Download Moving Breast Cancer From Settled to Contested: Transformations

Moving Breast Cancer From Settled to Contested:
Transformations in Disease Regimes, 1970-1990
Maren Klawiter
[email protected]
History, Technology and Society
Georgia Institute of Technology
Atlanta, GA 30307
United States
This paper introduces the concept of disease regime and uses it to tell a different story
about the U.S. breast cancer movement that shifts attention away from the standard
concepts and categories of social movements theory to the discourses and practices of
public health and medicine that created the preconditions for the development of the
breast cancer movement. In this paper I argue that it was a series of changes in the
regime of breast cancer, which occurred between 1970 and 1990, that transformed the
primary subjects of the disease regime from a relatively small number of temporarily sick
and symptomatic women into a vast and permanent population of risky subjects who
occupied shifting positions on a breast cancer continuum. This transformation in the
public administration and medical management of disease created the solidarities, social
networks, sensibilities, and subjectivities that fed the development of the breast cancer
movement.
1
At the tail end of the 1980s and the early 1990s new forms of cancer organizing,
activism, and community-building mushroomed across the United States. Over the
course of the next few years a wide range of advocacy organizations, community centers,
educational campaigns, public demonstrations, cultural events, political coalitions, and
mass-participation fundraisers arose that challenged the regime of practices through
which breast cancer had been discursively represented, scientifically investigated,
publicly administered, medically managed, and subjectively experienced. Breast cancer
thus joined a growing number of disease syndromes and health conditions that Phil
Brown has referred to as “contested illnesses.” Unlike many contested illnesses,
however, whose sufferers struggled for legitimacy and recognition—that is, for
incorporation into the discourses, practices, and policies of medicine—breast cancer was
a “routinely diagnosed condition” (Brown, 1995) long before it became the linchpin of
one of the most popular social movements of the last quarter century.
How, this paper asks, did this thoroughly medicalized disease move from settled to
contested and inspire a mass-participation social movement? Both aspects of this
question require attention. First, in the words of Patricia Kaufert: “What impelled
women with breast cancer to break out of their isolation and assemble under the banner
of a new social movement?” (Kaufert, 1998) Second, and equally important: Why did
this movement resonate with so many healthy, cancer-free women?
There are two obvious places to look for guidance in answering this question. The
first is social movements theory; the second is medical sociology. So far, analyses of the
breast cancer movement have drawn heavily on the concepts and ideas of social
movements theory, and this growing body of scholarship has contributed a great deal to
our understanding of the breast cancer movement (Anglin, 1997; Blackstone, 2004;
Boehmer, 2000; Brenner, 2000; Cartwright, 2000; Casamayou, 2001; Kaufert, 1998;
King, 2001; Klawiter, 1999a, 2002, 2003; Kolker, 2004; McCormick, Brown, &
Zavestoski, 2003; Taylor & Van Willigen, 1996; Weisman, 2000; Zavestoski, MorelloFrosch et al., 2004). At the same time, this body of scholarship has failed to challenge a
problematic claim that has guided research in the field of social movements for the last
thirty years.
This claim, which I think of as the modernist assumption, maintains that the
structural forces shaping, enabling, and inhibiting the formation of social movements are
located in two places: the nation-state and the political economy. 1 The failure to
challenge this assumption means that some of the most important institutions shaping the
experiences and identities of postmodern subjects—science, public health, and
1
Two main schools of thought have guided structuralist approaches to the study of
social movements: political process theory and new social movements theory. Political
process theory draws attention to the role of the State in shaping social movements,
focusing on political structures, processes, and opportunities. New social movements
theory highlights the role of global capitalism in shaping new sources of conflict and
collective identity. For a small sampling of influential contributions to each tradition, see
(Larana, Johnston, & Gusfield, 1994; McAdam, 1982; McAdam, McCarthy, & Zald,
1996; Melucci, 1980, 1985, 1988, 1989). For recent critiques of political process theory,
see (Goodwin & Jasper, 2004; Van Dyke, Soule, & Taylor, 2004).
2
medicine—are simply off the map of social movements theory (but see Klawiter, 2000).
This is unfortunate because, although these institutions are certainly entangled with the
nation-state and the political economy, a focus on the latter is no substitute for an
examination of the former.
