by Lizzie Stark
That woman, her desperation and her suffering, frightened me. My life became a waking prayer for her as I walked the high school halls, and before bed: “Please don’t let her die, God,” was all I could think. Two weeks later, when she died, I couldn’t bring myself to go to the funeral. Eventually, I wrote an essay about her during my senior year, titled “Atheist.”
Cheri greets me with a hug at the door. She looks robust but tired to me, and most of all, she still looks like Cheri. She’s covered her head with a pretty silk scarf that looks fashionable, like she is some sort of European doyenne in hiding.
I am surprised by how normal it feels, to hang out with Cheri and gossip about mutual friends and talk about cancer treatment. I soon get over myself—it has been unfair of me to put the burden of my relationship with cancer onto her. She is still here, living with metastatic cancer rather than dying from it, though she is very matter of fact about her illness and the way her treatment makes her feel. She has pragmatically accepted her diagnosis and is willing to talk about it and how she got to this place.
Almost two years before, she had given birth to her first child, a baby boy, whom she breastfed. A month later, she noticed a lump on her upper left sternum. Her husband thought it felt like a tight muscle. She assumed it was related to breastfeeding and waited a few months before calling her midwife, who thought it was nothing but ordered an ultrasound anyway. The ultrasound came back negative, and the midwife scheduled Cheri for follow-up in a year. Cheri wanted a second opinion. Her primary care physician wasn’t concerned about the lump but suggested she see a surgeon just in case. The surgeon ordered another ultrasound that came back normal and followed up with Cheri a few months later, when he ordered a fine-needle biopsy, where they use a small gauge needle that the doctor—by feel—inserts into the tumor to withdraw cells for testing. Of course, fine-needle biopsies do have a false negative rate of about 5 percent. Her results came back negative. A few months later, same drill—another ultrasound, another negative result. By now nearly a year had passed, with her doctors chalking up the lump to hormones related to breastfeeding. With her son almost a year old, Cheri began weaning him. Four months later, she visited her doctor again. The lump had grown a bit. So Cheri had another ultrasound. The doctor called her at home on Friday night to explain that they had found something. On Monday, Christmas Eve, Cheri had a surgical biopsy. She got the phone call two days after the holiday. “I just knew it was going to be bad,” she told me, “because it had been so long” since she’d discovered the lump. On New Year’s Eve she woke up from surgery to lodge a port for chemo and blood draws beneath her skin to the news that it was stage IV and had spread to lungs, liver, and the lymph nodes in her chest. Cheri said she and her husband were simply “out of our minds.” The chain of events that led her to be diagnosed with the most advanced, hardest to treat, and aggressive form of cancer out there boggles the mind. “It was like the perfect storm, basically,” she said.
Because she was a young, premenopausal woman with triple-negative cancer, doctors immediately tested her for a BRCA gene and discovered she carries a BRCA1 mutation, just like me. She’s not sure which side of the family it comes from but thinks her mother’s side is more likely, since it has five cases of breast cancer in it, including two great-aunts, two great-grandmothers, and one distant cousin, although most of these cancers occurred around the age of menopause. One of her mother’s three brothers developed prostate cancer, which could be related. Her father’s side has mostly men in it, although her father has one cousin who developed breast cancer young. Either her father is a silent carrier of the gene, or her mother is a carrier who has beaten the odds and has not yet developed breast or ovarian cancer. She may never know which—her mother is not in a financial position to test. Her sister, who is a half-sister, has tested and is gene-free.
With the cases of cancer in her family relatively distant—Cheri does not have a first-degree relative (a parent, child, or sibling) with breast cancer—she was not offered testing as a young woman. She even recalled one doctor telling her that because she didn’t have any first-degree relatives with cancer, the family history wasn’t really a family history—in the absence of an affected aunt or sister or mother, it didn’t really count. Her relatives had always said that cancer ran in the family, and that was what she told her primary care physician, who said that, in deference to that fact, they’d start screening her early, like at thirty-five. “Ironically,” she tells me at our meeting, “I turn thirty-five next week.” She’d never even known that women could get cancer so young, she says, until she heard about my mother around the time of my mastectomy, “never knowing that … that could be me.” She wishes she’d known; she wishes she’d gotten tested. Her particular mutation is in the 87 percent lifetime risk range. She sighs as we talk about all these ifs—if she had just seen a different doctor, if she’d had a genetic test, if she had had a more accurate biopsy procedure, if, if, if. It’s possible to drive yourself crazy with ifs, she says. But Monday morning quarterbacking doesn’t do any good. She has to live with the reality of now.
