The paradox of testosterone and ADT

Posted by hanscasteels @hanscasteels, 5 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.

@gsd

Hans, first of all, you're one of the many gifts I've been given since becoming a member of this club! A very close friend, who is also a member of our club, took a trip for pleasure with people he met on PCa forums. He said it was one of the best trips he had ever taken! You would be one my short list of people to invite!

Secondly, I too am frustrated by the existential question: 'But what about me?' Gold standards exist for a reason, but they can also be a barrier to more open discussions between doctors and patients about the specific information each individual needs to feel confident about moving forward. I long for a dialog that allows me to express my concerns and then results in a discussion about the pros and cons of alternatives I've read about. I would be glad to pay whatever hourly fee is appropriate to spend 15-30 minutes in such discussions. I feel I'm going to get that opportunity at Mayo and I'm look forward to that discussion.

I hope you have the same opportunity!

Best wishes!

GSD

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After reading my comment, I confess that unlike Hans, I need an editor!

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@gsd

Hans, first of all, you're one of the many gifts I've been given since becoming a member of this club! A very close friend, who is also a member of our club, took a trip for pleasure with people he met on PCa forums. He said it was one of the best trips he had ever taken! You would be one my short list of people to invite!

Secondly, I too am frustrated by the existential question: 'But what about me?' Gold standards exist for a reason, but they can also be a barrier to more open discussions between doctors and patients about the specific information each individual needs to feel confident about moving forward. I long for a dialog that allows me to express my concerns and then results in a discussion about the pros and cons of alternatives I've read about. I would be glad to pay whatever hourly fee is appropriate to spend 15-30 minutes in such discussions. I feel I'm going to get that opportunity at Mayo and I'm look forward to that discussion.

I hope you have the same opportunity!

Best wishes!

GSD

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Yes. Exactly. Thank you

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@gsd

Hans, first of all, you're one of the many gifts I've been given since becoming a member of this club! A very close friend, who is also a member of our club, took a trip for pleasure with people he met on PCa forums. He said it was one of the best trips he had ever taken! You would be one my short list of people to invite!

Secondly, I too am frustrated by the existential question: 'But what about me?' Gold standards exist for a reason, but they can also be a barrier to more open discussions between doctors and patients about the specific information each individual needs to feel confident about moving forward. I long for a dialog that allows me to express my concerns and then results in a discussion about the pros and cons of alternatives I've read about. I would be glad to pay whatever hourly fee is appropriate to spend 15-30 minutes in such discussions. I feel I'm going to get that opportunity at Mayo and I'm look forward to that discussion.

I hope you have the same opportunity!

Best wishes!

GSD

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Thinking outside the box is great—until you realize the box is fireproof, and you're now standing in a hailstorm of flaming ideas with no umbrella.

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@gsd

After reading my comment, I confess that unlike Hans, I need an editor!

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but unlike Hans, you’ve bravely chosen to acknowledge your need for an editor—true heroism in the age of autocorrect.

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@hanscasteels

Ah, I do apologize—it's never my intent to obfuscate with sesquipedalian loquaciousness. I merely assumed we were engaging in a dialogue above a third-grade lexicon.

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Eh bien, je suits enchanter de faire votre connaissance monsieur. Vous n etes pas un sotte. Je vous admire.

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@ecurb

Eh bien, je suits enchanter de faire votre connaissance monsieur. Vous n etes pas un sotte. Je vous admire.

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Bien que ce soit franchement déprimant de me retrouver sur un forum à parler de prostate — ce noble organe tombé en disgrâce — je dois dire que j’admire profondément chacun des hommes ici présents. Nous formons, bien malgré nous, un club aussi exclusif qu’indésirable… le genre de cercle où personne ne veut entrer, mais une fois dedans, on se découvre entouré de types remarquablement dignes, drôles, et courageusement humains. Chapeau à vous, messieurs de la confrérie maudite.

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Beautifully expressed, as usual, Hans. But I am NOT letting you off the hook about my question to you on another thread - which you never answered.
HOW would world famous oncologist Dr Hans Casteels TREAT your prostate cancer??
Give TRT as initial treatment? NO ADT whatsoever on the wild whim that this particular cancer is already castrate resistant??
I will say again: unless the gold standard is first applied and shows NO positive results, only THEN can you begin unorthodox approaches to treatment.
What you are suggesting is a doctor performing true malpractice - the INTENT to do harm. No expert witness anywhere on earth could get on the witness stand and defend Dr. Casteels’s rogue and unorthodox approach to treating your particular prostate cancer.
And you know I say all this, brimming with love and affection for you and the grace and charm you bring to this forum.❤️
Phil

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Intersting insights @hanscasteels
I'll chime in a bit, but, I don't be much eloquent. Leave it to someone for whom English is a second language to be a higher achiever at the form of communication than us lazy Americuns.

When I was getting started in salvage radiation treatment, my RO was going through his thoughts and it was as you say, all based on the statistics. Every question I asked was responded to with some numbers. I guess that's really all they seem to be able to go on (likely largely due to legal liability which seems to be a deciding factor in everything).
On the question of ADT, my RO explicitly told me that I'd have a 3%-%5 chance of a better outcome if I took it. Now for some reason, it was the surgeon who suggested two years. Not sure why the disconnect.
My feeling at the time was "Give me all ya got Doc!" That's probably a quote.

