The Prevention Trap

Why we need forgiveness in the narrative of cancer 

“You got breast cancer from wearing deodorant,” a sort of friend told me.

“I am glad for every sweaty day in the last 35 years that I wore deodorant,” I told her.

Unless you have been chain smoking in an asbestos-battered building, eating chips of paint while wearing moth balls around your neck; you weigh in as morbidly obese and were born into a family beleaguered with cancer diagnoses, your guess about why you –or anyone else, for that matter—gets cancer is as good as anybody’s.

I got cancer In October 2006, detected early on a routine mammogram, when I was 48 years old, feeling the best — and believing (whether or not it was actually true) that I was looking the best I had in years. I was doing work I enjoyed, thriving on a diet of chicken, fish, vegetables, fruit, oatmeal and occasionally a tub of spinach dip. I ate nothing I could not wash, which is my brother Paul’s idea of how to live a healthy life.

And yes, it did strike me as funny that I got breast cancer during Breast Cancer Awareness Month. Maybe funny is the wrong word.

I do not know the cause—nor do most of the 1.6 million Americans who will be diagnosed with some form of cancer this year. The finite answers to the question of why and how are neither neat nor satisfying for the 580,000 of Americans projected to die from cancer in 2013. I cannot explain why my sister-in-law Bernadette died from an undiagnosed brain tumor or my sister-in-law Madonna died from ovarian cancer.

There is no simple cause and effect, no magic equation. It is a maelstrom of hypotheticals and percentages, though I strongly urge anyone and everyone to pay attention and do anything and everything suggested by a well-intentioned health professional or any doctor, even if it just a doctor you are sitting next to on the bus. Because why the hell not.

The World Health Organization says at least one-third of all cancer deaths are preventable, which sounds like a lot, until you realize you are more likely to be in the 66 percent who could not prevent it. What we spend on cancer prevention just to be the one-third for whom the prevention attempts work like a charm, well, it offsets the $201 billion the National Institutes for Health put as the pricetag on cancer costs in 2008.

Here is what is wrong with this picture: the way we construct the cancer narrative—good acts lead to good outcomes so if you get a diagnosis, you must be guilty of something bad or irresponsible—has the between the lines Puritanical morality play script that you deserved it because you weren’t watchful, you slipped, you were sloppy. Serves you right.

This way of thinking is what perhaps makes some people feel better, those people on the other side of cancer who think your misfortune may be contagious. It is as if the thought of the random assignment of illness—cancer as a lightning strike from nowhere—is too deeply terrifying, immobilizing and irrational, that the rhetoric is always about prevention as certainty. Unfortunately, though, through this framing, the flip side is the assertion of disease as punishment.

You must have done something. Fool.

For me, there was the wine—not all the time, not every day, but yes, a glass or two –OK, three— at parties on the weekends, pinot grigio. There were the years of low dose birth control pills, and thank God for them, too. From my 20s through my 40s, I took them religiously for several chunks of years subtracting for the spatially intended children and the breastfeeding of those three intended children.

And later there was the indomitable stress following a divorce from an irrational and chaotic man and the raising of three sons alone— trying to do it all, pay for it all, be something more, achieve what I dreamed and occasionally laugh out loud. I walked every day, an hour a day. Even though studies show it lowers the risk for breast cancer, I admit I walked for the tight jeans.

I swam in the summers—40 laps at an outdoor pool where kids weren’t allowed in the adult lanes. Never went to a suntanning booth, because, come on, why would I do that? I did go out in the sun, but wore sunscreen. Didn’t smoke cigarettes or pot—though a few of my friends still did; I thought it was obnoxious and smelly in college. My opinion has not shifted much.

Never had a mammogram that was not normal since I was 40 years old. None of my three older sisters or my mother had breast cancer. I am not Jewish, and do not have the Ashkenazi gene. My mother had heart disease; my father, too, he died from a stroke at 64. Because of him, I stopped eating red meat about 1989.

I believed what all the women’s magazines and health websites said about prevention plans and prevention diets ripened with the illusion of control. I also believed the horoscopes and the palm readers, but that is another story.

