When I decided to quit acting and become a television writer, I had no idea whether I was actually capable of writing scripts. I had a notion I could do it. I was certainly better equipped to write scripts than I was to solve physics problems or fix cars. When the esteemed producer Ron Schwary offered me my first writing job—to adapt a novel into a screenplay—the only things I’d ever written were two sample TV episodes (one of which he’d read and liked). “You know how to adapt a book into a movie, don’t you?” he asked.
“Of course,” I replied with confidence.
Then I ran to Barnes & Noble in a panic and bought every book ever printed on the subject. I didn’t know how to construct a screenplay, never mind adapt a novel. But I took the money and mustered my courage, resigned to sink or swim. Every significant accomplishment of my life has been achieved by this method. Writing an Op-Ed piece for the New York Times was no exception. I had no idea if I could do it. I had no idea how to do it. But I was determined to act as if I did and see what happened.
For two months I came home directly after work, changed into sweats, tied my hair up in a ponytail, sat at my desk, and scoured the Internet for articles on the BRCA mutation. I drank cans of Diet Coke while guiltily thinking that I should be drinking green tea. (Chemicals: bad for cancer prevention; antioxidants: good.) Soon I was inundated with material. With each new piece of information I called my sister, Kay, Rebecca, or other close friends to fill them in on what I’d learned. I drove everyone crazy. I’d decided to become an expert on cancer and genetics, and my poor loyal comrades wearily held up their side of the call as I spouted. I was educating myself in order to convince myself that I could write an Op-Ed piece on the subject, yet as the mysteries of the BRCA genes unfolded, I grew increasingly emotional. There was no denying that this was not just an assignment. This was my life.
After skimming a handful of BRCA articles, I realized I ought to address a couple of fundamental questions. The first: What is cancer?
In simplest terms, according to Wikipedia: “Cancer is a class of diseases or disorders characterized by uncontrolled divisions of cells and the ability of these cells to spread, either by direct growth into adjacent tissue or through invasion, or by implantation into distant sites by metastasis.”
That was clear enough. Next, I needed to revisit ninth-grade biology: What are genes?
The Lexicon encylo Bio definition: “A gene is a sequence of DNA contained within the nucleus of our cells that carries the ‘instructions’ for the manufacture of a protein. The information they hold describes the myriad characteristics of an individual (e.g. eye color). Human beings have approximately 30,000 genes.”
I learned that everyone has BRCA-1 and BRCA-2 genes. Only a small percentage of people wind up with a BRCA gene that is mutated. (“The Chosen People” ironically came to mind—as I’d discovered earlier, the highest incidence of BRCA mutations happens to be found among Ashkenazi Jews.) A breast surgeon explained genetic mutations to me in this way: “When we construct buildings, bridges, and tunnels, an error in the plan or blueprint, if not corrected, will result in a defective product. Similarly, a defect in a gene may lead to a defect in the corresponding protein. A mutation is a change in the DNA sequence or code, resulting in an altered protein structure. The structural change in protein, may, in turn, result in defective protein function.”
The normal function of BRCA genes is to repair DNA and control cell division. When cells divide without normal control, they accumulate into a mass of extra tissue: a tumor. The BRCA genes are known as tumor suppressors. When BRCA genes are mutated—or defective—they may not be able to do their job properly.
I learned that BRCA mutations are rare—only a small percentage of people wind up with a BRCA gene that is defective. One estimate suggests that BRCA-1 mutations occur in about one out of every eight hundred people in the general population, while BRCA-2 mutations are even less frequent. BRCA mutations account for only 5 to 10 percent of all breast cancers diagnosed in America.
Another important concept that was explained to me by a surgeon is why BRCA expression is limited to certain parts of the body. All genes are present in all cells. Each gene is associated with several “off and on” switches that are activated or suppressed to different extents in different cell types. BRCA genes primarily affect tumor growth in breasts and ovaries.
Online, I investigated the differences between BRCA-1 and BRCA-2. Though the genes are similar in function, they are located on different chromosomes. This means that, when mutated, each gene carries a different degree of risk for breast and ovarian cancer. Most studies confirmed the BRCA-1 statistics I knew by heart: up to an 87 percent percent lifetime risk of breast cancer; up to a 44 percent lifetime risk of ovarian cancer. BRCA-2 mutations confer a lower risk of ovarian cancer (up to a 25 percent chance) and a higher risk of male breast cancer (6 percent chance). BRCA-2 mutations carry the same risk of female breast cancer as BRCA-1 mutations but a slightly lower risk of developing cancer in a second breast.
