-- Buddhist saying (and probably even older than that)
Stage Fright
All categories are artificial. That includes cancer stages. I came into this thinking the stages of cancer were objective truths and that there could be little argument against such hard science and little hope up against statistics and percentages. “We still carry the historical baggage of a Platonic heritage that seeks sharp essences and definite boundaries” is how Stephen Jay Gould put it, and scroll down for more from him below. But medical science is not as precise as we are taught to believe. Its truths change all the time, orthodoxy is always synthetical.
Doctors and patients need to talk about the situation, and so the outline of four stages is a tool for doing that. But when I was concerned about my own staging, I was comforted by a doctor who wasn't even treating me but who said when I told him my stage, “It’s only words.” Also, your treatment protocol is based on your stage. (For more about this, see "FIGO" in the glossary.) So, the stage is an important organizing principle. Unfortunately, each stage comes with percentages that are supposed to indicate your odds, and you will be very aware of whatever your percentages are just as soon as you know your stage. It can ruin your whole day. I know because I was staged 4.
However, absolutely no one knows if you will die from this. People have survived every stage of cancer. People have died from every stage of it. In the case of my own diagnosis for endometrial cancer, which is cancer of the lining of the uterus, the fourth stage includes other cancers that are rather different from mine and some of those are so dangerous that just having one of them nets you an automatic 4 whether or not it has spread. So, any prognosis percentages for that category are based on calculations that include cancers I didn’t even have. Or, as my husband put it, after the first three stages, stage 4 is “just everything else.”
Stage 4 usually means that the cancer has metastasized to distant locations — when it doesn’t mean different cancers altogether! Yet, it turns out that “distant” can be a vague term. A spot of my endometrial cancer was stuck onto my omentum, which is an organ that lines the abdomen. In endometrial cancer, the omentum is considered distant, and this is what got me my 4. In ovarian cancer, spread to the omentum will only get you a stage 3. When I asked my doctor why, he said that the ovaries are closer to the omentum than the uterus is. My opinion was and is: not all so much. And I exchanged emails with someone who had ovarian cancer in her upper abdomen and her appendix -- way off-piste if you ask me -- and she still only got a stage 3! Whenever I get like this, the spouse tells me that arguing for a different staging is like expecting the French figure skating judge to change their score. This does make me laugh, but it hasn't got me to drop it. Obviously.
Being stage 4 is damned scary. But another patient with the same diagnosis as me, same cancer, also stage 4, told me her oncologist said to her, “Stage 4 is definitely not a death sentence.” (I was disappointed when I tried to get mine to say this and he wouldn't. On the other hand, he saved my life and proved the statement true with actions rather than words.) So, it’s serious, and it means you may have farther to go than someone who got a coveted lower stage status. Or, as this survivor put it:
“What I think I learned is, you’re either 100 percent alive or 100 percent dead at any given moment,” says Meg Gaines, whom doctors gave a 5 percent chance of surviving [ovarian cancer]. “What statistics tell you is whether you’re in a great big fight, a medium-sized fight, or a little fight. People win and lose all three, so it just tells you what your fighting mind-set is.
“It tells you what level of risk you’ll take in treatment. It informs things. But I don’t think it’s very helpful on the ultimate question: Will I stay or will I go?”
Excerpted in Utne magazine, March-April 2010, pp. 71-73, from On Wisconsin (Winter 2009),
www.uwalumni.com/onwisconsin.
People do win and lose all three. One night I got to googling a television personality who had graduated from my college one year ahead of me. I wondered what had become of her. She’s still going strong, and not just in her career. It turns out she has had cancer three times, once with melanoma and twice with ovarian. The first ovarian diagnosis was an unusually lucky stage 1A, caught and treated. But it recurred all the same a year and a half later. So she got through the second diagnosis and treatment and is now decades out, doing fine. So much for stages, she lost the smaller fight and won the big one.
And then there is this to consider about how arbitrary stages can be. When I was first diagnosed, and spending a lot of time frantically looking around the internet for information, I discovered a blogger who had the same diagnosis as me. In her comments section, someone reported that different countries organize their stages differently – and they get reorganized from time to time. “In Canada, you’d probably be a 3,” she wrote. Man, I loved that. When I told my case manager that story, she who knows just how to handle me said, “You can go right ahead and call yourself a 3 if you like.” At the very least, I call myself a 4-with-an-asterisk.
Want to hear an inspirational story from a patient who survived very advanced stage 4, grade 4 cancer? Who doesn’t. Go here and listen to his TED talk, or scroll down and find any of his other videos where he tells the story of what happened to him. It's worth it:
http://www.epatientdave.com/videos/
Finally, if you are not familiar with this definitive essay on the subject, by Stephen Jay Gould, then now is the time to read it and so I am posting it below. One word before you do. He mentions the importance of attitude, specifically a “sanguine personality”. But even his categories are not one size fits all. Because while I agree about attitude in general, I am living proof that “even-tempered” is not required. As long as you have “confident”. ###
Photo by P. Bramwell Yokwetahoe, via Wikimedia Commons.