There are two additional reasons for the wholesale neglect of medicine in this body
of scholarship. First, medicalization studies and feminist studies of medicine have has
developed a rich literature and theoretical tradition exploring the ways in which the
institution of medicine has functioned as an instrument of social control and domination
of women, poor people, gays and lesbians, psychiatric patients, and racial minorities (see
recent reviews of this literature by Clarke, Shim et al., 2003; Conrad, 2005), it has been
much less attentive to the ways in which the discourses and practices of public health and
medicine can facilitate the development of social movements. On the flip side, medicine,
it is clear, is often the target of mobilization, and the scholarship in medical sociology
also includes many examples of groups seeking access to medical resources and
legitimacy (see for example Barker, 2002; Taylor, 1996). What I have in mind, however,
is something quite different. I want to examine the conditions under which medicine is
able to act as an enabler, or facilitator, of disease-based social movements.
Second, as anyone familiar with the U.S. breast cancer movement knows, one of its
key mobilizing frames—which achieved phenomenal success in legislative and
policymaking arenas—was that the medical treatment of breast cancer stagnated for
decades because breast cancer, as a women’s disease, had been overlooked by male
politicians and marginalized by the male-dominated research establishment. Scholars of
the breast cancer movement, by and large, seem to have accepted the veracity of this
mobilizing frame. Patrician Kaufert, for example, argued that, since “there [was] no
evidence of change in the cancer clinic,” the changes that facilitated the breast cancer
movement must have developed outside the cancer clinic. No one besides Kaufert even
raised the possibility that changes in medicine might have contributed to the development
of the breast cancer movement.
This paper offers an account of the U.S. breast cancer movement that shifts attention
away from the standard concepts and categories of social movements theory to the
discourses and practices of public health and medicine. It does so not in order to
substitute one incomplete account for another, but to complement existing scholarship by
extending the analysis back into the black box of medicine. Social movements theory has
for far too long ignored the institutions of science, public, health and medicine by
focusing its attention on an excessively narrow set of structural variables. Meanwhile
medical sociology, for its part, has paid a great deal of attention to processes of
medicalization, but has not paid attention to the ways in which these processes can both
inhibit and enable the development of social movements.
In the sections that follow, I introduce the concept of disease regime and use it to tell
a different story about the medical discourses and practices that created the preconditions
for the development of the breast cancer movement. I argue that it was a series of
changes in the regime of breast cancer between 1970 and 1990 that transformed the
primary subjects of the regime from a relatively small number of temporarily sick and
symptomatic women into a vast and permanent population of risky subjects who
occupied shifting positions on a breast cancer continuum. This transformation in the
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public adminstration and medical management of disease created new solidarities, social
networks, sensibilities, and embodied subjectivities which, in turn, facilitated the
development and fed the success of the breast cancer movement.
Before turning to the analysis, a brief word about methods is in order. The concept
of disease regimes that I develop in this paper emerged from four years of ethnographic
research on women’s cancer support groups that I conducted in the San Francisco Bay
Area, as part of a larger ethnographic study of breast cancer activism (Klawiter, 1999b).
Between 1994 and 1998 I observed four different cancer support groups in four different
institutional settings for periods of time ranging from two months to more than two years:
a private hospital (2 months), a public hospital (2+ years), an independent feminist cancer
center (2+ years), and an independent cancer support community (2 months). These
groups differed along a number of dimensions, and they maintained different
relationships to the breast cancer movement, but in every case, the stories shared by the
support group participants, and the bulk of conversation, revolved around the nitty-gritty
details and deeply embodied experiences of treatment. These stories, in combination
with the historical research I conducted, led me to the realization that, although no new
treatment technologies had been invented in the last twenty years, the embodied
experiences of disease had undergone a number of important changes. Although they do
not appear in the historical narrative of this paper, it was the stories shared by support
group participants that led me to rethink some of the guiding assumptions of social
movements theory and address an important gap in medicalization theory.
Disease Regimes
Although it was inspired by my observation of women’s cancer support groups, the
concept of disease regimes draws heavily on Michel Foucault’s theorization of modern
power and his approach to studying its operation. In the 1960s and 1970s Foucault
challenged the assumptions embedded in popular images and theories of power. We still
think about power, Foucault argued, as if it were centralized in the state or the economy
and exercised in a top-down manner. We still picture power in its modernist guise: as
centralized, top-down, “macro”, and repressive. It is this image of power, Foucault
argued, “that we must break free of … if we wish to analyze power within the concrete
and historical framework of its operation” (Foucault, 1978). These “new methods of
power,” Foucault argued, are employed “on all levels and in forms that go beyond the
state and its apparatus” (Foucault, 1980).
