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The paradox of testosterone and ADT
It’s a curious thing, really — this blind devotion to testosterone as the prime mover in prostate cancer’s twisted little drama. One might imagine that a tumor emerging in an environment already barren of testosterone — my personal endocrine wasteland — might, out of sheer metabolic necessity, learn to dine elsewhere. Glucose, glutamine, maybe even sheer spite. In other words, it may never have been dependent on testosterone in the first place, rendering castration-based therapies about as effective as removing the steering wheel from a horse.
And yet, when I dared to suggest this — that perhaps my tumor was an evolutionary overachiever, already adapted to scarcity and thus indifferent to the standard hormonal starvation diet — I was met not with curiosity, but catechism. The gold standard, they said. Tried and true. As if medicine were a medieval guild and I, an unruly apprentice questioning the sacred text.
Now, don’t get me wrong — gold standards exist for a reason. They work. Mostly. But I’m not "mostly." I’m me. And my concern is not the statistical majority. It’s whether this doctrinal adherence overlooked a tumor that, by virtue of its very origin, had already found a detour around the testosterone toll booth.
So here we are: therapy proceeding with grim determination, and me quietly wondering if we’re starving a tumor that was never hungry in that way to begin with. And if that’s true, what then? Will the outcome reflect biology’s stubborn individuality, or medicine’s one-size-fits-all optimism?
Either way, it seems I’m not just fighting cancer — I’m also in a polite but pointed disagreement with protocol.
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There are also facilities in Canada where you can pay for a PSMA PET scan, if your onco team doesn't think it's medically necessary to order it (my oncologist was actually cooperative when I floated the idea, but said it wouldn't likely give me much info as long as my cancer is castrate-sensitive and my PSA is undetectable < 0.01).
One lab I found in Alberta charges CA $3,200 (US $2,250), so perhaps that's the norm (?). There is also the option of popping across the U.S. border and getting the scan down there, but it might be more expensive.
https://www.ccohealth.ca/en/what-we-do/general-health/pet-scans-ontario/pet-scanning-ontario
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4 ReactionsWhen I went for my radiation treatments, I exercised a bit of humor. As the machine started to hum and circle, I sang to myself like Elmer Fudd hunting Bugs: “Kill the cancer, kill the cancer, kill the cancer, etc.” It took my mind off my full bladder and the fact that I was being zapped with a toxic ray. Most therapeutic.
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5 ReactionsI named my tumor “Bill”. So I can disassociate my body from this tumor, and “Kill Bill”.
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4 ReactionsThat's hilarious @nikolai57 ! When I was in the OR, two days ago, I asked if they have The Machine That Goes Ping (Monty Python)
The staff at Mayo had a good one though....all the robotics have a Wizard of Oz name on them - mine was Dorothy - because the doc is operating "behind the curtain.". It was a good moment of levity.
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6 ReactionsPondering this same concept: that perhaps the cancer is NOT hormone dependent prior to treatment. I believe Theron lies the importance of testing and pathology. Isn’t hormone dependence determined ahead of time?
Our situation is PET lighting up in nodules appearing in lungs only 17 years post RARP and not further treatment. PSA is an outlier at 0.36. Nadir was o.o1 post surgery. We are awaiting confirmation that three 1.1 cm nodules in the R lobes are Pca metastasis with this odd PSA. And I wonder, if not much psa is being expressed from these tumors, just how hormone dependent are they, if at all? I truly hope the chemohistopathology and liquid biopsy will tell us about those hormone receptors before ADT is begun. Isn’t it protocol to make this determination prior to ADT? And of course we need to know if there is any possibility of small cell lung cancer or if it’s a neuroendocrine prostate cancer. These are the questions I am hoping are answered from our trip to see the Wizards at Mayo. In fact we just returned home.
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3 ReactionsYou have to understand, …and question the protocol.
A bit of provoked high brow, none the less. No matter, we are all in the same boat on the same ocean with the same DNA. How human of us..
I think all prostate cancer is usually hormone-sensitive ab initio. What happens is that once you suppress the hormone-sensitive cells, the very rare mutated cells that don't depend on testosterone eventually become dominant. Various treatments can slow that process down for people with metastatic PCa, perhaps to the point that it doesn't happen before you die naturally of old age. ARSI like the -lutamides are especially effective at delaying castrate-resistance when combined with ADT.
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6 ReactionsIt’s interesting that you mention lung metastases. @jeffmarc recently posted observations from one of his PCa groups and lung metastases show up very frequently in the lungs, even with low -ish PSA readings and scant evidence on PSMA. Another older PET agent is usually employed in these cases, but your husband’s showed so no need for another scan (IMO!)
Phil
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2 ReactionsThank you, I will look for @jeffmarc posts.