1. < Prostate Cancer

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.

ecurb | @ecurb | 1 day ago
In reply to @hanscasteels "Bien que ce soit franchement déprimant de me retrouver sur un forum à parler de prostate..." + (show)
@hanscasteels

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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I take the 5 th amendment. I ve been silenced. Lol

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heavyphil | @heavyphil | 1 day ago
In reply to @hanscasteels "Now you’ve got me excited. Dammit. the modern prostate cancer checklist: Elevated PSA? Check—because who doesn’t..." + (show)
@hanscasteels

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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Now, let’s not confuse the gold standard - or better, the standard of excellence- with what YOU are getting in way of treatment.
You absolutely SHOULD have genomic testing; you totally need to be worried about prolonged therapy on ADT if you are a cardiac patient (which you are).
So what I glean from all this is that you are not happy with your particular doctors, and budgetary constraints are preventing you - and your healthcare system - from exercising a true gold standard. That is most unfortunate!
I am extremely lucky to be living in the US, where optimal healthcare is available to those with either good insurance or money in the bank - both being even better. Many times I have paid privately out of pocket - my surgery cost me almost $65,000US 6 years ago by a top surgeon in NYC - A home equity loan I will be paying for a while!
So I truly do commiserate with those who cannot follow the same path. But you are obviously an extremely intelligent man and as such you know that you are the ONLY person who decides what treatment you wish to pursue.
If you don’t want more than 6 mos ADT because of its “only” 5% chance of a better outcome - and its increased chance of cardiac issues - DON’T take any more. Easy peasy!
Genetic testing? Perhaps the website @jeffmarc suggests can help you - don’t know the cost, if any, but certainly well worth it.
So you are certainly free to pursue a different course of treatment if you are so inclined. I don’t know your Drs personally, but we all tend to either love them or hate them. You’ll get a few “OK’s” but not many.
So the answer to all your frustration with the Canadian health care orthodoxy is simply this:
CARPE DIEM!…. And, of course, charm a lonely old widow out of her life savings so you can get the best treatment you deserve…Best,
Phil

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beaquilter | @beaquilter | 1 day ago

My husband and you sound like "buddies" he's so against the main protocol.... and trying outlying things, don't know if it'll work or not, and with stage 4 also in lungs and bones, I'm afraid he doesn't have time to "play".... we'll see

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1 reply
dailyeffort | @dailyeffort | 1 day ago
In reply to @hanscasteels "In this case, may I suggest that it seems we have a difference of opinion. The..." + (show)
@hanscasteels

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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This exchange brought several posts from a 2024 thread to mind. It was, of course, created by "messieurs de la confrérie maudite" (not all shown sequentially below):

"strutt52 | @cstrutt52 | Aug 23, 2024
There is an old medical adage that I try to remember when dealing with suspect conditions I might have. "When patients hear hooves, they tend to think zebras." Meaning, that most of the time it is just a horse, and the not more exotic troublesome diseases that can affect us."

"northoftheborder | @northoftheborder | Aug 23, 2024
In reply to @cstrutt52 "There is an old medical adage that I try to remember when dealing with suspect conditions..." + (show)
In my case, I originally thought the hooves were horses and they turned out to be zebras. 😕"

"stevecando54 | @stevecando54 | Aug 23, 2024
In reply to @scottbeammeup "I think men are just as attuned to our bodies as women, but we are better..." + (show)
Being stubborn got me into this mess,, oh well, little late now..Best to all"

"northoftheborder | @northoftheborder | Aug 23, 2024
In reply to @heavyphil "After all you’ve gone thru and all the various surgeries, procedures and drugs how could you..." + (show)
Yes, I agree. It's very important to self-monitor. I think the disorder is when it becomes excessive and dysfunctional, just like washing your hands is good, but continuing until your hands are raw and bleeding isn't. It's tricky with cancer, because we always worry that the one thing we decide *not* to worry about will be the one that matters."