She has a husband and a kid and wants to stay with them as long as she can. She’s not interested in knowing her prognosis though and had her therapist call her oncologist to tell the doctor to stop pushing Cheri to talk about it. “I was like, you know, if you tell me I have three months to live, I’m going to give up. I feel that’s how I feel. There’s no point to talk about it until it’s really the end. Until you have weeks left to live.”
Amid a sea of pink ribbons, Cheri tells me, “metastatic breast cancer is kind of like the shady underbelly that nobody really talks about.” To me, it’s also the other, darker side of BRCA, given the aggressive strains of cancer bred by many mutations and given the disproportionate cancer burden shared by this community. And the truth is, women living with metastatic breast cancer don’t have many options. According to a 2010 study, only 2.5 percent of the American Cancer Society’s 2009 funding went into developing treatments for metastasis, while numbers for other international cancer groups, such as German Cancer Aid or the UK’s National Cancer Research Institute in the mid-oughts remained similarly low (4.3 and 5.1 percent, respectively). A 2004 look at the National Cancer Institute’s grants since the 1970s in Fortune magazine found that less than half a percent of proposals focused on metastatic cancer. Meanwhile, up to 30 percent of patients who develop early-stage breast cancer will eventually end up with metastasis. According to the National Cancer Institute, about 5 percent of all breast cancer cases are metastatic. The amount of funding that metastatic breast cancer receives is not proportional to the number of patients who need treatment.
“It’s like they’ve given up. It’s like, ‘They’re dying, so why should we fund research projects for that,’ ” Cheri says. Looking into her eyes, I have an inkling of what it would mean to have a treatment, at least some sort of chemotherapy that actually worked to combat her cancer and extend her life. For Cheri, living an extra year could mean seeing her son turn four or five or six, or better yet—even older.
Between Cheri and myself, there’s no question of who got the shorter end of the stick. The struggle Cheri faces is far more than anything I have faced, or hopefully will ever face. In a just world, there would be no metastatic breast cancer diagnoses on Christmas or New Year’s or ever.
Still, I have some feeling that we are two sides of the same coin, two different Alices trapped on different sides of the BRCA looking glass. We’re both writers. She’s writing a journal for her son, so that he will be able to get to know her and feel connected to her. It’s hard to write, she says, because she wants to protect him from what she’s going through, to explain her life outside all this, her life as a young woman. “I don’t want it to be about sadness,” she says. And should she write it for the eight-year-old him or the twenty-year-old him?
She is young, like my mother, with a husband and a young child, like my mother had, but they are living the nightmare. We
have the same genetic mutation. I had the family history to warn me. She did not. I am heartbroken that the medical advance that allowed me to reduce my cancer risk could not benefit her, and suddenly, the sacrifice of my breasts doesn’t seem so costly.
After I have written about Cheri like this, and we have e-mailed back and forth about my words, things continue to go badly. In the spring of 2014, less than two years after her diagnosis, she enters hospice care for a few short weeks. But you already know the ending of this story. She was only thirty-five, and will never be any older.
