Breast Cancer Activists Research Articles

Barriers and opportunities for breast cancer organizations to focus on environmental health and disease prevention: a mixed-methods approach using website analyses, interviews, and focus groups

BackgroundBreast cancer is the most commonly diagnosed cancer among women worldwide and most cases are not due to high risk inherited genes. In response, breast cancer activists successfully advocated for innovative research on environmental chemical exposures as a possible cause. Since then, new evidence supports hypotheses that common industrial and consumer chemicals are linked to the disease, and expert panels recommend reducing exposures. We evaluated whether these research results and recommendations are translated back into the work of breast cancer organizations and what barriers and opportunities influence their ability to focus on environmental factors.MethodsWe used a Python script to evaluate the frequency of environmental terms on the websites of 81 breast cancer organizations (> 14,000 associated URLs) and conducted two focus groups and 20 interviews with leaders of breast cancer organizations. We also analyzed the frequency of terms on two trusted, national cancer websites.Results40% of organizations include information on environmental chemicals on their websites, but references are infrequent and rarely cite specific chemicals of concern. Most organizations (82%) discuss other risk factors such as exercise, diet, family history, or genetics. From interviews and focus groups, we identified four types of barriers to addressing environmental chemicals: 1) time and resource constraints, 2) limited knowledge of the state of the research and lack of access to experts, 3) difficulties with messaging, including concern that cultural and economic factors make it difficult for individuals to reduce their exposures, and 4) institutional obstacles, such as the downplaying of environmental risks by industry interests. Participants expressed the desire for easy-to-adopt educational programs and increased federal funding for scientist-advocate research partnerships.ConclusionOur research underscores the need for environmental breast cancer experts and trusted cancer organizations to increase research translation activities so that breast cancer organizations can communicate new science on environmental factors in their online and in-person work. Moreover, our research highlights how most groups are focusing on providing resources to diagnosed women, including addressing problems with healthcare access, which displaces their ability to work on breast cancer prevention.

Among the Metavivors: Social Media and Illness Narratives of Stage IV Breast Cancer Patients

Dominant breast cancer narratives equate early detection and screening with “cure,” advocate for “awareness,” and identify women who undergo treatment for early stage disease as “survivors.” Left out of these narratives are the “metavivors”: women and men diagnosed with “incurable” metastatic breast cancer, also known as Stage IV. This article uses case studies to profile four women living with metastatic breast cancer who turn to social media to tell their stories: Sally, a former civil rights attorney turned breast cancer activist, who uses social media platforms to organize and mobilize Stage IV patients to advocate on their own behalf; Jane, who plows through databases of dense medical research to find treatments to save her own life; Jenny, a young mother dying of metastatic breast cancer who shares her experiences on a YouTube channel; and Grace, who participates in an early-stage clinical trial that she believes “cured” her, a term eschewed by both the medical establishment and fellow metavivors.

Among the Metavivors: Social Media and Illness Narratives of Stage IV Breast Cancer Patients

Dominant breast cancer narratives equate early detection and screening with “cure,” advocate for “awareness,” and identify women who undergo treatment for early stage disease as “survivors.” Left out of these narratives are the “metavivors”: women and men diagnosed with “incurable” metastatic breast cancer, also known as Stage IV. This article uses case studies to profile four women living with metastatic breast cancer who turn to social media to tell their stories: Sally, a former civil rights attorney turned breast cancer activist, who uses social media platforms to organize and mobilize Stage IV patients to advocate on their own behalf; Jane, who plows through databases of dense medical research to find treatments to save her own life; Jenny, a young mother dying of metastatic breast cancer who shares her experiences on a YouTube channel; and Grace, who participates in an early-stage clinical trial that she believes “cured” her, a term eschewed by both the medical establishment and fellow metavivors.

So Much to Be Done: The Writings Of Breast Cancer Activist Barbara Brenner

Quand, en 1993 a l'âge de 41 ans, Barbara Brenner decouvre qu’elle est atteinte d’un cancer du sein, elle demande a son medecin de quel type de cancer il s'agit. En reponse, elle recoit un paternaliste : « Vous n'avez aucun besoin de savoir ca » (p. 5). A compter de cette premiere rencontre avec le monde medical, Brenner s'engagera a trouver par elle-meme des reponses sur sa condition de femme avec un cancer du sein. Mais elle fera beaucoup plus, elle aidera des milliers de femmes a developpe...

Gender practice as political practice: cancer, culture, and identity

In the early 1990s, breast cancer activists scored major political victories: they formed a powerful new interest group, attracted attention from President Clinton, and secured allies in Congress w...

