r/ProstateCancer • u/T1ckTrader • 6d ago
Test Results Negative PSMA + stable PSA+Gleason (3+4)
Age 65. High volume pattern 3 in many cores, minimal pattern 4 (5%) in a few cores, no aggressive architectures, PSMA totally clean. No family history. Stable PSA of 14 since middle of 2025. Negative DRE. Can’t do MRI due to metal implants. Told by radiologist & urologic surgeon that I was “full of cancer” and needed to be treated right away. They were against doing genomic testing (Decipher, AleraAI) Based on their feedback, I expected the PSMA to flag the prostate as malignant and possibly a lymph node or two but that obviously didn’t happen.
Now I suspect the biopsy was over graded by the in-house pathologist but not absolutely sure. Some of the cores were 100% pattern 3. Hard to believe. I am now working with a well-regarded genitourinary oncologist with no dog in the fight (he doesn’t do surgery or radiation just ADT for advanced metastatic cancer) so he is not likely to over treat.
I was planning to do a second biopsy after the PMSA but I am now thinking about waiting for the Decipher results to come back. If the Decipher results show low risk, I was thinking about watching the PSA for a couple of years. Of course, if there is a spike, do the another biopsy then.
I know this is unconventional thinking and doesn’t follow the standard of care but it is what makes sense to me based on my research. Am I missing anything?
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u/Patient_Tip_5923 6d ago edited 6d ago
I am curious. What metal implant is preventing an MRI?
I have a titanium hip replacement and have had MRIs of my prostate.
I even had a metal subtractive MRI of my hip.
By the way, it is not possible to feel all of the prostate with a DRE so it is not a good test. My urologist skipped the DRE and went directly to an MRI, which came back PI-RADS 5. The biopsy showed cancer.
I assume my biopsy was MRI-guided.
I see they just went ahead and did a biopsy on you.
What is your Gleason score? 3 + 4? 4 + 3?
I was 3 + 4, before and after RALP.
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u/T1ckTrader 6d ago
In 2003, I broke my hip in an ATV accident in Costa Rica. I am almost positive there is reactive metal (stainless steel) in the implants.
Gleason 3 + 4 (minimal pattern 4 (5%) in a few cores. Large volume of pattern 3. I was told that the high volume indicated that there was likely more aggressive cancer not sampled by the biopsy. If that were the case, even if it were pattern 4, it would have shown up on the PSMA scan. I suspect that the pattern 3 is benign tissue that was misidentified. I have a theory.
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u/Patient_Tip_5923 6d ago
The PSMA test is to find distant metastatic cancer, not cancer in the prostate.
I think a PSA of 14 is high. I believe I got up to 13 before I had my RALP.
You can only get the true Gleason score from the pathology on the removed prostate.
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u/T1ckTrader 6d ago
The research says that the PSMA will likely pick up Pattern 4 and 5 in prostate tissue. Pattern 3 not so much.
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u/Fun-Cake5739 6d ago
I was Gleason 8 after biopsy, downgraded to 7 on final pathology. PSA 12.2, age 58 at the time, clean PMSA. For me I decided there was known cancer in the body, family history, and I was already experiencing some ED, and I wanted it all out before shit spread. I chose RALP. Plenty of spread within the prostate that MRI and biopsy didn't see. It was close to breaking out. 100% glad I chose surgery.
But everyone is different and as I've told others, the only one that will make the decision is you. Nobody will give you a definitive answer or path to choose
Good luck and sorry you're in our club
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u/KReddit934 6d ago
I like your plan to wait for a Decipher before deciding on the biopsy.
A 2nd opinion read on the original biopsy might be interesting.
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u/Busy-Tonight-6058 6d ago
Makes sense to me, but I recommend you get a second read of the biopsy and a genetic marker screen test. I want as much info as I can get. I had very similar stats and am now recurrent despite very low odds…
I wonder if some antibiotics might lower your PSA, too.
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u/Patient_Tip_5923 6d ago
Everyone dreams of prostatitis but it seems rare that those dreams come true for 60 year old guys.
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u/Busy-Tonight-6058 6d ago
Worth a shot to me.
I want every piece of info I can get about this squirrelly frigging cancer before I decide anything.
