[T]he truth is never simple, and the way it is delivered and interpreted can
make a real difference.
[N]o one would talk to me about dying, about death, about what it was
like and how I could prepare.
If a patient leaves the physician's office in a state of emotional
devastation, then the environment for effective treatment has been impaired.
We've all known people who have far outlived expectations, and a few who
survived despite terrible odds.
[P]ublished research literature
will always be a few years behind
the best current available treatments.
How Long Do I Have?
The following article is excerpted from Chapter 5 of Advanced
Breast Cancer: A Guide to Living with Metastatic Disease, 2nd Edition, by Musa Mayer, copyright 1998, published by O'Reilly & Associates, Inc. For
book orders/information, call (800) 998-9938. Permission is granted
to print and distribute this excerpt for noncommercial use as long as
the above source is included. The information in this article is
meant to educate and should not be used as an alternative for
professional medical care.
Most likely, the first question in your mind after recovering from the shock of hearing your breast cancer has metastasized is: Will I die from this disease, and if so, when? It is part of human nature to believe that knowing an outcome with certainty, no matter how glum, is better than living with uncertainty. And if time is short, you may want to know so that you can rearrange your priorities and tackle the unfinished business of your life while you are still feeling well enough to do so. Knowing how serious a cancer diagnosis is can also play a vital role in determining treatment decisions.
It becomes crucial, therefore, to consider the problems associated with disclosure of information, prognosis and statistics. What you are told, what you discover for yourself and the way you make sense of this information about your illness will determine a great deal of your day-to-day quality of life, for it affects everything concerning the disease: your attitude toward treatment and the treatment choices you make; your feelings of hope; the plans and priorities you decide upon; the way you connect with your friends and family; and the way the future appears to you.
You would not be reading this if you were not an information seeker, so it may seem to you that simple truth is best. You want all the information the doctors have, and to be helped to understand it as best you can. But the truth is never simple, and the way it is delivered and interpreted can make a real difference.
In fact, the way in which a treatment is presented to you may well affect the choice you make, and you may not even be aware of this influence. An ingenious experiment in medical decision-making presented the same surgery outcome statistics to patients, but in two different ways. The lung cancer patients in this study were given a statistic to help them make a decision between surgery and radiation treatment. For every 100 men undergoing lung surgery, one group was told, statistics showed that ninety would live through the post-operative period, and thirty-four would be alive at the end of five years. The other group was told that, given the same 100 men having surgery, ten would die during the post-operative period, and sixty-six would be dead by the end of five years. Though the information was the same, surgery appeared far less attractive as an option to those who received the mortality statistics versus the survival statistics.1 This is called the "framing effect," and was surprisingly just as pronounced with physicians as with patients. The only antidote to such subtle persuasions is awareness of the bias and having a variety of information sources.
There are other common errors of reasoning that most of us make. Risk, for example, is often misperceived categorically, with little distinction made between high- and low-risk situations. Risk is risk to us--a unified concept, with no shades of gray. Hence the fear of airplane travel, statistically far more safe than automobile travel, that follows an airliner crash. Because of this tendency, people often devalue a treatment that will lessen the odds (decreasing risk)--often the only achievable goal in cancer treatment--seeing this as relatively unimportant by comparison with their quest for what the authors of this study call the "enchanting appeal of zero risk."
In her counseling of metastatic breast cancer patients considering high-dose chemotherapy, Memorial Sloan-Kettering social worker Rosalind Kleban finds that these women are often strongly attracted to the notion that this rigorous treatment carries both the possibility of cure, however remote, and the appeal of liberation from continuous treatment, even if for a limited time. "They do see it as `this will be it and I will not have to be in treatment any more.' In order to go through this, women have convinced themselves that this will do it." Although it may be equally effective, conventional treatment offers the much less appealing alternative of continuous treatment. "Approaching it as chronic is much more difficult, unless they are willing to be a bit more open," says Kleban.
Pam Hiebert describes how difficult it was for her to process information after her diagnosis in February of 1993.
I was frantic those first several months trying to make sense of what I was being told: "You need to get your affairs in order," and "Stage IV Breast Cancer has a life expectancy of around two years." I found myself very angry deep down and profoundly frustrated at all the outside advice that was coming to me (try this, try that), while no one would talk to me about dying, about death, about what it was like and how I could prepare.