In a 1987 essay on methods, Foucault argued that the “target” of the researcher’s
analysis should not be “‘institutions’, ‘theories’, or ‘ideology.’” The “target of analysis,”
Foucault argued should be what he called “regimes of practices” that “possess up to a
point their own specific regularities, logic, strategy, self-evidence, and ‘reason’”
(Foucault, 1987). For Foucault, it is through specific regimes of practices that modern
power not only produces bodies of knowledge and social order, but simultaneously
constitutes individuals and populations as both productive and obedient subjects.
Foucault refers to these practices, which are both discursive and material, as the
“biopolitics of populations” and the “anatomo-politics of individual bodies.” He refers to
the underlying form of power that unites them as “biopower.” These overlapping and
complementary sets of practices, which consist of technologies that target the body,
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operate across multiple sites and institutions. They shape, train, manage, construct, and
administer embodied subjects and subject-populations. In short, they turn individuals and
groups into subjects of the regime. This sounds abstract, but it is actually quite specific,
local, and concrete. This is easier to see in the context of disease regimes.
Diseases, like other dimensions of human experience, are managed, produced,
represented, and administered through specific regimes of practices. In my
conceptualization, a disease regime consists of the regime of practices through which a
particular disease is discursively represented, medically managed, publicly administered
and, by implication, subjectively experienced. The regime of practices does not, of
course, wholly determine its subjects’ experiences, but it deeply shapes these
experiences, sets limits, and makes certain outcomes more and less possible and likely.
The voluntary subjects of disease regimes are the scientists, physicians, health care
professionals, technicians, administrators, and others who have chosen to occupy these
subject positions. They are an important part of the story, but my analysis focuses on the
involuntary subjects of disease regimes. The involuntary subjects of disease regimes are
those subjects who are involuntary incorporated into the regime through the targeted
inscription of power on their bodies and psyches. “Involuntary” does not, of course,
necessarily mean unwilling. On the contrary, the practices of biopower are most
effective when they constitute subjects who are willing and able to participate in their
own subjectification.
In the analysis that follows, I trace changes over time in the regime of breast cancer,
focusing the bulk of my analysis on the period from 1970-1990. Between 1970 and
1990, when the breast cancer movement achieved national visibility, a new regime of
practices took shape that gradually transformed the first regime of breast cancer, the
regime medicalization, into a new regime of practices, the regime of biomedicalization.2
Table 1.1 provides a snapshot of these changes.
Table 1.1 Regimes of Breast Cancer
Regime of Medicalization
(early 1900s – 1970)
Sick Role
Social Script
Symptomatic Women and
Involuntary
Temporarily Sick
Subjects
Mastectomees
Do Not Delay:
Public
Administration Consult a Physician at First
Sign of Danger
Public
ASCC/ACS, NCI, public
Administrators
health depts
Regime of Biomedicalization
(transitional phase: 1970-1990)
Risk Role
All Adult Women
Go In Search:
Triple Screening of Adult Women
ACS, NIH, NCI, CDC, Congress, state
legislatures, public health depts,
NBCAM, HMOs, American College of
Radiology, medical orgs, medical
equipment mfrs, women’s health orgs,
The term “biomedicalization” is borrowed from (Clarke, Shim, Mamo et al., 2003;
Clarke & Olesen, 1999).
2
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women’s mags, mass media
Medical
Managers
Sovereign Surgeons
Health Care Teams
Medical
Management
Therapeutic Hegemony
(one-step procedure)
Typical Time
Frame of
Treatment
Social Relations
of Disease
1 day
Therapeutic Complexity
(mammograms, biopsies, surgery,
radiation, chemotherapy, hormone
therapy, reconstruction, rehabilitation)
1 year
Architecture of the Closet
Breast Cancer Continuum
The changes summarized in Table 1.1 are explored in greater detail in the sections that
follow.
The Regime of Medicalization: Temporarily Sick and
Symptomatic Subjects
Diseases of the breast—including conditions that appear to fit descriptions of what
we now call breast cancer—have been claimed by various medical traditions for
thousands of years. From the perspective of scientific medicine, however, breast cancer
was not successfully medicalized in the U.S. until the early decades of the twentieth
century. Prior to that time regular and irregular physicians, folk healers, quacks, and
sellers of patent medicines competed for patients in a teeming medical marketplace that
was largely unregulated (Starr, 1982). Regular physicians, who practiced “heroic”
medicine, which included surgery, were avoided by a significant portion of the
population in favor of equally ineffective therapeutic approaches that less painful
(Patterson, 1987).
