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The Dogma-Infested Labyrinth of Professional PCa Treatment Advice
I was raised in a boarding school where we were taught to think critically, to ask bold questions, and to develop broad, inquisitive minds. This was, of course, followed immediately by a quiet expectation that we shut up and conform to whatever nonsense the headmaster had just declared divine truth. “Ask questions, but only ones we’ve pre-approved.” The cognitive dissonance was character-building, or at least that's what they told us. It also turned out to be the perfect training for life as a prostate cancer patient.
Prostate cancer, for those unfamiliar, is not merely a medical condition. It is a bureaucratic passion play in which one is expected to be simultaneously a helpless victim and a well-informed decision-maker. You, the patient, are told to “give informed consent,” which is charmingly ironic, given that most of the information is buried in a fog of acronyms, half-truths, and sentences that begin with “Well, it depends...”
Enter the oncologist—a professional, trained in the arcane rituals of glandular warfare, whose demeanor alternates between reassuring detachment and outright avoidance of your actual questions. You ask about side effects, they mention "manageable discomfort." You probe for long-term outcomes, they quote survival rates with all the nuance of a marketing brochure. You inquire about alternatives, and they begin to fidget, as if you’d asked to perform your own surgery using kitchen utensils and a YouTube video.
The trouble is not malice. It’s something worse: institutional dogma dressed up as personalized care. A doctor may smile gently while steering you into the conveyor belt of their preferred treatment protocol, but God forbid you ask for a copy of the factory schematic. Their confidence is built not on your individual story, but on aggregate data and committee-approved guidelines. It's the medical equivalent of being served hospital meatloaf: it may not be what you want, but it's what everyone else is getting, and it's probably “good for you.”
Trying to educate yourself is no small feat either. The internet, naturally, is a swirling ocean of misinformation, half-truths, and the occasional helpful research paper locked behind a $49.99 paywall—because apparently your own life-saving information is a premium feature. You then arrive at your next appointment, printouts in hand, only to be told, “Oh, we don’t really use that study. That’s not how we do things here.” One wonders where “here” is, and if it has any extradition treaties with Science.
So how, exactly, is one supposed to give “informed consent” when the consent part is real but the “informed” part is mostly decorative? It’s like being handed a parachute and told to jump—then discovering the instruction manual is in Aramaic and your flight instructor refuses to look you in the eye.
You begin to realize that modern medicine—particularly the cancer-industrial complex—isn’t designed for critical thinkers. It’s designed for compliance. Be polite, nod appropriately, sign here, swallow this, show up on time, don’t read too much, don’t ask that, and whatever you do, don’t mention the word “alternative.” That’s how they know you’ve been on the internet, and worse, thinking for yourself.
But here’s the kicker: treatment decisions really do matter. They can affect your energy, your identity, your relationships, and your ability to pee like a functioning adult. And the only person who’s going to live with the consequences is you. The professionals, well-meaning as they are, get to go home at five.
So yes, I was trained to question—but when the answers are locked behind jargon, bias, and a veneer of faux-certainty, that training becomes a survival skill. It’s not that I want to be a medical expert. I just want a fighting chance to navigate the most important fork in the road of my life without being patted on the head and told, “Don’t worry, we’ve got a protocol for that.”
In the end, true informed consent may be more revolutionary than it seems. It means having real conversations, confronting uncertainties, and daring to think beyond the flowchart. It means dragging dogma into the daylight and asking the one question that always made my headmaster nervous: Why?
And if that makes me a difficult patient, so be it. I’ve been worse things.
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Perhaps we need to reconcile dogma with informed consent. The question then becomes, “How?”
Reconciling the two is a bit like trying to get a cat to enjoy bath time. Possible in theory, entertaining in practice, but rarely satisfying for anyone involved.
“How?” you ask. Well, ideally by getting dogma to loosen its tie, sit down for a latte, and listen to something other than the echo of its own certainty. Informed consent, meanwhile, will need to stop interrupting with inconvenient questions like “Do I really have a choice?” and “Why wasn’t I told this part up front?”