Bare information about prognosis and statistics delivered in the context of hurried medical consultations is often brutal in its emotional impact.
Coming in to the medical system with such a bad prognosis meant having it hammered home repeatedly that I was likely to go fast. No one in the medical field seemed anxious to give much encouragement. My oncologist raised the greatest hope when he demonstrated his willingness to go at this aggressively and challenged me to stay the course. He also admitted to me privately that he could not produce a cure but that he would stay with me in whatever lay before me.
Long time patient advocate and writer Norman Cousins, noted for his iconoclastic views on the practice of medicine, argued that doctors have a responsibility to do far more than convey information.
All of us have been intimidated by illness. We've had our attention fixed on problems and not on possibilities, and we tend to become paralyzed by the fear. If a patient leaves the physician's office in a state of emotional devastation, then the environment for effective treatment has been impaired. The physician who volunteers a terminal date, for example, or allows himself to be pressured into allowing a terminal date may actually be putting a hex on the patient. You can perceive a dilemma: a patient must not be fooled, but on the other hand, a patient in a state of utter despair and depression may have very little inclination for going on with treatment.
In his view, communication is crucial. "The patient has the right to know, and the physician has the obligation to inform," Cousins said. But a good doctor learns to be expert in "rounding out the corners of truth. A serious diagnosis can be communicated as a challenge rather than as a verdict."2
Compassionate physicians are acutely aware of the impact of this kind of information, and strive to be sensitive to it--and certainly it was this impulse, at least in part, that led to the belief that concealing diagnosis and prognosis was appropriate during the era of the paternalistic physician and passive patient. Many doctors are reluctant to quote mortality rates or statistics on survival time to patients, preferring to tell them, rightly, that no one can know for sure how long a particular patient will live, and that mortality statistics are based on large groups, and are to be used to weigh decisions about treatment, not as predictors of individual life expectancy. They will explain that since you are an individual, there is simply no way to predict, with any certainty, whether you will be in the larger group that will succumb to breast cancer within the predicted period of time, or the smaller group that lives for many years with it as a chronic disease, or even survives to die of other causes. While initially frustrated, many patients are ultimately able to transform this uncertainty into an opportunity for hope.
No one I interviewed demonstrated this more clearly than Caren Buffum, in her response to a member of the Breast Cancer Discussion List who inquired about mortality rates for metastatic disease.
Sorry, but I don't trust statistics. Even my doctor looks me in the eye and says, "You are not a statistic." He has explained to me that the medical community uses statistics for decision making (you know, like one uses odds at the race track), but I'm curious why you want to know the "true" numbers. It will not tell you what is true about you. I don't offer this as a criticism, but rather as an encouragement. By surviving 10 years after my mastectomy, I am proving the statistics "correct" (the ones that say something like 86 percent of Stage I node-negative patients will survive 10 years or more). What that statistic doesn't tell you is that not all of those survivors will be disease-free and will survive to year 11. Now take another statistic--I won't give you the exact number because it may have a negative effect on someone reading this--but since my recurrence, I have survived more than twice as long as the average survivor. If I had believed that statistic, I would have been a basket case several years ago. If you are trying to get a fix on your "odds," I suggest you assume you are the best case scenario, the far end of the bell curve, the one that always does better than the odds. If evidence should then prove otherwise, you can deal with that when it comes. I believe in getting all the information I can where it will help me make educated decisions and create understanding about my medical situation. But I shy away from statistics that just give me numbers to fix my thoughts on--numbers that give me "averages." I'm not average.
But there are many who don't want to be shielded by their doctors and who may see even the above discussion as a continuation of an unwanted medical paternalism. These people are likely to come across the statistics in their own research of medical sources, just as I did when I was newly diagnosed with primary breast cancer, without anyone there to help them interpret what they read.
Sue Tokuyama is one of the many I interviewed willing to pay the price that this sort of knowledge exacts:
I've heard of women who find out they have cancer, find a doctor and then do everything that doctor says, without discussion. They need some kind of authority figure in which to trust their lives. Once that is done, there is no need, in their view, for further deliberation.
