After 3.5 years of undetectable PSA and 2 years of ADT vacation, my most recent blood test showed a PSA of 0.01. That’s as low as my test will measure, but still detectable. Since my prostate was completely fried by radiation, this has to be senescent cancer cells waking up.
My MO agrees, but says to wait to see where it goes. If PSA goes up to 0.2 we will do a PSMA Pet scan. A word of caution he gave me is that since my T has not recovered very much since ending treatment (bouncing between 40 and 75), the cancer cells waking up may be castrate resistant.
Time to get my act back together in terms of nutrition and exercise.
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Canoehead
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I showed your reply to my wife, and she said “God bless him.” I told her we are all in this together, but the other truth is that we must all ultimately face this demon by ourselves. Bless you and happy holidays, my brother!
I'm not sure why you are using a test that is that sensitive - it makes no difference in your treatment and increases anxiety. If your T won't recover, what is the advantage of a vacation?
T between 40 and 75 is too low to make much of a difference with anything, including the hot flashes. Other than placebo effect of course, which is just as good as the real thing.
.0.01 is nothing. Getting ‘your act back together in terms of nutrition and exercise’ as you put, it is orders of magnitude more important.
Yes, and bone metastases produce PSA. That test makes no sense to me, but neither does calling his therapy "curative." Goal should be long-term maintenance.
Tall Allen, If the goal is long term maintenance, would you say that an ADT vacation is a bad idea? My PSA has been undetectable for more than 2 years. Recent CT Scan shows no Mets. Still on Eligard and Zytiga and Prednisone. I would love to get away from the fatigue and muscle loss of ADT if possible, but I don’t want the cancer to start spreading around again. What would you do?
From what I’ve read, taking a ‘vacation’ brings a definite risk of reoccurrence. And if you go back on the ADT treatment again there’s a chance it will not work anymore. I figure the hot flashes and occasional fatigue are the price I’m paying for an undetectable PSA and hopefully many more years. As far as I understand it, my MO wants me to stay on Lupron/Zytiga until it fails…no vacation us planned.
You stay the course....rolling the dice seems to always come up snake eyes in our situation.....im doing adt/ erleada till it stops working...then im going on a permenent vacation.....the qol on adt is as bad as i want to feel....so i cram as much living into eachday ad best i can and aching bones allow......and even a little excercise.....😜
Tall Allen: I’ve been on a two year drug holiday and have had undetectable PSA and Testosterone the entire time. Do you think I should be on Lupron etc. anyway?
I understand what your doctor is saying about castration resistant cancer. When you said your PSA did not recover you are referring that it has values lower than normal. I assume 40 to 75 are higher values than when you were in ADT and abiraterone.
I had a similar situation my PSA increased when T went to 35 and 40 three years after stopping ADT .. One shot of Firmagon brought T below 20 again and the PSA decreased and remained stable for more than 1 year. It added around 14 months of progression free survival.
I think you have 2 possibilities, let the PSA go up and try to detect where the cancer is located and then try to control it with direct therapy or go back to ADT bring the testosterone down and see what happens with the PSA.
Since you had radiation, there is likely benign prostate material left, which could account for a detectible PSA reading, or it could be senescent PCa cells becoming active as T recovers (I'm not sure why your MO calls these CR-- you wouldn't know unless you went back on ADT). If it's benign prostate tissue, your PSA would level off and fluctuate around a certain level. If it's senescent PCa cells becoming active-- which would grow exponentially-- you would likely see a PSA doubling-time less than a year (or even shorter if it is aggressive). My MO says don't do anything until PSA reaches 0.5-0.7, then do PSMA imaging to determine where it is, and go from there.
I like your reasoning. My MO didn’t say I was castrate resistant, but he mentioned it as a possibility. He’s a full disclosure guy. He also said a 0.01 reading could be a lab artifact. His bottom line was wait and see what develops. Still it was a wake up call for me, as I’ve gotten way to complacent.
I feel you, nothing more anxiety-inducing than coming off ADT after radiation treatment to see where PSA goes after being n/d, even though there’s no actionable treatment until it’s detectable by PSMA imaging. Mine went from n/d to 0.04, but leveled off there as T recovered quickly to 700. Give it some time, eat well, exercise, and enjoy being near n/d.
Thanks for your information. I had high Gleason score, Firmagon and radiation as well and also frequently urinate. Your current PSA is similar to mine hopefully we will both be around for many years.
I’m in the same boat, after 6+ years of being undetectable PSA became detectable again. I too use an US PSA test and always have per Snuffy Myers. They don’t produce anxiety for me and knowing early that my cancer has come out of dormancy has given me opportunities to discuss treatments going forward with my MO Dr. Sartor, who also sees value in US test. My game plan per Sartor is to continue testing every 2 months and when I hit 0.1 to get a PSMA scan at Tulane. Sartor said it’s a little lower PSA that he would typically recommend for a PSMA scan but seeing I’ve been on ADT for so long and I’m heavily treated he’d like to do one sooner.
He said someone as heavily treated and who has been on ADT this long - Lupron for almost 8years and Xtandi for over 6 years could have tumors that produce a suppressed amount of PSA. And he’d rather catch something earlier rather than later and treat it. That’s always been my strategy since dx. Hit it early and hit it hard - Snuffy Myers strategy too.