I am lucky. I am lucky to have lots of women in my family, enough to show the clear pattern of breast and ovarian cancer. I also hold many sorts of privilege. I’m a white woman. In the context of BRCA, this has immediate repercussions. African American people are far more likely to receive uncertain results on their genetic tests than any other ethnicity. A full 16.5 percent of African American patients who test for a BRCA mutation receive ambiguous results, according to the National Cancer Institute. Whether this is the result of some fluke of biology—perhaps the mutations in question are unusually rare and therefore harder to study, or perhaps the high rates of cancer in such families are part of the interaction between several genes rather than the result of just one and are thus harder to puzzle out—or institutionalized racism, I cannot say. Dr. Daly suggests it may be a combination. She points out that the number of unknown findings in African Americans has reduced as more of them get tested and more data becomes available. To me, this suggests that access to medicine and to genetic testing may be an issue in getting black families to test and in accomplishing the needed research. I think about how Skolnick did his work on Mormons because they had such excellent genealogical records, and my thoughts jump to the legacy of slavery, which ripped people out of their cultures and dispersed them across the United States. Daly also suspects that there may be some biological differences, on average, to explain why African American women tend to get breast cancer at younger ages than Caucasian women and tend to have more aggressive forms of the disease, including an increased likelihood of developing triple-negative breast cancer—perhaps the mutations in this population are simply more rare and less frequent, rendering them harder to study. Whatever the cause, my whiteness made it more likely that the genetic mutation I carry would be identified.
I’m also middle class. I had health insurance, which many Americans in 2010—the year of my mastectomy—did not. I could afford to test and to have surgery, aided by my parents, who are well-off enough to have helped with some of the co-pay, a fraction of the $20,000 or so my mastectomy and reconstruction cost my insurance provider. Wealth can’t buy you love or happiness, but it sure can make a sucky experience a million times easier and more comfortable. I didn’t have to sell my house, as one BRCA carrier I spoke with did, to afford surgery I saw as essential to my health and well-being. I also had the time and money to shop around and find surgeons I truly trusted, which may have given me access to a higher level of healthcare than the average patient.
I was born female and identify as a woman, which has colored my interactions with the medical system as well. Because I am a cis woman, there is substantial data to guide my decisions as a BRCA patient. In contrast, when I searched the PubMed database of over 22 million scientific papers for the terms “trans man and BRCA” and “trans woman and BRCA” I netted a grand total of two papers, neither of which appeared to examine the unique issues of trans individuals with BRCA, many of whom take hormones that might presumably affect their risk of developing breast and ovarian cancer.
That issues around BRCA deal with body parts associated with femininity—breasts and ovaries—also raises subtler issues around how trans patients interface with the medical system. Would a doctor remember to ask a trans man with a BRCA mutation who has retained his ovaries about cancer surveillance? What about trans women and mammography? At the same time, for such patients to ask their doctors about the body parts associated with BRCA could be a psychologically fraught interaction. I can imagine that a trans man invested in his gender presentation might feel complexly about asking his doctor for an ovarian ultrasound, for example. I don’t pretend I understand the intricacies of seeking medical care as a trans person—or indeed, as anything other than a straight, middle-class white cis woman—but I do understand that the journey of the several trans patients I encountered is different, and probably more difficult, than mine.
Finally, I’m educated, which made navigating the statistics and strange vocabulary around this rare condition much simpler than it would have been otherwise. It may also have enabled doctors to see and respond to my concerns in a different way than they otherwise would have.
I’ve undoubtedly missed a few elements of my privileged existence that have eased the process in ways I haven’t yet considered, and my narrative here is told through the lens of that privilege. The diagnosis and surgery weren’t easy, but my position in the world made them easier. Though for reasons of space and familiarity I have focused on my family’s experience, my story is far from the only BRCA story—but it is the only story that is explicitly mine to tell. Different perspectives—both in the discourse and research around BRCA—would benefit the community of BRCA carriers greatly. I hope, but don’t hold my breath, for a world in which the advantages I enjoy—of having researchers study my condition, of affording and having access to my choice of medical care, and of education that empowered me to seek and understand treatment—are available to everyone.
BRCA continues to affect my family. In the winter of 2013, my cousin Lisa, who had her mastectomy in the early 1980s, finally tested for the family’s mutation for the sake of her daughter and son. Her results came back negative. As she wrote to me, “I am relieved in many ways, mostly because my daughter and son are cleared. However, it is odd because, like you, it’s been such a part of my life forever. In some ways, and this sounds odd but I think you’ll understand, I’m no longer special in that way. No longer part of that girl’s club. The negative result has made me rethink my health, the dynamics of my family of origin, my destiny, and my legacy. I’ve had three surgeries (the original mastectomy and implants, the removal of the implants, the second replacement), which made sense based on all of the information I had at the time. In some ways, one of the reasons I put it off for so long was the fear that I would be negative and had gone through all that for nothing.”
