I agree.

Can patients in the throes of getting this terrifying news really make an informed choice about whether they want the test? Are they able to understand at such a fraught time that, for now at least, there is nothing that can save them if they get the bad prognosis?

People get similarly traumatic information all the time - cancer biopsies and so forth.

Also, they say if the test comes out a certain way, nothing can be done. But that's good, because in the absence of the test, they would be getting risky and unnecessary surgery and other treatment which would reduce their quality of life.

There are lots of problems with overuse of tests, especially ones given to healthy people which will inevitably produce many more false positives than true. This does not seem to be one of them.

Also, MRI for uncomplicated headache is not recommended - almost the definition of unnecessary care.

No, this is a headache so big that the tumor is bulging out of your skull. Like you've got bone fragments and an open wound, and just below, a pulsing visible tumor which glows in the dark, like lava.

And it makes a beeping sound whenever you walk backwards.

Uh-oh, Stanster, you should get that checked out.

I think the idea is that if you turn out to be Class 1, that answer doesn't help you (you would have lived anyway) but if you turn out to be Class 2, that answer hurts you (now you're depressed about how you only have a 20-30% chance of survival so you won't be a fighter).

Plus doctors just know better than patients no matter what so quit arguing with them.

Yeah, but that doesn't hold up if the treatments for the two groups are different, or if we need clinical trials for the second type specifically, as seems likely.

I thought pretty much every bit of research, ever, suggested that the whole 'fighter' thing is bullshit anyway?

Plus, if you knew, you'd have plenty of time to develop expensive tastes in whisky.

Or, you know, you could spend your final days drinking something that tastes good.

OT:

I just visited Amazon and was greeted with this:

------------------------------------------------------------

Dear Customers,

At Amazon, we like to pioneer, we like to invent, and we're not willing to do things the normal way if we can figure out a better way.

One area where we've seen particular success is our fulfillment center network. Sustained innovation inside our fulfillment centers has driven improved reliability, accuracy, and speed of delivery, as well as productivity and safety. Our high productivity allows us to pay our fulfillment center employees 30% more than traditional physical retail store employees while still offering customers the lowest prices. Our work on safety practices has been so effective that it's statistically safer to work in an Amazon fulfillment center than in a traditional department store.

Our bias for reinvention extends into our recruiting teams. For most of the year, our full-time fulfillment center employees can keep up with customer demand. But during the holiday gift-giving season, our peak needs temporarily double, and we employ many more people. Our seasonal recruiting program called CamperForce -- where RVers combine work with camping -- has been very successful and much written about in the media. And our military veteran recruiting program effectively helps vets transition into the civilian workforce. Amazon was recently named the #1 Top Military Friendly Employer by G.I. Jobs Magazine.

Those are just a few examples, and innovation doesn't stop. Today, we're announcing our newest innovation -- one we're especially excited about -- the Amazon Career Choice Program.
Learn about the Amazon Career Choice Program

›Learn more about the Amazon Career Choice Program

Many of our fulfillment center employees will choose to build their careers at Amazon. For others, a job at Amazon might be a step towards a career in another field. We want to make it easier for employees to make that choice and pursue their aspirations. It can be difficult in this economy to have the flexibility and financial resources to teach yourself new skills. So, for people who've been with us as little as three years, we're offering to pre-pay 95% of the cost of courses such as aircraft mechanics, computer-aided design, machine tool technologies, medical lab technologies, nursing, and many other fields.

The program is unusual. Unlike traditional tuition reimbursement programs, we exclusively fund education only in areas that are well-paying and in high demand according to sources like the U.S. Bureau of Labor Statistics, and we fund those areas regardless of whether those skills are relevant to a career at Amazon.

Like many of our innovations at Amazon, the Career Choice Program is an experiment. We're excited about it and hope it will pay big dividends for some of our employees. This is one innovation that we hope other companies in this economy will copy.

Thanks for being a customer,

Jeff Bezos
Founder & CEO

-----------------------------------------------------------

Obviously they're feeling some heat over the ugly stories about working conditions in their warehouses.
Proof that costumer pressure/public shaming can actually accomplish something, or pure PR bullsh*t?

Unlike traditional tuition reimbursement programs, we exclusively fund education only in areas that are well-paying and in high demand according to sources like the U.S. Bureau of Labor Statistics

So these fuckers won't pay for, say, a liberal arts or music degree? Fuck you, Jeff Bezos.

Could we not hijack threads in the first 10-20 comments, please?

What I mean is, I do like off-topic niblets, but they can revive a dead thread, rather than kill a new topic. Or email it to me and it can have a thread of its own! I'm generally scrambling for content, so I get cranky when it gets undermined.

Could we not hijack threads in the first 10-20 comments, please?

Sorry. I forgot that Teo's rule says 40 comments before derailing.