For better and for worse, when you have cancer, there is no such thing as an idle mind.

Bill

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1 reply
hanscasteels | @hanscasteels | 1 day ago
In reply to @dailyeffort "This exchange brought several posts from a 2024 thread to mind. It was, of course, created..." + (show)
@dailyeffort

This exchange brought several posts from a 2024 thread to mind. It was, of course, created by "messieurs de la confrérie maudite" (not all shown sequentially below):

"strutt52 | @cstrutt52 | Aug 23, 2024
There is an old medical adage that I try to remember when dealing with suspect conditions I might have. "When patients hear hooves, they tend to think zebras." Meaning, that most of the time it is just a horse, and the not more exotic troublesome diseases that can affect us."

"northoftheborder | @northoftheborder | Aug 23, 2024
In reply to @cstrutt52 "There is an old medical adage that I try to remember when dealing with suspect conditions..." + (show)
In my case, I originally thought the hooves were horses and they turned out to be zebras. 😕"

"stevecando54 | @stevecando54 | Aug 23, 2024
In reply to @scottbeammeup "I think men are just as attuned to our bodies as women, but we are better..." + (show)
Being stubborn got me into this mess,, oh well, little late now..Best to all"

"northoftheborder | @northoftheborder | Aug 23, 2024
In reply to @heavyphil "After all you’ve gone thru and all the various surgeries, procedures and drugs how could you..." + (show)
Yes, I agree. It's very important to self-monitor. I think the disorder is when it becomes excessive and dysfunctional, just like washing your hands is good, but continuing until your hands are raw and bleeding isn't. It's tricky with cancer, because we always worry that the one thing we decide *not* to worry about will be the one that matters."

For better and for worse, when you have cancer, there is no such thing as an idle mind.

Bill

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Brilliant. Thank you. No more needs to be said

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hanscasteels | @hanscasteels | 1 day ago
In reply to @beaquilter "My husband and you sound like "buddies" he's so against the main protocol.... and trying outlying..." + (show)
@beaquilter

My husband and you sound like "buddies" he's so against the main protocol.... and trying outlying things, don't know if it'll work or not, and with stage 4 also in lungs and bones, I'm afraid he doesn't have time to "play".... we'll see

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wow… yeah, sounds like your husband and I might get along too well—stubborn, allergic to mainstream paths, and convinced the scenic route is secretly the shortcut.

I totally hear you though. Stage 4 isn’t exactly the time to be auditioning alternative strategies like it’s America’s Got Experimental Therapies. It’s terrifying when time is tight and someone you love is betting on maybe’s and what-ifs.

You’re in a tough spot—caught between respecting his choices and screaming into a pillow. (Highly recommend the pillow, by the way. Preferably one you don’t need to sleep on.)

Sending strength—and a very dry martini, emotionally speaking. Let’s see what unfolds, one impossible day at a time.

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1 reply
beaquilter | @beaquilter | 1 day ago
In reply to @hanscasteels "wow… yeah, sounds like your husband and I might get along too well—stubborn, allergic to mainstream..." + (show)
@hanscasteels

wow… yeah, sounds like your husband and I might get along too well—stubborn, allergic to mainstream paths, and convinced the scenic route is secretly the shortcut.

I totally hear you though. Stage 4 isn’t exactly the time to be auditioning alternative strategies like it’s America’s Got Experimental Therapies. It’s terrifying when time is tight and someone you love is betting on maybe’s and what-ifs.

You’re in a tough spot—caught between respecting his choices and screaming into a pillow. (Highly recommend the pillow, by the way. Preferably one you don’t need to sleep on.)

Sending strength—and a very dry martini, emotionally speaking. Let’s see what unfolds, one impossible day at a time.

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Oh I've screamed and tossed an office chair around in my studio in anger, I've never done that before, have 3 nice holes in my wall....want it as a reminder that this sucks!!