Lots of medical professionals in my clan, several even did their own research to assist me and understand what I was going through. They all felt A) I probably went into SR too early and B) The ADT was likely not neccesary.

Something in my personality says if you're in fight, you fight with everything in the arsenal. Probably a holdover from my profession. I realize that's not everyone's mantra but just my perspective.

If/When it shows it's ugly face again. I'll be able to tell myself, I did everything I could as opposed to , "Damn, I guess I should have take the ADT".

"That's just my opinion, I could be wrong" - Dennis Miller

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@heavyphil

Beautifully expressed, as usual, Hans. But I am NOT letting you off the hook about my question to you on another thread - which you never answered.
HOW would world famous oncologist Dr Hans Casteels TREAT your prostate cancer??
Give TRT as initial treatment? NO ADT whatsoever on the wild whim that this particular cancer is already castrate resistant??
I will say again: unless the gold standard is first applied and shows NO positive results, only THEN can you begin unorthodox approaches to treatment.
What you are suggesting is a doctor performing true malpractice - the INTENT to do harm. No expert witness anywhere on earth could get on the witness stand and defend Dr. Casteels’s rogue and unorthodox approach to treating your particular prostate cancer.
And you know I say all this, brimming with love and affection for you and the grace and charm you bring to this forum.❤️
Phil

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In this case, may I suggest that it seems we have a difference of opinion.

The “gold standard.” That magical phrase physicians utter with the same reverence as one might invoke the Holy Grail or a particularly solid IKEA warranty. It’s the safe space of clinical inertia—comforting, defensible, and conveniently free of pesky nuance.

From my perspective, it appears that some doctors seem to believe that medicine is best practiced like cooking from a box mix: just add water (or ADT) and voilà, you have Evidence-Based Excellence™. Ask a question? Receive a number. Challenge the dogma? Watch the eyebrows raise and the malpractice risk calculator start whirring in the background.

As for eloquence—don’t sell yourself short. If clear thinking and a willingness to critically evaluate medical orthodoxy don’t qualify as eloquence, then we may as well hand the microphone to the nearest prescription pad and call it keynote speaker.

Your surgeon prescribing two years of ADT when your RO floated a 3–5% benefit? Classic. It’s like being told to wear a raincoat in the Sahara just in case. And yet, somehow, questioning this earns you a suspicious glance, as if you’ve suggested treating cancer with moonlight and essential oils.

But I hear you. When you're in a fight, you fight. It’s just unfortunate that sometimes you're not sure if your corner is shouting strategy or just reading off a flowchart in Latin.

Still, here's to the rebels, the researchers, and those of us who politely raise our hand in the temple of "standard care" and ask, “Yes, but… why?”

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@heavyphil

Beautifully expressed, as usual, Hans. But I am NOT letting you off the hook about my question to you on another thread - which you never answered.
HOW would world famous oncologist Dr Hans Casteels TREAT your prostate cancer??
Give TRT as initial treatment? NO ADT whatsoever on the wild whim that this particular cancer is already castrate resistant??
I will say again: unless the gold standard is first applied and shows NO positive results, only THEN can you begin unorthodox approaches to treatment.
What you are suggesting is a doctor performing true malpractice - the INTENT to do harm. No expert witness anywhere on earth could get on the witness stand and defend Dr. Casteels’s rogue and unorthodox approach to treating your particular prostate cancer.
And you know I say all this, brimming with love and affection for you and the grace and charm you bring to this forum.❤️
Phil

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Now you’ve got me excited. Dammit.

the modern prostate cancer checklist: Elevated PSA? Check—because who doesn’t love a biochemical mystery. Gleason score creeping into the “let’s panic politely” zone? Check. Cribriform pattern? Absolutely, the architectural nightmare of prostate pathology. Perineural invasion? Of course—it wouldn’t be a proper horror story without it. So, what’s next? Apply the “gold standard” treatment because, statistically speaking, that's what everyone else is doing, and individuality in medicine is just so passé. Genetic testing? Optional, especially if you prefer your treatment plans designed by coin toss. Scans that can’t detect anything smaller than 2.7 mm? Perfect—nothing like the illusion of thoroughness. PSMA PET scans? Surely you jest—those are reserved for people with actual budgets. And finally, let’s throw in some ADT to suppress testosterone in a tumor that clearly threw that hormone overboard years ago. Makes perfect sense—if you're a character in a Kafka novel.

Now, if someone had bothered to stray from the algorithmic playbook, maybe we could’ve had a conversation about precision medicine—genomic profiling, to determine actual tumor behavior rather than assuming it’s playing by textbook rules. Or how about considering the patient’s entire medical history—like maybe cardiac health, quality of life priorities, and whether the tumor is actually hormone-sensitive before launching hormonal carpet bombing. Perhaps even using imaging that works, like PSMA PET, instead of squinting at shadows on a CT. But no, why do that when we can march to the beat of a one-size-fits-all protocol and call it progress?

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