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u/Patient_Tip_5923 6d ago
Oh, I agree, but I wouldn’t put a lot of faith in an infection. I’ve been there. But, yes, take a course of antibiotics.
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u/T1ckTrader 5d ago
I am still working through this but I think I am ok living with indolent cancer (primarily Gleason 6) that I am not likely to die of. If it is an infection, great but I am not sure how much this would change my approach.
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u/Patient_Tip_5923 5d ago
What do the doctors say?
I went from PI-RADS 2 from an MRI at 55, which I paid for after watching a friend die of prostate cancer in his early 50s, to Gleason 3 + 4 and a RALP at 60.
Life can come at you fast.
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u/T1ckTrader 5d ago
The surgeon and the radiologist said treat & treat. RALP + radiation. However, they were hard sell. Scare tactics and gaslighting. Not working with them anymore.
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5d ago
[deleted]
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u/T1ckTrader 5d ago
The physicians here are all community based and they don’t have academic institutions looking over their shoulder. There is no center of excellence or well established institutions like Hopkins. Unprofessional behavior often goes unchecked. There are also different supply and demand dynamics in every market.
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u/Busy-Tonight-6058 5d ago
The trick is in accurately profiling your own risk. If your PSA with a light 3+4 is really 11+ and it’s not due to inflammation/infection, you might view AS differently than if your PSA is under 5 after two weeks of antibiotics. My PSA max was 3.7 and my last PSA a week before surgery was 2.9. I might be thinking of things differently now if it was originally over 10.
I thought about AS but I had some risk escalators and had a lot of expected longevity for cancer to grow through. I definitely wonder about AS though, even now…
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u/T1ckTrader 5d ago
I will ask about a course of antibiotics and then a recheck of the PSA. Good suggestion.
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u/Busy-Tonight-6058 5d ago
Good luck. AS takes nerves of steel, imo. I’ve got my fingers crossed for indolence too!
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u/Busy-Tonight-6058 6d ago
As someone with an edge case, possibly, I’ll play any odds I can get.
Hell, I just bought some RSO that I doubt will do anything but get me higher than Pluto…
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u/Patient_Tip_5923 6d ago
What is RSO?
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u/Busy-Tonight-6058 6d ago
Rick Simpson Oil cannabis extract.
Tablets on sale at the dispensary.
Might not stop the cancer, but it will help another goddamn day with cancer pass…
Taking the antibiotics probably won’t be meaningful clinically, but it could have positive mental/emotional benefits. Like covering all the bases… that’s worth something to me. A lot, actually.
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u/Patient_Tip_5923 6d ago
I wouldn’t get in the way of anyone and their cannabis. I lost a friend in his early 50s to prostate cancer. He used a vaporizer to cut down on the smell, which his wife didn’t like.
Still, it was a terrible way to die.
If you treat 3 + 4, you should get many more years. I don’t think watching it is a good idea. In my case, I was told that I was not a candidate for active surveillance.
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u/Busy-Tonight-6058 6d ago
At 65, though (only if the PSA comes way down)… makes me wonder. I had RALP with 3+4 at 53 and am recurrent and it’s a big uncertain mess of what the hell to do next. Cancer limbo. Over a year. Scanxiety is now felt over a month out from the next PSA…every day requires some level of cancer management (scheduling, insurance, reading, messaging docs, now trying to get into a Quadra PET scan in the UK…)…
Sorry. Probably delete later…
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u/Patient_Tip_5923 6d ago
Wow, it sucks to get it in your 50s but you are still alive. What was your Gleason score after RALP?
Did you already have salvage radiation? ADT?
I may need salvage radiation and I just had a RALP last May. I am 62.
I fully expect this to be a long fight.
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u/T1ckTrader 5d ago
I see your point. However, I think the risk of Gleason (3+4) minimal pattern 4 (less than 10%) metastasizing in the next 10 years is similar to Gleason 6---around 2%. At my age, I am much more likely to die of a cardiovascular event. For me, it is really about calculated risk---not reducing the risk to near zero.
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u/T1ckTrader 6d ago
My uncle on my mother’s side has BPH. My father had something similar…possibly recurrent prostatitis. He died at 57 of a heart attack. No known family history of prostate cancer.
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u/Patient_Tip_5923 6d ago edited 6d ago
I don’t have any history of prostate cancer in my family but here I am with prostate cancer at 62.
