Wait and watch is not a strategy; it's a Zen exercise. And I'm not Zen.
"What are my chances?" I asked the surgeon. "What are the chances that these atypical cells will turn into cancerous cells? Do you have any data on that?"
"We don't have definite data," she answered, which surprised me. Such a crucial figure, and it wasn't there! "What we do know is that a woman with your history has about a 10 times greater lifetime risk of developing cancer than the average woman does."
"I want my breasts cut off," I said.
"That's extreme," she said. "With women like you, we prefer to take the wait‑and‑watch approach."
That's easy to say if you're the one doing the watching, not the waiting. I had already waited through the anxiety of five prior breast biopsies in the last seven years, through 10 mammograms, one MRI and endless sonograms. I'd waited through the diagnosis of breast cancer in two close relatives. I found the screenings, or, more specifically, the waiting, to be excruciating. More excruciating still would be waiting with the new knowledge, thanks to modern medicine, that I had this ream of funky looking cells whose plans I could not fathom.
Thousands of women are now facing these hazy "maybe" diagnoses. Abnormal cells like mine could go on to become a malignancy, but they could also just sit there, indolent as a lady on a lawn chair, quiet and shut‑eyed while the carrier moves through life, dying from age, not illness. Part of the problem, it seems to me, is not only cancer but the ever‑spreading awareness of it. Sometimes I think this awareness is bad. Sometimes I wish I'd never known about my rusty atypical hyperplasia, because knowledge is only as good as the treatment it spawns. Wait and watch is not a strategy; it's a Zen exercise, and I'm not Zen. I'm Jewish. I'm nervous.
When I got off the phone with the surgeon, the cat leapt from his nap and streaked out of the room, alarmed by something I couldn't see. I stood there, in the sunlight, by the window overlooking my garden. Puddles from an early morning rain shone like sheets of glass in the ground. I touched my fresh biopsy scar. It gave beneath my fingers, still soft, the bruise the color of a pansy.
The next day I said to my husband, "I want my breasts removed."
"But you have such beautiful breasts," he said to me.
"I don't want to be closely followed for the rest of my life," I said. "I want to be free of it."
We went for a walk then. He held my hand. On the ground were many small stones, strangely shiny. Back inside, in our room, my husband touched my breasts, mapped with turquoise veins; pendulous, mountainous, ridged—sprouting lumps and bumps no one could quite interpret.
"Your breasts and I have a relationship," my husband said.
I stepped back then, angry. "If you like them so much," I said, "then you take them. You wear their weight."
He didn't say anything. He is a kind man, a gentle man, prone to optimism at all costs.
This was not his body.
My body: I am a dainty teacup of a woman with a size‑D endowment. I'm 5 feet tall, weigh 100 pounds and have hands the size of my third‑grade niece's. The scaffolding of my chest bones is easily visible in V‑necks. From a purely aesthetic point of view, my breasts have never fit my frame. This was no reason, of course, to have a mastectomy, even though some part of me had always longed for a field‑flat upper half. I'd imagined being lean, maybe with a rose tattoo curling around the scar.
A mastectomy had some fashion appeal for me, I can admit that; but believe me, I would not have done it had there been an alternative. Wait and watch was not an alternative. It would have meant having clinical breast exams at least twice a year, annual MRIs and every lump analyzed. I got, on average, five lumps a year, which could translate into five biopsies a year. All told, a surgical biopsy is a one‑month affair, from the discovery of the lump to the pathology report, and all the while you're quaking. It didn't seem right for a type A person like me to choose this as a strategy; it was like asking a purebred Dalmatian to sit quietly in a crate all day and just relax. But that's exactly what friends and family told me in the following days, some even going so far as to turn it into a kind of spiritual hopscotch: "It will be good for you, learning to live with this anxiety." For some people, maybe. But for me, prone to obsess, it didn't seem right.
Drastic measure or smart solution? The facts about preventive mastectomy
Every year, some 2,000 to 4,000 women undergo prophylactic mastectomies, having their healthy breasts removed in an attempt to prevent cancer. And while the procedure is still so rare that precise figures are hard to come by, experts agree that more women are having this surgery. "It may seem counterintuitive to remove noncancerous breasts when most women with cancer keep their breasts," admits Patrick Borgen, M.D., chief of breast service at Memorial Sloan‑Kettering Cancer Center in New York City. But for many women with an increased chance of developing the disease, the option brings peace of mind. Two studies from the Mayo Clinic in Rochester, Minnesota, found the surgery decreased breast cancer risk by at least 90 percent.
Most women who have a preventive mastectomy feel good about their decision. Three out of four worry less about cancer, and most say their stress level, self‑esteem and sex life either stay the same or improve, notes another Mayo Clinic study. But the results aren't always positive. Nineteen percent are dissatisfied, citing reasons such as surgical complications and a more negative body image. A key to satisfaction may lie in a woman's sense of control. "Those with regrets often feel their M.D.s talked them into it," says Dr. Bergen.
