Health progress

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Re: Health progress

Postby Tim Ford » Wed Nov 01, 2017 1:07 pm

Sounds like a plan, Larry, and you'll come through like gangbusters!

Oh, and hair is over-rated... (unless it's really really cold outside)
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Re: Health progress

Postby Ajax » Wed Nov 01, 2017 7:52 pm

I'm glad to hear the risk assessment. I didn't get that during our texts. It's a little scary but I think you'll be happy to have that damned thing out of you and get on with life.

Remember, we have a weekend sailing expedition to get on with next May. Oh- my buddy Shane really thinks highly of you and has volunteered to crew as well.
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Re: Health progress

Postby BeauV » Wed Nov 01, 2017 8:25 pm

I don't know how you feel, Larry, but I would REALLY want that lump out of me. Full stop. I like our plan and have all my fingers and toes crossed that it works!
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Re: Health progress

Postby Rob McAlpine » Wed Nov 01, 2017 8:50 pm

Get the surgery done and over. That gives you until summer to recuperate. For sailing. Yeah, sailing. Then maybe an after sailing drink. Yeah. I'm liking this plan.
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Re: Health progress

Postby LarryHoward » Wed Nov 01, 2017 9:14 pm

Ajax wrote:I'm glad to hear the risk assessment. I didn't get that during our texts. It's a little scary but I think you'll be happy to have that damned thing out of you and get on with life.

Remember, we have a weekend sailing expedition to get on with next May. Oh- my buddy Shane really thinks highly of you and has volunteered to crew as well.


Yeah, it’s the risk thing. Pretty impressive slope change in the regrowth curve at 3 years and it essentially goes flat at 5. Basically, if you get it out and kill any remnant cells running around, then they cautiously use the “cure” word. The problem is that these are so aggressive that you have to go aggressive to fight them. Down side of that is the chemo is really toxic and it comes down to poisoning the tumor cells faster than the rest of the body. I’m really fortunate that I’ve had really good tolerance and we have made it to this point and the docs can talk about following up over the coming years.

Not over until it’s over but surgery is the right answer. Just having the tumor out for the pathologist to have her way with the margins and the core of the tumor will tell us a lot.
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Re: Health progress

Postby TheOffice » Thu Nov 02, 2017 8:23 am

You are on the road to recovery and remission!
be well!

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Re: Health progress

Postby kdh » Thu Nov 02, 2017 9:41 am

BeauV wrote:I don't know how you feel, Larry, but I would REALLY want that lump out of me. Full stop. I like our plan and have all my fingers and toes crossed that it works!

The "just get it out" thinking about cancer has been evolving recently. There's evidence that basically if we look hard and often enough we'll find cancer in everyone. This is a huge issue for the idea of early screening. A lot of the breast and prostate cancers that we've "cured" would have gone away on their own. Basic probability says that cancer will kill everyone eventually unless something else kills them first.

http://www.nytimes.com/2014/01/05/sunday-review/why-everyone-seems-to-have-cancer.html
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Re: Health progress

Postby LarryHoward » Thu Nov 02, 2017 10:16 am

kdh wrote:
BeauV wrote:I don't know how you feel, Larry, but I would REALLY want that lump out of me. Full stop. I like our plan and have all my fingers and toes crossed that it works!

The "just get it out" thinking about cancer has been evolving recently. There's evidence that basically if we look hard and often enough we'll find cancer in everyone. This is a huge issue for the idea of early screening. A lot of the breast and prostate cancers that we've "cured" would have gone away on their own. Basic probability says that cancer will kill everyone eventually unless something else kills them first.

http://www.nytimes.com/2014/01/05/sunday-review/why-everyone-seems-to-have-cancer.html


Keith. Don’t disagree. Lynne and I had long discussions about surgery or no surgery. Even the surgeon suggests we could “watch it” at this point. Tipping point is that we know that this is a very aggressive cancer with a 30+ % chance of regrowth, even with the surgery. This is rare enough that the percentages aren’t all that solid and include multiple variants of Soft Tissue Sarcoma, including those not all that responsive to chemo or radiation. Docs say taking it out gives us the data to know if we “got it all” with more confidence. If there is vital tissue remaining in the tumor or it’s margins, surgery is likely the life saving procedure. If there is only necrotic or scar tissue on pathology, then surgery was just insurance. Unfortunately, no way to make the distinction without the surgery or watching and waiting to see if it starts growing again. If it starts growing again, it means starting over on treatment plan with a low probability that I could tolerate the full course of chemo next time.

