A particle exists in all states at once until it observed—this is a truth of nature. More than one thing can be true at a time, according to the Copenhagen Interpretation of quantum mechanics, and the only way you can tell what’s happening to these particles is to take a look because, amazingly, the act of looking is what determines the outcome. But in the real world, it’s different—that’s what Erwin Schrödinger wanted to prove when he devised his famous thought experiment.
Say we lock a cat in a box alongside a decaying radioactive sample tied to a bottle of poison, which will then kill the cat at an unknown point in time. From the outside, we don’t know what state the cat is in. But that doesn’t actually mean the cat is both alive and dead at the same time, the Austrian physicist argued. It just means we don’t know what’s happening.
In the summer of 2015, I was diagnosed with a genetic condition called Lynch Syndrome, which leaves me predisposed to developing a number of cancers. I’m not sick, but chances are high I could become sick. I’m the cat in the box, the radioactive sample is my faulty PMS2 gene, and the bottle of poison is cancer. Once a year or so, doctors run me through a battery of tests—look inside the proverbial box—to see if the cat’s still with us.
As predictive genetic testing becomes more common, more people will be faced with the knowledge that something inside our bodies might be working against us. But what does that mean?
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At the top of the list of cancers I could get is a one in five chance of developing colon cancer (normally, odds would be one in twenty-four), as well as a one in five chance of endometrial cancer (normally, one in thirty-five). On a good day, I think, “So what! One in three people will get cancer in their lifetime anyway. And we could all get hit by a bus tomorrow!” On a bad day, I feel like my body is no longer my own.
That one in three cancer risk includes everyone, no matter their lifestyle or genetic makeup. But if you want to make your head to spin, just Google “Things more likely than a plane crash,” and marvel at the great many things that could lead to your demise. The likelihood of being hit by lightning is one in three thousand. The chance of being crushed by a vending machine is one in 112 million. Your chance of having been born with Lynch Syndrome , which is significantly under-diagnosed, is one in 350.
Would you want to know if you were predisposed to certain illnesses? Before I decided to get tested, I knew I had a 50 percent chance of carrying this gene, as is the case if a parent has it. I wasn’t about to have that uncertainty hanging over my head for the rest of my life. But not everyone thinks like that. I recently met someone whose mother had early-onset Alzheimer’s. She was in her fifties, but barely remembered her kids. Her son told me, without prompting, that he’d taken the test to see if he’d inherited her Alzheimer’s gene, but he’d never gone to pick up the results.
He is actually far more typical than me. Many people who know there might be a risk like this choose not to find out. Before predictive genetic testing became available about three decades ago, roughly 70 percent of those at risk of Huntington’s disease—a lethal, degenerative disorder where there are no percentages, just a yes or no answer—said they’d get tested if it was possible. But when a test became available, only 15 percent took it .
Of course, this is different than having a higher risk of cancer, as there’s little you can do if you’re at risk of a degenerative disease. Knowing about my cancer risk means I can get into a regular testing program, so taking the test was a no-brainer for me. But I had no idea how much knowledge like this fucks with your head.
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By the time they’re in their thirties, most women will have undergone cancer screening. Cervical cancer used to be the number one cancer for US women in the 1900s, until the development of the smear test eventually led to cervical cancer rates being halved. I’ve been tested every year since I was in my mid-twenties and never thought anything of it, because it was what every woman I knew did. The argument for screening is obvious: Catch it early and it’s easier to treat.
Because of my condition, I go to a number of regular cancer screenings, and as long as I keep it up I’m told my chances of surviving any potential cancer I get would be more or less on par with the average person. But a risk we all face together is not the same as a risk that’s aimed squarely at you. I dislike a smear test as much as anyone, but that discomfort is an experience many share. That wasn’t the case last summer, when I was choking on the scope that was pushed down my throat to check for stomach cancer. It was different because I was the only one I knew doing it. My experience was no longer communal.
The body hides its problems well, a doctor once said to me as I remarked how invasive cancer screening is. Her tone was almost philosophical, as she was getting out a probe cover for the transvaginal ultrasound. The covers were the same brand as the condoms they hand out at sexual health clinics. As the doctor poked around inside me, I thought about the different business verticals for a latex company—they could make gloves too, I suppose. It was yet another uncomfortable procedure, but compared to every other cancer screening I’ve undergone, it was harmless.
The problem with putting an otherwise healthy person through repeated invasive screenings, another doctor explained to me once, is that it makes them feel like they’re sick when they’re not. I’ve only got a 20 percent chance of endometrial cancer, so if I did nothing there would be an 80 percent chance it would all work out fine. Those are not terrible odds! Yet soon enough I’ll be in that backless gown again, facing the cold hard fact of that chance. Logic is out the window when you sit there with your fear, jittery and anxious from low blood sugar (because you almost always have to fast), bargaining with gods you don’t believe in.