We’d need a miracle. Or, failing that, a sincere conversation where professionals acknowledge nuance, uncertainty, and—dare we dream?—the patient’s brain. But don’t worry, we’ll just add it to the long list of things that sound reasonable until you try them in real life.
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1 ReactionI think part of the answer is that every cancer patient needs something like a project manager or case officer overseeing *all* of their healthcare.
It doesn't have to be a doctor (family doctors are too overworked to do it anyway), but maybe a social worker or nurse who has some kind of professional standing to coordinate with the different medical teams. Inside hospital, the floor nursing station and resident played that role for me, but on the outside, the cancer centre focussed only on things related to the cancer itself, and I had to coordinate the rest myself.
I bet it would even save the healthcare system money, because we'd end up with many fewer $$$ advanced cases and ER visits.
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3 ReactionsConsider the specialists I've seen after I started this journey in 2021:
- neurologist
- orthopedic surgeon
- radiation oncologist
- medical oncologist
- urology oncologist
- pain management doctor
- cardiologist
- bariatric medicine specialist
- physiotherapist
- occupational therapist
- hematologist
And probably 5 or 6 others I've forgotten about. That's a lot of coordination, especially when I was still in a wheelchair.
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2 ReactionsNow you’re just being too logical altogether
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1 ReactionA Patient Advocate - not a novel idea, but one not yet supported with funding that is independent. As a spouse, and inveterate investigator, I am trying to fill that role....and its exhausting.
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6 ReactionsAlso, we just need to fund the system better, so that doctors have more time with each patient. That would mean higher taxes in every country, and also higher insurance premiums on top of the higher taxes in the U.S. — those are definitely not popular platforms at election time. 😕
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2 ReactionsYes, certitude is a chain, and “informed” seems an opinion that can morph into certitude. Perhaps seeing similarities might be key.
A couple of my rules:
I educate myself as completely as possible and took the time I needed, I always know that no matter the outcome of a particular choice, I made the best possible decision. That knowledge that I have thought my decisions through carefully is what is really important—and may be more important than the decision itself.
I am in charge. Not my doctor. They need to be consulted and their opinions and ideas should carry weight as I make my decisions. But I never forget: it is my life, my today, and my future. I have made the best possible, fully educated decisions that makes sense for me, with the focus on long life.
My other "must" is a medical team that are active listeners and support shared decision making...'
In an ideal healthcare experience, shared decision making is a collaborative process that takes place between a patient and their healthcare team. When done well, this shared decision-making experience provides a foundation for patients to truly understand what to expect and what is needed for their healthcare.
For the healthcare provider, getting a patient more actively involved in health-related decisions is important to make sure the patient is really able to follow through with a recommended course of action or treatment regimen.
A shared decision-making process takes into consideration discussion of the most up-to-date diagnostic and treatment information. In addition, this discussion should include the healthcare provider identifying the patient’s expressed goals, preferences, and values. The process should provide a bridge between the healthcare team’s expertise, and a patient who is viewed as the expert in their own healthcare preferences.
While patients are often made to feel like they are not experts, and you may not feel like an expert, you are an expert in how you want to plan for your care. You are an expert in what you would like as an outcome of treatment, what your expectations are, and what “side-effects” you are willing to consider enduring.
It is important to recognize that you have an important voice in your healthcare decision-making process. While it is important to be involved in all aspects of your healthcare to the level you are comfortable, shared decision making valuable in situations where there is more than one medical option available.
Real shared decision making ensures that patients are fully informed of all of their options, including the risks and benefits of these options, and that the things that are most important to the patient are taken into consideration.
I have fired those who don't share in this approach.
Kevin
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6 ReactionsYes, you are spot on from my perspective. There are some hospitals that have people called “patient advocates”. I believe they help the patient primarily in the labyrinth of health insurance. Still, someone who actually advocates for the patient is a random act of love. So, while difficult I believe your efforts are not in vain…
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