Bridging differential understanding of environmental risk of breast cancer: Why so hard?

The incidence of breast cancer in the UK continues to increase: the lifetime risk for women is now one in nine. The reasons for this are hotly disputed by scientists (toxicologists, molecular biologists, geneticists, epidemiologists), breast cancer activists, and environmentalists, with a range of theories about breast cancer causation. There is a significant degree of disagreement between these various stakeholders, and a lack of effective dialogue among them. This paper reports on the findings of an innovative project investigating these issues. The study both explored the different standpoints taken up by the various players, and actively intervened to create opportunities for dialogue among them. Thus interviews were arranged with a range of policy makers, scientists, clinicians and health workers, breast cancer activists, environmentalists and others, in order for them to outline their understanding and theories of breast cancer causation. In addition, a series of ‘hearings’ were held where the different stakeholders had an opportunity to listen to each other and air their views, and allowed us to assess whether there could be any possibility of bridging the divide between their viewpoints. Our findings and analysis throw light on the factors that inhibit, and indeed might facilitate, effective communication of divergent ideas. We identify three epistemological positions which we call ‘traditionalist’, ‘dissident traditionalist’ and ‘dissident/challenge’, and conclude by suggesting that an appreciation of the stakeholders’ worldviews in this way, and the underlying ideological premises, provides an important indication as to why debates on breast cancer causation are so vociferous.

Ill Patient, Public Activist: Rose Kushner's Attack on Breast Cancer Chemotherapy

In 1984 the noted breast cancer activist Rose Kushner published a controversial article, "Is Aggressive Adjuvant Chemotherapy the Halsted Radical of the '80s?" In it, she argued that chemotherapy was being used as indiscriminately as the radical mastectomy had been, before she and others had successfully discredited the disfiguring operation. As with all of Kushner's writings, this article raised valid points in an informed and provocative style, but her attack on chemotherapy was more one-sided than was typical. This may have been due to the highly personal nature of the topic: when she was diagnosed with recurrent breast cancer, she had declined chemotherapy in favor of a hormonal agent, tamoxifen. She also developed a close working and financial relationship with the manufacturers of tamoxifen. Although not seen as a problem at the time, Kushner's dual roles as patient and advocate for a particular treatment foreshadowed conflict-of-interest issues that would take center stage in medicine in subsequent decades.

Disease Categories and Disease Kinships: Classification Practices in the U.S. Environmental Breast Cancer Movement

U.S. breast cancer activists have increasingly focused their efforts on addressing environmental causes of the disease. These efforts have included raising public awareness about environmental risks, pushing for scientific research on environmental causes, and promoting more stringent environmental regulations. As part of this work, activists have consistently “classified” breast cancer within broader disease categories that shape how activists conceptualize and carry out their political agendas. In this paper I explore the role that three disease categories—women's health, cancer, and endocrine disruption—have played in the U.S. environmental breast cancer movement. In doing so, I also show how activists' classification practices are simultaneously “disease kinship” practices that are just as integral to the movement's efforts as are the disease categories to which they are bound. By examining the centrality of diseases classification and disease kinship practices to environmental breast cancer activism, my account demonstrates the potential benefits of conducting similar analyses of other health-based social movements.

Gender, embodiment, and disease: Environmental breast cancer activists' challenges to science, the biomedical model, and policy

STEPHEN ZAVESTOSKI, SABRINA McCORMICK ANDPHIL BROWNAs developed and developing societies increasingly alter their naturalenvironments by introducing chemical and other industrial by-prod-ucts, disease-based social movements aiming to link various diseasesto environmental causes are becoming more common. The burdenof scientific proof, among other factors, poses a significant challengeto these movements. We illustrate how gender identity serves both toconstrain and enable activists in the environmental breast cancermovement (EBCM). We highlight how the EBCM’s attempt toemphasize possible environmental causes of breast cancer forces themovement to challenge the medical and popular explanations ofbreast cancer—what we call the dominant epidemiologicalparadigm—that point to personal lifestyle and genetics. The conceptof the dominant epidemiological paradigm provides an analyticalframework for exploring how gender concerns are central to environ-mental breast cancer activists’ efforts to link breast cancer to en-vironmental causes. It also provides a framework to see how genderdiscrimination gets institutionalized, and how activists respond tothat institutionalized discrimination by employing tactics that oftencentre on gender-based issues.The dominant epidemiological paradigm of breast cancer, whichis largely supported by the mainstream breast cancer movement,focuses on individual-level approaches to stopping breast cancer.

