The Patient From Hell

Posted by hans_casteels @hanscasteels, 6 days ago

CAVEAT: This did not unfold at the Mayo Clinic, or some gleaming temple of medical excellence where treatments are tailored and minds remain open. No, this took place at the Grand River Regional Cancer Centre in Kitchener, Ontario—a place where the oncology script is carved in stone and questioning it is heresy. The oncologist’s name was Anupam Batra. In another time, say the Middle Ages, he would have been known as Batra the Arrogant—the kind of man who, had he been handed a leech and a chalice of bile, would have declared the patient cured before they were even diagnosed.A Treatise on Medical Dogma, Testosterone, and the Inconvenience of Thinking

"What are you doing here? You're wasting my time."
— Medical Oncologist, on meeting a patient with inconvenient questions.

That was how it started. Not with a handshake. Not with a review of labs or imaging or any nod to the Hippocratic niceties. No. It began with a dismissal. The sort of tone you reserve for telemarketers, Jehovah’s Witnesses, or people who ask for ketchup in a French restaurant. Apparently, my crime was showing up to a medical oncology consult while daring to bring… curiosity. Questions. A hypothesis.

You see, I am that patient. The one who read the studies. The one who asked why the tumor, which grew quite nicely in a body that was already low on testosterone, would be further subdued by taking away the last drops of the very hormone it didn’t seem to need in the first place.

Let me rephrase that for the algorithmic minds behind cancer care protocols:
If the plant is growing in sand, is more sand the solution?

Welcome to the templated hellscape of prostate cancer treatment. You, dear reader, might have assumed that a cancer diagnosis would be followed by a nuanced discussion, a personalized plan, and perhaps the faintest glimmer of scientific curiosity. You’d be wrong. What you get is the Dogma Flowchart™. Do not pass Go. Do not collect options.

PSA high? Biopsy bad? Glands cribriform?
Initiate Protocol Alpha: Androgen Deprivation Therapy (ADT), External Beam Radiation, Brachytherapy boost. Three-part harmony. No solos allowed.

And so I asked the question that turned me into The Patient from Hell:

If a tumor develops in a naturally low-testosterone environment, isn’t it already living off the grid? Doesn’t that suggest it’s learned to survive — or thrive — without testosterone?

If you then remove the little testosterone that’s left, aren’t you, in effect, telling that tumor, “Congratulations, you’re now the fittest survivor. Here's your evolutionary incentive to get creative — metabolically, genetically, violently.”

To put it another way: when you cut down the last trees in a forest, the fungus doesn't die. It takes over.

But no. In the Holy Scriptures of Oncology, ADT is sacred. Questioning it is heresy. And so I found myself standing before the High Priest of Medical Certainty, who, rather than engage with the nuance of my case, declared me a waste of his time. A theological inconvenience in his evidence-based cathedral.

Now, let’s be clear. I’m not anti-science. I’m anti-template. I’m anti-treatment-by-pedigree-where-the-tumor-is-a-footnote. Because when your prostate decides to go rogue in a testosterone desert, that’s not a common case. That’s a molecular insurgency. A biochemical coup. And that deserves more than a Ctrl+C, Ctrl+V plan recycled from a 72-year-old with a beer belly and a midlife PSA bump.

I raised the possibility that ADT, in my case, might be fueling resistance. That what was sold to me as chemical castration for therapeutic good might in fact be encouraging the cancer to adapt, mutate, and metastasize out of spite.

I asked about AR-V7 expression, about genomic profiling, about whether a different systemic therapy might make more sense — not instead of ADT, but in consideration of the specific tumor biology. I might as well have been speaking in Klingon.

You see, templated medicine has no space for original thought. It rewards compliance, not questions. The oncological gods are busy — too busy, apparently, for patients who think their bodies might be more than a sum of statistics.

Let me tell you what they do have time for:

15-minute consults.

Pressed white coats.

Protocols laminated in plastic.

A religious belief in T suppression as cure-all.

They do not have time for men like me.
Men who ask what happens when you beat a hormone to death — and the cancer doesn't blink.
Men who suggest that maybe, just maybe, cancer is smarter than a flowchart.

So here I am.
The Patient from Hell.
The man who questioned the gospel of gonad suppression.
The man who thought maybe a cribriform, perineural, test-resistant tumor growing in a low-T body meant something.

And maybe, in time, they’ll write about patients like me in the medical journals — the ones they laughed at, ignored, or dismissed until the science caught up. Or until the tumors did something interesting enough to warrant retrospective attention.

