Inconsistent diagnosis?
I was given a 3 plus 3 diagnosis about 14 months ago. Decipher was middle range. After about 12 months I had another MRI that showed the spot on my prostate grew from 1.3 to 2.1 cm. They decided a PET scan was in order that suggested more extensive cancer that may be in an adjacent lymph node. At the same time the SUV numbers are low and my PSA is at 2.05. The oncologist wants to either: 1) start hormone therapy for 2 months 2) do another biopsy 3) do nothing for three months and do another scan as my numbers are not high and it may not be anything. I am told the PET scan is clear and definitive. Not sure I want to start with Hormone therapy as the side effects appear to be not great. Any suggestions are much appreciated
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With your PSA of just 2.05, what prompted you for any additional testing?
With a 6(3+3), I first would look for reasons whether to choose (or not choose) active surveillance.
What was your?:
> PSA: you indicated yours was 2.05
> PSA Doubling Time
> % Free PSA
> PSA density
> PIRADS score (from the MRI)
> Genomic (biomarker) test results: you indicated your Decipher was mid-range
> Genetic (germline) test results
> SUVmax scores from the PSMA PET scan
What did they mean by “…suggested more extensive cancer that may be in an adjacent lymph node.” (With just a 3+3, you don’t appear to have any extensive cancer in the first place.)
If it were me (with numbers as low as yours, I would choose Door #3) do nothing for three months —> and then do a repeat PSA test, and a % Free PSA test, check my PSA Doubling Time and PSA Density, get a Genetic (germline) test, and perhaps a different genomic (biomarker) test on the existing biopsy tissue.
If it were me, I would not get anything more invasive than bloodwork done; what’s the rush?
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Hug
5 ReactionsAlso, while the PSMA-PET scan is more sensitive than other alternatives (e.g. bone scan, CT+contrast, MRI+contrast), it's not necessarily "definitive" for a couple of reasons:
1. Individual dormant cancer cells and very small micro-tumours still won't show up on the scan.
2. Due to its sensitivity PSMA-PET is "noisy", so you might get some false alarms (looks like cancer, but turns out not to be). It can sometimes be like a smoke alarm that goes off every time you fry onions.
Once you're on ADT, there's a third issue:
3. When your cancer cells are suppressed by testosterone deprivation, PSMA-PET might not show any uptake.
Unfortunately, there's *no* definitive way to say you're cancer-free after a prostate-cancer diagnosis — at least not yet — but at least PSA is a strong indicator of whether any cancer that lingers is currently awake or asleep.
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3 ReactionsWith your low PSA doing anything immediately seems too aggressive. Doctors are trying to delay people starting hormone therapy because of its major effects on their life, The NIH did a study about this and recommends holding off, I actually posted a new discussion with a video from the NIH, I put that link down below. It does refer to people who had treatment, but it applies as much to somebody that hasn’t.
If your doctors really concerned, get a PSE test. It will tell whether or not there is cancer in your system and is 94% accurate. If it says there is cancer, then you want to get a biopsy.
https://connect.mayoclinic.org/discussion/are-castration-sensitive-pc-patients-being-over-treated/
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2 Reactions@brianjarvis
Brian - attached are the results.
MRI 12-11-25 (MRI-12-11-25.pdf)
Blood test 11-25-25 (Blood-test-11-25-25.pdf)
UCLA PET Scan 2-11-26 (UCLA-PET-Scan-2-11-26.pdf)
PSA Pathology Report 12-3-24 (PSA-Pathology-Report-12-3-24.pdf)
@jeffmarc
Many thanks
@douglasmayo All of your numbers look like low-grade disease.
If it were me, I would get a repeat PSA (quarterly at first), and then continuously track those other numbers that I mentioned earlier. That buys time to come up with a plan should any of the numbers trend the wrong way.
However, I would ask about the comment in the MRI report about “…. Target #1: contact with capsule; suspicion for extracapsular extension (4 of 5).
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Hug
3 ReactionsMy situation has similarities. Prostate is not enlarged at 29CC
Pirads5 lesion with possible ECE on MRI in September 2025
Lesion is 2cm and is along wall of prostate
Biopsy was 3+3
decipher of 0.48
PSA is 2 to 2.8 (except one 4.0 test in May 2025.
PSA test three weeks ago was a 2.0.
Gleason and PSA indicate continue active survellience.
Pirads5 and possible ECE are concerning.
3 weeks ago, Surgeon and I decided to repeat MRI and Biopsy in April.
Surgeon and Radiation Oncologist feel the lesion may have higher than 3+3 tissue, but PSA is staying on lower end.
Best Wishes
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1 Reaction@brianjarvis I have to agree with you; in an otherwise completely unremarkable scan, that one area of capsular contact is cause for concern.
Perhaps PSA’s every 3 months to determine velocity and re-biopsy of that capsular area in particular. It could be something or a big nothing, which seems to be typical of this thing…
Phil
@heavyphil I like that word….. “unremarkable” ….will have to start using that.
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1 ReactionHi
Profile:
• Age: 56
• PSA: 10.5-->9.9 in 1 month
• Prostate volume: 33 cc
• isoPSA: 17.7
• MRI: Negative
• DRE: Negative
• Family history: None
• Symptoms: None
Factors lowering risk:
✔ Negative MRI PI-RADS score : 2
✔ Negative DRE
✔ No family history
✔ No symptoms
Factors increasing risk:
⚠ PSA near 10
⚠ PSA density 0.30
⚠ isoPSA 17.7
Am I a candidate for monitored surveillance instead of immediate biopsy?
• What criteria would make surveillance safe?
• What PSA level or change would trigger biopsy?
Given my negative MRI, would a systematic biopsy still likely detect clinically significant cancer?
What are the risks of delaying biopsy in my case?
What are the complication risks of biopsy for me?
What’s my risk of undiagnosed prostate cancer?
I am new to this all these, please guide me through the prudent steps for the future course of action and Suggestions. Thank All in advance.