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jeffMar | @jeffmarc | 1 day ago
In reply to @hanscasteels "Now you’ve got me excited. Dammit. the modern prostate cancer checklist: Elevated PSA? Check—because who doesn’t..." + (show)
@hanscasteels

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?

Jump to this post

I think it’s going to be difficult to find a case of prostate cancer that isn’t hormone sensitive. After many years of study, they have found that ADT Works, It suppresses testosterone, which then prevents the cancer from growing. Sure, How long the cancer will not grow depends on many things, But ADT works in almost every case to stop the cancer from proceeding.

Studies have found that a certain amount of ADT usage can not only suppress the growth of prostate cancer, but also in some cases can result in a cure. Only about 30% of prostate cancer cases have reoccurrences. Something must be working with the “standard of care”.

If you were on Medicare, which most prostate cancer patients are, The PSMA PET scan is not financially out of reach For most people.

In the future, we do expect a lot out of prostate cancer treatment. It would be nice if “precision medicine—genomic profiling, to determine actual tumor behavior” was perfected these days. Unfortunately, it’s not. Yes, in the future. We can expect genomic profiling to be done on the tumor and a custom treatment developed for each person, but this is not happening yet.

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1 reply
gsd | @gsd | 1 day ago

Hans, first, thanks for starting this conversation! This is an important one! You and I are of the same mind regarding the difficulty of conducting an ongoing conversation with one's healthcare provider about treatment options as we learn more about the diagnosis and the pros and cons of treatment. For me, this is particularly true when the diagnosis and treatment rachets upward on the 'pucker factor scale', Here are my ramblings on the subject in no particular order.
Since I'm an optimist, I'm going to put my Pollyanna conclusion first:
- I think I can facilitate the conversations I need to have. I did it successfully with my surgeon and RO. I had to realized its not the normal conversation that most patients and doctors have for several reasons (See below). Its up to me to facilitate the conversation and I mean no slight to doctors.
- Reason 1: I'm not the normal patient. I'm a PIA because I ask a lot of questions. When I get initial answers I dig into the research so I understand the options better. That usually leads to more questions. Depending on the doctor's perspective and workload, that makes me either 'interesting' or a PIA.
-Reason #2: Most patients don't behave that way. Most patients want the doctor to lay out the diagnosis and treatment options and then tell them what they should do. In my opinion, that is 90% of the patient population.
- Reason #3: In the last 20 years doctors have been taught to conduct 'shared-decision-making' consultations. At its most basic level that translates to: Give the patients the facts. Answer the patient's questions. Don't tell them what to do. Its the patient's job to decide.
- Personal opinion: unless the doctor is a unicorn communicator, that means many consultations are what I call "Dragnet" consultations: "Just the facts, mam. Just the facts." (For those under 65 reading this, google Dragnet.)
- Personal observation: There are unicorn doctors that listen well, make sure they understand things from the patient's perspective, are empathetic, make every attempt to answer patients questions, and are excellent communicators. I'm more likely to find these people at centers of excellence, but not every doctor that has provided care for me at a COE is a unicorn communicator.
- Conclusion: To make me feel comfortable moving forward with courses of treatment, I need to very politely request additional consultations with my doctors, acknowledge that I may have more questions than the average patient, and express willingness to pay what-ever additional consultation fees the doctor and institution thinks appropriate for the privilege of extra time with the doctor.
That approach worked very well with a second consultation with my surgeon. I started by saying: So I don't impose on your time, let me know what time has been blocked for our talk and I'll keep our discussion shorter than that. To cut the the chase, we had a great conversation and I left with all my surgery related questions answered. It also worked well for a second consultation with my RO. Both allowed me to go down rabbit holes with questions about treatment alternatives and I left the conversations better informed.

Signed: GSD-PIA!

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2 replies
northoftheborder | @northoftheborder | 23 hours ago
In reply to @hanscasteels "Bien que ce soit franchement déprimant de me retrouver sur un forum à parler de prostate..." + (show)
@hanscasteels

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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Je suis tout à fait d'accord avec ces sentiments bien exprimées !

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