So basically, surgery arguably offers risk reduction that exceeds the risk of surgery
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Re: Health progress

Postby Tim Ford » Thu Nov 02, 2017 11:00 am

kdh wrote:
BeauV wrote:I don't know how you feel, Larry, but I would REALLY want that lump out of me. Full stop. I like our plan and have all my fingers and toes crossed that it works!

The "just get it out" thinking about cancer has been evolving recently. There's evidence that basically if we look hard and often enough we'll find cancer in everyone. This is a huge issue for the idea of early screening. A lot of the breast and prostate cancers that we've "cured" would have gone away on their own. Basic probability says that cancer will kill everyone eventually unless something else kills them first.

http://www.nytimes.com/2014/01/05/sunday-review/why-everyone-seems-to-have-cancer.html


Interesting that that article makes little mention of metastatic cancer (doesn't even use the word).

Makes it sound like everyone has something anomalous growing somewhere, perhaps we older folks do, but the rub is when mutated cells undergo a shape-change (similar to a phase in embryonic development [gastrulation]--forgive the gross oversimplification, though) which allows bad cells to dissociate from their cellular substrate and move somewhere else.

There's a big difference being having to pee 3X a night due to prostate tumors, and suffering from terminal bone cancer from mets that form from these tumors and move to another town, so to speak. So while the article is somewhat soothing in its reminder we all have mutations, or have them to look forward to, some are pretty sucky. It's all fun and games until they find someplace else to grow.

I'm OK with having had mine surgically removed and suspect you'll feel similarly, Larry, once you get the path reports -- which I have full faith will have suggest a brilliant prognosis!!!
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Re: Health progress

Postby Orestes Munn » Thu Nov 02, 2017 11:23 am

It is true that our cells break free of the controls on division from time to time, but this only results in clinical disease some unknown fraction of the time. The immune system cleans some tumors up, others outgrow their blood supply, etc. Therefore, as detection gets better and more people get it, we have to think about who actually benefits from intervention. Prostate is the prototype slow-growing malignancy and has a low propensity for early metastasis. It is also common in men of a certain age and its biology is relatively well understood. That makes it a classic case where aggressive treatment may be worse than the disease.

This does not apply to terrifyingly aggressive tumors, such as the sarcoma in this thread or, for instance, breast cancer after it reaches some threshold size. Every doctor has seen cases of "tumor of unknown origin" presenting with brain, lung, or liver metastases. That's an undetectably small tumor seeding the bloodstream with malignant cells. In women, most turn out to be breast.
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Re: Health progress

Postby Tim Ford » Thu Nov 02, 2017 11:43 am

Yup, that's why I sorta wonder about the tone, or intention, of the article.

Maybe I missed the point, but the message seems to want to "normalize" cancer. Lethal mutations have a function in evolution, but in the context of human families, they are deleterious.

With regard to PC, yes the lethality of the disease has diminished significantly as new treatment options are introduced in what seems like six-month intervals, but let's not understate it's danger...it's still the 3rd leading cause of cancer death in men and it's estimated that ~ 27,000 men will die of it this year, the NYT's softer, cuddlier slant on cancer notwithstanding.
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Re: Health progress

Postby kdh » Thu Nov 02, 2017 11:52 am

Larry, I wasn't speaking of your case. For what it's worth, I think if I were in your shoes I'd get the surgery. Will the surgery be essentially a biopsy where they'll err on the side of preserving healthy tissue, or are they going for complete excision?
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Re: Health progress

Postby Orestes Munn » Thu Nov 02, 2017 11:53 am

Tim Ford wrote:Yup, that's why I sorta wonder about the tone, or intention, of the article.