The Median Isn't the Message
by Stephen Jay Gould
My life has recently intersected, in a most personal way, two of Mark Twain's famous quips. One I shall defer to the end of this essay. The other (sometimes attributed to Disraeli), identifies three species of mendacity, each worse than the one before - lies, damned lies, and statistics.
Consider the standard example of stretching the truth with numbers - a case quite relevant to my story. Statistics recognizes different measures of an "average," or central tendency. The mean is our usual concept of an overall average - add up the items and divide them by the number of sharers (100 candy bars collected for five kids next Halloween will yield 20 for each in a just world). The median, a different measure of central tendency, is the half-way point. If I line up five kids by height, the median child is shorter than two and taller than the other two (who might have trouble getting their mean share of the candy). A politician in power might say with pride, "The mean income of our citizens is $15,000 per year." The leader of the opposition might retort, "But half our citizens make less than $10,000 per year." Both are right, but neither cites a statistic with impassive objectivity. The first invokes a mean, the second a median. (Means are higher than medians in such cases because one millionaire may outweigh hundreds of poor people in setting a mean; but he can balance only one mendicant in calculating a median).
The larger issue that creates a common distrust or contempt for statistics is more troubling. Many people make an unfortunate and invalid separation between heart and mind, or feeling and intellect. In some contemporary traditions, abetted by attitudes stereotypically centered on Southern California, feelings are exalted as more "real" and the only proper basis for action - if it feels good, do it - while intellect gets short shrift as a hang-up of outmoded elitism. Statistics, in this absurd dichotomy, often become the symbol of the enemy. As Hilaire Belloc wrote, "Statistics are the triumph of the quantitative method, and the quantitative method is the victory of sterility and death."
This is a personal story of statistics, properly interpreted, as profoundly nurturant and life-giving. It declares holy war on the downgrading of intellect by telling a small story about the utility of dry, academic knowledge about science. Heart and head are focal points of one body, one personality.
In July 1982, I learned that I was suffering from abdominal mesothelioma, a rare and serious cancer usually associated with exposure to asbestos. When I revived after surgery, I asked my first question of my doctor and chemotherapist: "What is the best technical literature about mesothelioma?" She replied, with a touch of diplomacy (the only departure she has ever made from direct frankness), that the medical literature contained nothing really worth reading.
Of course, trying to keep an intellectual away from literature works about as well as recommending chastity to Homo sapiens, the sexiest primate of all. As soon as I could walk, I made a beeline for Harvard's Countway medical library and punched mesothelioma into the computer's bibliographic search program. An hour later, surrounded by the latest literature on abdominal mesothelioma, I realized with a gulp why my doctor had offered that humane advice. The literature couldn't have been more brutally clear: mesothelioma is incurable, with a median mortality of only eight months after discovery. I sat stunned for about fifteen minutes, then smiled and said to myself: so that's why they didn't give me anything to read. Then my mind started to work again, thank goodness.
If a little learning could ever be a dangerous thing, I had encountered a classic example. Attitude clearly matters in fighting cancer. We don't know why (from my old-style materialistic perspective, I suspect that mental states feed back upon the immune system). But match people with the same cancer for age, class, health, socioeconomic status, and, in general, those with positive attitudes, with a strong will and purpose for living, with commitment to struggle, with an active response to aiding their own treatment and not just a passive acceptance of anything doctors say, tend to live longer. A few months later I asked Sir Peter Medawar, my personal scientific guru and a Nobelist in immunology, what the best prescription for success against cancer might be. "A sanguine personality," he replied. Fortunately (since one can't reconstruct oneself at short notice and for a definite purpose), I am, if anything, even-tempered and confident in just this manner.
Hence the dilemma for humane doctors: since attitude matters so critically, should such a sombre conclusion be advertised, especially since few people have sufficient understanding of statistics to evaluate what the statements really mean? From years of experience with the small-scale evolution of Bahamian land snails treated quantitatively, I have developed this technical knowledge - and I am convinced that it played a major role in saving my life. Knowledge is indeed power, in Bacon's proverb.
The problem may be briefly stated: What does "median mortality of eight months" signify in our vernacular? I suspect that most people, without training in statistics, would read such a statement as "I will probably be dead in eight months" - the very conclusion that must be avoided, since it isn't so, and since attitude matters so much.
I was not, of course, overjoyed, but I didn't read the statement in this vernacular way either. My technical training enjoined a different perspective on "eight months median mortality." The point is a subtle one, but profound - for it embodies the distinctive way of thinking in my own field of evolutionary biology and natural history.