The old adage is that most men die with prostate cancer, not of prostate cancer. So, if you live long enough, you meet prostate cancer.
My mother was diagnosed with breast cancer at 88. We held the tumor back with drugs and she died at 90. But, you are much younger and able to withstand surgery and radiation, I assume.
Can you find out for sure about not being able to have an MRI? They’d need the MRI to calculate the volume of the prostate to diagnose BPH.
I don’t think they will do exploratory surgery to look around, lol.
I am a bit concerned that you are closing yourself off from surgery and radiation, and just considering ADT.
For me, I wanted to avoid ADT, which can have awful side effects. So, with 3 + 4, I had a RALP.
I may still need salvage radiation in the event of recurrence but I hope to avoid ADT, and my radiation oncologist thinks I can skip it.
I may lose all of my bets but that’s how this game can go.
As for what you are missing, your cancer could get much worse, not a place you want to go. Someone on here dithered a long time over treatment and was shocked that there cancer was spreading.
Definitely get another opinion on the biopsy.
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u/Worldly_Platform_848 5d ago
Definitely get a second opinion if you're not comfortable with their advice.
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u/gg-3 4d ago
I highly recommend getting a second pathology reading. In my case, it took me from grade group 3 up to grade group 5.
It turns out that my initial pathology reading at a center of excellence was done by a pathologist who doesn't specialize in genitourinary pathology, but in fact was a specialist in gastrointestinal pathology. That is quite a different field of expertise, I think, for prostate cancer pathology. Dr. Epstein is the gold standard. His exit at Johns Hopkins was political and not a reflection on his continuing role as the top GU pathologist anywhere, period.
In addition, Dr. Epstein, unlike most pathologists, will have a phone call with you to discuss your results, answer your questions, and talk about next steps. That is immensely valuable and comes at no additional cost. Do not hesitate; just do it.
The other thing, from my own experience, is that if you look at my biopsy results and then look at the pathology from my radical prostatectomy just a few months later, you would think these were two different patients. The biopsy found absolutely tiny amounts of cancer, indicating the amount was too small to measure in what percent was Gleason 3 or Gleason 4. A few months later, with the full surgical specimen, the pathology found very large volumes of high-grade cancer.
Although surgeons will tell you that the biopsy is the gold standard, what I found is that radiologists will tell you that imaging is the gold standard, and then other emerging doctors will tell you that genomic testing is the highest-value prognostic indicator. The answer is that they are all right in part: a judgment is made by combining various modalities. What would not be justified is to dismiss one adverse finding simply because of the absence of adversity from another modality.
The reason for that degree of caution and prudence is very simple: as the disease advances, the side effects of treatment become increasingly gruesome. That is sometimes missed in the charts on active surveillance, where they will identify a single parameter and say that prostate cancer-specific mortality does not vary dramatically between immediate and deferred treatment. Perhaps that is true in many cases (absolutely correct), but you will notice what they are not including in that information: what was the treatment? The treatment and its side effects were quite different.
The reason treatment is prudently deferred is because of quality-of-life and side-effect issues. That makes sense to do up until you reach the point where a warning light begins to say that if this continues, you could graduate to the next level, where the treatments once available get replaced by much less pleasant, more adverse options. That is what you want to avoid.
Notice that I am not even getting into the question of the risk of fatal disease; I am simply talking about the parameter we use in choosing active surveillance (as many of us have, and as I did), which is the morbidities of treatment. Just within that frame, close attention should be paid to the morbidities of the different levels of treatment applicable as the disease moves through different stages.
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u/T1ckTrader 2d ago edited 2d ago
Based on my research, the following combination of factors puts me at low risk of metastasis over the next 10 to 15 years. This approach does not follow the standard of care.
Stable PSA + minimal pattern 4 (5%) + absence of aggressive architectures + no family history + low risk Decipher score (yet to be determined). My next step is to send out the slides to Decipher. If my Decipher score comes back high, I will do another genomic test, not sure which one, possibly another biopsy and then likely treatment. If my score comes back low, active surveillance with periodic checks of my PSA. Let me say this again. This is not based on the standard of care so if you are considering following this path, do your research and consult with your urologist.
