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Fear Factor

The mammogram was suspicious, the biopsy a fiasco. Shaken, she sought strength in the memory of a lost friend

Since I was 13 years old, when my chest bloomed a little late but impressively on my track-running, skinny tomboy body, I hadn’t been overly obsessed with my breasts, but I certainly grew to like them. I flaunted them and used them as man bait. I went topless on my Miami honeymoon with all the hot South Americans and felt glamorous and sexy. My husband couldn’t have been happier. When my first son was born, my breasts had a new and miraculous purpose?—to feed and nurture and sustain life. I breast-fed so long past simple propriety that my husband had to ask me to stop. All those years I’d been preoccupied about what men thought of my breasts, what my babies thought of my breasts, and of course what I thought of my breasts. Not until I was 40, when I had my first mammogram, did I discover how important it is what machines think of my breasts.

The mammogram machines think I have troublesome breasts. They like their breasts small and loose because finding calcium deposits and tumors are easier. Mine—big, lumpy, and dense—are much too difficult to read and too capable of hiding from the equipment the growths and irregularities that could eventually kill me. When the mammogram machines are unhappy, so, too, are the technicians who run them.

Hmmm,” the techs say as they position me in the diagnostic vise. “Your breasts are really dense.” Then they shoot me an annoyed look, as if my breasts and I are badly behaved children. Whenever I get a mammogram, I know that afterward—and even after an ultrasound—my breasts will still refuse to tell all, and I will not receive a clean bill of health. Always I am referred to a breast specialist, sent for an MRI, and then told to come back in six months. Usually I rebel and go only once a year, which leaves me panicked for the other six months.

In June of 2010, after my usual postmammogram ritual—ultrasound, meeting with a breast specialist, MRI—my doctor called to tell me that my left breast “enhanced” on the MRI. No mass was visible, but she wanted to perform an MRI-guided biopsy. My doctor couldn’t read my petrified face over the phone as she assured me the procedure would be no big deal. They just needed to rule out cancer. Radiologists would simply slide me into the MRI machine, locate the spot, slide me out, and drill in with a needle, taking three to four samples. I’d be out in 45 minutes, tops.

In the days leading up to my biopsy, I fought with my husband and snapped at my children. I couldn’t sleep. When I woke in the middle of the night and thought of what was going to happen, my chest got so tight, I couldn’t breathe. Who would visit me in my hospital room, I wondered, when I was wasting away with cancer? Would my youngest son, now five, remember me after I was gone? When I gave birth to my children, I was promising I would live until they were grown—that I would be there to protect them and teach them and love them. Would I be breaking that promise?

On the appointed day I drove myself to the S. Mark Taper Foundation Imaging Center at Cedars-Sinai. Downstairs in the waiting room I sat hyperventilating until the nurse called my name. I was already plenty vulnerable when he hooked me up to an IV to inject contrast material into a vein in my arm. The procedure turned out to be more complicated—and ghastly—than I had been led to believe, and they threw me some curveballs: I would need a friend to drive me home (um, I didn’t bring one). My breast could be swollen for a week (lovely). And from now on I’d be walking around with a piece of titanium stuck in my left breast so that later mammograms could verify that the scar tissue that was sure to form was due to a biopsy and not another growth (seriously, titanium?). This was all news to me, and I said so.

“We get that a lot,” the efficient but gentle female technician said as she and the radiologist waited for me to consent to the procedure. Shivering half naked in this subterranean room, without a cell phone or a way to call my doctor, I agreed. They slid me into the MRI machine, found the enhanced spot, then slid me out. In went the needle. Some tissue was drawn for testing. The cool young doctor (who became cooler when I became emotional) took eight samples. He left the room and conferred with more doctors. They had missed the offending spot, sucking out only fatty tissue. The doctor went in again. And again. Instead of a “few” samples, they took 18. There was blood everywhere. 

Three days later, my boob still black and blue, my phone rang while I was running an errand in a minimall. It was my breast specialist: I was fine. “I am sorry we had to put you through that, but we had to know,” she said. “You should get an annual MRI from now on.”

