Monday, March 21, 2011

After a Cancer Diagnosis, Wishing for a Magic Number - NYTimes.com

When my wife, Ruth, learned she had breast cancer, friends told us not to worry. After all, they said, a lot of progress has been made.

As a cancer researcher and a doctor at Memorial Sloan-Kettering Cancer Center, where she was being treated, I knew this was true. Progress has indeed been made. Throughout my career, death rates from breast cancer in the United States have steadily declined by 1 percent to 2 percent a year.

Some experts credit mammography screening for up to half the decline; others credit it less, or not at all. But there is no dispute that much of the progress has come through better treatments for early-stage breast cancer. Chemotherapy has improved, radiation has grown more effective and additional drugs lower the risk that the cancer will come back.

All of this progress meant that the chance that Ruth's breast cancer would come back was a lot lower than it might have been years ago. But what was that chance, anyway? It was the obvious question, and we put it to her oncologist at our first appointment with him. He paused and then offered a peculiar answer. He said we should realize that it didn't matter. It would either happen or it wouldn't.

I was stunned. Her oncologist, the one I had asked to see her when we found out Ruth had breast cancer, is the most quantitatively oriented and science-based doctor I know. He is one of the world's authorities on breast cancer, has conducted many of the crucial studies of treatment and written some of the most important papers about it.

The notion that the probability didn't matter was antithetical to everything I knew about him. Of course it's about the probabilities — those are the things he is trying to affect every day when he gives women chemotherapy and other treatments.

More maddening still: he obviously knew the data inside and out, so it wasn't a hard question; it was an easy one. I just expected him, in his direct way, to look at us, head slightly tilted, and say: "2 percent, which is one in 50," or "25 percent, which is one in four," whatever. We'd swallow hard, and then we'd go on.

His approach also didn't make any sense because he couldn't really keep the information from us. Never mind going on the Internet; my expertise includes the area of prognosis and cancer patient outcomes. I could find all the relevant data and figure out the answer myself. Down to the last digit.

But instead of just spitting out a number he went all philosophical on us.

In his 1985 essay "The Median Isn't the Message," the paleontologist and MacArthur Foundation "genius" award winner Stephen Jay Gould described the solace he felt after he learned he had a deadly cancer when he saw in the statistics that a few rare people actually lived a very long time, even though most people with his diagnosis succumbed rapidly.

He decided at that moment to be one of the rare ones; put scientifically, he planned to be in the tail of the distribution. It is a beautiful essay by one of the greatest scientific writers of our era. And it was prescient. He lived another 17 years after publishing it.

But every time I read it, I see past my admiration of the man to the conclusion that Dr. Gould chose to actively delude himself. Only in Lake Wobegon can everyone be reliably above average, and there's merit to being realistic.

Dr. Atul Gawande, another MacArthur award winner, and perhaps an even more gifted writer than Dr. Gould, both paid tribute to and took issue with his argument in a recent essay in The New Yorker called "Letting Go," noting that although hope has many roles, "hope is not a plan."

So, Doc, why not just tell us our odds?

Ruth's oncologist elaborated on his refusal, promising he would tell us the number just as soon as we told him what probability of recurrence would cause us to make different choices for our lives.

Neither of us had an answer.

What he was proposing was that we adopt neither Dr. Gould's rosy view that our chances are somehow just better than the statistics, nor take Dr. Gawande's implicit advice that we confront the number and plan accordingly. Because the truth is that no number, no matter how low, would have let us go skipping out of the office confident that this monster was slain for good. And no number, no matter how high, would keep us from living our lives.

I never asked again.

http://well.blogs.nytimes.com/2011/03/21/after-a-diagnosis-wishing-for-a-magic-number/?gwh=9135DC5C72F54F23EE602D3F97DAD298