Getting PSA results with impossible fluctuation: What's up?

Posted by bobbyshay @bobbyshay, Jan 29 11:57am

Dx with stage 1, low risk, Gleason 6 after PSA level 6.19 led to biopsy.
I've been getting psa test for 15 years and it's always been in the 3 range. Since my Dx it has been in the 5's, Yesterday I got a result of 4.8 and I was happy. I have to clarify that I didn't check my results last time in August. But I got a test from the VA primary Dr in Sep that I did check. So the urology clinic called and said my level went way up and I was like, say what?!!? I said no it's actually been going down. She proceeded to tell me the level in August was 0.21. I proceeded to tell her, that's not possible. My VA level 1 month later was 5.3. Now my urologist wants to see me in a month. Anybody ever heard of something like this?

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Well...

As others have indicated, PSA is not a definitive answer...

So, how do I know...!?

But, to my point, DRE and PSA may not necessarily provide a definitive answer to your question, do I or do I not have....if I do, what other clinical data do we need and how do we go about collecting it? If I do not, what is our plan for future monitoring?

Depending on your urologist, he, she, may be open to your questions and willing to explain their rationale for using or not, if not, well, for me, that's a red flag, move on...

PSA is a starter, clearly, looking for trends...keep in mind that consistency is important., same lab, same time of the day, same ire-draw routine 24-48 hours out...

I think the key is to have multiple data points using different means.

Some may be:
https://www.urotoday.com/recent-abstracts/urologic-oncology/prostate-cancer/163806-a-sensitive-and-specific-non-invasive-urine-biomarker-panel-for-prostate-cancer-detection-beyond-the-abstract.html
https://www.medpagetoday.com/urology/prostatecancer/118778
https://www.google.com/gasearch
https://www.google.com/gasearch
https://www.google.com/gasearch
Before a biopsy, consider this...
https://pmc.ncbi.nlm.nih.gov/articles/PMC4495493/
and this...From the Prostate Cancer Foundation website on screening...

...DRE cannot feel prostate abnormalities in the anterior (forward) area of the prostate, away from the rectum, and is often most useful only when the prostate cancer has grown sufficiently to cause cancer that can be felt with a finger. The DRE is no longer recommended as a standalone screening test for prostate cancer.

So, talk with your medical team, discuss a plan to collect sufficient clinical data to determine if you have PCa and how you are going to determine that.

and if not, what's the surveillance plan going forward!?

Kevin

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Profile picture for jeff Marchi @jeffmarc

@brianjarvis
I was having dinner with one of my wife’s best friends and her husband. He is 90 she is 77. We had talked 16 years ago when I was having my prostate cancer surgery. He was talking about the fact that he had a prostatectomy as well, But didn’t mention that it was nine years before. He is an OB/GYN, who just retired at 89.

25 years ago he was told he had prostate cancer because he had a 3+3 Gleason score. Because he was a physician, he wanted the best surgeon in the country to do his prostatectomy. Turns out his prostate was almost 200 cc. He found a surgeon At Johns Hopkins that said he would do nerve sparing. He was an innovator in the technique. He went there to have his surgery and it was a fiasco. Nerve sparing was not done, and he thinks that the surgery was done by a trainee. When he asked to see the medical report on the surgical procedure, he received a report that was about a half a page long. As a doctor, he’s familiar with having reports that are 10 pages covering every single step of the surgery. To say he is furious, would put it mildly. After surgery, they biopsied his prostate and found out he was only a 3+2 something I’ve never heard of.. They should’ve never touched him. This kind of treatment is what led to the ending of PSA testing.

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@jeffmarc I attended a webinar of urologists a few years ago. Many of them were sadly commenting on how many thousands of unnecessary prostatectomies they had done over the years for 6(3+3) disease.

But, doctors will often do whatever they’re asked to do. I knew a guy who had a bilateral orchiectomy because he didn’t want to suffer the low-testosterone side effects of Lupron……

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I recently was diagnosed with prostate cancer. Total score was 3 + 3. Thankfully I am currently on watch status. As a lymphoma survivor I am taking it in stride.

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Profile picture for jeff Marchi @jeffmarc

@brianjarvis
I was having dinner with one of my wife’s best friends and her husband. He is 90 she is 77. We had talked 16 years ago when I was having my prostate cancer surgery. He was talking about the fact that he had a prostatectomy as well, But didn’t mention that it was nine years before. He is an OB/GYN, who just retired at 89.