On topic, in the case described in the linked story, getting tested sounds like the thing to do.

More generally, I can see how the "why not get tested? You might catch something early?" logic can break down.

You could practically make a hobby out of getting tested for various types of cancer. Maybe you really would catch something early, but the constant stress would probably reduce your overall quality of life.

I suppose it depends on how much you hate doctors/hospitals.

Does Teo get to make rules just because he was in law enforcement (kind of)?

It's all in the hat. If you can find one of those hats, you can make rules, too, Mobers.

I find it very easy to imagine wanting not to know the outcome of the test, and to just continue living in quasi-denial about the whole thing until either I get better or my liver goes all to tumors.

Obviously that doesn't work if the treatments are different (I missed it if the article said one way or the other), and I'm not saying this is the correct approach (is there really a correct approach?) but it's easy for me to understand it.

The new book How We Do Harm by Dr. Otis Brawley of the American Cancer Society really incenses one about the medical profession in general and screenings and oncology specifically.

On PSA screening:

I tell Ralph about a conversation I had with a marketing guy at a major American cancer center. He explained that they ran free screenings at a local mall every September as part of Prostate Cancer Awareness Month. As I struggled to control my anger, this gentleman explained the business formula:

"First, free screening provides free good publicity for the health system. People really feel good about us, because this is a community service. It will cause women to come to our women's center and men to come to our chest-pain center. It increases almost all of our product lines. It's cheap, effective advertising.

"For every thousand men over age fifty who volunteer for free screenings, one hundred and forty-five will have an abnormal screen. ...One hundred and thirty-five will come to us to see why they have an abnormal screen. We make up the cost of offering free screening by charging for evaluation of the abnormal screens. About forty to forty-five will have cancer. We hit bingo with them. We know the number who will get radical prostatectomy, the number who will get radiation therapy, the number who will get hormones.

"We know the number who will have incontinence so bad that they will want an artificial urethral sphincter implanted. We even know the number who will not be able to get erections and will want Viagra. We know for how many Viagra won't work. We know how many penile prostheses we will sell."

Realizing that I have been granted an audience with Lucifer, I asked the fundamental question: "How many lives will you save if you screen a thousand men?"

The marketer took his glasses off and looked at me as if I were a fool. "Don't you know, no one knows if this stuff saves lives? I can't give you a number on that."

Also, the description of the eye operation is really gross. EW. ew.

Let's just take a minute to reflect on the fact that there's a "marketing guy at a major American cancer center."

20: Probably got his start in viral marketing.

Marketing and advertising should be known as le vice Americain.

22: agreed

When I tell furriners that some people in the US don't want testing to know if they're at risk for future diseases because it might increase their insurance premiums or make them uninsurable, people look at me like I'm describing some barbaric capitalist dystopia. Oh, wait...

The Greeks got sodomy so we'll just have to do with a pointless vice.

Even more on topic, when I read that article, I was wondering, who walks around completely blind in one eye for 5 months before seeing a doctor? Even if you're poor and young and rural, that seems extreme. If I suddenly went blind in one eye, I would not just wait around to see if it cleared up.

And it makes a beeping sound whenever you walk backwards.

I think you need a mechanic, not an MRI.

It's all in the hat.

Most people respect the badge. Everyone respects the gun hat.

I thought pretty much every bit of research, ever, suggested that the whole 'fighter' thing is bullshit anyway?

I don't know the research, but that wouldn't surprise me, in terms of response to treatment. Where it can make a difference IME is in seeking better care, getting second and third opinions, doing one's own research, etc.

Where it can make a difference IME is in seeking better care, getting second and third opinions, doing one's own research, etc.

Obviously when in such a situation one should be aggressive in figuring things out for oneself, but I really hate that we have a system that requires that. Most people are too busy, and synthesizing research is a very complicated task, assuming you can afford access in the first place.

I might have said this before, but I suspect the common fear of doctors - that cost pressures, reform, or managed care is going to make them follow guidelines and get approval for absolutely everything they do, reducing their income and making them more like nurse practitioners in status - may actually be a good thing. It's not clear they've paid off society's investment of trust in them (all their professional autonomy), as witnessed by the rule of thumb not to trust them.

I'm not sure I'd automatically accept the test, because it is going to mean no difference in treatment or follow-ups, at least at first. Almost everyone in Class 1 survives, but not all, so people are still going to be monitored either way. About 3/4 of Class 2 will die because the cancer re-emerges in the liver, and there's nothing that can be done, so catching it early means... having less hope for a few months.

I'm not sure what benefit knowing provides me if I end up in Class 2, and the test is expensive. I might rationally prefer to wait and see what happens.

(Obviously I'm talking out of my ass, but) I think that I would want the extra time to prepare for my death. If you take the test two years out, you can, as the cliche goes, live life like you're dying.