I learned a few other notable facts: If one parent carries a BRCA mutation, each of his or her offspring will have a 50 percent chance of inheriting it. Both BRCA mutations confer up to an 18 percent chance of prostate cancer. Prophylactic double mastectomy reduces a BRCA-positive woman’s risk by around 90 percent, but not to zero. It is currently impossible to remove all breast tissue, as it is intimately associated with the overlying skin and tissue in the axillae (arm pits). Similarly, prophylactic oophorectomy reduces the risk of ovarian cancer, but also not to zero.
Once I had digested these central concepts, I eagerly turned to articles that related personal stories. The first one that knocked me out remains—to my mind—the best piece currently written on the subject: Dr. Jerome Groopman’s superb essay “Decoding Destiny.”
The essay appeared in the New Yorker and was later printed as a chapter in Groopman’s book Second Opinions. It relays the story of his patient Karen Belz. Karen tested BRCA-2-positive at age thirty-four. Her mother had recently died from breast cancer. Her sister, Ruth—just two years older than Karen—had just been diagnosed with metastasized breast cancer at thirty-six. By the time Ruth’s cancer was detected by a routine mammogram, it had already spread to her bones and lungs. All three women carried the same mutant gene. Karen went to see Dr. Groopman because she didn’t want to be a sitting duck, waiting for cancer to strike. She turned to Groopman for advice about what action to take. Dr. Groopman acknowledges in the essay that he felt off balance as a doctor in this case. Just like my doctors at the cancer clinic in Los Angeles, he was unable to give Karen clear advice because the protocol wasn’t yet determined. He presented her with the same two unsatisfactory choices I had been given: Submit to vigilant surveillance and hope for the best, or undergo radical surgery. There was no middle ground. Like me, Karen was horrified by having witnessed her mother’s death (her horror now exacerbated by a sister with advanced cancer), yet equally horrified by the idea of removing her breasts and ovaries. She said she couldn’t do it.
When Karen leaves the office, Groopman grapples with the anguish of genetic terrors. He writes: “Perhaps it was best for us all to remain ignorant, so that life could progress naturally, without the burden of deadly prophesies.” The story ends with Karen returning to Groopman’s office, having decided to remove her breasts and ovaries after all. Her husband wants her to do it and has assured her she will remain desirable to him. Her sister, Ruth, was the real deciding factor. Ruth was riddled with cancer and feared she wouldn’t live to see her kids grow up. After soul-searching, Karen decides that she is lucky to have been given advance warning. Karen wants to do everything possible to prevent cancer and be around for her own children.
I was shaken by this essay. The logic of it was unassailable, but I did not want to face its conclusion.
Several points struck me. Though Karen had been thirty-four—a year younger than I was—she already had a husband who loved her and had given birth to children. This seemed a world away from my own situation. But this fact alarmed me: Karen and Ruth’s mother had died at a relatively old age from breast cancer—why had Ruth developed aggressive cancer at thirty-six? I read the essay again carefully and focused on a specific line: “One set of clinical data on BRCA mutations indicates that the age at which tumors first occur is highly variable.”
This sentence gave me knots in my stomach.
My defense was the fact that my mother had not been diagnosed with breast cancer until the age of fifty-two. I was clinging to the notion that this meant I would not likely develop cancer until around the same age. I was relying on the assumption that there was consistency in the age of cancer onset between BRCA-positive mothers and daughters, though I hadn’t put this question to my doctors.
Next, I read an article in People magazine that threw me into a tizzy. There were five sisters in the Kimball family. Cindy developed breast cancer at thirty-one, which shocked them all. Next Kristi felt a lump, which also turned out to be cancer. Then Wendi followed. Three sisters had all been diagnosed with breast cancer in their thirties. A doctor at Duke University Medical Center suggested that the whole family take the BRCA test. All five sisters tested positive for BRCA-1, inherited from their father. The fourth sister, Tammy, was in her late thirties, married with children, and opted for prophylactic mastectomy and oophorectomy. Jennifer, the fifth sister, was thirty-four and newly married. She planned to undergo both surgeries directly after having children.
What was the deal with all these BRCA-positive women getting breast cancer in their thirties? My anxiety turned manic. I paced around the apartment with the phone, telling every friend who would listen about the Kimball sisters. This was not good. Not good at all.
