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‘But Mommy, Am I Going To Get Breast Cancer Too When I Grow Up?’

I wanted to avoid putting my children through what I’d been through as my mother and grandmother struggled with the disease

Judith Rosenbaum
October 29, 2013
Alma Sheppard-Matsuo
Alma Sheppard-Matsuo

I was 5 years old when my mom first got cancer.

One of my earliest memories is of lying in my parents’ bed, watching my mother stand naked in front of the mirror on the bathroom door. Brow furrowed, she is feeling her left breast; she says, “There’s something here.” I can’t help but wonder about the authenticity of this memory. Why would I—so young at the time—remember this particular moment, which I had no way of knowing would be the turning point of our lives? But the memory’s authenticity is cemented by one mundane detail: I can see the crack in the mirror, running from the corner to the center. This is the only memory I have of my mother with two breasts.

In the 33 years and five recurrences between my mother’s first cancer diagnosis and her death, she was always very open about her illness (far too open, I thought as a teenager). Yet she refused for many years to undergo genetic testing to see if she carried BRCA, the genetic mutation disproportionately found in Ashkenazi Jews that can cause breast cancer—despite the fact that her mother, too, had been diagnosed with the disease as a young woman. I was similarly resistant to testing when my doctor first raised the issue. Still a student at the time, I was concerned about having information in my medical record that could threaten my insurability. I was also entirely put off by my doctor’s glib explanation of what she would do if my genetic test came back positive for the BRCA mutation: “I would encourage you to have your children sooner rather than later, and then we’d do a double mastectomy and pop out your ovaries.” I retorted, “I didn’t realize ovaries ‘pop out.’ ” Single and in my 20s, I switched gynecologists rather than pursue genetic testing.

In my mid-30s, however, now a mother of twins (a girl and a boy), I began to feel differently. I was ready to take the test because I was willing to face the implications and take action if necessary. My mother’s illness had been a defining feature of my childhood, and prophylactic surgery, which had once seemed an extreme and barbaric option, now felt like a reasonable way—the only way—to ensure a different childhood experience for my own kids.

In order for me to get the genetic test, my mom had to be tested first; she reluctantly agreed. But before I had even raised the issue with her, I had already researched all the options and decided that I would have the surgery if the results came back positive.

That’s exactly what happened. My risk-taking tendencies, I realized, don’t carry over to cancer. Simply put, I saw myself as choosing life. Breasts and ovaries seemed like a small price to pay.

Thanks to Angelina Jolie’s recent announcement, prophylactic mastectomy is now part of the celebrity news cycle. At the time, though, my decision was shocking to many of my friends and family. My mother, forced into certain knowledge of her genetic status, chose to keep her remaining breast, and though she never tried to dissuade me from making a different choice, her uneasiness was palpable. I knew my grandmother (who was never tested) would be so appalled that I didn’t tell her about my impending surgery until days before. Though I felt a strangely calm certainty about my decision, I had my own worries, too—about the impact on my sexual identity and body image and marriage, but most of all about my children’s reactions. Would they be traumatized by the changes in my body? By my weakened state during recovery?

Remarkably, they hardly seemed to notice. One day, a few weeks after my surgery, my daughter barged into my bedroom as I was gingerly getting dressed. I hadn’t yet let her see my scars, still crusty and angry red. I froze as she surveyed my chest and belly (where skin and fat was taken to reconstruct my breasts); her only comment was “you have a dirty belly button and nipples.” And then she continued on, running her toy truck along the length of my bed, singing cheerfully to herself. I breathed a deep sigh of relief as I buttoned my shirt.

Five years later, my kids seem to have almost no memory of my surgery, though they still sometimes look at the book I made for them to read while I was in the hospital. They know that their grandmother—my mother—died of cancer; there’s been no reason to mention that their great-grandmother, now 93, had it, too, since she’s been cancer-free for nearly 50 years. And they are blissfully ignorant of the family legacy that lingers silently in my genes, and possibly in theirs.

A few weeks ago, in a rare moment of quiet as my 7-year-old daughter allowed me to brush her hair, she raised her head and caught my eye in the mirror. “Ella told me her mother has breast cancer,” she said.

“Yes,” I responded simply.

“Is she going to be OK?”

“Yes, she will. She’ll be sick for a while because of the medicines she is taking, but the medicines are working and she’ll get better,” I explained.

“That’s good.” Then, after a pause, she asked what kind of cancer Savta—the Hebrew word for Grandma—had.

“She had breast cancer, too.”

“But she died.”

“Yes, she did. But Savta had breast cancer for a long time, and she lived with it for more than 30 years,” I explained.

Another pause.

“Are you going to get breast cancer?” She was looking down now, and I was glad.

“No, lovey. I won’t. Remember when I had surgery and was in the hospital?”

She gave an almost imperceptible nod.

“Well, that surgery was to make sure that I won’t ever have breast cancer. So I can live a long life.”

I took a deep breath and kept brushing. Then she lifted her eyes and met mine in the mirror.

“Will I get breast cancer?”

Now it was my turn to pause. I tried to breathe normally.

“Sweetie, by the time you’re a grown up, hopefully breast cancer won’t be a disease that makes people sick anymore.”

It was the best I could do, and though it felt woefully inadequate to me, she seemed to accept it. The conversation ended there. This time.

I imagine that all parents eventually must come to terms with the fact that the legacy they’ve passed on to their children is in some way mixed—a blend of positive and negative characteristics, emotional and physical. Our case is just clearer, documented by a genetic test and several scarred bodies.

I know how to talk about other familial traits. When my daughter is melodramatic, I tell her, “You’re just like my Bubbe.” When she puns, I tell her we have to text Grandpa. And when she and I are locked in a battle of wills, I remind her that we’re fighting because we are so similarly stubborn.

But I don’t know the language for telling her about the other legacy that may be lurking in her genetic code and the potential impact it could have on her life. In my heart, I tell her that I pray only for the best for her and that as her mother I’ll try to help her learn how to deal with the bad things that are inevitably part of the package. I watch her strong little body growing and hope that her fierceness will be enough to get her through whatever challenges may lie ahead. And I apologize for the legacies—known and unknown—that I may have passed on.

Judith Rosenbaum is a writer, educator, and historian, currently co-editing an anthology that explores contemporary redefinitions of the “Jewish mother.”

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