The paradox of testosterone and ADT

Posted by hanscasteels @hanscasteels, 6 days ago

Phil, 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.

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

@heavyphil

Hey gsd, these days if you are not a PIA, you get run over; sad, but true!
But in the case of Hans, we all already know that he’s a PIA - an urbane, genteel one for sure - and he’s probably pressed his case to the max with his doctors.
But his health care system is simply not paying for what he really needs - PSMA PET and genomic testing. And we know that those can cost a lot of money…he’s stuck!
His only option is to pay for these out of pocket - which may not be doable.
I mean, we here in the US have the ability to almost self direct our own treatment IF we have the means to do so. Without that you are usually on Medicaid ( not MEDICARE) and you receive the minimal care necessary; the fees are poor and drs can’t waste time treating you like a private patient.
That last sentence sounds cruel but it is the truth; I have seen it many times in dentistry ( which is chump change compared to medicine) where a dentist has committed actual billing fraud (claiming they did all this treatment when they did not), or worse, mutilating someone’s mouth, drilling teeth, pulling teeth, doing unnecessary root canals - all of this in perhaps a 2 hr time span! - in order to get the most bucks they can. It’s sick.
So from my perspective, knowing just how badly patients in a price controlled environment can fare, Hans is probably getting pretty good care. I mean, we all want the very BEST CARE, but reality is sometimes something else. Best,
Phil

Jump to this post

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

REPLY
Please sign in or register to post a reply.