/bi-monthly testing.
I have been covered for 2 PSMA PETs....once after Gleason 4+ 5 biopsy, and once again after 2 years had elapsed, PSA had risen from 8 to 13, and RT had been scheduled. Kaiser charged $5000+ for the Pylarify tracer, and another $5000+ for the actual equipment use and tech and radiologist time. Fortunately, only a hypothetical bill, as our Kaiser plan covered almost all.
It seemed to me that the ucsd drs said that the scans run about $3400 and I know ucsd has their own but source me out because the wait is so long and I still have to wait about three weeks at quest imaging…
Not sure what you mean by " company is self-pay" ? I have been covered for 2 PSMA PETs....once after Gleason 4+ 5 biopsy, and once again after 2 years had elapsed, PSA had risen from 8 to 13, and RT had been scheduled. Kaiser charged $5000+ for the Pylarify tracer, and another $5000+ for the actual equipment use and tech and radiologist time. Fortunately, only a hypothetical bill, as our Kaiser plan covered almost all. However, I doubt they are going to approve the type of periodic scans you seem to be having.......only if some PSA movement that NCCN considers a significant action point. My understanding that Medicare might be that way also.
Its not about the numbers - its about the change in numbers. If you have a smooth progression (make an Excel graph) then you know where its going. If you like bi monthly utra sensitive PSA - then good for you - but its not going to change anything.
I am sorry but I dont see any prevalence for insults on this site, and my post was certainly not meant as an insult. The point is that the PSA changes - at least my PSA, are slow and predictable - see my update post. And for me - the next step is a round of Chemo. Chemo is not good at slow growing tumours, so SOC says wait until they get bigger. For me that is PSA = 2.0 or more - which is predicted for April next year. So in the meantime I can live a happy life.
I agree with HAWK56 and find his plot useful. Down in the regions of PSA=< 2.0 there are a number of factors which can give the PSA values a "bumpy ride"
Appreciate the reply. My comment was in reference to your statement "If you like bi monthly utra sensitive PSA - then good for you - but it's not going to change anything." Sadly there is a prevalence by some to insult/attack when one thinks differently, takes different steps.
I read your post and bio, as I do before I reply. All the best! I have just posted a long reply to Grandpa4 - explaining why I test as frequently as I do what I have done/am doing.
It is wonderful you live a happy life. So do I. Following my RP in January of 2014 I began RV'ing and travel US Rockies and high plateaus from Texas to Montana and back every year. Prior to Covid I wintered in Europe, based in France, but in March 2020 my long-stay visa was collected and I had to leave ; now I winter near my grandkids fishing on Texas coastline. All the best to all of us!
Like you I like numbers! I plot mine on a semi log scale - the most useful parameter is the doubling time which is easy to estimate on a log scale! Doing it every month seems rather frequent - I hate mine being done I would rather not be reminded - every three months is more than enough for decision making.
The log graph gives a reasonably straight line of best fit and allows a bit of prediction as to where you are heading over time.
Just eyeballing your numbers I see they are low but on an upward trend. What you do depends on your age, general health, your philosophy and how much shit you are prepared to tolerate from drugs etc in exchange for an extra year! My vote is to aim for quality over quantity - spend life doing what you want rather than on doctor & nurse visits and putting up with side effects.
By the way I rather agree with the ‘Just for’ post. A level of 0.1 is arguably an important staging post. With the proviso that you should be clear what are prepared to do with the results of further tests/scans if and when you get them.
Got the same issue, was, <0.02 first 2 years then was 0.016-2022, 0.032-2023, all the next was here in 2024, Jan 24 0.038, went down April 24 0.035, back up Aug 1, 24 to 0.045 and then 0.051 as of Aug 15, 2024. These are annual from VA physical mostly and some from private urologist I had prostate removed July 2019 just hit 5 year mark. Next test is VA sept 22, 2024 with VA and private Urologist Nov 1, 2024. if i goes up again getting PET scan.
You've seen the various posts, pro and con, about UPSA.
Not to bore the forum members, but my clinical history is one of aggressive cancer - GG 4, GS 8, 18 months to BCR, PSADT and PSAV
In February 2019 my new urologist switched to USPA, you can see from the attached chart that the first test came back at .326, yikes. We retested (I asked him to, he didn't volunteer it, one of the early signs I should have fired him), that dropped as did the next one.,,,
What's interesting is even when I fired him in April 2023 and switched to an oncologist, he too uses the USPSA. Also, none of our decisions on when to image and when, what and how how long, have been based on USPA levels such as you describe.
My medical team and I have had defined decision criteria about imaging and treatment, three or more continuous PSA increases spaced two to four months apart, PSA between .5-1.0.
That decision criteria came into play in early 2023 and is what we are using now that I've completed the SBRT and 12 months of Orgovyx.
My decision criteria:
Fits my clinical history, aggressive PCa...
Enables me to have greater probability of locating it when we image thus informing the treatment decision...
Provides a longer off treatment cycle period...
Does not increase the risk of my PCa getting out of control...
Given my PSADT and PSAV, I know that increases the probability of imaging locating the recurrence, another factor playing in my decision criteria.
From my clinical history you can see there were more than one occasion I could have reacted to PSA results and didn't because of the decision criteria I had in place. That enabled me to enjoy 4-1/2 years off treatment. How long will that off treatment be this time, who knows, off to a good start though!
My PCa is not your PCa, so apples and oranges. When my PCa rears its ugly head my USPSA values do not look like yours. Still, think you need to think about having your decision criteria about what constitutes clinical data sufficient to inform a treatment decision.
There is conundrum in our decisions, treat too soon with all the side effects, treat too late...
Given the heterogeneity of this damn cancer, that is a choice each of us has to make.
I'll close with "If those were my PSA values, I would be doing nothing but labs and consult every three months..." Alas, they are not!
Definitely a steady rise but not much you can do yet. Once you hit 0.2 you can have a PSMA scan and see what’s going on. For me it showed tumors on two different ribs that I treated with SBRTand PSA dropped to almost undetectable. Latest test was 0.07.
Hi. I am a wife to my 78 year old spouse and I try to educate myself but the PSA is a difficult area for us. His nadir, after radiation and 19 months of ADT was 0.3 and it rose to 0.4 in the last test. I was really worried and his radiation oncologist did impart this nugget of wisdom. " It is not the number, but rather, the trend. We will see what the next test results are and take it from there." I would love not to have to worry about this, but worrying is in my nature.
Than you shouldn't worry. Rising PSA with T coming back after ADT is the norm around here. Wait to see if it keeps rising after T has stabilised. This may be worrysome.
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