Lisa may not have had the gene, but she shared in the sisterhood of fear. If she had been able to test as a young woman and had tested negative, she wouldn’t have had the surgeries, she tells me. But like all of us, she did her best with the knowledge she had at the time. And now, the specter of the disease that killed her mother, ovarian cancer, no longer hangs over her as it once did. She wrote, “I realize I’m not immune from getting ovarian cancer and that my odds are the same as anyone. But it is good to know my odds are normal. That I’m just normal.”
I, on the other hand, am not normal, and am leaning toward an oophorectomy sometime in my late thirties or early forties, though I dread the procedure and all that comes with it. Until then, I will muddle through the best I can, loving my parents, laughing about robot jokes with George, and perhaps having children with him. The thing about these BRCA issues is that they never go away. My mother still calls from time to time, saying that it hit her hard that day and she had to cry a bit. Sometimes it hits me too—I am amazed to have any tears left to shed over the scope of my family’s ordeal or over my own missing breasts. As my cousin Kathy told me when I worried to her about oophorectomies or feeling whole again after my mastectomy or passing on a BRCA mutation to another generation, “It isn’t there all the time. It fades over time. Because if you think about it, this is the time when it’s the most relevant and intense for you, right now for you in your life.” I like the idea that these emotions will dim, but I don’t want them gone entirely—they’re part of who I am; the rush to beat an early death I saw as inevitable has influenced the core of my id
entity, reminding me not to waste time and to stay busy accomplishing those things I’d regret if I died tomorrow. Perhaps this explains why my mother can’t sit still—there are too many wonderful projects left to embark upon. I intend to take her example to heart.
Although my BRCA mutation has deeply affected my body, my emotions, and my sense of self, it does not define me. I leave that to my writing, to the friendships I have formed, to the leftover stew in my kitchen, or my hoard of homemade pickles, and more than I’d like to admit, perhaps, to my collection of funny hats.
Acknowledgments
I am so grateful to have such a wonderful and supportive extended family on both sides; without their kindness, generosity, and openness, I could never have written this book. Thank you to my parents, Dick and Gretchen, and to my husband, George, for always being there for me, no matter what; to my three Amazonian graces, Cris, Lisa, and Kathy, for their kindness during my surgery and their fortitude in reliving their own experiences for me during interviews; and to my uncles Mark and Alan, my second cousin Ellie, and my grandpa Roy for sharing memories and emotions about the family legacy as well. I’d also like to thank the world’s best in-laws, Cathe and David, for their support. I am indebted to Cheri for opening her story to me at such a difficult time.
I am grateful to the organization FORCE, both to the thirty-odd women and men from that site who shared their stories with me, and to the many forum participants who eased my mind before and after my surgery. Dr. Robert Cook-Deegan, Dr. Mary Daly and NCCN, Dr. Otis Brawley and the American Cancer Society, Sir Mike Stratton, Joy Larsen Haidle, and many other sources gave generously of their time and energy.
Thank you to Vidya Rao, who first published my writing about BRCA at Today.com, and to my agent Jane Dystel for suggesting there might be a book here. Thank you to my editors Cynthia Sherry and Michelle Williams, as well as to Ewurama Ewusi-Mensah, Ellen Hornor, and Mary Kravenas of Chicago Review Press for their work. Thank you to Eleanor Saitta for a transformative phone conversation, and to my father for assisting with legal research around the Supreme Court case and for serving as my first reader. I’m deeply indebted to the Corporation of Yaddo, for providing me space, time, and pleasant companions while I completed a substantial portion of this manuscript. Jerry Williams, John Kelly, and Samuel Freedman provided valuable guidance, and my fellow writers Chip Cheek, Urban Waite, Boomer Pinches, Shannon Ward, Toni Kan, and Tatiana Ryckman kept me going when times got tough.
