ONCOLOGIST SPEAKS : Meet the cancer patient who lived a life with and beyond the disease

At the age of 42, Stephen Jay Gould, an American biologist and historian of science was diagnosed with a deadly form of cancer—mesothelioma—which affects the abdomen.

But he managed to prolong his life beyond what scientific data had stipulated. His belief was that data was just information—not a death sentence.

He was suffering from a rare and incurable cancer by all accounts, especially at that time. His story dates as far back as the year 1982.

Back then, such cancer was commonly found among people who had been exposed to asbestos or rock dust—a naturally occurring construction material that was widely used at that time.

However, the incidence of this cancer has declined over the years.

But Gould’s story; which I came to learn during my years of practice as an oncologist actually teaches many lessons about cancer data—and whether we should live by what the data says or not.

Gould underwent surgery at one point. But immediately after the surgery, just as many educated patients do, he asked his oncologist to tell him where he could find the best technical articles on the cancer he was suffering from.

His doctor had actually intentionally responded to the sick man, saying, “the current medical literature contains nothing much worthy reading on the subject of mesothelioma.”

All this meant to discourage Mr Gould from finding the truth that perhaps would have saddened him.

What did Gould really do?

The patient was indeed discouraged but after exiting the corridors of the hospital, he headed straight to the university library and collected all the recent journals to read about mesothelioma, the cancer he was suffering from.

To his shock, all the science pointed to one direction—a bad one indeed—that there was no cure.

Data showed that people diagnosed with the mesothelioma, survive only eight months on average. In statistical terms, the eight months was a median survival.

He was both physically and mentally disturbed but having lived as a researcher, he knew how to interpret science and its numbers and so he had the ability to study and quantify natural phenomena.

His knowledge in science had made him believe that there was no such a thing as a fixed rule in nature.

He scrutinised the data he had read, very carefully. To him, the median was now just an abstract figure—some sort of a law that human mind tries to impose on individual cases.

The “median of eight months” actually meant that half of the individuals died in less than eight months and the rest lived longer than that.

What cancer patients can learn from Gould

After 20 years, Gould passed away, but due to a different disease.

This means, Stephen Jay Gould, lived beyond mesothelioma, cementing the notion that statistics shouldn’t be a death sentence but rather just information.

And that if data is used well, one can take that as an opportunity to live better - a full life rather than in crisis.