During the first few decades of the twentieth century breast cancer was claimed by a
new breed of surgeons who, in the words of Barron Lerner, “invented breast cancer as a
curable disease” (Lerner, 2000). This was not an easy or automatic process, however, and
it did not happen overnight. It was the outcome of a series of struggles between heroic
medicine and its main competitors that led to a medical monopoly by the former. It was
the outcome, second, of a campaign to convince ordinary physicians that cancer
diagnosed early could be cured by a competent surgeon. It was the outcome, third, of a
campaign to teach ordinary women how to recognize the “danger signals” of cancer and
respond, without delay, by consulting a competent physician. These “cancer is curable”
and “do not delay” campaigns, which were organized by the American Society for the
Control of Cancer (ASCC) and implemented, in part, through the efforts of the Women’s
Field Army of the ASCC (later the American Cancer Society), medicalized breast cancer
during the first few decades of the twentieth century, especially among white, middle
class women (see especially Aronowitz, 2001; Breslow & Wilner, 1979; Gardner, 1999;
Patterson, 1987; Reagan, 1997).
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The regime of medicalization was not a regime in which the discourse of breast
cancer was suppressed. Rather, it was a regime in which new discourses of disease were
strategically constructed and disseminated by cancer educators and medical
entrepreneurs, surgeons were enthroned as the sovereign rulers of the kingdom, and
women exhibiting danger signals were reconstituted as patients, that is, as symptomatic
subjects of the disease regime.
During the regime of medicalization, the Halsted radical mastectomy was installed as
the one-size-fits-all hegemonic treatment. The Halsted radical mastectomy (named after
Johns Hopkins surgeon William Halsted) was a deforming, often partially debilitating,
procedure that involved the removal of the chest muscles and surrounding lymphnodes,
as well as the breast tissue. Instead of separating the biopsy from the radical mastectomy,
however, surgeons combined the two procedures into one operation (Austoker, 1985;
Fisher, 1999; Lerner, 2000, 2001; Montini & Ruzek, 1989). The “one-step procedure”
required that patients sign in advance a consent form authorizing their surgeon to perform
an immediate mastectomy if he determined that the tumor was malignant. Practically
speaking, this meant that a certain percentage of patients who entered the hospital
expecting nothing more than a surgical biopsy awoke to discover that they had been
diagnosed with breast cancer and treated by radical mastectomy while they were prone
and unconscious on the operating table.
Accompanying the rise of the sovereign authority of surgeons, a new social script,
later dubbed the “sick role” (Parsons, 1951) was institutionalized. The sick role coconstructed the imperial authority of surgeons and the obedience of patients. It required
new “mastectomees” to hide the evidence of their surgery and return to their normal lives
and duties—as wives, mothers, grandmothers, and homemakers—following their
recovery from surgery. Norms of nondisclosure ensured that cancer patients, even
women who underwent the one-step procedure, were often lied to about their diagnoses.
Physicians, in the words of James Patterson, “conspired with frightened relatives to hide
the ‘awful truth’ of cancer” (Patterson, 1987). Hiding the awful truth involved everything
from a studied silence on the subject, the use of euphemistic language, dexterous
dissembling and, failing that, bald-faced lying (Leopold, 1999; Lund, 1946; Oken, 1961a;
Patterson, 1987).
In sum, during the regime of medicalization, diagnosis moved from the home to the
hospital, women with breast cancer were isolated from each other, temporarily
segregated from the rest of society, and channeled back into their normal lives following
their recuperation from surgery. The medicalization of breast cancer during the twentieth
century thus created a new regime of practices through which breast cancer was
medically managed, discursively represented, and publicly administered. It created new
subjects—symptomatic women and temporarily sick “mastectomees.” It created new
structures, scripts, and social relations of disease: the sick role, isolation, segregation,
normalization, and invisibility. Practices of nondisclosure made the construction of
cancer-related identities and communities nearly impossible, and the architecture of the
closet imposed by the sick role limited the potential for mobilization among women with
breast cancer.
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The Regime of Biomedicalization: Permanently Risky Subjects
and the Breast Cancer Continuum
During the 1970s and 1980s, new practices arose that gradually transformed the
regime of medicalization into a new disease regime. These transformations included new
discourses of disease, new early detection campaigns and screening technologies, and
new technologies for managing breast cancer within individual bodies and rehabilitating
breast cancer patients. An overview of these changes is provided below.
