Rising PSA years after radical prostatectomy

Posted by olanordman @olanordman, Feb 22, 2021

I am 60 years and I had radical prostatectomy on 23rd Nov 2018. I was told out of the 15 lymph nodes taken only one was affected less than a millimetre. It was Gleason score 7B with PSA around 13 at time of surgery but 11 at time of diagnosis in June 2018.

The PSA been fluctuating between 0.09 and 0.18 since surgery on 23rd November 2018
I have no incontinence as well as Erectile dysfunction. I take hypertension medication – Norvask Amlodipine 5mg daily and Cetirizine 5mg for allergy. Below are some of the test results. I have many of these test results – a few below
Jan 2019: 0.11
April 2019: 0.11
June 2019: 0.09
August 2019: 0.12
December 2019: 0.12
April 2020: 0.12
August 2020: 0.11
October 2020: 0.17
December 2020: 0.15
February 2021: 0.18

I am worried the cancer may be returning or might have spread. I met my doctor today and expressed my concerns. He has agreed to refer me to the hospital where I had the surgery. Any suggestions based on this brief history?

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@olanordman

Good information. Have you had radical prostatectomy - postrate removed? I thought without a prostate the bench marck was 0.2 for salvage treatment.

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My info may be outdated, however my understanding is that the PSMA PET scan has a certain level of sensitivity, and will only be able to detect a certain minimum size of met, because the larger the met, the more PSMA so the stronger the signal.

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This thread started out with a rather simple question: After radical prostatectomy, when do ultrasensitive PSA [uPSA] scores require action. I had this same question before my last appointment.
Background information I think I've correctly understood:
1) Historically, PSA post RALP was not considered actionable until it reached 2 [ng/ml.]. However, this was when PSA was reported as >1, 1,2,etc., so this only meant it was measurable (reached 1) and rising (reached 2).
2) Biochemical recurrence is defined as PSA >0.2 using a typical uPSA.
3) With ultrasensitive PSA, some research centers believe it to be actionable as low as 0.03. (Notice we've now dropped almost two levels of magnitude from 2.)
4) My urologist told me, if I understood correctly, he believes we should act [in my case] when it reaches 1.0. (Since I'm always a bit emotionally aroused in these discussions, could it have been 0.1? I don't think so, but....)
5) There is always someone somewhere who will prescribe more diagnostics or more treatment whatever our scores are.
6) All of us with prostate cancer [PC] diagnoses are prone to some level of anxiety regarding recurrence.
Why? Prying minds want to know, especially PC minds (with no reference to political correctness.)
As I understand it, the tradeoff is between overtreatment, just in time treatment, and too late treatment.
-Unfortunately the goal is never to eradicate the PC. Rather it is to delay its progress in the killing journey.
-Overtreatment is not only expensive, sometimes 100s or 1000s of times as expensive, but it runs the risk of using tools too soon, with some possibility they will not be available or as effective when they should be used. It also lowers quality of life (incontinence, erectile dysfunction, muscle mass, hormones, etc.)
-Just in time treatment is hard to identify because there is always more cancer there than any tool can measure, but every tool at its limits has "maybe" as the answer.
-Too late treatment is only evident when people die earlier than necessary, but even with too late treatment PC typically kills between 10 and 20 years, making good evidence hard to come by. uPSA testing has only been around for maybe 25 years? How long has it been commonly measured? (I think some studies have gone back and re-assayed old samples using uPSA methods.)
Anyway, it turned out my uPSA scores were in 0.01x range and the third was as low as the first, so "my time has not yet come." Still, if the third had been higher than the second, instead of back down to where the first was, I would have worried. AND I will now make a point of testing about the same time of day, although I don't think biking or sex are likely to have much effect in my post-prostate world....
Please, corrections are most welcome!

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Just to agree,

"3) With ultrasensitive PSA, some research centers believe it to be actionable as low as 0.03. ..."

Post RALP, my salvage radiation was started when I went from .039 to .091 in three months. I was very comfortable with this. There are those that would consider this to be aggressive, i can understand that.

...and PSMA PET was negative at that time. There is a chart on here posted by someone who's done a lot of research indicating the chance of finding something on the scan with such a low PSA is rather low percentage wise. .2-.49 would only have a 30% chance of being a positive result. Given that, not surprising that .091 would be negative (doesn't hurt the brain to hear it though....lol)

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I am 63. I was diagnosed April 2018. My doc prescribed all the treatments. Lupron, RP, chemo, & radiation.
The goal, in the Doc’s words, was to have zero PSA. And, for four years it was non-detectable. (>0.01). Success.
In my Doc’s opinion, you can’t produce PSA without a prostate. So IF, PSA becomes detected the cancer has returned.

