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

@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

@heavyphil We are soooo on the same page. Let’s face it. Doctors don’t get paid by not treating you. Most will recommend treatment and justify it by telling themselves they are only doing what’s best for “you.” There are a few honest ones though…honest with you and honest with themselves. Finding one is the trick. Luckily, I had a visit with a doctor at Loma Linda University Medical Center in California early on in my diagnosis. At that point, I had just been diagnosed by an Arizona urologist with a PSA of 4.2 and out of a 12 core biopsy, only 2 showed 3+3 Gleason score cells. Additionally, only 1/3 of those 2 cores contained those 3+3 cells. The AZ doc wanted to take out my prostate. Fast forward to the Loma Linda doctor and we had an hour and a half discussion about PC and almost every other thing under the sun. He was in no rush. He spent time with me. At the very end of our discussion, he said something that hit home. He said, “You know, sometimes the best treatment is no treatment.” That led me to my decision of watchful waiting and I have been doing that ever since. I’m 76 and my PSA is now 10.3. Who knows how much of that score is simply age related BPH? My point here is that too many men are rushed into the operating room or put on drugs for a condition that would most likely allow them to live long enough to die of something else. The scare tactics that some physicians use to rush patients into treatment are reprehensible.

@tdoriausername
My brother was on active surveillance for six years. At 77 they finally found cancer in a biopsy. He had 4+3 in two cores and also had cribriform. He had SBRT radiation and now at 8o he’s doing fine..

Make sure to get an MRI to Verify you do not have tumors in your prostate.

What they used to call watchful Waiting they now call active surveillance.

@heavyphil We are soooo on the same page. Let’s face it. Doctors don’t get paid by not treating you. Most will recommend treatment and justify it by telling themselves they are only doing what’s best for “you.” There are a few honest ones though…honest with you and honest with themselves. Finding one is the trick. Luckily, I had a visit with a doctor at Loma Linda University Medical Center in California early on in my diagnosis. At that point, I had just been diagnosed by an Arizona urologist with a PSA of 4.2 and out of a 12 core biopsy, only 2 showed 3+3 Gleason score cells. Additionally, only 1/3 of those 2 cores contained those 3+3 cells. The AZ doc wanted to take out my prostate. Fast forward to the Loma Linda doctor and we had an hour and a half discussion about PC and almost every other thing under the sun. He was in no rush. He spent time with me. At the very end of our discussion, he said something that hit home. He said, “You know, sometimes the best treatment is no treatment.” That led me to my decision of watchful waiting and I have been doing that ever since. I’m 76 and my PSA is now 10.3. Who knows how much of that score is simply age related BPH? My point here is that too many men are rushed into the operating room or put on drugs for a condition that would most likely allow them to live long enough to die of something else. The scare tactics that some physicians use to rush patients into treatment are reprehensible.

@heavyphil We are soooo on the same page. Let’s face it. Doctors don’t get paid by not treating you. Most will recommend treatment and justify it by telling themselves they are only doing what’s best for “you.” There are a few honest ones though…honest with you and honest with themselves. Finding one is the trick. Luckily, I had a visit with a doctor at Loma Linda University Medical Center in California early on in my diagnosis. At that point, I had just been diagnosed by an Arizona urologist with a PSA of 4.2 and out of a 12 core biopsy, only 2 showed 3+3 Gleason score cells. Additionally, only 1/3 of those 2 cores contained those 3+3 cells. The AZ doc wanted to take out my prostate. Fast forward to the Loma Linda doctor and we had an hour and a half discussion about PC and almost every other thing under the sun. He was in no rush. He spent time with me. At the very end of our discussion, he said something that hit home. He said, “You know, sometimes the best treatment is no treatment.” That led me to my decision of watchful waiting and I have been doing that ever since. I’m 76 and my PSA is now 10.3. Who knows how much of that score is simply age related BPH? My point here is that too many men are rushed into the operating room or put on drugs for a condition that would most likely allow them to live long enough to die of something else. The scare tactics that some physicians use to rush patients into treatment are reprehensible.