Maybe I missed the point, but the message seems to want to "normalize" cancer. Lethal mutations have a function in evolution, but in the context of human families, they are deleterious.

With regard to PC, yes the lethality of the disease has diminished significantly as new treatment options are introduced in what seems like six-month intervals, but let's not understate it's danger...it's still the 3rd leading cause of cancer death in men and it's estimated that ~ 27,000 men will die of it this year, the NYT's softer, cuddlier slant on cancer notwithstanding.

Well, newspapers are sold on stories with contrarian takes.

Cancer, except in rare instances, arises from brand new mutations in normal body cells. A photon hits a skin cell, breaks a piece of DNA, and melanoma. That's technically a mutation, but not one that has much evolutionary impact because it's not in the "germ line," the way, say, the BRCA gene for breast cancer is.
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Re: Health progress

Postby BeauV » Thu Nov 02, 2017 12:10 pm

Keith, from what I understand you're exactly right. We are always making and eliminating cell mutations. It's part of being human. Without it, Darwin's explanation of evolution wouldn't work. All sorts of good mutations have occurred, like being able to digest milk etc... The "cancers" are the bad mutations that risk killing the host, but you know all that.

I think Larry has already said what I was going to, that this cancer seems particularly bad if it returns. I was speaking more about attitude. I have a strong suspicion that a positive aggressive attitude really helps with these things. If it takes a surgery to establish in Larry's mind that he has killed the damn thing, then that's worth a lot. (under my attitude theory)
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Re: Health progress

Postby Tim Ford » Thu Nov 02, 2017 12:20 pm

Orestes Munn wrote:
Tim Ford wrote:Yup, that's why I sorta wonder about the tone, or intention, of the article.

Maybe I missed the point, but the message seems to want to "normalize" cancer. Lethal mutations have a function in evolution, but in the context of human families, they are deleterious.

With regard to PC, yes the lethality of the disease has diminished significantly as new treatment options are introduced in what seems like six-month intervals, but let's not understate it's danger...it's still the 3rd leading cause of cancer death in men and it's estimated that ~ 27,000 men will die of it this year, the NYT's softer, cuddlier slant on cancer notwithstanding.

Well, newspapers are sold on stories with contrarian takes.


Yeah, and public opinion is sometimes influenced by newspapers (and millions of political ads paid for by the Russians :-) )

Here's my beef with this, to be perfectly honest: there seems to be a trend in health policy that is subtly (and sometimes not so subtly) proposing that early screening, detection and treatment are unnecessary. Witness the shit storm stirred up by the USPSTF in 2009, with the breast cancer screening guidelines they published.

Question: is this all about cost-cutting for federally subsidized health care programs? Because I can't figure out any other rationale for these pronouncements toward laissez-faire detection and treatment (similar case with the PC issue...delay screening until 50-something, etc)

Like the fellow with the Abysmal Throat said, "follow the money."
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Re: Health progress

Postby Orestes Munn » Thu Nov 02, 2017 12:26 pm

Tim Ford wrote:
Orestes Munn wrote:
Tim Ford wrote:Yup, that's why I sorta wonder about the tone, or intention, of the article.

Maybe I missed the point, but the message seems to want to "normalize" cancer. Lethal mutations have a function in evolution, but in the context of human families, they are deleterious.

With regard to PC, yes the lethality of the disease has diminished significantly as new treatment options are introduced in what seems like six-month intervals, but let's not understate it's danger...it's still the 3rd leading cause of cancer death in men and it's estimated that ~ 27,000 men will die of it this year, the NYT's softer, cuddlier slant on cancer notwithstanding.

Well, newspapers are sold on stories with contrarian takes.


