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Totally confuse-How to move forward with my RO & 2nd opinion
Totally confused
67 years, Had HolEP (March 2025) biopsy 3+4=7 Decipher 0.17 TNM=0, PSA 1.2 (8/10/25) PSMA all clear except a small liaison ECE
2nd opinion says its a small and nothing to worry about for next 8–10 years, here is the caveat but schedule me of Cyberknife prep work for CT for placement of fiducial
My RO at UCSF says he does see nothing drastic in my PSMA- scans and reviewed it with me, and that I have nothing to worry about the next 10 years, this small liaison was already there before, and we just happen to have caught it due to HolEP. I also discussed with him the 2nd opinions advise with him, I was by RO to be careful with Cyberknife, due to the fact that HeLEP has a left a hole in the prostate and cyberknife will make it worse and may cause excessive bleeding. He told me that in order to really determine if there is cancer, it would be advisable to have another biopsy done and take next steps then and referred me back to my urologist.
Totally confused with the findings …and what to do next ,,any advice will be greatly appreciated
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You had a 3+4 Gleason. One main question is what percentage of that 3+4 had cancer and what percentage of it was a 4?
If they are very low percentages, then active surveillance makes sense if they’re high percentages then it doesn’t make sense.
If they didn’t tell you what the percentages are then ask them.
Extracapsular extension (ECE) in prostate cancer refers to the tumor's growth beyond the prostate gland's outer capsule. It's a sign of locally advanced disease and is associated with a worse outcome. I would want the doctor to explain why this isn’t a major issue.
Are you in Canada? Where are you being treated? This sounds like a case where you really need a second opinion from a center of excellence.
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Hug
7 ReactionsI am also surprised that ECE is dismissed as something minor and what is even more worrisome (for me personally ) is that this is happening at UCSF ??? @@ Also, talking so confidently to a patient about "nothing to worry about" and there is 3+4 already present ? I see that Decipher is very low but it can change - it is not something that is static.
I would suggest you ask for a third opinion and in a different institution. Try Stanford, maybe.
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2 ReactionsHi Jeff,
All at UCSF..remeber mine was not a regular biopsy, it was after my Holep IPC but here are the result
FINAL PATHOLOGIC DIAGNOSIS Prostate gland, holmium laser enucleation: Prostatic adenocarcinoma, Gleason score 3+4=7; COMMENT: Gleason score 3+4=7 prostatic adenocarcinoma, with approximately 5% Gleason pattern 4, is present, and involves approximately 20% of tissue. The types of Gleason pattern 4 present include the fused glands and poorly formed glands type
is it worthwhile getting the biopsy..to make sure??
So they found cribriform glands too ?
If yes, than I am also really confused with a proposed plan : (.
NO according to report above
I too would consider getting a third opinion from a center of excellence and seek out an institution that has a radiation machine with a built in MRI vs fused images, which would be either the Mridian Linac or the Elekta Unity. Side effects and quality of life matter. I had 3+4 with a PSA of 11. I was treated 5 times in February of 2023 with a low risk Decipher. My PSA is now .65.
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Hug
2 ReactionsHonestly, ECE, even if it’s barely visible, is telling you bluntly that cancer cells have reached, and possibly breached the confines of the gland. This is serious…
You only need a few cells to travel snd take up residence elsewhere, taking you to the level of metastatic disease. How an RO could dismiss this finding - and then tell you that you have TEN years to worry about it, is very concerning.
Not sure which RO is telling you about the hole caused by HOLEP and its possible implications for Cyberknife, but even if that caution is valid it doesn’t mean that you should dismiss treatment for ECE.
What about IMRT?
Unfortunately, you need a third opinion…but a repeat biopsy targeting the ECE could be nasty as well; do you want 12 or more jabs into an area which is already bordering on breaking out of the capsule?
We’ve often debated here about biopsies ‘seeding’ the body with PCa cells, and although it’s mostly been debunked, I personally would have reservations about poking around a very iffy area.
Phil
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4 ReactionsMauk mentioned UCSF.
Are you seeing Dr. Mack Roach at UCSF? He really is one of the top radiation oncologist in the country. Now that you have more information about ECE, you should talk to him about what’s going on and why he feels that you are fine doing nothing even though you have ECE.
Maybe things are not quite what they appear to be.
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