Within this new regime of practices the either/or distinction between cancer/not
cancer was replaced by a breast cancer continuum, and the temporarily sick and
symptomatic subjects of the earlier regime were replaced by permanently risky subjects
that occupied shifting positions on the breast cancer continuum (Klawiter 2002). There
was greater transparency between positions on the breast cancer continuum and greater
communication among its inhabitants, yet at the same time, there was a heightened
awareness of the ambiguity of different positions, the limitations of treatment, and the
uncertainty of the future. An overall intensification and expansion of screening,
diagnostic, and treatment technologies occurred. Finally, the sovereign authority of
surgeons was replaced by the less absolute and more diffuse authority of health care
teams.
The Public Administration of Populations
During the 1970s and 1980s healthy, asymptomatic, cancer-free women were
incorporated en masse into the medical machinery of breast cancer. The mass
incorporation of cancer-free women was achieved through the development and diffusion
of screening discourses and practices. Healthy, asymptomatic women were incorporated
into the regime of breast cancer as both subjects and objects of screening. The
transformation of healthy women into “risky subjects” (Klawiter, 2002), however, like
the earlier transformation of “dangerous” women into symptomatic patients and
mastectomees, did not happen overnight or automatically. Like the medicalization of
breast cancer more than half a century earlier, the biomedicalization of breast cancer in
the 1970s was spearheaded by the American Cancer Society.
In 1973 the American Cancer Society (ACS) and the National Cancer Institute (NCI)
launched the Breast Cancer Detection Demonstration Project (BCDDP). The BCDDP,
which was based on the results of an earlier trial of mammographic screening conducted
by the Health Insurance Plan (HIP) of Greater New York (Shapiro, Strax, & Venet, 1971;
Strax, Venet, & Shapiro, 1973) was the “first major field campaign” in Nixon’s newly
declared “war on cancer” (Ross, 1987). Designed as a mammography public relations
campaign rather than a scientific study, the ACS went “all out” to publicize the
demonstration project (Ross, 1987). With the assistance of media publicity generated by
Betty Ford’s and Happy Rockefeller’s public disclosures of their mastectomees and their
promotion of mammographic screening, the BCDDP enrolled 275,000 women over the
age of thirty-five at twenty-seven medical centers around the country and provided each
woman with five years of free clinical exams and screening mammograms (Baker, 1982).
Participants were also instructed in the technique of breast self-exam (BSE), which the
ACS had been promoting since the 1950s. BSE, clinical breast exam, and
mammographic screening constituted the new trilogy of early detection.
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The BCDDP received both positive and negative publicity and ignited a series of
controversies and debates—about the safety, effectiveness, and unintended consequences
of mammographic screening—that are still with us today, but by the time the BCDDP
concluded in 1978, the idea of screening asymptomatic women had become a widely
accepted approach to the public administration of this disease. The Breast Cancer
Detection Demonstration Project (BCDDP) thus launched a new era in the public
administration of breast cancer and expanded the domain of this disease regime to
include asymptomatic, adult women—the risky subjects of the new regime. This was its
most powerful and enduring legacy. By 1979 “breast cancer … had become one of the
most frequently reported cancers in the media” (Marino & Gerlach, 1999). By 1980,
according to the NCI’s Office of Cancer Communications, 76 percent of the 1,580
women that were surveyed believed that cancer was their most serious health problem
(National Institutes of Health, 1981).
During the 1980s the screening of healthy populations accelerated. In 1981, for
example, 134 mammography machines were installed across the country. Between 1981
and 1990, however, nearly 10,000 mammography machines were installed, concentrated
on the coasts and in major metropolitan areas (Brown, Kessler, & Rueter, 1990). The
expansion of screening was promoted through many different mechanisms, including
National Breast Cancer Awareness Month, a new ACS campaign called the Breast
Cancer Detection Awareness Project, and state legislation.
First, National Breast Cancer Awareness Month was created in 1985 to “promote the
importance of the three-step approach to early detection: mammography, clinical breast
examination and breast self-examination” (AstraZeneca International, n.d.).3 Within a
few years NBCAM was officially endorsed by a range of governmental agencies,
associations of health professionals, trade groups, and cancer organizations. NBCAM
designed and produced many of the promotional materials used in breast cancer early
detection campaigns and disseminated them via a wide variety of means—public service
advertising, speaker’s programs, and the placement of brochures, flyers and posters in
churches, beauty parlors, retail stores, physician offices, pharmacies, fitness centers, and
so forth.