Which It did this past December. So, I underwent more radiation. And if that doesn’t work they plan to put me back on hormone therapy (most likely Lupron)

In summary, it makes sense to me that if your prostate has been completely removed you should no longer produce PSA. If you still have a prostate, you’re gonna have PSA. If you don’t have a prostate but there is PSA present in your blood, you have cancer somewhere in your body.

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In 2021 I was all set to have REZUM therapy when my Urologist decided I should have a PSA test. It came back 4.3. That opened Pandora's box regarding "do I have prostate cancer etc?". I was 79 years of age then. This has led to other tests specifically PSA Free which looks at free antigens to determine risk of PC and prostate MRI which detected a 7 mm lesion at Pirads 4 which means "cancer likely". . I have received conflicting recommendations regarding having a biopsy. Today I still have not had REZUM out of concern for its impact on "possible" PC lesion. So needless to say it has been a somewhat stressful couple of confusing years. I guess if my original PSA had come back 3.9 we probably would have gone ahead with the REZUM therapy. I am now re-assessing everything considering my age. I am sitting tight for now and learning as much as I can before moving forward...if at all.

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You have every reason to be hopeful. Keep watching the PSA every few months. If it gets over .2 or so, get a PSMA PET scan. If there’s cancer it will show. Best wishes. Live your life.

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@spino

This thread started out with a rather simple question: After radical prostatectomy, when do ultrasensitive PSA [uPSA] scores require action. I had this same question before my last appointment.
Background information I think I've correctly understood:
1) Historically, PSA post RALP was not considered actionable until it reached 2 [ng/ml.]. However, this was when PSA was reported as >1, 1,2,etc., so this only meant it was measurable (reached 1) and rising (reached 2).
2) Biochemical recurrence is defined as PSA >0.2 using a typical uPSA.
3) With ultrasensitive PSA, some research centers believe it to be actionable as low as 0.03. (Notice we've now dropped almost two levels of magnitude from 2.)
4) My urologist told me, if I understood correctly, he believes we should act [in my case] when it reaches 1.0. (Since I'm always a bit emotionally aroused in these discussions, could it have been 0.1? I don't think so, but....)
5) There is always someone somewhere who will prescribe more diagnostics or more treatment whatever our scores are.
6) All of us with prostate cancer [PC] diagnoses are prone to some level of anxiety regarding recurrence.
Why? Prying minds want to know, especially PC minds (with no reference to political correctness.)
As I understand it, the tradeoff is between overtreatment, just in time treatment, and too late treatment.
-Unfortunately the goal is never to eradicate the PC. Rather it is to delay its progress in the killing journey.
-Overtreatment is not only expensive, sometimes 100s or 1000s of times as expensive, but it runs the risk of using tools too soon, with some possibility they will not be available or as effective when they should be used. It also lowers quality of life (incontinence, erectile dysfunction, muscle mass, hormones, etc.)
-Just in time treatment is hard to identify because there is always more cancer there than any tool can measure, but every tool at its limits has "maybe" as the answer.
-Too late treatment is only evident when people die earlier than necessary, but even with too late treatment PC typically kills between 10 and 20 years, making good evidence hard to come by. uPSA testing has only been around for maybe 25 years? How long has it been commonly measured? (I think some studies have gone back and re-assayed old samples using uPSA methods.)
Anyway, it turned out my uPSA scores were in 0.01x range and the third was as low as the first, so "my time has not yet come." Still, if the third had been higher than the second, instead of back down to where the first was, I would have worried. AND I will now make a point of testing about the same time of day, although I don't think biking or sex are likely to have much effect in my post-prostate world....
Please, corrections are most welcome!

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I think that sums it up pretty well.

Treat too soon or too late...
Mono, doublet or triplet therapy....
Continuous, intermittent or as I call it, for a defined period, criteria to stop, actively monitor and criteria to start again....
Quality versus quantity....
A very heterogeneous disease both in the cells that are PCa and our own PCa.
Financial toxicity ...
A plethora of treatment decisions that by the very exponential nature of medical research and the prodding nature of PCa for many do not necessarily lend themselves to long term data about overall survival so we use progression free, radiology free and the window for that data is 3-5 years.
The diversity of options the different members of our medical team - urologist, oncologist and radiologist bring to the decision making process.

If there is any good news in this journey it's the explosion of treatment and imaging advances in the last 10 years which may mean most can manage this as a chronic disease.

