The median IS the message
I am getting seriously annoyed by a particular aspect of having breast cancer metastases.
I belong to several online support groups.
This is about survival statistics. Firstly, the people who are still on the group and talking are, by definition, alive. Seems obvious yes?
Someone new arrives in the group and is welcomed, and is usually panicked about the median survival stats of 18-24 months. Then the rest of the group weighs in with "oh yes, I was diagnosed in 1867 and I'm still here to tell the tale, so you have hope too."
Well okay. But I have researched the stats.
The median means that half of all people with that diagnosis die in LESS than 18-24 months, and half longer than that.
The 18-24 months covers everyone with BC mets, including those who only have bone cancer which is much more likely to result in longer term survival than those who also have organs affected such as lungs, liver or brain. It mushes in together those with hormone positive cancer and those with hormone negative. (Hormone positive patients have a much better survival rate; negatives have typical survival of under a year).
The half of patients who die in longer than 24 months can see that the stats are "right skewed", meaning the range of time is very large. That is, it's not 24 months plus another 24, it's 24 months plus 10 years. You can, in other words, have BC mets and live another 10 or more years. However, the percentage of people who do is under 1% and they tend to be people with bone mets only, though there are exceptions. No one knows why some people are exceptions; they respond better to treatments and it's a mystery.
So when someone lobs in to the group, or is feeling down, the members of the group who are in that longer living category say hey, look at me, i'm still here, there is hope.
There is, too.
But also, there is reality. The fact is, that by 3 years after diagnosis, almost all patients will be dead. Fact. By 5 years there are 2% still alive. And of those 2% almost none have liver mets and even fewer brain mets. Yes, there are exceptions, and if you want to hope you'll be one of them, be my guest. People by lotto tickets, too, and I never do. The odds are too high.
I do not understand why so many women want this hope, this slim, probably-not-you hope. Perhaps it's the only way they can keep going. Perhaps American culture requires everyone to be upbeat. I dunno.
But it's really really starting to annoy me.
All of the talk about hope relies on anecdotes: I'm still alive, see? Or he's still alive, so therefore..."
Anecdotes are not as useful as we tend to think they are. They were once, when we lived in little villages - it helped us to collate and remember experiences, which back then was all we had. But now, we have access to thousands or millions of anecdotes, and putting them together into a statistical pattern is way more useful.
For instance, let's say that you're going walking in the evening in a park. It's a lovely, well tended park. You go most days and enjoy it. One day you read in the newspaper that there have been 6 murders there every year, most of them at night.
A neighbour asks you, do you think it's safe to walk there?
What do you answer?
A. I walk there every night and nothing ever happened to me.
B. There are six murders there after dark every year. It's probably not safe after dark.
Correct answer? B.
In my opinion, you're stupid if you keep walking there yourself. Why? Because one person's experience does not represent the full picture. Those six people do in fact die, and by walking there you are exposing yourself to the same. That's WHY we get aggregate pictures of things, and don't rely on the immediate experience. Unfortunately, our brains are wired to be more sensitive to something we or a friend have experienced personally. The anecdotal fallacy, it's called.
On the other hand, it is completely impossible to know if you're going to be okay or you're going to be one of the six. I think it's reasonable to answer thus:
C. There are six murders there after dark every year, but since 10,000 people walk there after dark, the chance of that being me is very small and I'm willing to take that risk. Also I mitigate my risk by staying within lit areas and taking my rottweiler with me.
Oddly, we're happy to rely on the aggregated information for other things. People are perfectly happy to quote statistics on things that have less immediate emotional impact on them. "A raw vegetable diet is good for cancer", they say. Based on studies, or groups of people who show improvements on that diet, not just on individual anecdotes.
It really annoys me that people will use statistics when they support their case, and anecdotes when they don't want to think about stats.
Going back to cancer, there's not much you can do to minimise risk besides the standard treatments and supplements available. And the cold hard facts are that no matter which category you fall into, no matter what actions you take, by the end of 3 years, a large percentage of patients will have died. You might be in the small percentage, but if you have liver mets, likely you won't be. It's a fact that more people who have mets confined to the bones are in the longer living group. Makes sense. You need your liver to keep your body ticking over. Lungs and brain, too.
Other factors affect it, such as your original tumour size, your number of affected nodes, your overall health, time from initial diagnosis to recurrence, and so forth. And all of these are not under your control either.