Second, between 1986 and 1989 the American Cancer Society launched a new
initiative known as the Breast Cancer Detection Awareness (BCDA) project. The BCDA
was the largest breast cancer awareness campaign launched by the ACS (Fink, 1989).
BCDAs were locally-organized and implemented, but they involved the resources,
planning, publicity, and financial support of the national ACS as well. It included a twopronged campaign aimed at healthy women and primary care physicians. Both prongs
emphasized the holy trinity of early detection—breast self-exam, clinical breast exams,
3
Interestingly, NBCAM was not the brainchild of a federal agency, a public health
department, a health insurance company, or a private charity but rather, of a chemical
company—Imperial Chemicals Industry (ICI), a British manufacturer of plastics, paints,
pesticides, and pharmaceutical therapies, among other things. ICI’s interest in breast
cancer, though it might seem puzzling at first, stemmed from their investment in the
breast cancer treatment drug tamoxifen, brand name Nolvadex, for which they held the
patent (see especially Klawiter, 2002).
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and mammographic screening. According to Patricia Kaufert, the BCDAs were “based
on [the] principles of community mobilization from the 1960s, shrewd marketing
strategies, and elements of evangelical revivalism” (Kaufert, 1996).
Third, in addition to the mammography screening campaigns promoted by private
companies, federal agencies, professional associations, and health voluntaries, dozens of
bills expanding access to mammographic screening were proposed in state legislatures
(Moore, 1991).4 By the end of the 1980s nineteen states had adopted legislation requiring
private health insurance companies and managed care organizations to cover (or offer
coverage) for routine mammographic screenings, and by the end of 1991 that number had
doubled again (Centers for Disease Control and Prevention, 2000). Embedding
mammographic screening in state legislation was an important step in institutionalizing
and routinizing mammographic screening within the U.S. health care system.
As the imaging technology of mammography improved and radiologists grew more
adept at reading mammograms, ambiguous breast conditions of uncertain clinical
significance were diagnosed with growing frequency (Lerner, 1998a, 1998b). A high
recall rate ensured that, for every woman whose breast cancer was discovered as a result
of mammographic screening, many more—probably twenty to thirty times that number—
underwent additional evaluation, including additional mammographic images, ultrasound
procedures, and biopsies of various types.5 Growing numbers of women received
mammogram reports that, while not alarming enough to require additional diagnostic
procedures, were suggestive enough to require active watching and anxious waiting.
Thus, for every woman who received a positive diagnosis, many more moved into
ambiguous and uncertain positions along the breast cancer continuum.
One of the most important outcomes of the expansion and improvement of
mammographic screening was a dramatic growth in the number of women that were
diagnosed with ductal carcinoma in situ of the breast, or DCIS. DCIS was a symptomless
condition that could not be detected manually, but could be visualized
mammographically. Thus, prior to the rise of mammographic screening, DCIS was
4
In 1988 and 1989, mammography topped the list of new state mandates for health
insurance benefits. Mandated insurance benefit laws are “laws that require third-party
payers, such as health insurers (individual or group plans), disability insurers, Medicare
supplemental insurance, or prepaid health plans (HMOs), to cover certain benefits or at
least to offer the benefit to their policyholders as a condition of doing business in the
state” (Moore, 1991).
5
A recent study comparing mammography screening in the US and the UK found
that among women between the ages of 50 and 54 who were mammographically
screened, recall rates (for additional assessment) were almost twice as high in the US as
in the UK--14.5% and 12.5% in the two U.S. programs tested and only 7.6% in the UK.
This difference in recall rates was not the result of different detection rates, which were
similar in both countries—5.8 per 1000 mammograms in the U.S. compared to 6.3 in the
UK. There were also twice as many negative biopsies performed in the U.S., compared
to the U.K., and women in the U.S. were more likely to receive a surgical biopsy in the
operating room, as opposed to a non-surgical needle biopsy in the doctor’s office.
(Smith-Bindman, Chu et al., 2003)
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rarely diagnosed. DCIS, which is cancer confined to the milk ducts of the breast, was
considered “preinvasive” by some, “noninvasive” by others, and “precancer” by yet a
third group of physicians (Ernster, Barclay et al., 1996; Leonard & Swain, 2004).