Hello and thank you to everyone for your thoughtful responses. I'm not sure I explained my situation very clearly. I've been getting routine psa tests for 20 years. Levels started in the 2.5 range and gradually increased over the years in small increments. But it never went down and was never below 2.5
In July 2024 a routine psa test was performed. It was 6.19. Six months prior my level was 3.8. So, my Dr sent me to a urologist who performed a biopsy and I was officially diagnosed with prostate cancer which I described in my first post. 3+3 low risk. I've been on active surveillance since. No treatment. Getting psa levels and exam every 3 months. My levels have consistently decreased, with most recent being 4.8. I know this doesn't really indicate anything positive but it's better than increasing. However, after my most recent level came back 4.8 the office called me and said it had jumped from 0.21 on the previous test. I asked for an explanation, and she said she would send the Dr a note. He never responded. So, I'm frustrated because I don't believe that 0.21 was an accurate test result. I didn't know about it because I didn't bother to look at that particular one. I made the mistake of assuming they would call me if anything was amiss. Why didn't they call me back in to have a retest back then? Didn't they think it was weird to go from 5.3 to 0.21? I've lost some confidence in my Dr which I was already questioning to begin with, due to certain comments made in the past.
I have an appt in March. It will be 18 mos. since dx. I know he will want to do another biopsy. I am going to ask for a mpMRI and decipher test on the samples. I am exploring my options as best I can. I have VA medical benefits and am getting Community Care which means I have a civilian Dr, but I have been unable to make contact with them to find out if I can switch to a different urologist if I'm unhappy with my current one. I will post an update in case anyone is curious to know what happens. Thanks again and Best Wishes to everyone!

@tdoriausername (You know how much of that PSA score is simply age-related BPH by tracking the PSA Density.)

I’m not (yet) that jaded to believe that a doctor’s recommendation is that self-serving, During my 14-year prostate cancer journey, there have been no less than a half-dozen decision points where we (my doctors and I) weren’t in agreement on my treatment path.

I’m convinced that their recommendations to me were based on what had worked well for them in the past. (“If all you have has been a hammer, everything looks like a nail.”)

When their argument was stronger than mine, we went with their recommendation; when mine was stronger than theirs, we went with my recommendation. These were not difficult discussions, and I never felt pressured (or scared) into following their decision.

In my case, I knew that watchful waiting was not the right choice for me; active surveillance was the right choice. (Watchful waiting is only used when someone is too old, too sick, limited life expectancy, or too (anything else) such that treatment risks outweigh benefits. I had none of those conditions, and was more than able to handle the rigors of keeping my active surveillance truly “active” so, that’s what I chose.) The term “active surveillance” has been around long before 2012 when I chose that path.

Mayo Clinic has an age-based PSA chart (see attached).

At a PSA of 10.3, the scientist in me would want to dive into what’s going on. I would work to rule-in or rule-out conditions like enlarged prostate, BPH, prostatitis, UTI, or a dozen other possible causes of an elevated PSA. At the same time, once I had ruled out all other reasonable possibilities, I wouldn’t be so fearful of it being prostate cancer that I still summarily rejected the possibility and did nothing….

@tdoriausername And it’s going to get even worse. It used to be that there were a few bad actors - or misguided practitioners - here and there. Now, they are endemic.
VC groups in charge of large hospital systems and specialty groups forcibly push doctors into procedure driven care…Why? THAT’s where the big$$ is. Why get paid a few hundred for a wellness exam when you can bill for a procedure and all the adjunctive services that go with it?
United Health Care, the huge insurance conglomerate also owns hospitals - yes, you heard correctly. They’ve recently been indicted for fraudulent billing in some bizarro scam to take $$ from one pocket and put it in the other, which somehow affected their bottom line very favorably…
You now have to question not only the treatment, but if you are even sick at all…so sad…

@jeffmarc Yes, active surveillance sounds more like a medical term and the word active justifies calling you back every three months for a check up. My multiparametric MRI of the prostate is scheduled for 2/19. I will then bring the results to Mayo Clinic in Phoenix for a consultation on NanoKnife procedure on March 9th. No radiation or chemo for me. Im also considering TULSA Pro.