Health Communication

ISSN: 1041-0236 (Print) 1532-7027 (Online) Journal homepage: http://www.tandfonline.com/loi/hhth20

What We (Don’t) Talk About When We Talk About Breasts Anne Gerbensky-Kerber To cite this article: Anne Gerbensky-Kerber (2015) What We (Don’t) Talk About When We Talk About Breasts, Health Communication, 30:6, 624-626, DOI: 10.1080/10410236.2014.914122 To link to this article: http://dx.doi.org/10.1080/10410236.2014.914122

Published online: 25 Sep 2014.

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Date: 07 November 2015, At: 14:47

Health Communication, 30: 624–626, 2015 Copyright © Taylor & Francis Group, LLC ISSN: 1041-0236 print / 1532-7027 online DOI: 10.1080/10410236.2014.914122

DEFINING MOMENTS

What We (Don’t) Talk About When We Talk About Breasts

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Anne Gerbensky-Kerber Department of Speech Communication, Foreign Languages, Theatre, and Music University of Wisconsin–Stout

Like nearly everyone else, I was stunned to read Angelina Jolie’s New York Times editorial chronicling her decision to have a double prophylactic mastectomy. Jolie’s announcement—and the ensuing public conversation about medical risks, BRCA testing, and the sense-making surrounding women’s choices regarding their bodies and health—piqued my scholarly interests. However, Jolie’s admission stopped me in my tracks for a different, more personal reason: It was published a few days prior to my own surgical consultation for a breast lump. Just a week earlier, I was zipping up my jacket when an electrical charge of pain radiated from where my hand had brushed across the right side of my chest. “That’s really weird.” I probed the ache, wondering if I had somehow pulled my pectoral muscle or bruised my shoulder. My hands froze a second later. The pain’s source was a marble-sized mass, an abnormally dense lump compared to the surrounding tissue. My body—which seemed so absent and yet so consequential to my daily routines—was pulling me sharply into the present, forcing me to consider a suddenly uncertain future. Immediately, the “Big C” loomed large in my imagination: Was this my entrée into what Barbara Ehrenreich (2001) termed “Cancerland,” or the cult(ure) of pink ribbons, femininity, and survivorhood pervading the breast cancer experience? Cancer would be a game-changer, an unexpected and unwanted journey. My spouse and I had recently moved into a new home and jobs close to our families. Cancer would not only unsettle our current situation, it promised to disrupt our future. What did this mean for my life—my health, my spouse and our shared dreams, my family and friends, my job?

Correspondence should be addressed to Anne Gerbensky-Kerber, Assistant Professor, Department of Speech Communication, Foreign Languages, Theatre, and Music, University of Wisconsin–Stout, 209 Tainter Hall, Menomonie, WI 54751. E-mail: [email protected]

I was reminded of Leder’s (1990) observation that pain reorients us to our lives and relationships as I began to consider the lump’s various possible meanings. Seeking immediate answers, I conducted a cursory Internet search, hoping what I found would assuage my fears. Although some websites reassured me painful lumps rarely indicated breast cancer, others noted it could be a sign of a rare, aggressive malignancy. Rather than alleviating uncertainty, the contradictory information only increased the lump’s ambiguity. As a scholar who is interested in public conversations about health, I knew my fear about the lump was profoundly shaped by the prominence of breast cancer narratives in discourse about women’s health. Thanks to successful awareness and fundraising campaigns by groups, such as the Susan G. Komen Foundation, breast cancer has been transformed from a stigmatized, isolating condition to the most visible women’s disease in American culture (Ehrenreich, 2001; King, 2006). Although the condition impacts fewer women than heart disease or lung cancer (U.S. Department of Health & Human Services, 2013), the persistent threat of breast cancer has become what Lyotard (1984) described as a “master narrative.” In other words, breast cancer narratives have gained enough traction in the past 30 years to shift the paradigms of how we understand, talk about, treat, and create policy around women’s health. The story of “the breast with cancer” (or even the “risky” breast that women like Jolie choose to remove to prevent cancer) is particularly threatening because it disrupts narratives surrounding the aesthetic and maternal breasts—important cultural symbols of femininity and motherhood (Dubriwny, 2013). As I searched the Internet for answers, I realized our scholarly conversations in health communication reflect this master narrative as well: My scan of the communication research databases revealed more than 400 journal articles addressing some facet of breast cancer. Even more illuminating was that the next most addressed aspect of breast health, breast-feeding, turned up just 51 articles.