I wish I could be one of those people who seem to come at all of this with courage and humor, but for me, there’s nothing graceful about cancer screening. Last year I had my first hysteroscopy, a procedure in which they push a steel rod into your uterus to look for cancer. It’s the only way to check for problems in the area, and the effectiveness is debated. But I did it anyway, because a genetics consultant would not stop talking about how I really should prepare myself for a prophylactic hysterectomy. I was thirty-six.
The hysteroscopy leaflet described the steel rod and the cold water that would accompany it, and then it recommended I take two ibuprofen beforehand, which made me laugh. I took the ibuprofen, and then I took some codeine, and by the time I was in the stirrups I felt thoroughly unable to operate heavy machinery—the only acceptable state to be in for what was about to happen. The steel rod wasn’t so bad, but I yelled “FUCK” very loudly during the biopsy, and I’d have felt sorry for the nurse had she not raised her eyebrow at me. I didn’t feel like a person with a 20 percent chance of endometrial cancer that day. I felt like a sick person. I felt very much like a patient as I waddled off the table, and was handed a sanitary pad larger than my shoe “for the water that will run out of you.” I definitely felt like a sick person when I cramped so badly for hours that night that I reached for the codeine again.
But at the same time, I know that I’m lucky—they didn’t find anything wrong. I think about this as I eye up my upcoming appointment with the gynecological oncologist. I know she’s going to want to talk about a hysterectomy again. I know it’s just a 20 percent risk, but people with Lynch Syndrome get endometrial cancer when they’re younger than me all the time. The risk is real.
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Can we ever really make sense of probability? I asked my friend Rif, who has a doctorate in operations research from MIT, if he could explain my odds to me.
“One interpretation of probability is that if I simulated infinite parallel universes that were basically like this one, except that this [outcome] was undetermined, you’d get cancer in about 20 percent of them,” he said. “Another interpretation is that when someone says you have a 20 percent chance, they’re roughly saying they’re indifferent to a bet where they pay 20 cents now, and get back one dollar if you have cancer and nothing if you don’t.”
Rif did warn me that these were “philosophical” considerations of statistics, which is another way of saying that no one really knows for sure. But his explanation reinforces the fact that this knowledge of my chances feels like an upfront payment on a debt that may never get called in. I could do all this work—the screening, the worrying, the consultations—and it could all be for nothing.
Nature doesn’t care about the individual, and statistics are much the same. Medical probability tells us about risk across the population. Is it all just meaningless to the individual—a coin toss? Rif says that it’s not, but it’s complicated: “Most things that are 20 percent likely don’t happen, but because there are so many possibilities in the world, things that are 20 percent likely happen all the damn time.”
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“We tell ourselves stories in order to live,” Joan Didion wrote. But while this quote is often used to illustrate how storytelling can help us cope with adversity, Didion’s eponymous essay in The White Album, where this quote is from, isn’t about making sense of the story at all—it’s about how she fails.
I first read that Didion essay years ago, and many of the details stuck with me: Her packing list; how she met Jim Morrison; her habit of putting lentils to soak on Saturday nights. But what had completely slipped my memory until I read it again recently is how she describes being diagnosed with multiple sclerosis: that feeling of “what it was like to open the door to the stranger and find that the stranger did indeed have the knife.” Didion seems to have done her own spinning-out about probabilities: “Things which happened only to other people could in fact happen to me. I could be struck by lightning, could dare to eat a peach and be poisoned by the cyanide in the stone.”
That’s how I felt too when I learned I was born with a faulty gene. I remember the moment after I found out: I just stood there, shocked, staring at my hands. I felt like my body had been replaced with one that wasn’t mine. This is called disassociation, I later learned. Now, nearly three years later, my body feels like my own again, or maybe I’ve just been in this parallel universe long enough for it to have become normal.
I used to say this knowledge hasn’t changed me, but it has. In many ways, I’m still the same brat I always was: restless and stubborn and determined. But the ground under my feet will never quite feel stable again. I no longer trust anything the way I used to, because nothing about this fits into the script I’d lived by my whole life. I’ve yet to work out how to tell myself the story in a way that makes sense to me.
Some days I’m grateful to be healthy—a bit like when you go outside on that first day when you no longer have the flu and you’re just thrilled to be there. You always think you’ll never take wellness for granted again but, despite your best intentions, you do. I suppose that’s the best thing I can say about all this: The awareness of wellness never quite wears off. That’s something, even if it’s just another way to say it all feels a bit precarious. None of us know what’s going to happen. And in the absence of certainty, hope rushes in.