I get annoyed being referred to that ubiquitous article "The median is not the message" because while the author does point out the right-skewed stats and the long tail, he mainly focusses on "I am the example of a person who lived longer so there". This does NOT negate the other 99% who did die and it gives them false hope.
Why am I so against false hope?
Because it helps people to live a fake life. It stops them from planning their life, their families, their finances based on reality.
They may say it gets them through a day, and that makes it worth it. Okay then. That's your choice if that's how you want it.
Me? I prefer to deal with reality.
I see people pretending about many other things, too. People who buy stupidly expensive houses, with no deposit or savings behind them, in a crap economy, run up credit cards, buy expensive cars that need lots of petrol, designer clothes, and then when their financial matters come crashing down say "poor me!".
Sorry, you lived in a fantasy. You lived above your means. You pretended you were richer than you really were. You lived like a poor person, spending more than your means to LOOK as though you're rich. When spending 20% less would leave you in a position where you are what I'd call wealthy: with savings to see you through the bad times.
I try not to pretend, if I can. If I am, I rely on my friends and family to point it out. That means that when I make a decision, I'm aiming to consider all the factors, and if by some chance I end up lucky? Cool.
So. I have liver mets. They are extensive. I have bone mets which are even more extensive. I am feeling weaker and crapper each month despite the fact that my tumour markers are going down.
I do not expect to live longer than the median for my combination of mets which is 16 months. If I do? So be it. I am not squandering all my money; if I do live longer there's enough.
But in truth, I really don't want to live that much longer. This is not a particularly fun ride, for me or anyone close to me. I have such a constrained, mostly feeling not very good existence, that it's fine by me to go when I go. Of course, I can go whenever I like, simply by refusing treatment. Eight weeks to curtains, said my oncologist. I find that rather comforting, actually.
And there's no reason not to have hope within that. I hope for things, I do. Such as continued absence of pain or major side effects. That I can continue to do things each day that I enjoy. That my day is not filled to the brim with unpleasantness, medical stuff and weariness. That I have a high quality of life as long as possible. These are real things to hope for, and things I can affect a little with my actions.
Over to you then. Reality, or pretense?
I belong to several online support groups.
This is about survival statistics. Firstly, the people who are still on the group and talking are, by definition, alive. Seems obvious yes?
Someone new arrives in the group and is welcomed, and is usually panicked about the median survival stats of 18-24 months. Then the rest of the group weighs in with "oh yes, I was diagnosed in 1867 and I'm still here to tell the tale, so you have hope too."
Well okay. But I have researched the stats.
The median means that half of all people with that diagnosis die in LESS than 18-24 months, and half longer than that.
The 18-24 months covers everyone with BC mets, including those who only have bone cancer which is much more likely to result in longer term survival than those who also have organs affected such as lungs, liver or brain. It mushes in together those with hormone positive cancer and those with hormone negative. (Hormone positive patients have a much better survival rate; negatives have typical survival of under a year).
The half of patients who die in longer than 24 months can see that the stats are "right skewed", meaning the range of time is very large. That is, it's not 24 months plus another 24, it's 24 months plus 10 years. You can, in other words, have BC mets and live another 10 or more years. However, the percentage of people who do is under 1% and they tend to be people with bone mets only, though there are exceptions. No one knows why some people are exceptions; they respond better to treatments and it's a mystery.
So when someone lobs in to the group, or is feeling down, the members of the group who are in that longer living category say hey, look at me, i'm still here, there is hope.
There is, too.
But also, there is reality. The fact is, that by 3 years after diagnosis, almost all patients will be dead. Fact. By 5 years there are 2% still alive. And of those 2% almost none have liver mets and even fewer brain mets. Yes, there are exceptions, and if you want to hope you'll be one of them, be my guest. People by lotto tickets, too, and I never do. The odds are too high.
I do not understand why so many women want this hope, this slim, probably-not-you hope. Perhaps it's the only way they can keep going. Perhaps American culture requires everyone to be upbeat. I dunno.
But it's really really starting to annoy me.
All of the talk about hope relies on anecdotes: I'm still alive, see? Or he's still alive, so therefore..."