Who knows if I'd actually have the wherewithal to process dying in any capacity, or if I'd just shrivel up and be terribly depressed.

I'd want the test so I could know whether to quit my job and start eating ice cream and chocolate non-stop. Also, make sure to spend time with all my loved ones, etc.

"I've got some good news and some bad news. The good news is you can go ahead and start smoking again."

It think the test really changes the cost-benefit analysis of the treatment. Cancer treatment is, from what I understand, really rough. If I've got this Class 2 type of cancer, and there's only a 20-30% chance that even the most aggressive treatment will have any effect, then I spend the next five years (or whatever) with those around me, trying to stay comfortable, on vacation, or what the hell ever. If I've got this Class 2 type and I think it's much more curable, I would be willing to endure much more treatment. I'd basically waste a lot of the time I had left on really agressive treatment rather than spending the time with those around me and trying to focus the quality of my life.

The obvious thing to do, from a medical-industrial complex perspective, is give this test to people and enroll the Class 2 people in studies to find something that might work.

30.1: Word. My father can be an obsessive and demanding pain in the ass, which, as it turns out, is an excellent personality type to be a patient advocate. He had the time (he was retired), money, resources, skills, and general bullheadedness to learn everything about my mom's cancer, research doctors and treatments, fly across the country for second opinions, take notes of every conversation with doctors, track her test results, and demand more attention.

If you're going to go and get yourself an eye tumor, I recommend you recruit the person in your life who keeps the waiter at the table for 10 minutes when she's clearly in the weeds, has a lifetime subscription to Consumer Reports, and always gets their money back if they don't get their guaranteed satisfaction.

who walks around completely blind in one eye for 5 months before seeing a doctor? Even if you're poor and young and rural, that seems extreme.

This.

35 is a good point, but it's worth pausing to question the reliability of the numbers we have on how effective different treatments are. I won't tell anybody who chooses hospice (or the like) that it's the wrong choice, but given the amount of resources being poured into cancer treatment it seems likely that the population making up the sample in your 20-30% survival study were getting treatment that is no longer state of the art.

I suspect the same is true of the side effects of chemo as well as its efficacy. Or maybe my dad is just doing really surprisingly well for other reasons, after the oncologist very nearly recommended hospice back in December. At the time I worried a lot about his choice to charge ahead with what I expected would be very painful treatment with a low likelihood of success (recognizing of course that it wasn't my decision), but while he's not back to pre-diagnosis normal by any means and treatment is ongoing, his quality of life has definitely been on an upward trajectory these last 8 months, in spite of chemo.

Eh, I took that to be shitty writing/reporting. I mean maybe she really walked around blind for 5 months doing nothing about it. Or maybe it took 5 months of doctor visits before one of the doctors figured out why she went blind. It frequently takes me 5 or 6 weeks to get an appointment with someone, and they frequently don't do anything but tell me to schedule an additional appointment for some test after which I can schedule a third appointment to follow up, after which I am told to make an appointment with a different specialist.

40 to 38 and whichever comment 38 was quoting

It's written really terribly, then:

In May 2011, Cassandra Caton, an 18-year-old with honey-colored hair and the soft features of a child, suddenly went blind in her right eye. Five months later, an ophthalmologist noticed something disturbing. A large growth in the back of her eye had ripped her retina, destroying her vision.

And this guy sends her to the specialist - he's not the specialist.

I remain agnostic- I don't feel like I know, from that paragraph, what actually happened. (I agree that it's written really badly, regardless. The soft features of a child?)

Although I also don't think it's uncommon for people with no money to just not go to the doctor, even when something really serious happens. Maybe it will magically get better tomorrow! I'll just wait one more day, every day.

Even people with money and insurance do that, if they're me.

Pro tip: Do not do this when the problem is a cat bite.

I don't keep cats around. I'm afraid of toxoplasmosis and clay-encrusted shit.

||

This video is rather charming.

|>

When I read the OP I thought the test told you that you were either basically fine or dead man walking, no middle ground. On that interpretation I had the same opinion as heebie - of course I'd want to know.

But after reading the first dozen or so comments I realized I should read the article, so I skimmed it, and it said that "As for those in Class 2, 70 to 80 percent will die within five years." But that's not "dead man walking." That's "dead more likely than not," but a 20 to 30 percent chance of survival is not low enough to justify risky sex and exotic drugs and giving everything I own away to charity. On the other hand, if don't start living as if there's no tomorrow and then do get that liver condition, I'd feel stupid for not having the test done. The uncertainty would almost be worse than a zero percent chance of survival.

I mean, I'd still have the test done in the end, so that I know if I had the Class 1 or Class 2 type. If I'm Class 1 then I can go home and forget this ever happened. But I can understand why the decision is difficult and having the test done would be stressful and fraught.