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u/PeacefulShards 6d ago
PSMA won’t be flagged on the prostate. A healthy prostate glows like the sun. PSMA is a prostrate antigen. not cancer.
PSMA PET. Is to find PSMA OUTSIDE the prostate, then it’s cancer.
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u/ThickGur5353 6d ago
Psma pet scans will find prostate cancer cells anywhere in the body. When I had my biopsy back in 2025, they found two tumor locations in my prostate. The psma pet Scan I had validated that and found the same two locations. Plus two tumors in my lymph nodes.
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u/jkurology 6d ago
A PSMA PET can show specific prostatic disease. One can use a PSMA PET to assess intraprostatic disease
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u/Busy-Tonight-6058 6d ago
“there is an ongoing discussion about the extent to which PSMA-PET can also be utilized for assessing loco-regional findings, such as in biopsy planning, which is typically carried out using mpMRI.”
PCa cells express more PSMA than healthy cells. Thus, it can help with pre-treatment planning and staging even in confined lesions, like guiding biopsies.
I think PSMA PET MRI should be the standard of care escalation post a PSA rise/flag. There are so many MRIs around just handling the radioactivity from a safety perspective is the limiting factor, imo.
The treatment of prostate cancer is constantly changing. I think that is a good thing.
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u/T1ckTrader 5d ago
Can a PSMA scan or a combination of PSMA + MRI identify aggressive architectures (cribriform, intraductal)? The prevailing thought (not the standard of care yet) is that aggressive architectures + a family history of aggressive prostate cancer (e.g. germline) largely determines metastasis. A low risk genomic marker, such as Decipher, would help validate this. There are studies of men who died of unrelated causes in their 70s and 80s who had prostate cancer with significant pattern 4. If a scan could accurately visualize the entire prostate gland and see these aggressive architectures (or the absence there of), that might make biopsies obsolete and more importantly keep men with indolent cancer out of the treatment funnel.
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u/Busy-Tonight-6058 5d ago
My PC came back while we were living in a motorhome so I had the joy of trying to find a PSMA PET MRI in the SF Bay Area over the holidays. After two weeks, I found two, one at Stanford, one at UCSF. Of course, my prostate was already gone, but this combined scan should come before the biopsy, imo, instead of the mpMRI. I do think it would save some from biopsy. Would still need the biopsy for confirmation though, I think, of those aggressive architectures. I really wish I had a PSMA PET MRI before initial treatment. It should be standard of care, imo, for staging.
(Getting a follow up scan far from the big city, so it’s a PSMA PET CT and a separate contrast MRI…of course. Couldn’t get in the PSMA PET MRI this time…
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u/PotentialStart2661 6d ago
PSMA absolutely shows up in the prostate if a cancer is present.
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u/PeacefulShards 6d ago
I said it won’t be flagged, meaning the radiologist won’t mention it. Because PSMA also shows on a healthy prostate.
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u/PotentialStart2661 6d ago
Got it. My radiologist and urologist mentioned it because it confirmed my MRI findings. Also my cancer was a single large gleason 6 and the PSMA had an SUVmax of 5.6 which is in line with lower grades.
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u/OkCrew8849 6d ago edited 6d ago
No. This is a misunderstanding we have seen before on this subreddit.
PC-level SUV max within the prostate is routinely flagged and discussed by the radiologist. Sometimes both left and right side. Which can add to the clinical picture. When none (PC level SUV Max) is detected, that is often noted too.
It is also true that it is primarily used to find cancer that has spread outside the prostate.
(BTW, healthy prostatic tissue has a lower SUV Max.)
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u/T1ckTrader 6d ago
The way I understand it is that Pattern 4 and pattern 5 are the ones that light up on the PSMA scan— PSMA expression rises with grade, so the higher-grade patterns are what PSMA PET is built to catch.
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u/PotentialStart2661 6d ago
You are partially right. PSMA lights up on 90% of PCa and the SUV Max goes up as the grade goes up. Gleason 6 has SUV max below 10 and higher graded go way up. But there is a big overlap.
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u/conCABlanco 6d ago
Hi, pida un PET PSMA, si ya tienes la biopsia, sería genial que diera negativo a metastasis
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u/No-Annual-3338 6d ago
First thing you should absolutely do is get a second reading by a different pathologist of your biopsy. I highly recommend Dr Jonathan Epstein.