• Friday, April 19, 2024
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Life by the numbers


Esther Dyson

Two weeks ago, I learned that I don’t have cancer. My doctor called and said, “I have some good news!” Fortunately, we were in the middle of a fire drill in my office at the time, so no one noticed as I blinked back tears of relief.

I had found the lump almost two weeks earlier, while at a conference in South Africa. I returned home early to have a biopsy, but the pathology lab was achingly slow; days passed with no word. Clearly they were working hard to figure out exactly how bad my condition was. In fact, they were

working hard not to miss anything before they concluded that my tumor was rare but benign.

I had been preparing for the diagnosis for more than a week…and to some extent for years, as I turned my investing focus from “all things Internet” to all things health-related. It turns out that understanding and promoting health is a great application of information technology. Health increasingly involves numbers. Many of those numbers aren’t just medical probabilities; they concern daily life choices that you can make before you get sick (or are threatened, as I was).

As a director of 23andMe, a consumer genetics start-up, and a participant in the Personal Genome Project research study (http://www.personalgenomes.org/public/3.html#Data_Sets), I have been studying how genes affect one’s chances of getting various diseases, and how much impact behavior can have on those chances. For most people and for most conditions, the genetic chances of becoming ill are well below 20%. Moreover, regardless of your genotype, you can raise or lower those chances through diet, exercise, avoidance of stress, and engagement with friends.

Yet there is some emerging thinking – and statistics – about how the toxins we encounter in the modern world affect our immune system, which in turn affects our bodies’ ability to combat cancerous cells. Everyone has cancer cells every day, but usually the body deals with them, using strength gained from eating right, exercise, and social engagement. When the body gets overloaded or weakened, cancer has an extra chance of winning, especially if you have a genetic vulnerability to a particular cancer.

Before finding out that I would get a free pass – this time, at least – I had already started considering my options. I have no particular risk for breast cancer – no family history, and no known genetic markers. But that is true for many of the one-in-eight women who get breast cancer over their lifetimes in the United States. Given that I’m almost 60, it’s probably not life-threatening (or not that much more so than being 60 itself!). Even without cancer, I have perhaps 30 years left, 40 if I’m lucky.

If I were a young mother, I would trade almost anything for the chance to see my kids grow up, but, as an older person, I’m more concerned with quality of life than length. Of course, if the cancer was aggressive, I would take more treatment now just to stay alive. If it was slow-growing, I’d remove the tumor and engage in what is called “watchful waiting.”

Perhaps the most important thing to understand is statistics – whether for cancer or health in general. In my case, they could have gone something like this: assume you have a 70% chance of survival (defined as no recurrence for five years) if you simply have the tumor removed. Radiation and chemotherapy treatments can reduce recurrence by a further 30%. That sounds like a lot, until you realize that it means your “survival” chances go up only nine points, from 70% to 79%, because it is the 30% recurrence rate that drops 30%, to 21%.

That is not such a great increase in odds, given that there may be better treatments available by the time the cancer recurs, and that costs of treatment – in time, pain, and side-effects such as heart disease and cognitive impairment (“chemo brain”), as well as money – are high.

Was I willing to take on three years of aggressive treatment and potential long-term side-effects for a 10-point increase in my chances of being alive and cancer-free for five years, especially since no one really knows what the chances of recurrence in 10 or 20 years are? Meanwhile, five years from now there may be new drugs that are more effective and less toxic, mitigating the downside of a later recurrence.

These numbers may be perplexing, but they are useful to understand. Almost everyone is faced at some point with decisions about treatments and side-effects, for themselves and for loved ones. Indeed, you are probably facing such choices right now – if you pay attention to them. A large number of painful, dangerous conditions are more likely if you are overweight, under-exercised, a big drinker, lonely, or stressed. Even if you’re not and get such a disease anyway, you will be better able to cope and undergo treatment if your health is good.

It may be that the main value of services such as 23andMe (at least until researchers use its data and others to learn a lot more about genetics) is not the specific genetic details, but the way that it makes us focus on the numbers. Whether we are choosing what to eat or how much to exercise, or trying to assess our chances of a specific condition, the numbers make it feel real and immediate.