DCIS presented a challenge to physicians not only because its classification was in
dispute, but more importantly, because its clinical significance was uncertain. Physicians
knew that, if left untreated, a certain number of DCIS cases would develop into invasive
breast cancer, but there was no means of identifying which cases would become invasive.
During the 1970s and 1980s, this meant that the majority of women diagnosed with DCIS
were treated by mastectomy. Because DCIS often presented as a multifocal disease,
women with DCIS were often poor candidates for breast-conserving surgery. Thus, as
breast-conserving surgery combined with radiation therapy became a more popular
option among women diagnosed with small tumors, many women with DCIS found
themselves in the peculiar position of having fewer options than many women with
invasive breast cancer.6
Between 1973 and 1983 the incidence rate of DCIS grew an average of 4 percent a
year for women aged 40-49 years. Between 1983 and 1992 incidence rates for this group
of women grew approximately 17.4 percent a year. For women aged 50 and over, DCIS
incidence rates increased approximately 5.2 percent a year between 1973 and 1983, and
18.1 percent a year from 1983-1992. Between 1983 and 1989 incidence rates for DCIS
increased 213 percent among white women and 153 percent among black women. By the
mid-1990s, DCIS accounted for 30-40 percent of mammographically detected breast
cancers (Ernster, Barclay, Kerlikowske et al., 1996). Yet, because DCIS was counted
and classified separate from invasive breast cancer, the skyrocketing rates of DCIS were
largely invisible to the lay public. Even invasive incidence rates, as Paula Lantz and
Karen Booth have shown, were increasingly portrayed in women’s magazines, however,
as evidence of a growing breast cancer epidemic (Lantz & Booth, 1998).
The diffusion of screening technologies—BSE, clinical breast exams, and
mammographic screening—reconstituted normal breasts into suspect purveyors of
disease and asymptomatic women into risky subjects. Every ambiguous mammogram
and every liminal diagnosis with an unclear prognosis resulted in the deeper
entanglement of healthy women in the rapidly expanding breast cancer apparatus. The
diffusion of breast cancer screening thus moved the awareness, fear, and the anxiety of
being diagnosed with breast cancer onto the horizons and into the psyches of a sizable
portion of the population of adult women. These risky subjects, the involuntary subjects
of the new regime, occupied shifting positions on a breast cancer continuum.
This transformation did not, however, occur, even-handedly. Whereas white,
middle-class women were successfully interpolated into the new disease regime, less
privileged women were marginalized by the discourses and practices of breast cancer
screening (Bigby & Holmes, 2005; Krieger, 2005; Lannin, Mathews et al., 1998;
Marchick & Henson, 2005; Pasick, D'Onofrio, & Otero-Sabogal, 1996). Thus, as the
For a thoughtful discussion of these issues from a patient’s perspective, see Sue
Rochman (2000). For a thoughtful historical analysis of these issues, see especially
Barron H. Lerner (1998a). For a recent study, see especially Gregory Leonard and
Sandra Swain (2004).
6
11
discourses and practices of breast cancer screening increasingly penetrated the social
spaces, bodies, and subjectivities of the white middle classes, they skirted the edges of
communities of color and took a partial detour around poor women and women without
health insurance.
As Lisa Cartwright has pointed out, although screening and surveillance techniques
of disease management function, in part, as technologies of social control, they also
function, at least in the United States, as a form of class and cultural privilege
(Cartwright, 1995). Thus, as white middle-class women were increasingly transformed—
and helped transform themselves—into risky subjects, the discourses and practices of
early detection remained relatively muted and marginalized among other groups of
women.
The Medical Management of Individual Bodies
During the 1970s and 1980s the medical management of breast cancer within
individual bodies changed along a number of dimensions. Norms of nondisclosure gave
way to informed consent and patient participation in decision-making. The one-step
procedure and the Halsted radical mastectomy were reluctantly abandoned by surgeons
and replaced by a variety of diagnostic procedures and surgical options. The sovereign
authority of surgeons was replaced by the more diffuse and less imperious authority of
health care teams comprised of different kinds of physicians who specialized in the
treatment of cancer patients. Simultaneously, the discourse of treatment began to shift
from a curative language to a language of risk reduction. Adjuvant chemotherapy and
radiation therapy became standard tools in the treatment armamentarium. With the
growing use of adjuvant therapies, the adverse or “side” effects of treatment multiplied
and the duration of treatment lengthened considerably. Accompanying these
developments was the rise of peer and group-based forms of patient rehabilitation
programs. Together, these changes added up to a new regime of breast cancer, the
regime of biomedicalization. New social relations of disease and embodied subjectivities
accompanied the rise of this new disease regime. A brief overview of each of these
developments is provided below.
