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I am in long term biochemical relapse. What to do next?

Posted by mrkoji @mrkoji, May 8 3:12pm

I am in long term biochemical relapse. My PSA is now at 3.4 and my PSMA PET/CT scan this week failed to find the cancer cells. I am guessing that I unfortunately have non PSMA expressing cells. The question is:
Should I seek another older imaging test to see if the cancer turns up or should I go back on ADT and see if it lowers my PSA? I certainly know that the cancer is there, no question 🙁
I was diagnosed in 2019, prostate removed 2020, salvage radiation and two years on ADT. A met on a illiac lymph node was found via PSMA PET in 2024 and radiated.
Thanks everyone!
Daniel

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mrfluffy | @mrfluffy | May 8 4:09pm

You could get an FDG pest scan. They typically use that to find discordant cancer. If you do find the metastasis, get it biopsied to determine if it's neurodocrine type or just low PSA producing. Genomic testing is probably a good Idea also.

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Jeff Marchi | @jeffmarc | May 8 4:26pm

An Axumin pet scan or a choline pet scan (only at Mayo) Could show if there is cancer spread somewhere else, if you have no PSMA being produced. An FDG scan can work but it looks for glucose, which is only produced in prostate cancer that is very aggressive or neuroendocrine.

Ask a radiation oncologist what they think is best for you.

Yes, you should go on ADT and an ARPI. I can probably keep your cancer under control for a long time, And reduce your PSA down to undetectable again. The easiest drugs to take are Orgovyx and Nubeqa, Those two have the least side effects. Ask the doctor about it.

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lag | @lag | May 8 6:36pm

For my husband, Mayo Rochester does a choline PET if there is suspicion of cancer that is active but doesn't express PSMA.

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climateguy | @climateguy | May 9 10:49am

So, prostate cancer can be heterogenous enough that some of the lesions produce psma and some don't?

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mrkoji | @mrkoji | May 9 3:58pm
In reply to @climateguy "So, prostate cancer can be heterogenous enough that some of the lesions produce psma and some..." + (show)
Profile picture for climateguy @climateguy

So, prostate cancer can be heterogenous enough that some of the lesions produce psma and some don't?

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@climateguy Correct. Some can produce no PSMA and no PSA. Others can produce no PSMA but some PSA.

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rlpostrp | @rlpostrp | May 10 8:27pm

Sorry to read this. When I researched all of this...the post-op, biochemical recurrence stuff...I read what I think we all know, but I'll say again: When you start to have biochemical recurrence, you have enough cancerous prostate cells to produce detectable PSA...the assay is really good, especially the ultra-sensitive PSA test, but...PET Scan sensitivity is such that it can't detect "where" the cells that are producing the PSA are located, because there aren't enough of them to take-up enough of the Gallium-68 tracer to be detectable. We are victims of limited technology...simple as that. I have always had one important thought/question though:
Because those of use who have biochemical recurrence did so because our cancer revealed Extra-Prostatic Extension (EPE) and Surgical margins that saw cancerous prostate tissue left in our body, I want to believe that during the surgical RP procedure, there were also "NON-cancerous" prostate cells left behind in our body as well. Therefore, is it an easy conclusion to think that perhaps some or many men who are told that they have biochemical recurrence, might have it because they still have "normal/healthy" prostate tissue that remained in their body? The likely answer is that: "yes...it is possible, but it is likely co-existing with cancerous prostate tissue that was also left behind in us as well (surgical margins)." So, while we likely have healthy prostate tissue starting to regrow and produce detectable PSA, it probably coexists with cancerous tissue, thus the need for radiation therapy or ADT, etc.

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Jeff Marchi | @jeffmarc | May 10 9:52pm
In reply to @rlpostrp "Sorry to read this. When I researched all of this...the post-op, biochemical recurrence stuff...I read what..." + (show)
Profile picture for rlpostrp @rlpostrp

Sorry to read this. When I researched all of this...the post-op, biochemical recurrence stuff...I read what I think we all know, but I'll say again: When you start to have biochemical recurrence, you have enough cancerous prostate cells to produce detectable PSA...the assay is really good, especially the ultra-sensitive PSA test, but...PET Scan sensitivity is such that it can't detect "where" the cells that are producing the PSA are located, because there aren't enough of them to take-up enough of the Gallium-68 tracer to be detectable. We are victims of limited technology...simple as that. I have always had one important thought/question though:
Because those of use who have biochemical recurrence did so because our cancer revealed Extra-Prostatic Extension (EPE) and Surgical margins that saw cancerous prostate tissue left in our body, I want to believe that during the surgical RP procedure, there were also "NON-cancerous" prostate cells left behind in our body as well. Therefore, is it an easy conclusion to think that perhaps some or many men who are told that they have biochemical recurrence, might have it because they still have "normal/healthy" prostate tissue that remained in their body? The likely answer is that: "yes...it is possible, but it is likely co-existing with cancerous prostate tissue that was also left behind in us as well (surgical margins)." So, while we likely have healthy prostate tissue starting to regrow and produce detectable PSA, it probably coexists with cancerous tissue, thus the need for radiation therapy or ADT, etc.

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@rlpostrp
And then there is the dormant cell problem. Before your cancer is even detected, dormant cells have been sent to multiple places in your body and hidden so they cannot be seen at all by any known diagnostic technique we currently have. There are many ways that cancer comes back, That is one of them.

info on dormant cancer cells
https://www.dropbox.com/scl/fi/8wyq61jnnxl9g9cbmek5g/Dormant-cancer-cell-details.html
https://www.nature.com/articles/d41586-025-04149-3

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