No one knows whether improved screening methods are behind the rise in prophylactic surgery, but MRI and ultrasound have certainly made it possible to detect the tiniest cancers. Trouble is, the best treatment for these—and other abnormalities—is still subject to debate. Consider atypical hyperplasia (the diagnosis given to Lauren Slater). The average woman has a 10 percent lifetime risk of breast cancer, but those with this condition—in which abnormal but not yet cancerous cells are present have up to a 30 percent risk. Is mastectomy the solution? Some experts believe that for a woman with a higher‑than‑average cancer risk, the answer may be yes, especially if she also has dense or lumpy breasts, which can make detection difficult. "When we have less confidence in the accuracy of the mammogram and clinical exam, we need to do a biopsy," says Lynn Hartmann, M.D., a Mayo Clinic oncologist. "Patients don't want to keep going through that."
Increasingly powerful screening methods have also turned up more cases of ductal carcinoma in situ‑noninvasive cancers confined to the milk duct. But here mastectomy may not be the best option: Some studies suggest that women with localized DCIS who undergo lumpectomy and radiation have the same survival rates as women who opt for mastectomy.
Still, even women with a family history of breast cancer can safeguard their health without succumbing to fear. Genetic counseling can help put things in perspective; so can getting tested for BRCA gene mutations. No matter what, consider less drastic medical alternatives first. Says Dr. Bergen: "No surgeon wants the future of breast cancer prevention to be about removing healthy breasts." ‑Holly Pevzner
I made another appointment with my breast surgeon. I told her I'd thought it over and I really wanted that mastectomy. My surgeon said OK, though I worried she wasn't happy. My mother definitely wasn't happy. She said, "Don't overtreat yourself. Don't overreact." My brother, a physician, said, "Surgery has its own risks, you know," but I didn't want to hear it; I still don't. I realized the irony of my decision: I was choosing the most extreme medical intervention to get out of a lifetime of medical interventions, one big biopsy to sidestep years of smaller surgeries lying in wait. Many people told me that in choosing mastectomy, I was choosing to evade the anxiety inherent in so much of life. One friend asked me, "What's next? Will you cut out your ovaries, take out your cervix when a Pap comes back irregular?" Well, maybe. I'll go case by case, body part by body part, assessing the risks to skin and psyche. To those who kept telling me that all life is lived in the conditional tense, that I should see this as a gift from some god, to those people I say: No thanks.
I have a beautiful daughter I want to see through. I have Benjamin, my husband, whom I love. I have two dogs and a cat, a house, and a garden to grow. If there is any way I can increase my odds for survival, I will. I get only one goround at the little bit of life I have on this earth, and I don't want to spend it with my breast surgeon. Medical technology has given me reason to believe that I am aging poorly; I cannot ignore this knowledge, even as I see it leading me straight toward a surgery with its own grave risks: losing my breasts. Possible nerve pain. Movement restriction. The dangers of general anesthesia. These are the facts. There is also the fact that women who undergo prophylactic mastectomy have only a 1 percent chance of getting cancer. That's a fact I can live with.
As soon as my surgeon said yes to my mastectomy, scheduled the procedure for the first available time slot. One week. "So fast," everyone said. Don't you want to think about it some more?"
No, I didn't. I had done my thinking, hard and deep; quick as a scalpel on skin. In the seven days leading up to the procedure, I did my own kind of grieving, quietly, minimally. I said "I'm sorry" to my breasts. I said, "I'm sorry to cut you off."
I remember how tender my nipples turned in my 14th year, how the breasts themselves rose out of my chest like swans on a pond, white, pink‑tipped, proud. I remember my pregnant breasts, spectacular, latticed with veins, the gold drops of colostrum after the baby came. Goodbye, breasts. Where would they go? I pictured them floating down some river with all sorts of other hospital flotsam, syringes, gauze, my two breasts untethered, abandoned, the hollow part in my body.
I was absolutely decided, but then I wasn't. Should I cancel the surgery? Should I postpone it for a while?
One afternoon, I went to the breast resource center at the hospital and brought home books of women with one or both breasts removed, full‑page photos of topless women with zippers running from their sternum to their armpit, their stares defiant or shy; one woman with her head thrown back, her hair the color of apple cider pouring down. "What do you think of how they look?" I asked my husband. We turned the pages together. He said, "They look fine, but you, I can't imagine you without your breasts."
"Would you still be attracted to me?" I asked.
"Of course," he said, as though he could possibly know.