We still carry the historical baggage of a Platonic heritage that seeks sharp essences and definite boundaries. (Thus we hope to find an unambiguous "beginning of life" or "definition of death," although nature often comes to us as irreducible continua.) This Platonic heritage, with its emphasis in clear distinctions and separated immutable entities, leads us to view statistical measures of central tendency wrongly, indeed opposite to the appropriate interpretation in our actual world of variation, shadings, and continua. In short, we view means and medians as the hard "realities," and the variation that permits their calculation as a set of transient and imperfect measurements of this hidden essence. If the median is the reality and variation around the median just a device for its calculation, the "I will probably be dead in eight months" may pass as a reasonable interpretation.
But all evolutionary biologists know that variation itself is nature's only irreducible essence. Variation is the hard reality, not a set of imperfect measures for a central tendency. Means and medians are the abstractions. Therefore, I looked at the mesothelioma statistics quite differently - and not only because I am an optimist who tends to see the doughnut instead of the hole, but primarily because I know that variation itself is the reality. I had to place myself amidst the variation.
When I learned about the eight-month median, my first intellectual reaction was: fine, half the people will live longer; now what are my chances of being in that half. I read for a furious and nervous hour and concluded, with relief: damned good. I possessed every one of the characteristics conferring a probability of longer life: I was young; my disease had been recognized in a relatively early stage; I would receive the nation's best medical treatment; I had the world to live for; I knew how to read the data properly and not despair.
Another technical point then added even more solace. I immediately recognized that the distribution of variation about the eight-month median would almost surely be what statisticians call "right skewed." (In a symmetrical distribution, the profile of variation to the left of the central tendency is a mirror image of variation to the right. In skewed distributions, variation to one side of the central tendency is more stretched out - left skewed if extended to the left, right skewed if stretched out to the right.) The distribution of variation had to be right skewed, I reasoned. After all, the left of the distribution contains an irrevocable lower boundary of zero (since mesothelioma can only be identified at death or before). Thus, there isn't much room for the distribution's lower (or left) half - it must be scrunched up between zero and eight months. But the upper (or right) half can extend out for years and years, even if nobody ultimately survives. The distribution must be right skewed, and I needed to know how long the extended tail ran - for I had already concluded that my favorable profile made me a good candidate for that part of the curve.
The distribution was indeed, strongly right skewed, with a long tail (however small) that extended for several years above the eight month median. I saw no reason why I shouldn't be in that small tail, and I breathed a very long sigh of relief. My technical knowledge had helped. I had read the graph correctly. I had asked the right question and found the answers. I had obtained, in all probability, the most precious of all possible gifts in the circumstances - substantial time. I didn't have to stop and immediately follow Isaiah's injunction to Hezekiah - set thine house in order for thou shalt die, and not live. I would have time to think, to plan, and to fight.
One final point about statistical distributions. They apply only to a prescribed set of circumstances - in this case to survival with mesothelioma under conventional modes of treatment. If circumstances change, the distribution may alter. I was placed on an experimental protocol of treatment and, if fortune holds, will be in the first cohort of a new distribution with high median and a right tail extending to death by natural causes at advanced old age.
It has become, in my view, a bit too trendy to regard the acceptance of death as something tantamount to intrinsic dignity. Of course I agree with the preacher of Ecclesiastes that there is a time to love and a time to die - and when my skein runs out I hope to face the end calmly and in my own way. For most situations, however, I prefer the more martial view that death is the ultimate enemy - and I find nothing reproachable in those who rage mightily against the dying of the light.
The swords of battle are numerous, and none more effective than humor. My death was announced at a meeting of my colleagues in Scotland, and I almost experienced the delicious pleasure of reading my obituary penned by one of my best friends (the so-and-so got suspicious and checked; he too is a statistician, and didn't expect to find me so far out on the right tail). Still, the incident provided my first good laugh after the diagnosis. Just think, I almost got to repeat Mark Twain's most famous line of all: the reports of my death are greatly exaggerated.
Postscript By Steve Dunn
Many people have written me to ask what became of Stephen Jay Gould. Sadly, Dr. Gould died in May of 2002 at the age of 60. Dr. Gould lived for 20 very productive years after his diagnosis, thus exceeding his 8 month median survival by a factor of thirty! Although he did die of cancer, it apparently wasn't mesothelioma, but a second and unrelated cancer.
In March 2002, Dr. Gould published his 1342 page "Magnum Opus", The Structure of Evolutionary Theory. It is fitting that Gould, one of the world's most prolific scientists and writers, was able to complete the definitive statement of his scientific work and philosophy just in time. That text is far too long and dense for almost any layman - but the works of Stephen Jay Gould will live on. Especially I hope, The Median Isn't The Message .
http://www.cancerguide.org/median_not_msg.html