My case is an example, diagnosed in 2014, surgery, BCR in late 2015, SRT in 2016, triplet therapy in 2017-2018, 4-1/2 years off treatment and now it's back....a Plarify scan shows a single PLN though we know there's more, micro metastatic...I'm sitting with my radiologist reviewing the scan, she's been on my team since 2016, we both talked about not having this conversation in 2016 since no imaging at that time could have seen this lone lymph node. My oncologist and I are talking about whether or not to add an ARI and for how long. I'm taking Orgovyx vice that damn Lupron, side affect profile is so much better...

We know how this journey can end, it's not pretty. So, I'll do what it takes to have a different end to my story.

Kevin

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@kujhawk1978

I think that sums it up pretty well.

Treat too soon or too late...
Mono, doublet or triplet therapy....
Continuous, intermittent or as I call it, for a defined period, criteria to stop, actively monitor and criteria to start again....
Quality versus quantity....
A very heterogeneous disease both in the cells that are PCa and our own PCa.
Financial toxicity ...
A plethora of treatment decisions that by the very exponential nature of medical research and the prodding nature of PCa for many do not necessarily lend themselves to long term data about overall survival so we use progression free, radiology free and the window for that data is 3-5 years.
The diversity of options the different members of our medical team - urologist, oncologist and radiologist bring to the decision making process.

If there is any good news in this journey it's the explosion of treatment and imaging advances in the last 10 years which may mean most can manage this as a chronic disease.

My case is an example, diagnosed in 2014, surgery, BCR in late 2015, SRT in 2016, triplet therapy in 2017-2018, 4-1/2 years off treatment and now it's back....a Plarify scan shows a single PLN though we know there's more, micro metastatic...I'm sitting with my radiologist reviewing the scan, she's been on my team since 2016, we both talked about not having this conversation in 2016 since no imaging at that time could have seen this lone lymph node. My oncologist and I are talking about whether or not to add an ARI and for how long. I'm taking Orgovyx vice that damn Lupron, side affect profile is so much better...

We know how this journey can end, it's not pretty. So, I'll do what it takes to have a different end to my story.

Kevin

Jump to this post

May you find peace and even joy along the way as you continue this challenging journey. You're right. Compared to my sister's untreatable brain cancer, having the most common male cancer with so many treatment options is filled with possibilities, even though they are all inadequate compared to simple good health. Having PSA tests that hint at what's going on, even when we can't pinpoint it, is a lot better than not having it. Without it I would have found out at far worst than intermediate unfavorable....

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@kujhawk1978

I think that sums it up pretty well.

Treat too soon or too late...
Mono, doublet or triplet therapy....
Continuous, intermittent or as I call it, for a defined period, criteria to stop, actively monitor and criteria to start again....
Quality versus quantity....
A very heterogeneous disease both in the cells that are PCa and our own PCa.
Financial toxicity ...
A plethora of treatment decisions that by the very exponential nature of medical research and the prodding nature of PCa for many do not necessarily lend themselves to long term data about overall survival so we use progression free, radiology free and the window for that data is 3-5 years.
The diversity of options the different members of our medical team - urologist, oncologist and radiologist bring to the decision making process.

If there is any good news in this journey it's the explosion of treatment and imaging advances in the last 10 years which may mean most can manage this as a chronic disease.

My case is an example, diagnosed in 2014, surgery, BCR in late 2015, SRT in 2016, triplet therapy in 2017-2018, 4-1/2 years off treatment and now it's back....a Plarify scan shows a single PLN though we know there's more, micro metastatic...I'm sitting with my radiologist reviewing the scan, she's been on my team since 2016, we both talked about not having this conversation in 2016 since no imaging at that time could have seen this lone lymph node. My oncologist and I are talking about whether or not to add an ARI and for how long. I'm taking Orgovyx vice that damn Lupron, side affect profile is so much better...

We know how this journey can end, it's not pretty. So, I'll do what it takes to have a different end to my story.

Kevin

Jump to this post

1st, agree with Kevin and the others above.
I have hope, and expectation of good results, but I am inherently positive, which has +s and -s.
What strikes me from Kevin's chart, is the old saying that the more things change, the more they stay the same.
And I am very grateful for so much research and advancement in tx.
That said, it's that damn Gleason grade and EPE.
RP Aug 2022 Grade 9, EPE, ALL else negative.
90 day postop PSA .19 - failure!
37 IMRT 66.6 Gy to pelvic bed w/ 25 txs 45 Gy to plns.
Together with 4 mos ADT Orgovyx, still in tx; 24 rad sessions completed and in 3rd mo of Orgovyx.
Sounds eerily similar to Kevin 2014/2016.
All dx & tx at center of excellence.
Hoping/praying for "quiet time" post tx.
But it will not be "quiet" mentally.
Best to all struggling with this insidious disease.

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