Framing as a cultural resource in health social movements: funding activism and the breast cancer movement in the US 1990-1993.

Disease-specific funding activism in the US has required health social movements (HSMs) to draw on both structural and cultural resources in order to persuade audiences and to redefine dominant conceptions of disease. Using a social constructionist analysis of Congressional testimony and media accounts of breast cancer funding activism between 1990-1993, this paper demonstrates that the use of culturally resonant frames served as an important cultural resource for breast cancer activists in the early 1990s. The breast cancer movement's use of three interconnected and culturally resonant frames aided the movement in redefining breast cancer as a problem of individual women to a major public health problem in need of governmental attention. This research contributes to both social movement and HSM scholarship by demonstrating that cultural resources, in the form of movement frames, are as central to social movement analysis as structural resources.

Engaging the experts: Popular science education and breast cancer activism

In the early 1990s, breast cancer activists in the United States challenged the scientific establishment to include lay activists in the inner circles of science policy making. Within a few years, activists' demands extended beyond policy to inclusion in the everyday practices of science, that is, in the formulation of research questions, the design of scientific studies and the review of scientific grant proposals. While some activists refer to themselves as consumers, their participation in the practices of science has taken them beyond the narrow framework of consumption and cast them as producers, rather than simply consumers, of scientific knowledge. This paper describes a science education program organized by breast cancer activists to prepare them for involvement in the scientific arena. The specific goals of this educational program are to teach basic concepts of biology and epidemiology and critical appraisal of scientific literature and research studies, as well as to examine the institutional practices of science. By simultaneously engaging with the content and the politics of science in Project LEAD, breast cancer activists acquire tools that allow them not only to influence science policy but to evaluate the truth claims of science. In the process, they take a more active and direct role in determining the nature of knowledge produced about breast cancer.

Development and implementation of a science training course for breast cancer activists: Project LEAD (leadership, education and advocacy development).

To develop and implement Project LEAD (leadership, education, and advocacy development), a science course for breast cancer activists. Students were breast cancer activists and other consumers, mainly affiliated with advocacy organizations in the United States of America. Project LEAD is offered by the National Breast Cancer Coalition; the course takes place over 5 days and is offered 4 times a year, in various cities in the United States of America. The Project LEAD curriculum has developed over 5 years to include lectures, problem-based study groups, case studies, interactive critical appraisal sessions, a seminar by an 'expert' scientist, role play, and homework components. A core faculty has been valuable for evaluating and revising the course and has proved necessary to provide consistent high quality teaching. Course evaluations indicated that students gained critical appraisal skills, enhanced their knowledge and developed confidence in selected areas of basic science and epidemiology. Project LEAD comprises a unique curriculum for training breast cancer activists in science and critical appraisal. Course evaluations indicate that students gain confidence and skills from the course.

No shrinking violet: Rose Kushner and the rise of American breast cancer activism.

When 45-year-old Maryland journalist Rose Kushner felt an “elevation” in her left breast in 1974, she immediately began to research the topic of breast cancer. What most surprised her was that physicians continued to use a dramatic operation, the radical mastectomy, to treat most cases of the disease. Even worse, Kushner believed, was the routine use of the “1-step” procedure in which surgeons, having obtained a biopsy specimen mid-operation that proved positive for cancer, then performed immediate radical breast removal on the anesthetized woman. By 1975, 1 year after being diagnosed, Kushner had become America's most prominent breast cancer activist. Modern breast cancer organizations have achieved remarkable success in publicizing the disease and raising funds. Revisiting Kushner's history illuminates the choices these groups have made and underscores the ongoing challenges they face.

The House of Sky: Landscapes of a Western Mind , and: The Way of a Boy: A Memoir of Java (review)