Seven years ago this month, I had a lumpectomy and a course of brachytherapy— internal radiation. My doctor (who sounded like Alistair Cooke) said I was cured, but I took two years of Tamoxifen and later four years of Femara to be more certain, improve the odds of non-recurrence. I have done what I was supposed to do. So please stop making me feel it was my fault.

This is why I shudder at our creation of the prevention trap—the promise of immunity. Noble in its mission, simplistic in its delivery, we are immersed in a culture that manufactures a false prophylactic against an enigmatic and pervasive disease. Because when you believe you can prevent cancer definitively, you feel hopeless, guilty and deceived when all of a sudden you can’t. You fall into the trap.

You want some breathing room in your defense to say you did everything you were told to try and prevent yourself from the Big C, and then when you get cancer anyway, you want the social space to forgive yourself for not having power over the machinations of every cell in your body. You want the room to claim the unknown.

And it would be nice to not have every know-it-all on the planet with a clean bill of health to cluck his or her tongue at you in pity, judging you, thinking you were foolish enough not to follow the prescribed playbook—did you not notice the pink ribbons?— in what some astutely have called cancer blaming.

As a society, we are immersed wholeheartedly nipple to toe in the sanctity of the marketplace of prevention—mostly all good intentioned—convincing us we can stop cancer’s arrival, as if blocking its intrusion is as simple a feat as building a flood wall or having a sump pump installed in our basement.

The multi-billion dollar prevention tourism peddles the notion that getting cancer is something you can decide to avoid like running a red light or getting wet from the rain. You can stop the car, open an umbrella. Of course you can.

The new, clever multimedia ad campaign, “Stories of The Girls,” from Advocate Healthcare, offers with cute video clips that diet and exercise can do the trick. It also spells out steps of self-exams, mammograms and follow-ups. Fine, but what if it doesn’t work?

In that open triage territory when you are fresh from diagnosis and before you arrive in treatment —where everyone envelops you in a blanket of concern and compassion— you are log-jammed with guilt, tumbling without a safety net. Trying to figure it out while listening to all the loudmouths with opinions on what you did wrong, you are free-falling. This is the black hole we need to fill with the silence of forgiveness.

Certainly, it is not that I am against the notion of cancer prevention. I do believe in the altruism and dedication of the medical community and researchers relentlessly pushing for new protocols, medications, surgeries, treatments and cancer-preventing diets, habits, behaviors and rituals. And I do believe their efforts have saved lives and encouraged people to live more healthy existences. Thank you.

And to everyone everyone who wants to try to prevent cancer? Yes, of course, try it, try it all. Try it all every year. Follow each tip to the letter, sure, and why not. But temper the evangelism with realism. Let us not move automatically from prevention certainty to finger-wagging. Let us swell the conversation to be more nuanced, acknowledging the gray margins of the unknown while assuring the 66 percent of us who did not avoid a diagnosis that we can work just as hard on a possible cure as we are working on prevention.

It used to be—maybe 10 or 15 years ago—that all my friends seemed to be getting divorced. Now it seems all my friends are getting cancer. Who is bald this week? Who is recovering from radiation? Who is fresh from surgery? To whom shall I send a batch of cookies and the clever night shirt that reads, “F—- cancer?”

Whether it is true or not, I decided my cancer was a complicated formula of genetics plus environment plus stress plus fate plus who knows what, maybe the perfume my mother wore when she was pregnant or the weed killer my father spread on the backyard lawn. Perhaps it was the diet soda I drank, the milk I didn’t. It wasn’t the blueberries I ate or the red peppers I loved. It was not necessarily the burned popcorn or the smoked meat I relished while living in Texas.

Quite possibly it could have been caused by exposure to the silver foil Christmas tree in the basement of our house on Clinton Avenue in the 60s, the one with the rotating colored wheel we plugged in near the television. It was too hideous not to have a lasting impact.

Throughout the year, not just in the month assigned to awareness, we need to speak about the process of prevention as an attempt, a promise only, and understand it is a promise not universally delivered. And if by chance, we are marked with cancer, we must not see it as a failure or a bad choice made somewhere on our timelines, possibly even in utero, but only as a wish for more answers to discover and more years to live.

Because that is the point.

Author of Act Like You’re Having A Good Time +5 other books; NU emerita faculty; journo, OpEd Project leader; editorial director TakeTheLead, mother of 3 sons.