I slumped against a wall, trembling with relief. I did not have cancer. But I had been so traumatized, I could not touch my breasts for months, and I did not want anyone else to, either. I knew that they were healthy, that there were no signs of disease, but I couldn’t escape the certainty that they were threatened and I was threatened. I knew I was being neurotic; my husband did, too. As time passed I grew more rational, but in those early weeks I came to understand those women who opt to remove their breasts just to eliminate the anxiety and trauma of testing. And I might avoid sharing the fate of my best friend, Natalie, who died of breast cancer at 42.

ere in L.A. we do our grocery shopping in sleeveless shirts and drop our kids off at school in skin-tight Lululemon tops. Breasts are an accessory to be ogled or a commodity to be purchased. This is a zone of tone, of svelte, of baring it all. Yet with every year that I grow older, breasts seem more capable of doing harm. By the time I was 43, the year Natalie died, two other friends had had breast cancer. I was beginning to suspect that the disease was more widespread than ever. It turned out that statistics bear out that suspicion. In 1975, when population-based surveillance of cancer began, 1 in 11 women would develop breast cancer before they died; today it’s 1 in 8. In California the odds are worse. Between 2002 and 2006, the incidence of breast cancer among white women in the state ranked in the top 20 percent in the nation; among African Americans, the top 25 percent. The American Cancer Society estimates that 5,865 Los Angeles County residents will be diagnosed with breast cancer in 2011 and that 1,090 people will die from it.

With Natalie’s death, my own endless screenings, and a botched biopsy, I had come to regard my breasts—once a source of pride and pleasure—as dangerous: a place for disease to take hold.

Did other women worry like I did? Did the big-boobed woman going braless at Trader Joe’s in the slinky silk dress—the one who bewitched my husband as she reached across the coffee counter for her Stevia and let her nipple slide to the edge of exposure—fear that she was going to get breast cancer? My experiences had left me obsessed with breasts. On the playground and at happy hour I heard more and more women leaning toward each other and talking in hushed voices about scary mammograms and stereotactic biopsies. If one woman opened up, the stories started spilling out in a flood of foreboding.

I wasn’t a freak. Such was the initial, comforting diagnosis of Anne Coscarelli, founding director of the UCLA Simms/Mann Center for Integrative Oncology. Tucked away on the fifth floor of the UCLA Medical Plaza, Simms/Mann does a lot decorwise to set visitors at ease. Adorned with orchids and a burbling fountain, with herbal teas at the ready, the offices radiate a Zen energy that’s the antithesis of sterile, 21st-century medical efficiency. Simms/Mann has developed a national model for providing integrated care—the fancy term for a holistic approach to medicine that combines the best of science with the most effective complementary approaches—to UCLA cancer patients and their families and friends who support them. (While many of the services at the center are available only to those patients, some of the lectures, groups, and the Reflections Boutique are open to the public.) The center’s innovation is to focus on the psychosocial aspects of cancer, which are often overlooked by the surgeons and radiologists who do battle with the physical manifestations of the disease.

Patients can see clinical psychologists, work with a chaplain, attend lecture series, receive acupressure, and participate in group therapy sessions and support groups through the center. With the exception of physician and psychiatrist appointments, all services are free. I wasn’t a UCLA patient, but when I approached the center with my assignment to write about my struggle with breast-related anxiety, Dr. Coscarelli—she insisted I call her Anne—agreed to counsel me.

Biopsies and screenings, Anne told me, are difficult for many women, and while the circumstances of my MRI biopsy may have been particularly traumatic, the emotional implications are often factored out of it. “It is easy for doctors to say, ‘Get procedure X, Y, or Z,’ ” she said. “They are locked in their specialty. They don’t think psychologically. Doctors do not leave room for emotion in what is a very emotional procedure.” Then she pointed to my role in what had happened. She said my anxiety may have pushed my doctor to order more procedures because doctors believe more tests make people feel better. I needed to think more deeply about what I had gone through with my botched biopsy, she said, and I needed to think more deeply about Natalie.

I met Natalie on a chartered plane to Tokyo. We were among hundreds of Americans fresh out of college who’d signed up to teach English through a program organized by the Japanese education ministry. I liked her instantly—she was smart, independent, and outspoken to the point of being blunt. Later we both ended up in California, bound like sisters in our devotion to head west and escape authoritarian fathers. Even after I settled in L.A. and she in the Bay Area, we spent holidays together, called and cried to each other when we were lonely, and hatched wild adventures.

