Protocol over person -The Quiet Tyranny of Standardized Care

Yes, it's very true that you have to be your own advocate.

I'm fortunate, I guess, that my Ontario Cancer Centre did tailor my treatment. In 2021, treating oligometastatic PCa aggressively was still an emerging practice, and Erleada (Apalutamide) wasn't even in the Ontario forumulary yet (I imagine Zytiga was still standard-of-care at the time), but after talking with me and hearing my wish to fight, my onco team wrote to the Ministry of Health to get special permission for Erleada (the Ministry responded in a few days), and put me on an aggressive treatment programme including radiation to the spine and prostate (high, "curative" dose to the prostate), ADT, and Erleada, which has kept my cancer in remission since then. They also enrolled me in the IRONMAN registry (called TrueNTH here), which ensured more-frequent appointments and more-comprehensive bloodwork.

I think the treatment I got then is fast becoming standard now, but I'm grateful to have gotten the head start when it was still a bit experimental.

I appreciate your point and the way it was written, a very entertaining read! I don't however, totally agree with all the points.

You mention "It requires time—a precious commodity in a system built on volume", but cancer is prolific and has to be dealt with this way. My hospital, a cancer specialist hospital, is building a new "cancer wing" that is three times the size of the current hospital because there are far too many people with cancer who need care and far too few facilities to provide sufficient care to them. This is, by the way, in addition to the other campus across town that is, quite literally, twenty times the size.

When I go to the "cancer areas" of any hospital, such as oncology, it's always the biggest crowd waiting. This is the world we live in. Cancer isn't like other health issues, it requires repeat treatment - sometimes over years. If I consider how many times over the past year I've gone to the hospital to dial in what treatment I needed to get, it's many multitudes more than, say, an appendectomy.

As far as it being perfunctory or routine and by the numbers, there are proven methods that work. Of course there are differences between patients, but when a method is proven to work time and time again, it's hard to say "well let's try something totally new and untested and hopefully you make it". For us, right now, it's RARP or radiation, with other therapies sort of on the fringe, like TULSA. I don't want to be a guinea pig, I just want to get fixed and get out.

But, also, you mention liability being a problem. That's a real thing. Because society has become so litigious, there's simply no winning. They can do it by the numbers and get sued, they can do experimental procedures and get sued. Doctors spend more on malpractice insurance in a year than many people make.

For me, I was listened to and I was not ignored or considered a problem patient for asking questions. Being my own advocate empowered me to not accept what the doctor says as gospel and to seek more advice. My doctors, every one of them, applauded my willingness to talk to other doctors about alternative treatments that might one day become the norm (which then will be perfunctory at that time also).

The point is that you always have a choice. Some doctors are good, some are bad. I don't think I can agree that all of the medical world lives in a box that they cannot break out of, I believe it's emerging daily and more power is given to the patient today than ever before.

I get the sentiment but my experience in this crap sandwich that I was made, with pickles, was that I learned how very many options I had. Nobody cares about my life as much as I do, and I had a voice and I was listened to.

Welcome to the warm, reassuring embrace of the Canadian healthcare system—where "you always have a choice".It is a lovely slogan that pairs beautifully with a six-to-eight week waiting list. It's rather like being offered a lifeboat on the Titanic, but being told the oars are on backorder. True, we won't go bankrupt seeking medical care; I suspect there's probably some risk/reward algorithm - if he's old enough, and sick enough...

When I was diagnosed with high-risk cribriform cancer here in Waterloo, I was promptly informed that I could, of course, seek a second opinion—if I had the luxury of time, and if I didn’t mind quietly withering away while waiting for someone with a medical degree and a functioning calendar. “You’re absolutely entitled to a second opinion,” they said, “and we’d be happy to schedule it just as soon as the snow melts and the maple syrup runs clear again.”

You see, it’s not that we don’t have choices here. We do. We just also have queues, forms, phone tag, and the subtle but ever-present fear that if we ask too many questions, our chart might mysteriously vanish into a filing cabinet marked Oh, He Was Difficult. Dr. Rachakondra, the treating radiation oncologist here, is a competent and cordial man, though I gather he’s more accustomed to acquiescence than inquiry

I do agree with the idea that doctors can be wonderful, systems can evolve, and patient advocacy is crucial. But in this corner of Ontario, being your own advocate often feels a bit like shouting into a snowbank. With mittens on. While your referral gets faxed. To the wrong department. ( yes, it happened)

So yes, you can get a second opinion. You just have to live long enough to hear it.

Ahh, that's where I didn't understand - you are on Canadian health care and I was speaking from an American healthcare perspective.