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DEFINING MOMENTS

Scholars have critiqued the dominant discursive formations surrounding breast cancer, primarily for the ways the illness experience is gendered, raced, and classed (see, e.g., Dubriwny, 2013; Ehrenreich, 2001; King, 2006). However, my experience sparked a different set of questions about how the breast cancer master narrative shapes our embodied understanding of breast health. For instance, why don’t we talk about the fact that 80% of breast lumps are benign? How was it I had never even heard about the other causes of breast lumps, which can range from infections like mastitis to other easily treatable issues, such as cysts and fibroadenomas (American Cancer Society, 2012)? The stories we tell about health direct our attention to various aspects of our bodies (Frank, 2006). I argue that the breast cancer master narrative has created what Burke (1984) referred to as a trained incapacity, obscuring attention from other important concerns about breast health. To be clear, I am not arguing breast cancer isn’t important. It is a terrifying disease, as I have witnessed from the stories of others (including public narratives, as well as the experiences of friends and extended family members). I am suggesting breast cancer dominates and precludes other stories about breast health from being told. The foregrounding of breast cancer at the expense of other breast health issues has important personal and social implications. At the personal level, the lack of dialogue about other causes of breast lumps makes it challenging for women to seek information and social support when they experience these concerns. In my case, the hypervisibility of breast cancer saturated conversations with my family and friends about my lump to the point where I stopped disclosing the discovery. People immediately feared the worst possible outcome, and I felt I was needlessly scaring my loved ones by talking about it until I was sure it wasn’t something to worry about. It also was difficult for me to locate women who had been through this kind of experience before. For example, I called my mother to see whether any female relatives had a history of breast cysts. She acknowledged it was possible, but it wasn’t a legacy our family had discussed. “I mean, breast lumps are just not something we talk about.” She then shifted our conversation to the subject of my maternal aunt who had, sadly, succumbed to breast cancer just a few weeks before her 51st birthday. “Don’t freak out, Mom,” I insisted, “I didn’t mean to scare you—I’m sure this is fine, it’s nothing.” I could hear the fear and wavering in her reply. “I’m sure it isn’t either. But, you need to call me as soon as you as your appointment is over.” Moreover, my experience shed light on how little I actually knew about what was (un)natural about this part of my body. I shamefully admit I rarely performed regular self-examinations, which meant I had no idea whether the mass was simply normal, lumpy tissue or something more sinister. My efforts to seek answers proved to be equally frustrating. Immediately after discovering the lump, I made a doctor’s appointment. The only practitioner who could see

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me right away was a female physician I had never met. “So, you’re breastfeeding?” she asked as she strode briskly into the examination room. “No . . . No kids,” I could barely stammer out the words. On the inside, I screamed, “Are you kidding me?! Did you even read my chart?” She had the grace to pause for a moment. “You must work out. Are your sports bras in good shape? No? Go get new ones. Look for ones guaranteed to give you support for highimpact workouts.” Stunned into a stony silence, I endured her brief clinical examination. “I don’t think this is cancer,” she said matter-of-factly, “but it could be. You’ll need to get scheduled for an appointment with our surgeon right away.” The encounter left me shaking with anger. Finding something (potentially) wrong with one’s body is already an emotional experience. Even if we don’t talk about breast lumps, shouldn’t we be able to expect empathy and answers from knowledgeable experts like our health care providers? My conversation with the doctor left me feeling more vulnerable and uncertain than I was before the appointment. Ironically, the breast cancer master narrative portrays knowledge as a form of empowerment. The discourses surrounding BRCA testing, mammography and other screenings, and avoiding lifestyle risks position women as being in control of their health as long as they make appropriate choices for prevention and care (Dubriwny, 2013). Yet if knowledge is as empowering as the breast cancer master narrative suggests, why aren’t women learning what is (not) normal about their bodies? One potential reason why we don’t talk about other breast health issues is because how well women should know their bodies remains the subject of significant debate within the medical community. The value of self-knowledge is positioned in tension with social concerns about the potential impacts on health care usage and spending. Medical discourses argue that early breast cancer detection messages have led to exaggerated fears, overly broad screening guidelines, and extreme or unnecessary treatments with mixed impacts on health outcomes (Ehrenreich, 2001; Orenstein, 2013). Even the monthly self-examinations once championed during the 1980s and 1990s are no longer endorsed: In 2009, the U.S. Preventive Services Task Force (USPSTF) recommending against teaching breast self-examinations (BSE), arguing the potential harms outweighed its benefits for cancer detection (USPSTF, 2009). The National Breast Cancer Coalition has similarly discontinued promoting BSE, arguing the practice causes needless anxiety and makes women “fearful about every lump that they find” (2011, p. 1). I understand the need for evidence-based public health interventions and share the organizations’ concerns about women’s (potentially problematic) perceptions of risk, particularly when it comes to breast cancer. Yet it seems more plausible that the “fear of every lump” mentality has been fostered more by the master narrative of breast cancer than