Until then, I remain a heretic with hormone suppression.
And a sneaking suspicion that the real tumor is medical orthodoxy.

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

I agree with Phil- that comment is rude and out of place at Farmer's Market, not to mention in medical institution !

Maybe medical care is free to you Canadians but it is not "free" to that doctor ! He is payed VERY, very well to do his job !!!! I mean this is beyond basic humanity and compassion - I would not tell that to a bum on sidewalk begging - "you are wasting my time", OMG !!!?????? What is WRONG with that doctor ? In situations like this is so darn hard not to wish the same diagnosis onto perpetrator *ugh, just to feel what it means to have cancer for a single day !

Hans, if you can please change your doctor and yes, write complaint - this is just unacceptable. I am so sorry that you had to endure this unfortunate event :(.

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Hans ,
"Yes, it can and does happen" Would be the correct answer. Does your oncologist even read current medical writings on this subject. In my research, Fred Hutch Seattle and UofW med, but while not common, it is out there with the corresponding controversy on the subject. Also "we just don't know why this happens" It's O.K too at least it is honest. Ah, PC the land of many questions but few answers.
"I hope there is no afterlife, I would not like to have to sit through another performance of the Ice Capades"
Woody Allen. one of my favorates.

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@laccoameno5

Hans ,
"Yes, it can and does happen" Would be the correct answer. Does your oncologist even read current medical writings on this subject. In my research, Fred Hutch Seattle and UofW med, but while not common, it is out there with the corresponding controversy on the subject. Also "we just don't know why this happens" It's O.K too at least it is honest. Ah, PC the land of many questions but few answers.
"I hope there is no afterlife, I would not like to have to sit through another performance of the Ice Capades"
Woody Allen. one of my favorates.

Jump to this post

If you have stumbled upon this story expecting a heartfelt tale of patient-doctor bonding, tearful gratitude, and white-coated wisdom, I suggest you put the iPad down gently and back away slowly. This is not that story.

This happens when a patient — inconveniently equipped with a brain, a library card, and an internet connection — dares to question the High Priests of Medicine. The result is usually a mixture of disdain, dismissal, and a faint whiff of fear. (Doctors fear two things: malpractice suits and patients who read.)

As one charming soul once condescended to inform me:
"Yes, it can and does happen.", a phrase that, in the secret dialect of clinical arrogance, roughly translates to: "Fine, you insufferable bastard, you caught me. Now go away."

For the record, yes — it can happen. Yes — it does happen. And no, the fact that most practitioners react to informed questions like Dracula to garlic does not mean the questions are wrong. It just means you're interrupting their performance. Medicine, after all, has become less a practice and more a carefully choreographed Ice Capades: gliding across the surface, hoping nobody notices the thinness of the ice.

In the immortal words of Woody Allen:
"I hope there is no afterlife — I would not like to have to sit through another performance of the Ice Capades."

Neither would I, Woody. Neither would I.

Stay skeptical.
Stay annoying.
It may just save your life.

— Hans

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It is interesting that you bring up the subjects when the standard protocol for what you describe frequently works.

PSA high? Biopsy bad? Glands cribriform?
Initiate Protocol Alpha: Androgen Deprivation Therapy (ADT), External Beam Radiation, Brachytherapy boost. Three-part harmony.

Because you added cribriform to the equation you have to go back and look at the issues with using SBRT on cribriform. It is not real successful, actually doesn’t completely remove it. EBRT and brachytherapy do work.

What were you asking to change, something that really makes medical sense? Not doing ADT for a new patient with that type of cancer, would not be to their benefit.

Your discussion about tumors growing in naturally low testosterone environment is obviously true, but for a brand new prostate cancer patient that just isn’t going to apply in almost all cases. That’s something that usually happens over time as you become castrate resistant.

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One would hope the days of a patient stumbling into an oncologists' office with a "just fix me" uninformed attitude are over . Sadly not so.. So deadly as well...

SW

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There's no excuse for rudeness, ever. But also, we're going to need a lot more oncologists (in every country) if we want them to sit down and spend days/weeks designing highly-customised treatment programmes for each of us.

Unfortunately, cancer isn't something where long waiting lists work: oncologists have to see us all and start treatment quickly after diagnosis, no matter how many of us and how few of them there are. They can't say "sorry, we're full; come back in 18 months." 😕

But again, time pressure and overwork are *never* an excuse for rudeness.

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