Anecdotes are not as useful as we tend to think they are. They were once, when we lived in little villages - it helped us to collate and remember experiences, which back then was all we had. But now, we have access to thousands or millions of anecdotes, and putting them together into a statistical pattern is way more useful.
For instance, let's say that you're going walking in the evening in a park. It's a lovely, well tended park. You go most days and enjoy it. One day you read in the newspaper that there have been 6 murders there every year, most of them at night.
A neighbour asks you, do you think it's safe to walk there?
What do you answer?
A. I walk there every night and nothing ever happened to me.
B. There are six murders there after dark every year. It's probably not safe after dark.
Correct answer? B.
In my opinion, you're stupid if you keep walking there yourself. Why? Because one person's experience does not represent the full picture. Those six people do in fact die, and by walking there you are exposing yourself to the same. That's WHY we get aggregate pictures of things, and don't rely on the immediate experience. Unfortunately, our brains are wired to be more sensitive to something we or a friend have experienced personally. The anecdotal fallacy, it's called.
On the other hand, it is completely impossible to know if you're going to be okay or you're going to be one of the six. I think it's reasonable to answer thus:
C. There are six murders there after dark every year, but since 10,000 people walk there after dark, the chance of that being me is very small and I'm willing to take that risk. Also I mitigate my risk by staying within lit areas and taking my rottweiler with me.
Oddly, we're happy to rely on the aggregated information for other things. People are perfectly happy to quote statistics on things that have less immediate emotional impact on them. "A raw vegetable diet is good for cancer", they say. Based on studies, or groups of people who show improvements on that diet, not just on individual anecdotes.
It really annoys me that people will use statistics when they support their case, and anecdotes when they don't want to think about stats.
Going back to cancer, there's not much you can do to minimise risk besides the standard treatments and supplements available. And the cold hard facts are that no matter which category you fall into, no matter what actions you take, by the end of 3 years, a large percentage of patients will have died. You might be in the small percentage, but if you have liver mets, likely you won't be. It's a fact that more people who have mets confined to the bones are in the longer living group. Makes sense. You need your liver to keep your body ticking over. Lungs and brain, too.
Other factors affect it, such as your original tumour size, your number of affected nodes, your overall health, time from initial diagnosis to recurrence, and so forth. And all of these are not under your control either.
I get annoyed being referred to that ubiquitous article "The median is not the message" because while the author does point out the right-skewed stats and the long tail, he mainly focusses on "I am the example of a person who lived longer so there". This does NOT negate the other 99% who did die and it gives them false hope.
Why am I so against false hope?
Because it helps people to live a fake life. It stops them from planning their life, their families, their finances based on reality.
They may say it gets them through a day, and that makes it worth it. Okay then. That's your choice if that's how you want it.
Me? I prefer to deal with reality.
I see people pretending about many other things, too. People who buy stupidly expensive houses, with no deposit or savings behind them, in a crap economy, run up credit cards, buy expensive cars that need lots of petrol, designer clothes, and then when their financial matters come crashing down say "poor me!".
Sorry, you lived in a fantasy. You lived above your means. You pretended you were richer than you really were. You lived like a poor person, spending more than your means to LOOK as though you're rich. When spending 20% less would leave you in a position where you are what I'd call wealthy: with savings to see you through the bad times.
I try not to pretend, if I can. If I am, I rely on my friends and family to point it out. That means that when I make a decision, I'm aiming to consider all the factors, and if by some chance I end up lucky? Cool.
So. I have liver mets. They are extensive. I have bone mets which are even more extensive. I am feeling weaker and crapper each month despite the fact that my tumour markers are going down.
I do not expect to live longer than the median for my combination of mets which is 16 months. If I do? So be it. I am not squandering all my money; if I do live longer there's enough.
But in truth, I really don't want to live that much longer. This is not a particularly fun ride, for me or anyone close to me. I have such a constrained, mostly feeling not very good existence, that it's fine by me to go when I go. Of course, I can go whenever I like, simply by refusing treatment. Eight weeks to curtains, said my oncologist. I find that rather comforting, actually.
And there's no reason not to have hope within that. I hope for things, I do. Such as continued absence of pain or major side effects. That I can continue to do things each day that I enjoy. That my day is not filled to the brim with unpleasantness, medical stuff and weariness. That I have a high quality of life as long as possible. These are real things to hope for, and things I can affect a little with my actions.
Over to you then. Reality, or pretense?