Book Reviews267 Living on the Margins: Women Writers on Breast Cancer, edited by Hilda Raz. Persea Books, NewYork, 1999. 285 pages, $25.95. Poets and writers often use their own Uves as source material, but not always in personal terms. So when LuciUe Clifton, MarUyn Hacker, Maxine Kumin, AUcia Ostriker, and fourteen other exciting writers ofpoetry, fiction, journaUsm, and scholarship teU readers what reaUy happened to them when they had breast cancer, it is an event worth noting. The book includes poems, personal essays, shaped journals, and interviews in a satisfying mix of lyricism , humor, information, and self-revelation. CoUectively, these voices offer an alternative to fear—whether it's LuciUe CUfton's poetry asking, "what is the splendor of one breast/on one woman?"; Maxine Kumin relating her struggles with a doctor intent on usurping her decisions; Annette WiUiams Jaffee's brave efforts to break the cycle of genetic legacy that caused her to lose her mother and aunts so young: "My mother was dying in the front bedroom but I was on the porch eating those tart green grapes"; Alicia Ostriker's "Scenes from a Mastectomy," which depicts a marriage handfing a mastectomy ; Mimi Schwartz's misadventures at a "Reach for Recovery" conference ; Pamela Post's empathy to rock in the middle of the night with the woman in the next hospital bed, feeUng her pain "as much as the surgeon's knife"—and many more. Not aU the explorations are personal, though. There is an informative interview with Dr. Susan Love, the breast cancer activist, andJudith HaU s piece on Fanny Burney's mastectomy without anesthesia in 1811. The book's title, says editor Hilda Raz, refers to clean margins that those with cancer hope for, indicating no cancer spread. But life is on the margins , and the question is, how weU do we manage this? Very well—is the inspiring message ofthese women writers who ffll in, as Raz says, the "margin of missing literature [that] surrounds breast cancer." Elizabeth Templeman With my memory for detail ever more unreliable, and my love of fine prose fairly constant, I believe I could spend the rest of my Ufe rereading selections from a dozen or so favorite books. Among them are two comingof -age memoirs which, despite their differing circumstances, evoke, for me, a famiUar sweetness and terror, a secret longing and secret pain. 268Fourth Genre The House of Sky: Landscapes of a Western Mind by Ivan Doig. HarcourtBrace , 1987. 314 pages, paperback $13.00. In the 1960s Doig saw the lifestyle ofhis family—herding sheep over the hardscrabble plains of Montana—disappearing. So he set out to capture its haunting landscapes and its bold, hard-living, and utterly memorable cast of characters. This is oral history, taken down with respectful precision. It aims to preserve a richly inventive language of cussing and the ingenuity, crushing work, and high stakes ofthe transient life. Its cadence is as quirky as the language is powerful. One section on lambing includes multiple-page paragraphs : lambing was work without respite. In one ofa chain ofblessings, the chüd ofirregular schooling discovered a stash of abandoned magazines, material to feed his imagination and budding love of words: I read right through whatever shone dark on the snowfield pages ... as an Eskimo who had never before seen a movie might watch the newsreel and then the cartoon and then the feature film without ever knowing to separate them in his mind, simply letting himself be taken with the habited flow of flashing images. . . . His mother died when he was six and Doig describes how he reached back "along my father's teUings" to find her "in the oldest shadows" but the book is finaUy a tribute to his father, Charles Doig, and the maternal grandmother , Bessie Ringer, who formed an uneasy aUiance for the raising ofthe boy. The Way of a Boy: A Memoir ofJava by Ernest HiUen. Penguin, 1995. 314 pages, paperback, $10.70 (throughAmazon.com). In this, the first of two memoirs, HiUen teUs about the Japanese imprisonment ofDutch and EngUsh famflies Uving in Indonesia. The story is one ofthose ripples ofhistory that to my limited knowledge isn't much remembered . I...

Surviving Crisis: Twenty Prominent Authors Write about Events That Shaped Their Lives , and: Living on the Margins: Women Writers on Breast Cancer (review)