Yeah, and public opinion is sometimes influenced by newspapers (and millions of political ads paid for by the Russians :-)

Here's my beef with this, to be perfectly honest: there seems to be a trend in health policy that is subtly (and sometimes not so subtly) proposing that early screening, detection and treatment are unnecessary. Witness the shit storm stirred up by the USPSTF in 2009, with the breast cancer screening guidelines they published.

Question: is this all about cost-cutting for federally subsidized health care programs? Because I can't figure out any other rationale for these pronouncements toward laissez-faire detection and treatment (similar case with the PC issue...delay screening until 50-something, etc)

Like the fellow with the Abysmal Throat said, "follow the money."

No. This is honest health-care economics, right or wrong. Government and private insurers know they're going to pay a lot more in the end to treat tumors if they're wrong. When I follow the money, I find the drug and device companies who control key congresspeople and will fight any attempt to curb or ration aggressive detection and treatment tooth and nail.
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Re: Health progress

Postby LarryHoward » Thu Nov 02, 2017 12:28 pm

Orestes Munn wrote:It is true that our cells break free of the controls on division from time to time, but this only results in clinical disease some unknown fraction of the time. The immune system cleans some tumors up, others outgrow their blood supply, etc. Therefore, as detection gets better and more people get it, we have to think about who actually benefits from intervention. Prostate is the prototype slow-growing malignancy and has a low propensity for early metastasis. It is also common in men of a certain age and its biology is relatively well understood. That makes it a classic case where aggressive treatment may be worse than the disease.

This does not apply to terrifyingly aggressive tumors, such as the sarcoma in this thread or, for instance, breast cancer after it reaches some threshold size. Every doctor has seen cases of "tumor of unknown origin" presenting with brain, lung, or liver metastases. That's an undetectably small tumor seeding the bloodstream with malignant cells. In women, most turn out to be breast.


Keith, Complete excision. Trials have shown leaving anything provides an outcome similar to no surgery. We discussed a biopsy but it's basically looking at the tumor through a soda straw. All it would tell us is whether the specific tissue in the biopsy is vital or not so unless positive for disease, would be inconclusive. Post treatment, I have authorized them to retain the tumor is a tissue bank to support future research.

What I have is absolutely from a mutation. From the incidence of disease, the few people that have this mutation tend to be younger, as in usually before puberty so generally, it occurs when you are growing rapidly or not at all. About 1 in 10 occur after age 20. They haven't been able to connect it with any specific causes such as environmental exposure. Just a very rare mutation that runs rampant. OM's description as "terrifyingly aggressive" is unfortunately true. When diagnosed, the presumption is that it has metastasized. If scans don't reveal any metastases, they assume it has "micro-metastasized", hence the aggressive and prolonged high dose chemo. It's why I chased down the best in the country for treatment.

"Ewing sarcoma is the result of a translocation between chromosomes 11 and 22, which fuses the EWS gene of chromosome 22 to the FLI1 gene of chromosome 11." Molecular level studies of the tumor is how it is definitively diagnosed.
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Re: Health progress

Postby Olaf Hart » Thu Nov 02, 2017 2:47 pm

Tim Ford wrote:
Orestes Munn wrote:
Tim Ford wrote:Yup, that's why I sorta wonder about the tone, or intention, of the article.

Maybe I missed the point, but the message seems to want to "normalize" cancer. Lethal mutations have a function in evolution, but in the context of human families, they are deleterious.

With regard to PC, yes the lethality of the disease has diminished significantly as new treatment options are introduced in what seems like six-month intervals, but let's not understate it's danger...it's still the 3rd leading cause of cancer death in men and it's estimated that ~ 27,000 men will die of it this year, the NYT's softer, cuddlier slant on cancer notwithstanding.

Well, newspapers are sold on stories with contrarian takes.


Yeah, and public opinion is sometimes influenced by newspapers (and millions of political ads paid for by the Russians :-) )

Here's my beef with this, to be perfectly honest: there seems to be a trend in health policy that is subtly (and sometimes not so subtly) proposing that early screening, detection and treatment are unnecessary. Witness the shit storm stirred up by the USPSTF in 2009, with the breast cancer screening guidelines they published.