Natalie could be bossy and jealous. After I fell in love with the man I would marry, she teased him mercilessly whenever we were together. When I had my first child and forgot to call her in the initial rush of maternal hormones and joy, she wept about how I’d slighted her and then sulked for a month. I knew she wanted a child; I knew her moods and needs almost better than my own. Though she never stopped competing with my husband for my affections, she showered our children with love. Mostly what I cherished was her unfailing belief in me.

We’d been friends for 18 years when she became sick. She had neither family nor close friends nearby. I flew to San Francisco when I could to help care for her, but she let me know it was never enough. As I watched her grow weaker, I neglected my family to take care of her and neglected her to take care of my family. For two years we were at the mercy of tests and doctors’ evaluations. The cancer went into remission, then returned. She still summered with us at Stinson Beach. All the while she grew sicker. Eventually she ran out of drugs to try.

Her final weekend we lay curled up together in her bed, crying, and I shot morphine into her every three hours to help her breathe. Shafts of light burst through the clouds as I drove away from her house that Sunday afternoon, leaving her in the care of her longtime spiritual counselor, other friends, and a hospice worker. I knew I would not see her again. She died at noon the next day, July 21, 2008.

I told all this to Anne. I told her I was grateful to have been with Natalie as she was dying, but I also admitted the toll the experience took. For months afterward I needed antidepressants just to get up in the morning. No wonder I wasn’t strong enough to go through a two-month process of mammogram, ultrasound, MRI, and biopsy every year. Even though no one had ever found anything wrong with me, and no immediate relative has had breast cancer, I couldn’t shake the belief that I was high risk. “I want to do it the European way,” I told Anne. “I want to wait until 50 to start screening. I cannot do this every year!”

Anne warned me that issues extending far beyond breast care might come up during our four visits. My experience did not rival that of an Iraq war veteran, obviously, or someone who actually had cancer, she said, but my symptoms were post-traumatic nonetheless. Left untreated, my panic and fear would build over time and become an ever more destructive force in my life. Once the brain circuits caused by fear are in place, those emotions are ingrained in the way we think, feel, and act. Even when the immediate threat of our own death is unlikely, the idea of cancer and its associated stress remains. She put me to work.

Rein in your anxious mind, she told me. Learn to meditate to help prevent those catastrophic cancer thoughts. She gave me a book, Fully Present: The Science, Art, and Practice of Mindfulness by Susan Smalley and Diana Winston, which I found surprisingly insightful. To take care of your body, Anne told me, take control of it. Hold on a minute, I thought. I spent three years as a health reporter for the L.A. Times. I’m not in control of my body? The anxiety of losing someone to cancer leaves an imprint on our minds, she explained. “Sometimes you just need someone to help guide you through the medical system,” Anne said. She made an appointment for me with a top radiologist at UCLA so that I could receive a screening recommendation for the future and better manage my anxiety. “I will go with you to the meeting,” she said. When she told me that, I cried. I knew that I was getting this opportunity because I am a reporter. But the tears were also prompted by the inkling that maybe, finally, I would get some real answers.

On the day of the appointment Anne met me in the lobby of UCLA Medical Center. I carried three pages of questions. The radiologist, Dr. Nanette DeBruhl, led us into a tiny room with no windows and a screen for viewing X rays. She said that my breasts are dense and asymmetrical, but she saw nothing abnormal. “Breasts do weird stuff,” she said, explaining that hormonal shifts were to blame for the worrisome mammogram. “The breast is a big organ that changes, that has its own life. If you are stressed, drinking a lot of coffee, or your anxiety is increasing, your breasts show it.”

In cancer literature dense breasts are considered a risk factor. In several studies women with the highest levels of breast density were found to have a fourfold to sixfold increased risk of breast cancer compared with women who have the least dense breasts. Young women have dense breasts—that is normal. Dense breasts are not a death sentence and do not mean you are more vulnerable to cancer, Dr. DeBruhl said. Because those mammograms can be harder to read, that often means more tests. As a patient, that can make you feel high risk. So was I? “No,” she said, and then explained the doctor’s perspective: “The flip side is, if you got cancer, even if your risk were low, you would be angry because we did not catch it. We are trained to think the worst and then work backward. We cannot make a mistake.”