266Fourth Genre descended from us perhaps would know stories about us . . . and then the stories would fade." In writing Family, Frazier preserves, as does Epstein, the intimate famüy history enfolded in national history. Joyce Greenberg Lott When my husband lay on the operating table at Sloan Kettering, I sat in the waiting room reading Surviving Crisis. I needed to read these stories, far more than the self-help books that weU-meaning friends had given me or the magazines that others were thumbing through. I had the same feeling several months later, reading Living on the Margins: Women Writers on Breast Cancer. I recommend both ofthese essay coUections for getting through bad times with dignity, insight, and wit. The first is also exceUent for students; the second, for anyone struggUng with breast cancer. Surviving Crisis: Twenty Prominent Authors Write about Events That Shaped Their Lives, edited by Lee Gutkind. Jeremy P. Tarcher/Putnam, 1997. 238 pages, paperback, $15.95. In this coUection, twenty prominent authors—including Annie Dülard, John McPhee, Richard Rodriguez, andJohnWideman—write about crises that shaped their lives. Some are less catastrophic than others—at least to the reader. For example, Carol Kloss in "Fat" writes about drawing fat people at the maU and sucking "heavy, sweet, dark sauce from chopped-up bones in the food court. . . ." Some treat catastrophe with humor, such as Majorie Gross, who, in "Cancer Becomes Me," uses it to resist feeUng like a victim: "The other side effect (of uterine cancer) is that I've lost twenty pounds, which has sent my women friends into spasms ofjealousy." Editor Lee Gutkind introduces each essay with a few words about the author and some comment on craft, which enhance each story. Although the topics seem depressing— stories about suicide attempts, self-mutilation, juvenfle court, abandonment, date rape—the reader feels strangely upUfted. Maybe it is the courage of these writers; or maybe it is the opportunity to see life in aU its glory—what might be caUed its ugUness left uncovered, and so easier to live with. Book Reviews267 Living on the Margins: Women Writers on Breast Cancer, edited by Hilda Raz. Persea Books, NewYork, 1999. 285 pages, $25.95. Poets and writers often use their own Uves as source material, but not always in personal terms. So when LuciUe Clifton, MarUyn Hacker, Maxine Kumin, AUcia Ostriker, and fourteen other exciting writers ofpoetry, fiction, journaUsm, and scholarship teU readers what reaUy happened to them when they had breast cancer, it is an event worth noting. The book includes poems, personal essays, shaped journals, and interviews in a satisfying mix of lyricism , humor, information, and self-revelation. CoUectively, these voices offer an alternative to fear—whether it's LuciUe CUfton's poetry asking, "what is the splendor of one breast/on one woman?"; Maxine Kumin relating her struggles with a doctor intent on usurping her decisions; Annette WiUiams Jaffee's brave efforts to break the cycle of genetic legacy that caused her to lose her mother and aunts so young: "My mother was dying in the front bedroom but I was on the porch eating those tart green grapes"; Alicia Ostriker's "Scenes from a Mastectomy," which depicts a marriage handfing a mastectomy ; Mimi Schwartz's misadventures at a "Reach for Recovery" conference ; Pamela Post's empathy to rock in the middle of the night with the woman in the next hospital bed, feeUng her pain "as much as the surgeon's knife"—and many more. Not aU the explorations are personal, though. There is an informative interview with Dr. Susan Love, the breast cancer activist, andJudith HaU s piece on Fanny Burney's mastectomy without anesthesia in 1811. The book's title, says editor Hilda Raz, refers to clean margins that those with cancer hope for, indicating no cancer spread. But life is on the margins , and the question is, how weU do we manage this? Very well—is the inspiring message ofthese women writers who ffll in, as Raz says, the "margin of missing literature [that] surrounds breast cancer." Elizabeth Templeman With my memory for detail ever more unreliable, and my love of fine prose fairly constant, I believe I could spend...

Reading and Reforming Breast Self-Examination Discourse: Claiming Missed Opportunities for Empowerment

For close to 45 years breast self - examination (BSE) has had nearly uncontested support as depicted in mass media accounts . Just recently , however , a number of breast cancer activists have spoken out against the practice . They claim that BSE is oppressive and fosters victim blaming , which simply is not in the best interests of women . Judging by the media reports I reviewed , these activists may have a valid point . The discourse of the popular media articles that constitutes the issue of BSE for the average woman blames women for not doing their part to reduce high breast cancer mortality statistics , establishes the locus of all reasons for refraining from the activity with the woman , and chastises these women for failing to engage in the activity . Moreover , in addition to being an agency - robbing discourse , these media reports provide minimal (if any) substantive rationale that there is any benefit to BSE . It appears , then , that women are subjected to an agency - robbing discourse and , as it is currently enacted , practice for what appears to be little reason . However , this does not mean that BSE is an inefficacious means of early detection or that women cannot be empowered by participating in the discursive process and the physical act itself . Rather , in the discussion of this essay I provide a number of suggestions for reforming BSE rhetoric such that it facilitates a more therapeutic and individually empowering self - help activity .

Working from the inside out: Implications of breast cancer activism for biomedical policies and practices

Much has been written about women with breast cancer: about women's lifestyles and reproductive strategies as possible risk factors for the disease, factors which impede or facilitate women's participation in mammography screening, ways to involve women in treatment decision-making, and women's ability to cope with breast cancer diagnoses. Seldom do these accounts examine breast cancer from the perspective of women with the disease. This essay presents material from an ethnographic study in the United States to explore the ways that women have come forward as informed consumers and activists working to make biomedical practices more responsive to the needs of women with breast cancer. Insofar as breast cancer activists reflect the concerns of a predominantly white, middle class constituency, however, additional questions are raised concerning their constructions of breast cancer and the problematics of treatment.