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the promotion of self-examination. Rather than discontinuing practices helping women to know our own bodies, wouldn’t it be beneficial to reassure women that not every lump is cancer, to know there are other explanations (not to mention treatments) for such masses? Being aware of other possibilities could help to lessen the fear of encouraging women to actually know their bodies. Furthermore, teaching women about what deviations are (not) components of our bodies’ natural routines could help us to better understand when we should seek help and when we simply need to monitor for other changes. Telling the silenced stories of breast health could also help patients and health professionals make more effective use of our health care resources. For example, many women are unaware they now have choices for how breast health issues can be diagnosed. Traditionally, breast lumps have been identified by mammography and surgically removed for analysis. Less painful and invasive diagnostics, including ultrasounds and needle biopsies, are now available. In my own research, I was surprised to learn the usage of less invasive technologies is far from universal. For instance, the rate of surgical interventions being performed in comparison to needle biopsies remains a source of contention within the medical establishment (see Levin, Parker, Schwartz, & Rao, 2012). Although ultrasounds and magnetic resonance imaging (MRI) are significantly more effective than mammography for diagnosing women with dense breast tissue, the American College of Radiology maintains the evidence is insufficient to recommend routine screening with these technologies (Beck, 2012). If we don’t talk about breast health issues other than cancer, how are we to know the options available to us or the questions we should be asking to ensure we receive the best kind of care? The surgeon to whom I was referred did conduct his screenings via ultrasound. However, this was not something I knew before my experience, and I could have just as easily had a different kind of procedure performed because of my lack of awareness. Just four days after Jolie’s editorial was published, I sat frozen in an examination chair while a surgeon closely studied my lump’s image in an ultrasound monitor. I stared intently at the ceiling, concentrating on a decorative panel colorfully displaying a scene from the interior of a fishbowl as I waited for the words to come. I was certain those words would tell me I had nothing to be afraid of. Yet a nagging fear reminded me I might also hear words telling me my world was about to change. Suddenly, he looked up at me, “It appears we have a cyst.” Relief immediately flooded my body. In just a few minutes, the surgeon drained the cyst with a needle and I was free to leave.

I am fortunate to not have cancer at this point in my life. Yet questions about my experience still linger. Does having had a breast lump seem more significant than it should have because dominant narratives guide us to see lumps as harbingers of breast cancer? The breast cancer master narrative only helps us to understand one potential outcome, an illness that (thanks to successful awareness campaigns) creates anxiety in many people. Would knowing about other possible explanations have lessened my fear? I share my story not because I am seeking pity, but because I hope to create more space for narratives like mine—narratives seeking to simultaneously demystify and increase dialogue about women’s bodies and health concerns.

REFERENCES American Cancer Society. (2012). Non-cancerous breast conditions. Retrieved from http://www.cancer.org/acs/groups/cid/documents/ webcontent/003180-pdf.pdf Beck, M. (2012, August 6). The latest mammogram controversy: Density. The Wall Street Journal, n.p. Retrieved from http://online.wsj.com/article/ SB10000872396390444246904577573181463638846.html Burke, K. (1984). Permanence and change (3rd ed.). Berkeley, CA: University of California Press. Dubriwny, T. N. (2013). The vulnerable empowered woman: Feminism, postfeminism and women’s health. New Brunswick, NJ: Rutgers University Press. Ehrenreich, B. (2001, November). Welcome to Cancerland. Harper’s Magazine, n.p. Retrieved from http://www.barbaraehrenreich.com/ cancerland.htm Frank, A. W. (2006). Heath stories as connectors and subjectifiers. Health: An Interdisciplinary Journal for the Social Study of Health, Illness and Medicine, 10, 421–440. doi:10.1177/1363459306067312 King, S. (2006). Pink ribbons, Inc.: Breast cancer and the politics of philanthropy. Minneapolis, MN: University of Minnesota Press. Leder, D. (1990). The absent body. Chicago, IL: University of Chicago Press. Levin, D. C., Parker, L., Schwartz, G.F., & Rao, V.M. (2012). Percutaneous needle vs. surgical breast biopsy: Previous allegations of overuse of surgery are in error. Journal of the American College of Radiology, 9, 137–140. doi:10.1016/j.jacr.2011.10.002 Lyotard, J. (1984). The postmodern condition. Minneapolis, MN: University of Minnesota Press. National Breast Cancer Coalition. (2011). Breast self-exam: Position statement. Retrieved from http://www.breastcancerdeadline2020.org/assets/ pdfs/bse-position.pdf Orenstein, P. (2013, April 28). The problem with pink. The New York Times, p. 36. U.S. Department of Health & Human Services. (2013). Women’s Health USA 2012. Rockville, MD: U.S. Department of Health and Human Services. Retrieved from http://www.mchb.hrsa.gov/whusa12 U.S. Preventive Services Task Force. (2009). Screening for breast cancer: Recommendation statement. AHRQ publication no. 10-05142-EF-2. Retrieved from http://www.uspreventiveservicestaskforce.org/uspstf09/ breastcancer/brcanrs.htm

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