I thought I’d focus today on the discussion we had about statistics. A woman (the blog reader who told me she wished she’d known about curcumin earlier) said that when she was diagnosed with smoldering myeloma, her doctor told her that she had only three years to live. Even though I was almost rendered speechless, I managed to translate what she’d said.
Without batting an eyelid (I’m sure he hears this kind of stuff all the time), Prof. Gertz answered that statistics are useful mainly to doctors when they get together at congresses et similia. But, he added, statistics are simply of NO USE to patients. (Have you read Harvard Professor Stephen Jay Gould’s excellent essay on statistics? If not, click here: http://goo.gl/jzMkK).
He kept shooting examples at us, one after the other. The ones I remember, more or less, are these: 1. Statistics tell us that the average man is taller than the average woman. How tall is your sister? 2. Statistics tell us that the average European male makes € 40000 a year. (Turning to Vittorio) How much does Vittorio make?
Precisely. Statistics are a waste of time, as far as we’re concerned. And that’s one of the most important things I heard during this patient doctor meeting. Even before I read the above-mentioned essay and even though my brain has always refused to understand anything related to numbers and math, I have always felt (hoped?) there was something terribly wrong with myeloma statistics.
Example: in 2007 I read a Science Daily article on an Ohio University study that linked the stress hormone norepinephrine to the development of myeloma: http://goo.gl/BUHti While the entire article is very interesting, this particular paragraph is relevant to our discussion: In this latest study, the researchers looked at a different type of cancer – multiple myeloma. One of several types of cancers of the blood, multiple myeloma strikes nearly 20,000 Americans each year, killing at least half that many annually. Patients diagnosed with this disease normally survive only three to four years with conventional treatments.
Three to four years…
I shared this dismal statistic with Stefano who replied by quoting a sonnet by the Roman poet Trilussa (see my November 24 2007 post for the original text written in the Roman dialect). Here is my rough translation of the sonnet: You know what statistics is? It’s something you use to make a general count of the people who were born, who get ill, who die, who go to jail, who get married. But for me the peculiar statistic is the one dealing with percentages, because then the mean always remain the same for everyone, even for someone who has nothing. Let me explain, from the way they count in statistics nowadays, it appears that you eat one chicken per year: and, even if you can’t afford to buy a chicken, you are part of the statistic anyway, because there is someone else who eats two chickens. Spot on.
Whenever we happen upon any myeloma statistics, we should always remember Trilussa and his chickens. Or Stephen Jay Gould, and the fact that he survived 20 years after his diagnosis, exceeding his 8 month median survival by a factor of thirty.
We are individuals, not numbers. What do you think?
P.S. the photo is of my daffodils…
well even having been lucky enough to actually be there,
your review really nails the information. i also remark on the doubt he had about some of the lab reports… as though he sees that sort of thing a lot, and really counts on a whole person intake before making a decision. i have some other thoughts, but i will wait to see what you post. thanks margaret !
I like Mark Twain’s line that there are “lies, damned lies….and statistics”. I truly believe that someday I, and all of us, will be functionally cured of this *&^(%$) condition. Ohterwise, I would just throw in the towel devoid of hope. Both of my MM doctors told me they believe a functional cure is close at hand. I also believe they were not just blowing smoke but actually believe it. That gives me real hope that I will see my two sons make it to high school and more. Terry from NJ
Oncologists are a unique lot among physicians in that malpractice liability is not a real concern, especially for an incurable disease like multiple myeloma. So they can get away with deadly prognoses that are ignorant and reckless.
My oncologist is smart and detail-oriented, but I swear that he likes to smirk when he speaks to me — as if he is relishing his position of power. Properly dealing with multiple myeloma — and I have not been yet — should be about empowering the patient — NOT just the physician.
As a former statistical researcher, I find that most people don’t understand statistics. They are about probability, not certainty. They are based on the Gaussian curve (bell curve), and you could be way out in the wings of that curve. However, the probability is that you’re closer to the mean. I’m some distance from the mean. My cancer was most likely to kill me 8 or 9 years ago. I’m some distance from the mean.