Question: is this all about cost-cutting for federally subsidized health care programs? Because I can't figure out any other rationale for these pronouncements toward laissez-faire detection and treatment (similar case with the PC issue...delay screening until 50-something, etc)

Like the fellow with the Abysmal Throat said, "follow the money."


From the latest Aus screening guidelines, they have changed a lot since I was a boy.


https://www.racgp.org.au/your-practice/ ... n-benefit/
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Re: Health progress

Postby kimbottles » Thu Nov 02, 2017 4:18 pm

For the record:
A regular mammogram very likely saved Susan’s life.
(I‎t cost her both her breasts, but that is a small price to pay to keep her alive.)

Don’t try and tell me that mammograms are unnecessary!
BULLSHIT!
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Re: Health progress

Postby BeauV » Thu Nov 02, 2017 4:18 pm

Olaf Hart wrote:...snip...


From the latest Aus screening guidelines, they have changed a lot since I was a boy.


https://www.racgp.org.au/your-practice/ ... n-benefit/[/quote]

OH, I'm surprised at the comments about CCTA. I was involved with developing the use of this with flow analysis, now FDA approved, that is marketed by Heartflow. Obviously, one shouldn't do this to an asymptomatic patient, but that's beside the point. I'd argue that every person who is about to receive diagnostic angiography should consider CCTA+Heartflow as a much less risky alternative. I'd also be willing to argue that their footnote on the radiation involved is simply wrong, to the best of my understanding.

Thoughts?

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Re: Health progress

Postby kdh » Thu Nov 02, 2017 4:29 pm

Beau, my understanding is that there's a lot of confusion between a CT angiogram (CCTA), which uses an iodine-rich contrast injection and a plain old CT scan of the heart used to get a calcium score. The former involves significant radiation, that latter the same as a standard X-ray.

Heartflow uses a basic CT scan, no dye.
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Re: Health progress

Postby Olaf Hart » Thu Nov 02, 2017 4:45 pm

I actually discussed some of these with a colleague who is a Canadian expert, and responsible for some of these recommendations.

I have problems with a lot of them, they don’t correspond with my clinical experience.

The basic issue is they are “ evidence based” and the evidence isn’t that reliable.

Just because there isn’t good evidence supporting some older recommendations doesn’t mean they are not correct.

At a population level these recommendations may be correct. On an individual level there will be many stories that dispute them. Doctors work with individuals.

I am not PC at all on this in a professional sense, but I have some issues with the whole evidence based approach.

Firstly, evidence is the result of studies funded by drug companies or governments, it is very selective and distanced from the real world where we deal with complex multiple variables, not single variables.

Secondly, most medical knowledge has developed through reported clinical observation which later may be supported by studies. This evidence based culture discounts information from this source.

For example, the recommendation on MTHFR screening completely ignores the possibility of a direct link between methylation issues and mental illness. There is also a possible link to vascular dementia.

If I look at the internet there are thousands of personal examples of its benefit, and many clinical observations, but limited formal clinical studies because epigenetics is a new area. This is a big issue, for example, in the natural therapy space.

The recommendations also discount the value of rectal examination and pelvic examination, I could not start to describe the hundreds of times I found pathology with these examinations over my clinical career.

But I am expected to teach this stuff, and my registrars are examined on these guidelines ...
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Re: Health progress

Postby BeauV » Thu Nov 02, 2017 5:00 pm

kdh wrote:Beau, my understanding is that there's a lot of confusion between a CT angiogram (CCTA), which uses an iodine-rich contrast injection and a plain old CT scan of the heart used to get a calcium score. The former involves significant radiation, that latter the same as a standard X-ray.

Heartflow uses a basic CT scan, no dye.