25 years ago he was told he had prostate cancer because he had a 3+3 Gleason score. Because he was a physician, he wanted the best surgeon in the country to do his prostatectomy. Turns out his prostate was almost 200 cc. He found a surgeon At Johns Hopkins that said he would do nerve sparing. He was an innovator in the technique. He went there to have his surgery and it was a fiasco. Nerve sparing was not done, and he thinks that the surgery was done by a trainee. When he asked to see the medical report on the surgical procedure, he received a report that was about a half a page long. As a doctor, he’s familiar with having reports that are 10 pages covering every single step of the surgery. To say he is furious, would put it mildly. After surgery, they biopsied his prostate and found out he was only a 3+2 something I’ve never heard of.. They should’ve never touched him. This kind of treatment is what led to the ending of PSA testing.

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Hi folks. Just to repeat. According to my uro and my own research fully one third of Gleason 6(3/3) pts require intervention over 5-10 yrs. Ie one out of three. So yes you should NOT intervene on all Gleason 6 pts.BUT. as I've previously outlined I went from Gleason 6(3/3). To 7(4/3) with nasty pathology. PLEASE folks. As imperfect as diagnostic testing is currently don't throw baby out with bathwater.

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Profile picture for dmatisoff @dmatisoff

Hi folks. Just to repeat. According to my uro and my own research fully one third of Gleason 6(3/3) pts require intervention over 5-10 yrs. Ie one out of three. So yes you should NOT intervene on all Gleason 6 pts.BUT. as I've previously outlined I went from Gleason 6(3/3). To 7(4/3) with nasty pathology. PLEASE folks. As imperfect as diagnostic testing is currently don't throw baby out with bathwater.

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@dmatisoff
Actually, they say that 50% of people on active surveillance end up having treatment because it advances. It did with my brother after six years.

Getting an MRI and a fusion biopsy really has become essential. Of course people can get a PSE test, which sort of eliminates the question about whether a biopsy is necessary.

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I believe a 23 year Eurostudy of >100,000 who had regularly got PSA tests showed a 13% reduction in disease specific causes of death. If regularly followed numbers jump up and it cannot be explained retest at a reasonable interval. IMHO: Then the EpiSwitch ( 'PSE': Prostate Screening Epigenetic) test should separate the "...wheat from the chaff"...a multiparametric 3T MRI with dye enhancement might then be the next step .....an initial 'Gold' standard transperineally ultrasound
MRI fusion might be next.

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Profile picture for heavyphil @heavyphil

@brianjarvis When you read that study, you really have to wonder where those conclusions came from:
There was only ONE man in 1000 screened who benefitted from PSA screening 14 yrs after diagnosis…
I think we know that numbers can be ‘massaged’ to fit a certain outcome but this was a real fiasco.
I, too, was one of those men who read this flawed study and stopped my testing for a full year; don’t know if it would have made a difference in my case but I am sure it did - for the worse - in many others. Thanks for the article!
Phil

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@heavyphil I don’t get it. Why would you stop PSA testing. I think it is a great tool. It doesn’t cure or diagnose but it can monitor progression once you have established a diagnoses and degree of the condition.

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Profile picture for jeff Marchi @jeffmarc

@dmatisoff
Actually, they say that 50% of people on active surveillance end up having treatment because it advances. It did with my brother after six years.

Getting an MRI and a fusion biopsy really has become essential. Of course people can get a PSE test, which sort of eliminates the question about whether a biopsy is necessary.

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@jeffmarc correct. 25-50%. Which is btw mayo and nih call Gleason 6 as cancer!))

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Profile picture for dmatisoff @dmatisoff

@jeffmarc correct. 25-50%. Which is btw mayo and nih call Gleason 6 as cancer!))

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@dmatisoff
UCSF did a talk about active surveillance 5/2025. Here is an interesting slide about the increase in Grade Group for 899 GG1 active surveillance men.

Is even 50% correct?

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Profile picture for tdoriausername @tdoriausername

@heavyphil I don’t get it. Why would you stop PSA testing. I think it is a great tool. It doesn’t cure or diagnose but it can monitor progression once you have established a diagnoses and degree of the condition.

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@tdoriausername Well, that was the problem - they recommended to stop PSA testing because too many men were being ‘harmed’ and it only prevented one man in a thousand from dying from the disease.
We know all too well the result of this misguided recommendation.
Personally, I think this was in response NOT to so many men wanting their prostates removed over cancer fears, but an attempt to stop so many unscrupulous or misguided urologists from telling men ‘You have prostate cancer and you’re gonna die if I don’t operate in you immediately!’
One day, my own GP lamented that he ‘had’ to refer 3 men to the urologist that very morning because their PSA’s were a tad above 4… ‘And you know what THAT means, right?’ he asked.
It was almost as if by screening them he was sentencing them to an awful fate!
And of course the famous “Invasion of the Prostate Snatchers” written in 2010 by Ralph Blum and Dr Mark Scholz made for the perfect storm of fear, confusion and hesitancy to be tested.
After this brief era, the cases of advanced PCa skyrocketed since many, many men - myself included - paused their testing. Hope that helps,
Phil
Phil

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