It was springtime, and tiny nipples were appearing on the lilac's branches. My husband went outside and dug in the earth; he made mounds of soil, (Continued on page 161) plunging his hands in and pulling out silky, segmented earthworms. Now he is doing his grieving, I thought. Then I thought, Maybe I really should not go ahead with this. But then I squeezed my nipple and a little bit of blood‑tinged serum bubbled out of the duct; that would need to be checked; there was a strange ridge in the upper‑right quadrant‑was it growing? That would need to be checked. And there was my child, so small, her hair all floss and gleam, her language just beginning and incredible to hear‑phrases like, "I don't like to be lonely," or "Oh, my God! I forgot to say thank you!" or "Is the moon Jewish or Christian?" I looked at my difficult breasts with their droplets of blood and then I looked at my daughter growing, and I knew what I needed to do. I didn't change my scheduled surgery. Each night, when I put my child to bed, she said, "Hold me tight, Mama," and I pressed her to me.
The night before the surgery I thought I should do something special, something ritualistic to mark this momentous passage. I thought maybe I should write myself a letter explaining why I was doing what I was doing, so if I regretted it later, I'd have those words to look back on. My husband said, "We should take pictures of your breasts," and that seemed the obvious thing to do, but I didn't do it. He tried to touch my breasts and I flinched away. I'm sorry I did that now that they're gone. But I didn't want my breasts awakened, aroused, for then I would feel their loss more keenly. We went to bed. I put my nightshirt on over my bra. He said, "Take off your bra," for he wanted, still, to touch me.
"No," I said. "I can't."
THE NEXT MORNING WE DROVE TO THE hospital. We waited in a room with a young boy in a wheelchair who operated the chair by breathing into a tube. There was also a man without a leg and a perfectly healthy‑looking woman who nevertheless probably had something wrong with her at some invisible level. My name was called. I went into the preop place. A man named Dr. Drown introduced himself as the anesthesiologist, and then I said good‑bye to my husband and was wheeled down a hall with Dr. Drown into the operating room. A mask was placed on my face. Then I went down, drowned, and awoke nine hours later in a dimly lit room with someone saying in my ear, "Are you nauseous?" I was, and in tremendous pain with the knowledge, immediate and stark, that my breasts were gone, lifted off my body, a raw lightness on my chest.
THE RECOVERY HAS BEEN DIFFICULT. THE first night I pressed the morphine pump repeatedly as nurses came to roll me over and then back. Now, two weeks later, lam at home and on my feet again, free of my breasts, yes, but with strange stabbing pains and tingles, burns and scrapes in the bulldozed flesh where my breasts used to be. Sometimes I distinctly feel my left nipple, though it is no longer there. I feel it erect and aroused, begging to be touched. Other times, my missing right nipple goes into spasms of itching so serious it wakes me in the night. I reach down to scratch, but the skin is numb, the itching a phantom sensation. "Yes," says my surgeon, when I ask. "Like in any amputation, you can get phantom limb, phantom breast. It will go away."
I removed one pair of breasts and got, in return, a pair of phantom breasts with nipples far more sensitive than my own ever were, with aches and desires and cries and tingles. These breasts that are not breasts are so alive! Sometimes I think they are punishing me for what I did, sending me nerve and desire from the spirit world, where they are now, floating. But that is just bad thinking. As the weeks progress, the phantom breast sensations lessen; the nerves adapt. It gets quiet where my heart is. I decide to get implants, a surprisingly simple procedure. The doctor calls.
"We got the pathology report back," she says. "The left breast was fine, but the right one showed some severe atypiabordering on precancer. All things considered, I think you made the right choice."
How many women, I wonder, are being told to "watch and wait" as I was? Having no breasts might be less beautiful, but is it, in fact, safer? What I know is that my S‑shaped scars are healing, though more slowly than I thought. Truth is, the pictures in the book look better than what I had after my surgery, before my implants. A banged‑up suture site.
And yet, I do not regret my decision. As soon as I heal, I will see my surgeon only once a year. I will no longer need to be tracked and biopsied until every place on my breasts is pocked. Mammograms mean nothing to me now. I won't need them. I went from hazy atypia to a smooth shelf, and if cancer grows there, it will do so while I'm living my life, loving my girl, tending my garden; not while I'm waiting for it, perpetually recovering from small surgeries that are the stuff of modern breast cancer detection. I went back 30 years in medical history to a time when mastectomies were common and I said, "Do it to me." And they did.
Every day now, I grow stronger. My daughter pulls up my shirt and says, over and over, "Mama, are you OK?"
"Yes," I say.
She touches the incisions, the black waxy sutures. She is only 2 years old.
"What happened to your breasts?" she asks me.
"I had a boo‑boo," I say. "The doctors made it better."
"Are you OK?" she says.
I look at her, my girl, with her mineral green eyes, so fair and towheaded. I did not know, before I had her, the quality of this particular kind of love.
She touches my scars again. The phantom sensations sizzle and sing. I feel sadder and safer both. We sit on the couch. "I'm OK."
Lauren Slaler is the author of Love Works Like This: Moving From One Kind of Life to Another (Random House).