The next article I read that had a strong impact on me was about a woman named Sue Friedman. Sue had never been considered at high risk for cancer, yet she was diagnosed with breast cancer at thirty-three. Later, Sue read an article about the BRCA test in a magazine. No doctor had ever mentioned it to her. She sought out the test and discovered she carried the BRCA-2 mutation. Sue subsequently had her breasts and ovaries removed at thirty-five. She looked for an online BRCA support group for women and could not find one, so she started her own—FORCE: Facing Our Risk of Cancer Empowered.
The FORCE Web site opened a whole new world to me. Dozens, maybe hundreds of BRCA-positive women congregated at this site. They called one another “sister” and spoke a language all their own. At first I was put off by the lingo—I was afraid I’d stumbled onto a cult. Women who carried a BRCA mutation but had never been diagnosed with cancer were called “previvors.” These people spoke in a shorthand comprised of mysterious acronyms. After a while I could decipher some of them: PS translated to “plastic surgeon”; BSO was “bilateral salpingo-oophorectomy”; DH—maybe “dear husband” …? I felt like a spy reading personal, foreign correspondence. The dialogue was startlingly intimate and frank. At the same time, there was a sugarcoating—an abundant use of smiley faces and hearts. Once I got past the trappings of the site, I recognized FORCE as a tremendous resource. The message board had threads posted on every imaginable aspect of the BRCA mutation experience. Many topics went into microscopic detail about mastectomy and reconstruction, ranging from the different types of procedures available to what to wear at the hospital. There were threads on drainage tubes, expanders, silicone implants, gummy bear implants, scars, incisions, nipple reconstruction …. The site went into the same kind of detail on oophorectomy, hysterectomy, hormone replacement therapy, and so on. The wealth of information was overwhelming—too much for me. I was not ready or willing to look at the actual components of prophylactic surgery.
I skimmed the message board for threads about other women in my position—young(ish), single, dating, desiring a family, and BRCA-positive. There were scads of women my age with the mutation, but little evidence of single women grappling with my particular issues. It seemed to be the only BRCA topic not exhaustively dissected.
And then I found a thread that addressed the dreaded question: Was there consistency in the age of cancer onset among family members with the same mutation? I was distraught to learn that the answer was no. Mothers and daughters and aunts with the same genetic variant often developed cancer at entirely different ages, while some never got it at all. There was no medical consensus on what factors caused expression of the gene. However, it was generally accepted that diet, reproductive patterns, and environmental exposure played roles. I found another link in which each woman posted the age at which her family members were diagnosed with cancer: A mother at seventy; her daughter at thirty-four. A grandmother at forty-one; her daughter at fifty-eight; her granddaughter at thirty.
My false sense of security evaporated, just like that. The fact that my mother was diagnosed with cancer at fifty-two had little bearing on when my cancer might surface.
My mind raced and my phone rants to friends reached a fever pitch. Studies showed that early pregnancy helped ward off breast cancer—my mother had had two babies in her twenties, but I was thirty-five with no kids …. On the other hand, late menarche was said to hold off breast cancer and I had been the last among my friends to get my period at fifteen, in the tenth grade …. Maybe I was exposed to worse environmental factors than my mother, living in the twenty-first century in smoggy Hollywood. Maybe I used the wrong deodorant. Maybe I didn’t eat enough broccoli ….
I thought back to the genetic counselor, Cheryl, of whom I’d been so critical. I thought about how she’d expressed surprise that my mother hadn’t gotten breast cancer until age fifty-two because BRCA mutations are known to cause “early-onset cancer”: a 50 percent chance of getting breast cancer before the age of fifty. I’d had a 50 percent chance of inheriting the faulty gene from my mother in the first place. Before this experience, I’d been a “glass half full” kind of person and had considered 50 percent decent odds. Now that I’d landed on the wrong side of the coin toss, 50 percent held an entirely different meaning. If you’re on the wrong side of 50 percent, it might as well be 100 percent. Suddenly 50 percent was a terrifying, ominous probability.
For the first time, I allowed myself to think about what it might mean to remove my breasts, to imagine the possibility.
This unpleasant reverie led to the vast subject of my relationship to my body.
Harriette, my mother, Danielle, and I all had similar builds: slim and stacked. In contrast to the other three women in my family, I’d always been ambivalent (at best) about having large breasts.