Information from whatever source, whether from physicians, medical references or other patients, can be disturbing as well as enlightening, for a number of reasons. Even when correctly interpreted, charts and tables may have a negative emotional impact at first. They can make a human struggle with illness seem coldly clinical. Reading morbidity and mortality figures on the printed page can be a chilling experience, especially in the beginning. However necessary this information may be, it's reasonable to expect and prepare for this emotional response. Glenn Clabo wrote wistfully about what he learned concerning his wife Barb's Stage IV disease and its bleak prognosis:
Then, there's the feisty kind, (I offer myself as an example), for whom no amount of information is too much, no authority figure is too exalted to call "Chuck."
I sometimes envy the less inquisitive when it comes to some things. Maybe not knowing is easier when you come to this point of the process. I sure don't recommend that anyone actually read a pathology report. Just let the doctor explain it. The printed words make it all too real.
Misinterpretation of statistics is particularly problematic for the do-it-yourself researcher poring over medical texts and journal articles. Some cautionary thoughts about the nature of statistics are in order. "We cannot do what the public thinks we can do with statistics," says Dr. Joanne Lynn, an expert statistician at Dartmouth Medical School. "People think they are going to get something that maps out their life plan, rather than something that is more like the odds. They think that doctors have a real clue, and they don't."3
We've all known people who have far outlived expectations, and a few who survived despite terrible odds. Greg Anderson, founder of the Cancer Conquerors Foundation, is convinced that statistics have no place in a prognosis. "Statistics are almost always interpreted negatively," said Anderson who, at 45, received a diagnosis of lung cancer in 1984 and was told he had about thirty days to live. But Anderson found literature on lung cancer that put his chances of beating the disease at five percent. "At first I was hugely depressed. Then, as I thought about it, it made me decide to do everything I could to be in that five percent. But most people don't make it that far. Most get bogged down in despair."4
One of the most intelligent perspectives on interpreting cancer statistics comes from an essay written by the Harvard evolutionary biologist Stephen Jay Gould entitled "The Median is Not the Message."6 When Gould was diagnosed in 1982 with a rare and deadly abdominal cancer known as mesothelioma, his doctor told him that there was "nothing really worth reading" in the medical literature. Undeterred, he did a library computer search on his disease. "I realized with a gulp why my doctor had offered that humane advice," Gould wrote. "The literature couldn't have been more brutally clear: mesothelioma is incurable, with a median mortality of only eight months after discovery."
Most people, unschooled in statistics, would think that this meant that they had only eight months to live. As a scientist, Gould knew better. The median, the measure of central tendency used in this example, describes that point in a distribution that separates the cases in half. Half the people lived fewer than eight months, and half lived for a longer time. Like the mean (average) or mode (most common score), the median is only an abstraction. Yet we tend to see it as the one essential truth to be extracted from that statistic. "We still carry the historical baggage of a Platonic heritage that seeks sharp essences and definite boundaries," he explains, adding that we tend to see the mean and median as "the hard realities, and the variation that permits their calculation as a set of transient and imperfect measurements of this hidden essence." In fact, the opposite is true. "All evolutionary biologists know that variation itself is nature's only irreducible essence. Variation is the hard reality."
Now that he knew that half the people with his disease would live longer than eight months, Gould set about determining the shape of the distributional curve, and in fact found it was what statisticians call "right skewed," meaning that some patients lived on for many years. Why not he? Just as important, the statistics had been based on conventional treatment. With a new experimental protocol and the best medical care, he might well outlive even the best predictions. "I had obtained," Gould concluded, "in all probability, the most precious of all possible gifts in the circumstances--substantial time." Fourteen years later, Gould considers himself a survivor.
If you research the studies on treatment of metastatic disease, you are likely to encounter the same problems. Because statistics in cancer treatment look at factors like partial and complete remissions over a number of years, the published research literature for metastatic breast cancer will always, by its nature, be a few years behind the best current available treatments. Thus, your odds are likely to be an improvement over what you read in the studies. It is important to keep this in mind.
- Tversky, A., and Kahneman, D., "The framing of decisions and the psychology of choice," Science, 211:453-458, 1981.
- Cousins, Norman, "Tapping Human Potential: an Interview," Second Opinion, 14: p. 56, July 1990.
- Roan, Shari, "What to do when the news is bad," Los Angeles Times,
October 7, 1993.
- Roan, Shari, Op. Cit., p. 1.
- Gould, Stephen Jay, "The Median Isn't the Message." For the entire article, see Steve Dunn's Cancer Guide at: http://cancerguide.org/median_not_msg.html.