The arbitrary economics of life and death

All true, but the fact that the system exists at all is pretty amazing. It's not an easy thing to build or maintain, and it's a huge privilege of living in a rich country like Canada or the U.S. that we can just take its existence for granted and moan about the details (which we all do sometimes, since grumbling is only human 🙂).

Annoying as it is, they have two good reasons for asking your birthdate everytime you walk into a new room:

1. Confirmation that they have the right person (we've all heard horror stories about the wrong patient being treated, rare as it is).

2. A quick check of cognitive ability (e.g. do you seem confused or hesitant?).

For a system that often goes for expensive solutions, this is a nice, simple safety check. When I was in hospital (critical care) they also kept asking me if I knew the date, where I was, and why I was there. I entertained myself by reciting hospital, floor, ward and room number, then a stream of technical details I memorised from my chart until they rolled their eyes and smiled.

I have to agree, even though system so far failed us and I was angry (surveillance was too passive and hence useless) any time I feel desperation I tell myself that at least we will have many options going forward and that if were living in our country of origin my husband wouldn't even have surveillance beyond DRE and would have zero options for advanced treatments. I decided consciously not to dwell on what was wrong but to concentrate on going forward. I am also not oblivious of the prospect that one day perhaps there will not be any "forward" but that is not going to be my focus.
At the same time I could spend time lamenting about the fact that we are not living in Switzerland or Germany where all costs would be 100% covered and my husband would have 1 to 2 year payed medical leave but what is the point ? *sigh We have to do our best with what we are dealt and with what is available to us. Also, any time I feel down I come here and read about success stories shared by PC veterans and they brighten my outlook : ).
One can ask what is "bright" about PC stories, well it depends what you are looking for in any written post - to me surviving against all odds, enjoying small victories, enjoying company of loved ones, finding humor in ridiculous circumstances of PC, getting heartfelt "hug" from members and getting good advise, all are very bright, very meaningful and hope inducing. < 3

PS: I don't think that patients will ever have truly personalized care and boutique treatment unless they are VIP - very rich people and/or celebrities. It is utopia, as simple as that ...

You're absolutely right. And strangely, even the very rich people don't always do so well, despite their access to personalised care, because they're often unwilling to take advice and mainstream treatments (after living in their wealth bubbles for so long, they've developed serious narcissism and egomania).

As you can probably guess, I'm solidly bourgeois: I have no rich ancestors that I know of, just shopkeepers, artisans, lawyers, doctors, engineers, etc, so I've hung onto my Methodist ancestors' disdain for the uber-wealthy. 🙂

As far as cost to the patient goes, we're somewhere in-between the U.S. and Switzerland/Germany here in Canada. Most medical costs are 100% covered (I just show my OHIP card at the front desk), but we don't have universal pharmacare or dental care yet.

To get your prescription drugs covered in Ontario between the age of 25–64, you need private insurance through work, to be receiving social assistance, or to be falling back on the Trillium Drug Benefit (which has a co-pay topping out at 4% of your family income). They're talking seriously about fixing that, but it hasn't happened yet. Under 25 or over 64, it's all covered with just a dispensing fee at the pharmacy (typically around $5–10).

The good news is that drugs aren't crazy expensive here, even if you had to pay full retail yourself. For example, Orgovyx costs about US $215/month, compared to around $2,700/month in the States for someone who is uninsured. Insulin is also about 20% of the cost, etc. etc.

But doesn’t proven science always become dogma? Don’t positive results time after time validate the thesis, which then becomes the proof?
I do not disagree at all that we all have peculiarities, quirks, genetic flaws which may alter our treatment or require ‘out of the box’ solutions.
But we must return to the realities of your healthcare system: PSMA PET and genetic testing cost money; enough money, in fact, that it could possibly be used to treat an additional patient or two with a different malady/injury.
So I think you should be raising your fist to THAT, not dogma.
Phil

I had a talk with my oncologist (also in Ontario) about this yesterday at our quarterly appointment. He was a resident at Harvard Medical School before returning to Canada, so he's quite familiar with PSMA PET, even though it became available in Canada only in 2022 when the makers of the radioactive agent finally bothered to get it approved here.

He knows he can talk frankly with me — which I appreciate — and he said the biggest challenge with PSMA PET is that the field doesn't know yet exactly what to do with the results. By that, he doesn't mean that they're ignorant of the latest treatment options, but (I think) that the body of research isn't there yet to establish whether they're over-/under-treating based on the more-sensitive results that PSMA PET provides over CT, MRI, and/or bone scan.

That makes sense to me. It's the same problem they faced a few decades ago when PSA screening first became available, and they were way overtreating people based on small PSA rises "just to be safe," because they didn't have other risk-assessment tools and best-practices established yet.

PSMA PET scans are available at my Cancer Centre, but his advice is to wait until my PSA starts rising above 0 before getting one, because then the treatment options will be clearer if the scan shows some potential tiny positive results. As long as my PSA is 0 on the ultrasensitive test, nothing's growing, so leave well enough alone. YMMV.

That really makes a lot of sense. It’s pro-forma here in the U.S. but we’ve learned that “clear” doesn’t mean much, “suspicious” is mere interpretation, and “suggestive” means absolutely nothing.
Add to this the fact that PSMA picks up other echoes from normal tissues and you have to wonder why we use it at all.
Maybe the older Axumin scans weren’t so bad after all. Thanks, North, for sharing.
Phil

The crossover of aging. My Advanced Prostate Cancer is part of my aging process. I am 70+. The neurological cogs in my brain are in decline along with my prostate gland and entire body. Biological decline is good, it's natural. I'm learning to embrace it. The economics of my healthcare are beyond my control. I just know that the healthcare industry is earning their keep.

Proven science applies to statistics. I am not a statistic. Proven science dictates that the treatment plan I am on works in 85% of patients. Where does this leave the narrative of tailored approaches for each particular tumor? Dogma is applied because it affords industrialized care. Do I benefit from it? I really don't know, because the local dogma police doesn't allow me to discuss options or strategies. All for the sake of Dogma, you understand... So I do not buy your argument

So what is the preferred treatment for your 15% of the PCa population in a perfect world?
Please tell me what I’m missing, because aside from the impression I get that your doctors are unfeeling, uncaring troglodytes, your treatment to my layman’s eye seems world class.
You didn’t have a PSMA, but that changes nothing since you’re on Firmagon - and your PSA dropped massively; you are obviously androgen sensitive.
You did not have genetic testing, but again, what could have been found that would change your treatment?? At least 3 members on this forum have had genetic testing revealing BRCA mutations; have any of them NOT had ADT?
None of your treatment has been rendered for the sake of Dogma; it’s been rendered for the sake of correct protocol, taking into consideration your poor risk profile for surgery.
As to the continuation of ADT for 18 months, that is still up to YOU, and your decision to make, no matter how mean and nasty your doctor speaks to you.
Phil