Statistics Or Sadistics?

A professor of mine from Hunter College (City University of New York, circa 1976) wrote the word "SADISTICS" on the blackboard as I entered my first day of statistics class. I was a little nervous as I took a seat in the back of the room, near the door. I was apprehensive about his approach to teaching this much abhorred subject, so I found comfort by the nearness of the door. As he introduced himself and explained that "sadistic" is what the subject would be if applied improperly or out of context I began to relax. Recently my statistics-induced distress has been rekindled.

I cannot tolerate the discussion that inevitably arises around cancer “survival statistics.” It’s a cruel game to tell a person (like me) with metastatic breast cancer, that 80% of women with my diagnosis live less than 5 years. News like that hits like a bomb dropped directly into the gut. The same words also mean that 20% will live more than 5 years. There are about 180,000 new breast cancer diagnoses each year. 60,000 of these are metastatic, like mine, meaning that they have already spread to an organ or tissue beyond the place where the cancer growth originated. 12,000 of these women will live more than 5 years. Who are these 12,000 women? What makes them different from the 48,000 who don’t make it? Can I be one of the 12,000? Statistics can’t answer my questions.

Statistics are about incidences within groups of people; they say nothing about individuals. It is irrelevant and cruel to tell someone what their personal chance of survival is based on this form of math. Any of us could die in a car crash on the highway tomorrow in the rain and totally mess up a mathematician’s fancy formulas. Informing a cancer patient of their prognosis based on numbers seems more like sadistics than statistics to me.

I also think it’s cruel to not tell someone with a disease that has a poor prognosis that this is what they’re up against. If someone has a type of cancer that kills 95% of its victims in less than 3 months they need to know that that possibility exists, and prepare themselves for whatever happens. I understand the utility in generalized predictions, but I also know a woman who has survived with pancreatic cancer that was diagnosed 27 years ago, a nearly unheard of situation. Statistics only help us make educated guesses. They don’t dictate outcomes.

Randy Pausch, author of The Last Lecture, is arguably a person who has most effectively used his prognosis and life expectancy statistics. Being the incurable academic that he was (sorry for the tasteless pun), he delivered a fabulous “Last Lecture” for his wife and young children. He turned it into a You Tube video and a book, for them to have his final words of love and wisdom delivered in his favorite format, a blend of PowerPoint, comedy, and inspiration. In addition to capturing his last words of wisdom and wishes for his family and friends, his lecture provides support for his family from the millions of copies that have sold since he’s passed.

Statistics can be confusing, and create dissonance with the reality of how you actually feel. I had a patient many years ago who had a very rare type of brain tumor. His doctors kept telling him about how unusual his condition was, and he wondered what that was supposed to mean to him. A rare disease is not rare for the person who gets it! In this case, the statistics only made him feel like a freak of nature.

Another patient of mine discovered he was HIV positive many years ago during a routine insurance physical. He was perfectly healthy, happily married, with a great job, and a wonderful life. In the ensuing 2 years, he was divorced, lost his job, had to move to a small dreary apartment, and became morbidly depressed about the possibility of dying from AIDS, even though he had not gotten sick yet. One weekend, when some friends convinced him to go to the beach to try to cheer him up, an unexpected thunderstorm moved in quickly. Running to find shelter from the storm, he ran past a phone booth (the tallest metal object nearby) and was struck by lightning. He spent 2 weeks in the burn unit before he died of the burns and other complications from the lightning strike. I went to visit him a week before he died and he was laughing, telling jokes to everyone in the unit, trying desperately to make up for the way he felt like he had wasted the last precious 2 years of his life. He asked me to tell his story to anyone I meet who is upset because they think they know how they are going to die.

No matter what any statistics say about probability, they are theoretical. Life has too many variables that are unknown and unknowable. 100% of us are going to die, and we won’t know when, or how, or why, until it happens. It's not unreasonable to make contingency plans based on science and statistics as long as we aren't fixated on a specific outcome. I am vaguely interested in statistics, but I don’t take scientific proclamations and statistics literally as the bottom line. The context of my life is more important than any statistic. The way I influence and relate to the internal and external environment of my life sways the statistics.

I appreciate that it might be useful to track trends and associations. My gripe is with the way we tend to attribute meaning to them. Statistics are not personal or individualized. They do not imply any cause or effect. For example, I have noticed in a casual study of my patients that 100% of women with breast cancer brush their teeth daily, but brushing their teeth did not cause their cancer. Many people mistake associations with causes. The truth is that we just can’t know what is unknowable. I am more comfortable living with the mystery than with false hope or a death sentence.

I am still reeling from the one physician who looked at my sternal tumor, which I told her had decreased in size by about 1/3 prior to any mainstream medical treatment, and looking me right in the eyes said, “This just doesn’t happen.” She didn’t say, “How odd. I wonder how that happened.” She wasn’t curious about how I was living my life and what I might be doing to shrink my tumor. She just denied my individual reality because she couldn’t fit me into her paradigm. She plugged my diagnosis into her mental flow chart and offered me palliative treatment that would “keep me as comfortable as possible in my 2-3 remaining years.” How rude and arrogant of her to sentence me to the death dictated by her algorithm. Needless to say, I did not pursue any treatment with her.

Statistics are based on the past, but I live in the present. When they state the statistic that 80% of women with metastatic breast cancer die in less than 5 years, they are referring to women of the years past. The breast cancer treatment scene is one of the most rapidly changing and dynamic fields, and I am one of the most rapidly changing and dynamic people I know. It’s hard to predict where a moving target is going. Rather than predict my trajectory based on past women’s fates, I’d prefer live into the possibilities of my unique alternative futures.

We have the power to make some choices that might affect our fate. There are aspects of our lives that are knowable and controllable, and other aspects that aren’t. We can’t change the fact that we have eaten food that was wrapped in plastic. We have no choice but to breathe the air we are given. I can’t control the effects of the DDT truck that sprayed for mosquitoes in my Miami childhood neighborhood. Rest assured that I am making all the choices I can to be one of the 12,000, but ultimately I don’t get to choose what happens, and the statistics don’t choose either.

I made a fabulous pot of lentil, tomato, vegetable, shitake mushroom soup today. I strongly believe that I have a 100% statistical chance of enjoying a bowl for lunch today.

One of the best pieces ever written on this subject of cancer statistics was sent to me by my friend Jordan. It was written by Stephen Jay Gould, the evolutionary biologist and science writer, who lived 20 years with a cancer that statistically had an 8 month median survival rate.
http://cancerguide.org/median_not_msg.html

Jordan is the person who conducted the interview with me that is available on my website. For more interesting stuff he has compiled go to his great site:
http://enlightenment.com/

For those of you still trying to make some sort of peace or educated choice about mammograms, here is a link to an article from the New York Times that explains the math:
http://www.nytimes.com/2009/12/13/magazine/13Fob-wwln-t.html?_r=1&emc=tnt&tntemail1=y