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The paradox of testosterone and ADT
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.
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I have a GU oncologist who is familiar with everything I have thrown at her. If I want an answer to a new drug or procedure she will know all about it. We meet every 3 months and she answers any question I have.
Even better, if something comes up and I ask her a question in an email I almost always get an answer within an hour.
If we have a disagreement in treatment. She will follow my lead as long as it makes sense.
Sometimes it work out positively.
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2 ReactionsWow , so much knowledge here. Everyone has so much to say. Phil you too. I have calmed down. My apologies. Where I come from the capesh comment struck a nerve. In regards to ADT, testosterone etc. I had a internist years ago tell me the concern for me (based on blood tests) was that guys have 2 or 3 types of estrogens in them, and I had a ratio that was a little out of line. , forgetting details now seem to remember something about aromatase issues? I know I'm late to the party on this dynamic discussion, but any thoughts? thank you, Hans, for starting ,,thank you Jeff and Phil for your ongoing contribution to the information exchange and thank you to everyone else for their thoughtful responses.
Well said, Jeff.
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1 ReactionStu, Welcome back!! You definitely have to tell me all about the “capeesh” comment because where I come from - Brooklyn, NY - it was thrown around all the time by family, friends …and yeah, some enemies…
Email me privately if you wish. Best,
Phil
There is no paradox with testosterone and ADT as it relates to prostate cancer.
All cancers are not alike. Though there are some cancers that gobble-up different sources for food - for instance like brain cancer feeds on glucose - modern medicine indicates that prostate cancer primarily feeds on testosterone. Until medicine indicates otherwise, there is no blind devotion - as with all sciences, if the evidence points there, that’s what it is until the evidence points elsewhere.
Modern medicine has shown that yes, when deprived from its primary food source, that prostate cancer can (but not always) might, out of sheer metabolic necessity, learn to dine elsewhere.
There are ways to determine if your prostate cancer is the exception to the rule, and if your tumor has “already found a detour around the testosterone toll booth.”
With prostate cancer diagnosis and treatment being one of self-advocacy and shared decision-making, it’s up to you not to just express doubt, but to become a “student of prostate cancer” and propose solutions.
(During treatment for my prostate cancer - diagnosed in 2012 and not treated until 2021 - there were a number of occasions when my urologist’s/oncologist’s advice and recommendations was not inline with my understanding of the disease and how treatment should proceed. In those instances they had to provide me sound rationale backing up their case. In some instances they were successful, and we proceeded their way. In some instances they were not successful, and we proceeded my way. In either case, ultimately it was always me who made the final call - because there is no “one size fits all.”)
Similarly, with you…..with your questions, curiosity, doubt,…..there is no such thing as a “polite but pointed disagreement with protocol.” The decision is ultimately yours as to what protocol to follow. Because it’s you who ultimately has to live with the outcome of that decision - for better or worse - no one else.
Good luck.
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
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1 ReactionThis is an epic thread. That's it. That's the comment.
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2 ReactionsHans, You are a funny guy.! I'm an engineer (structural). As a younger man (and still) I love words and language (kind of like a 20 handicapper loves golf :)) . What you are doing is what I hope to do for the people around me, and that is to move forward with strength , and even humor. I worry about being a burden emotionally on family in the short term and in bigger ways longer term. Your posts make me think and smile. Good day eh 🙂
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2 ReactionsProstate cancer isn’t exactly a barrel of laughs, but I’ve decided to smuggle some humor into the situation anyway. It’s not denial—think of it more as creative coping. For my own sanity, yes—but perhaps more importantly, for my wife’s. Because if I didn’t crack the occasional joke about PSA scores and radiation zaps, she might be tempted to zap me herself. With a frying pan.
Humor doesn’t cure cancer, but it does take the edge off—like a slightly inappropriate anesthetic for the soul. So I keep laughing, she keeps rolling her eyes, and together we muddle through, one groan-worthy pun at a time.
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3 ReactionsHans, just in case you ever doubt you are making a difference, just re-read this thread! Like I said, you're on my short list!
Best wishes and keep it coming!
GSD
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