Of course doctors have to check, and of course patients like me are scared that if we don’t acquiesce, we will miss something and, well, die. But why hadn’t I told my breast doctor what had happened at the biopsy that had thrown me into such disarray? Why did I equate asserting myself with being selfish and demanding? I thought of Natalie, who even weakened by cancer would rise up imperiously in her bed and shout commands at everyone in sight, even those in white coats.

Anne encouraged me to confront my doctor. I procrastinated. Wouldn’t it be fine to simply find another breast doctor I liked better? It’s not as if Cedars was going to change its protocols as a result of my complaints. Come on, I told myself. You report on these issues. Get on the ball. So one Monday morning I dialed my doctor’s number and got…an answering machine. I left a message, asking for ten minutes to talk about my experience. The recorded voice promised someone would call me back within 24 hours. No one did.

I called again, getting a receptionist this time. “You want to do what?” she asked. “You want to schedule time to talk to the doctor?” As calmly as I could, I explained that I needed to tell my physician what had happened to me. I received no call back. I was enraged. When no money or tests were involved, my doctor couldn’t be bothered.

A week later, not knowing what else to do, I played the journalist card. “I am calling to ask to schedule five minutes with my doctor,” I told the receptionist. “If she does not call me by Wednesday, she can read about my experience in the pages of Los Angeles magazine.”

“What is your number again?” she asked.

Two hours later my doctor called. I told her I did not blame her for the difficult MRI-guided biopsy. Sometimes things just go wrong. But I wondered why she didn’t prepare me for the exam.

She listened but was defensive, at least at first. Yes, she agreed, the radiologists handled things poorly, but that was the fault of other people. I wanted her to accept her own part in making an uncomfortable procedure a chamber of horrors. So I pushed. Too gently, I can hear Natalie saying, but for me it was forceful—and a breakthrough. I didn’t cry. I simply asked that others be spared my experience by being told straightforwardly what might occur. When I said I was disappointed that she did not call me back until I made clear I was writing a story, she apologized. “It is already a very traumatic time in terms of waiting for the diagnosis,” she said. “That you had a traumatic experience getting the biopsy is not OK. I don’t want other patients to go through the same thing.”

She made good on that pledge, contacting the radiologist and following up. Shortly after, a concerned-sounding woman called from the complaints and grievances department at Cedars. (Why do they always farm out corporate compassion to women?) “This will be dealt with,” the case coordinator assured me. “We take feedback seriously.” I wish I could say I ran through my house pumping my fist.

As time has passed, I have started to feel more victorious. The steps I put in place with Anne have sunk in. I assert control now. That has made me reflect on Natalie, on the many gifts she gave me in life and now—powerfully—in death. My memory of her has challenged me to become more like her.

A year later I still dread getting an MRI. Like an insect with supersensitive antennae, I feel more attuned to every woman’s anxiety about mammograms and biopsies and to the fear of breast cancer. My husband remains supportive, if mystified, by the depth of my angst and helps me manage my monkey mind. But he, too, watched Natalie die, and the fragility of life scares him as much as it does me.

This summer while visiting New York, my husband and I walked into a gallery filled with pop art. A wall-size picture of a naked Marilyn Monroe, with a huge pink X painted across her image, hung on the wall, a blown-up negative she never wanted anyone to see.

“Her breasts look so normal. So small,” my husband said, incredulous. In our boobcentric culture, our memories—both his and mine—of the greatest sex symbol of the 20th century had morphed her body into something more inflated, less real. Now, as we stood facing the photo of her actual naked form, my husband observed sweetly, “They look like yours.”

I eyed them more closely.

They didn’t look small to me. Without her trademark conical ’50s bra, stripped bare, Marilyn’s breasts looked both beautiful and vulnerable. That, I thought as I stared at Marilyn, is exactly how I feel.            

 Photograph by Johnathan Fernandez

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