I haven't dug into the last 18 months of Heartflow's process, but when I was working there we definitely used Iodine contrast. My objection to the comment about radiation is that it's out of date. Modern CTs have much better receivers and can operate on far less power. They also have much higher resolution and yield far better results. I've dropped an email to the Clinical head to see if I'm out of date.

I don't think we ever use calcium score as the bases of the FFRct.
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Re: Health progress

Postby Olaf Hart » Thu Nov 02, 2017 5:21 pm

I think I mentioned this in another thread, after my last session teaching screening I decided I was not going to do any more clinical education, I have reached the terminal level of ethical dissonance.
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Re: Health progress

Postby Orestes Munn » Thu Nov 02, 2017 5:46 pm

I‎t is said that the three most dangerous words in medicine are “in my experience.” As Keith will tell us, chance creates all kind of ordered-appearing results when we look at limited samples. I had a highly respected clinical teacher when I was a res, who swore I‎t was malpractice not to anticoagulate all ischemic strokes, based on an illustrious 30-year, Ivy League, career. No control group, no statistics, just his “experience.” Needless to say, he was dangerously wrong. I saw a GI bleed or two on his service and I wonder if he actually killed anyone. I often think of old Roy and his rat poison when when this topic comes up.
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Re: Health progress

Postby Olaf Hart » Thu Nov 02, 2017 5:51 pm

I get that too, but the stuff that has a good evidence base is a small subset of the clinical judgements we have to make every day.
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Re: Health progress

Postby Orestes Munn » Thu Nov 02, 2017 5:57 pm

Olaf Hart wrote:I get that too, but the stuff that has a good evidence base is a small subset of the clinical judgements we have to make every day.

I have the luxury of having to make very few clinical judgments, so it’s easy for me to go all academic. However, I have been so wrong, so many times, that I‎t has made me a terrible skeptic.

In particular, I take your point about very small and ill-fitting bodies of evidence being given undue weight. That’s dangerous too.
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Re: Health progress

Postby Olaf Hart » Thu Nov 02, 2017 6:06 pm

Orestes Munn wrote:
Olaf Hart wrote:I get that too, but the stuff that has a good evidence base is a small subset of the clinical judgements we have to make every day.

I have the luxury of having to make very few clinical judgments, so it’s easy for me to go all academic. However, I have been so wrong, so many times, that I‎t has made me a terrible skeptic..


It’s true, the more you know the harder medicine gets.
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Re: Health progress

Postby kdh » Thu Nov 02, 2017 6:59 pm

BeauV wrote:
kdh wrote:Beau, my understanding is that there's a lot of confusion between a CT angiogram (CCTA), which uses an iodine-rich contrast injection and a plain old CT scan of the heart used to get a calcium score. The former involves significant radiation, that latter the same as a standard X-ray.

Heartflow uses a basic CT scan, no dye.


I haven't dug into the last 18 months of Heartflow's process, but when I was working there we definitely used Iodine contrast. My objection to the comment about radiation is that it's out of date. Modern CTs have much better receivers and can operate on far less power. They also have much higher resolution and yield far better results. I've dropped an email to the Clinical head to see if I'm out of date.

I don't think we ever use calcium score as the bases of the FFRct.

I guess I'm also confused.

I've heard that the preference for a standard, through-your-groin angiogram is from its being a setting that allows implanting a stent if necessary, another questionable practice.

Death is a certainty but in any given year it's not all that probable and as such if we look for something bad a false you-might-die-of-this is likely and believable because, well, we all die eventually.

Think of the likelihood of someone winning the lottery twice. Unlikely, right? No. The probability that I win the lottery twice is epsilon but anyone?

What's the probability that I win the lottery once? Still miniscule. That someone wins it is a certainty.

I'm with OM. Getting medical diagnoses and treatments right screams for large-sample statistical methods, not human experts.
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Re: Health progress

Postby Olaf Hart » Thu Nov 02, 2017 7:02 pm

So how do those statistical methods allow for a large number of confounding variables?

Are we talking about longitudinal studies here?
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