In her actress heyday, Harriette had treated her figure as a vital tool of her trade. She dressed like a sexpot and worked her Rita Hayworth curves for all they were worth. My mother was of the same “if you’ve got it, flaunt it” school. She taught me and my sister that the purpose of a woman’s outfit was not to shelter her from the elements, but to show off her figure. My grandmother was a stunning Hollywood starlet, my mother a glamorous fashion designer. Both women passed on their wisdom to me and Danielle: Of all the attributes, beauty came first. And beauty to them was not just a pretty face; it meant being thin, leggy, and busty. At six, I’d be playing in the ocean with my little friend Lizzie while my mother watched us from the beach. When I got out of the water and ran to my mom to get a towel, she’d say: “Your legs are so much longer than Lizzie’s! Her tush starts just above your knees ….” I must have been around eight—and flat as a board—when my mother first instructed me: “No matter how much money they offer you, never pose topless.” The assumption of course was that I’d one day be a buxom beauty and sought after by Hugh Hefner. My mom repeated that edict many times over the years. Gradually she let details of the backstory slip: When she was twenty, some man in Vegas had offered her a small fortune to be his model, which she promptly turned down. Her mother, Harriette, had also refused several such offers.
I had never been comfortable with my oversexualized grandmother and mother. In my early twenties, I yearned to be valued for my intellect—or at least for some substantive reason like my interests or talents. To my mother’s horror, I wore oversized sweaters and sacklike peasant dresses. I started therapy around that time (like any nice, upper-middle-class, neurotic New York Jewish girl), and Edith, my therapist, broached the topic in one of our first few sessions. Why did I wear only large, baggy clothes? I told her it was a feminist thing. I did not want a man to be interested in me because I was thin and large-breasted. If he liked me for the right reasons—and I elected to sleep with him—that would be a pleasant surprise. Edith was skeptical of my pat response and got me talking about my mom and Harriette. She concluded that I was repressing my own sexuality because of my critical feelings toward my mother. Why should I feel that I had to hide my body? she asked. I knew there was some validity to her theory. However, I made the case that I had a different ideal of beauty than my mother did—I was drawn to a more subtle and, in my opinion, more sophisticated aesthetic. For instance, I loved how dancers looked, the elegance of their carriage, their posture. I was petite with narrow shoulders and my bra size was a 32D. I always felt my breasts were too large for my frame and that emphasizing them in clothes looked cheap or gauche. I longed for smaller, dancer breasts, though I never considered the extreme measure of a breast reduction. Despite my ambivalence about my large breasts, all of my boyfriends had sung their praises. This was not lost on me. There was something I was cultivating that smacked of the librarian who takes her glasses off, lets her hair down, and is suddenly a sex goddess. I had an aversion to the overtly sexy look, but I enjoyed the drama of surprising new boyfriends behind closed doors.
Whatever my feelings on the matter, being a buxom Jewess was a large part of my identity. I played the role of Anne Frank when I was twenty-one at the Lyric Stage, a small theater in Boston. In the play, Anne ages from thirteen to fifteen. It is not uncommon for actresses in their early twenties to be cast as Anne. However, when Anne is thirteen in early scenes of the play, she jumps in her father’s lap and clings to him in childish ways. I was a full-bodied woman—from that there was no escape. This led my review in the Boston Phoenix to read: “Alas, Queller’s vixenish Anne Frank …” Large breasts had turned my earnest performance into a tawdry scene.
During my relationship with Adrian he would tease me by calling me “Skinny McBooby,” which really annoyed me. I felt it was a stripper nickname (and considering that Adrian’s first wife was a stripper named Cinnamon, it was little wonder that it appealed to him). I had a bimbo complex from my Tiffany days—I strove to be an intelligent, elegant, substantive woman. Skinny McBooby did little to advance that image. Somewhere along the line I’d started equating my big boobs with the bimbo persona I so loathed. I had a love-hate relationship with my breasts. I did not want to be valued for them. I did not like the effect of emphasizing them in clothes. I strove for a more refined beauty. At the same time, I understood that men found my body sexy and I liked that. As long as I was appreciated for my mind, quirks, and sensibility first, I had no problem with lovers admiring my body in private. Of course I wanted them to. I looked down on my mom and Harriette for placing the highest premium on a desirable figure, but I still internalized its value.
Wearing clothes that partially concealed my body was an act of rebellion. But having a mastectomy? That was unthinkable. Underneath it all, I was Stephanie’s daughter—I had been raised with the notion that one day men would offer great sums of money for the privilege of documenting my breasts. When she’d been told she had breast cancer but wouldn’t require a mastectomy, my mother said, “Thank God”—she would be able to keep her beautiful breasts intact.
But that had been before. Before any of us understood what cancer was. At the end of her life, my mother—the devotee to beauty—would have given up her breasts in a heartbeat. I knew with absolute certainty that she would have done anything to live.