I still like how you wrote it though, it's much how I write long articles 😉

So, how long is actually "when the snow melts" Hans : ) ?

We here on this very forum have high risk patient that never succeeded to get second opinion at Mayo and it is full year since he was diagnosed and still has no clear answers about suggested treatment.

At least you guys in Canada have free medical care and I am yet to meet doctor that is of a caliber that Northoftheborder had ! I can only say WOW North - please give hug to your doctor and say that "impressed lady from California" asked you to do that LOL ; ).

We are transferring care to UCSF since beginning of March and multiple calls had to be made and still continue to be made to check what is transferred, to what department, to whom , etc. , etc.. and the first available app. was end of April and it is going to be Zoom app., since in person would literary happen when snow melts in Sierra. And all of this for the FIRST opinion.

So, IMHO count your blessings ; ).

The closest I can come to your Canadian conundrum is the Medicaid system here in the US. No frills, standardized care at an affordable price - almost sounds like an advert, right? But that’s what it is.
Of course, treatment is more individualized in some hospitals, as evidenced by the fabulous care @northoftheborder has received; your hospital, maybe not so much.
But in defense of the doctors in Waterloo, what evidence have you presented that would make them deviate from a prescribed treatment for your aggressive cribriform cells? I’ve asked you this same question 5 different times on different threads and you have yet to answer me. WHAT MAKES YOU SO DIFFERENT??
Best Always,
Phil

There are new treatments like Tulsa Pro and a few others, most urologist won't say a word, nothing at all that they exist. So yes just put patients all in a category of standard stuff, treatments where paperwork is established. The issue lies with medicare coding. Instead of being able to bill for say treatment of prostate cancer in general, they have to have these unique codes for each kind of treatment. Some treatments are more recognized and the paperwork/coding is standard and easy, and new treatments and advising somebody go where they are will require re-writing paperwork 6 times so no way is a doc going to advise something like that. You can't have paperwork people telling doctors what to do, that is where the system is broken, and has been for some time. Some doctors opt out of medicare and all the paperwork and coding, but it is very hard to do that and survive. Realistically 99% of doctors can't do that.

@hanscasteels @survivor5280 Your original posts should be in a medical/oncology journal as some sort of Point/Counter-Point opinion or Letter to the Editor piece. Great writing and expression of ideas. I wonder if the doctors hear these POVs

Well, Phil, thanks for your persistence. Why do i think my cancer treatment should be different? How entitled of me to expect a personalized, evidence-based medical approach in the 21st century—after all, it’s only my life on the line.

Let’s rewind to the beginning. After my biopsy, it seems the curiosity ended there. No genetic testing. Because who needs to know if i have BRCA mutations or other hereditary markers that might scream, “Hey, this cancer might be more aggressive than it looks!”? No big deal—just roll the dice and hope for the best. It’s not like genomics has revolutionized oncology or anything.

And testosterone levels? Pfft. Why would anyone look into my hormonal history when dealing with a hormone-driven cancer? Clearly, establishing a baseline testosterone level before starting androgen deprivation therapy would be far too logical. Better to just throw Firmagon at the problem and hope my endocrine system doesn’t throw a tantrum.

Let’s not forget the total absence of comprehensive risk stratification. Cribriform patterns? Perineural invasion? Gleason 7? PSA of 26? All very exciting, but rather than contextualizing these in the broader biological narrative of my body, the system seems to have said, “Good enough for government work. Let’s treat this like every other moderately aggressive case.” Individual variation? Overrated.

No deep dive into family history, lifestyle factors, comorbidities beyond the checkbox exercise. No real effort to integrate cardiac risk into the treatment equation until I politely reminded them that my heart is not just decorative. Because apparently, oncologists think my heart will just sit quietly in the corner while my prostate gets all the attention.

So why do i think my treatment should’ve been different? Because treating prostate cancer—an inherently heterogeneous disease—like it’s a one-size-fits-all, color-by-numbers project is a fabulous way to miss critical nuances. My treatment should have incorporated those missing variables because, shockingly, they matter. They guide not only treatment choice but timing, sequencing, potential synergy, and side effect mitigation. Ignoring them is like planning a mission to Mars with a weather forecast for Miami.

The consequences of skipping those early steps? Over- or undertreatment, increased risk of recurrence, avoidable side effects, poorer quality of life, missed opportunities for targeted therapy, and, of course, a nagging sense that the system treated the cancer, but forgot there was a human attached to it.

It’s not as if I haven’t flagged it. It was just ignored, because, you know, “I am a doctor and who the f are you?”. The rest of my opinions about my fine radiation oncologist are illustrated in other posts.

I bloody well hope so.