0.1 may not be sufficient for the Pyl scan to find anything. If no Mets are found will he want to continue to let PSA rise and do another scan at a higher PSA value, like 0.5 or 1.0?
I fully respect what Tall Allen has said since he appears to be very knowledgeable and I do take his replies to heart. I was on intermittent lupron ADT for 10 years with a vacation from anywhere from 9 months to 18 months and this was done to help with the effects of the lupron. Also to delay castrate resistance and I feel that it did work. If you have a shot or 2 after your vacation how do you know that your testosterone won't go down go and that your PSA will not go down. In my case it did go down that's why I had several vacations. 40 to 75 testosterone is not undetectable but I thought that .0 1 PSA was undetectable. The decision to resume the Lupron ADT was when my PSA doubled in a 6 month period. Google the double time since you will learn lots and make sure it 6 months is correct, but I think it is.
PSMA scan at anything below 0.5ng isn't very helpful ... In my opinion! Read the results of the studies which led to its use and approval for yourself! Be educated in your interaction with your Oncologist!
But it is a perplexing situation to have a responsive cancer as indicated by the hormonal therapy knocking it down, even if for a time. What's worrisome then is what to do if the PSA readings begin to move... Of course reintroducing ADT is the best course, but then that would in all probability make the PSMA scan ineffectual as well at a very low PSA. So what to do ... What to do indeed!?
So I'll ask then what my brain is having a hiccup digesting. My misfortune is I didn't have to wait until PSA rose as it's DT was a rocket, <2 months. But in cases where PSA begins to climb, is it prudent to allow it to do so, for a better efficacy in scanning so it can be seen? This allows the dastardly micro cellular activity to do it's dirty work. Of course in my mind, the need or use of the PSMA scan would be to eliminate the thought of any treatment other than systemic therapy being beneficial to the patient. No?
Or do you just jump back on the wagon of ADT to knock it out and not worry about where it is, or that any spot treatment would work better? Every turn I find is always a conundrum of choices. Picking a poison, so to say...
Unless it's a misprint, a PSA reading of 0.01 is still considered undetectable. This 'range' is at the bottom of the scale and could have a +/- error of a small percentage (0.01 to < 0.03).
Multiple consecutive readings over time (at least 3) need to trend upwards to be reliable. One test isn't conclusive at these lowest values.
I get that your T hasn't recovered but that could be the result of the ADT time and type you were getting.
Recovery from ADT can take a lot of time. I went on vacation and it took 18 months to get back to 'normal' readings.
However, I note the comments by 'others' - many worth considering.
I got a PSMA/PET scan after a recurrence - the value(s) needs to be higher than where you are now positioned.
With initial Gleason 8 I would advocate for early PSMA PET/CT. I got my PSMA PET below 0.2 and 3 lesions were evident that were not by other imaging. This is war, strike early.
I have been reading with great interest the posts of Mateo beach, RSH-1 and Jac_j_sp concerning adaptive theory and BAT. It is not yet SOC but looks very interesting in my mind.
My current thinking is that once I can get to undetectable that I would start cycling thru the various products they are experimenting with to try and keep the PCa dazed and confused for as long as possible.
We present mathematical analysis of the evolutionary dynamics of tumor populations with and without therapy. Analytic solutions and numerical simulations show that, with pretreatment, therapy-resistant cancer subpopulations are present due to phenotypic or microenvironmental factors; maximum dose density chemotherapy hastens rapid expansion of resistant populations. The models predict that host survival can be maximized if “treatment-for-cure strategy” is replaced by “treatment-for-stability.” Specifically, the models predict that an optimal treatment strategy will modulate therapy to maintain a stable population of chemosensitive cells that can, in turn, suppress the growth of resistant populations under normal tumor conditions (i.e., when therapy-induced toxicity is absent).In vivo experiments using OVCAR xenografts treated with carboplatin show that adaptive therapy is feasible and, in this system, can produce long-term survival.
I talked about this with my MO, and we agreed. Prior results from same lab were <0.01. That’s undetectable. Most recent results dropped the “<“. We agreed it could be a lab artifact, it could be a recurrence, it could be castrate resistant. We will wait and see, but while part of me has grown mellow as the result of “surviving” cancer, another part of me is as nervous as that old cat on a hot Tin roof.
This disease is a m—-f—-er, physically and mentally. Stay strong, my brothers.
Labcorp in the US has been monkeying around over the past few years on what they "report" for ultrasensitive PSA. From <.003 up to <.006 then up again to <.014.Then in summer 2021 back down to <.006 where it is now.
So this is apparently the same test all along but they just cut off where they "report" to.
I've read here that Australia reports down to <.000 and calls that undetectable.
In the future perhaps we'll measure down further to .0000 or .00000
So we can't be calling all of these undetectable.
My guess it's to the hospitals benefit somewhat to tell you your undectable after treatment when in fact we can see you still have it and even that it's progressing. I would call that a bit of dishonesty.
Lets be honest and accurate in our descriptions.
I also chased down and scheduled a test with doctor at Duke, he was involved in developing a test to .000 in the US. He said it was a good test but not economicly successful, so it was discontinued. They only report to <.01 now on their ultrasensitive test.
Sartor’s logic and plan are sound for you. Early baseline PSMA PET scan may be valuable information whether or not negative. Repeat if and when 0.2 (or before).
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Undetectable!!
Undetectable
Officially Undetectable 
Undetectable PSA with bone lesions? 