During the 1960s and 1970s, the norms of disclosure among physicians underwent a
dramatic shift. By 1977, a full ninety-eight percent of the surveyed physicians reported
that disclosure was their usual policy and that they believed patients had the right to
know their diagnoses (Novack, Plumer et al., 1979). Twenty years earlier, ninety percent
of the physicians surveyed expressed their belief that it was often best not to tell cancer
patients the truth about their diagnoses and a strong majority claimed that they never or
seldom told their patients the truth about their diagnoses (Good, Good et al., 1990; Oken,
1961b).
Beyond the basics of disclosure, however, lay the question of informed consent and
decision-making. By the mid-1970s it was common practice for physicians to inform
their patients of their breast cancer diagnoses, but they were still being informed postoperatively. During the 1980s the targeted activism of a small number of breast cancer
patients and former patients lobbied state legislatures for the passage of breast cancer
informed consent legislation. In 1979 Massachusetts became the first state to pass breast
cancer informed consent legislation and a year later California became the second. By
12
the end of the decade, breast cancer informed consent legislation had been proposed in
twenty-two states and adopted in fourteen (Montini, 1991, 1996, 1997; Montini & Ruzek,
1989). Breast cancer informed consent campaigns were typically launched by a small
handful of former breast cancer patients in each state (Montini, 1996). In most cases,
these patient-activists were not connected to the women’s health or patients’ rights
movements (Montini, 1996), and they did not publicly engage in what Mary Fainsod
Katzenstein (1995) has termed the “discursive politics of feminism.” The development
of breast cancer patients’ participation in decision-making was closely linked to the
abandonment of the one-step procedure and the willingness of American surgeons to
offer alternatives to the Halsted radical mastectomy.
During the 1970s and 1980s the one-step procedure and the Halsted radical
mastectomy were finally abandoned by American surgeons through the combined efforts
of Rose Kushner, a handful of maverick, whistle-blowing physicians, the women’s health
movement (Kushner, 1975, 1977a, 1977b, 1986; Lerner, 2000, 2001; Montini & Ruzek,
1989). These efforts culminated, in 1979, in an NIH consensus development conference
on the treatment of breast cancer. Consensus statements issued by the NIH-assembled
panel of experts, which included patient activist Rose Kushner, encouraged physicians to
abandon the one-step procedure. The NIH consensus conference also sounded the death
knell for the Halsted radical mastectomy. The panel of experts found that “total
mastectomy with axillary lymph node dissection with or without radiotherapy” provided
“an equivalent benefit” and “should be recognized as the current treatment standard”
(National Institutes of Health, 1979). The NIH conference, in combination with results
from clinical trials conducted in Europe and, perhaps most importantly of all, the
demands of women’s health activists and breast cancer patients, increased the pressure on
U.S. surgeons to offer surgical alternatives to the Halsted radical mastectomy.
By the mid-1980s the Halsted had declined from a high of 54,000 in 1968 to a low of
5,000 in 1983 (Montini & Ruzek, 1989). Less radical surgeries made possible the
performance of breast reconstructive surgeries. Reconstructive surgery expanded rapidly
during the 1980s, along with the development of new surgical techniques and implant
technologies (Kushner, 1986; Trabulsy, Anthony, & Mathes, 1994). Simultaneously, the
surgical repertoire expanded to include a host of breast-conserving surgeries. The
expansion of surgical repertoires occurred not only as a result of the development of new
techniques and clinical trials, but also, and importantly, as a result of patient demands
that grew out of the patients’ rights and women’s health movements. With the
multiplication of types of breast surgery, the treatment options greatly expanded, for both
patients and surgeons. Importantly, this expansion, in the context of new norms of
disclosure and informed consent procedures succeeded in creating, for growing numbers
of women, the possibility and even the necessity of weighing options, making choices,
and taking an active role in their treatment.
During the 1980s treatment shifted away from surgery, purely local therapies—
surgery and radiation therapy—to include adjuvant chemotherapy. In 1976, only 7
percent of breast cancer patients received chemotherapy (Kushner, 1986). In 1985 the
NIH held a second consensus conference on chemotherapy for women with breast cancer
(the first was held in 1980) to review the results of new clinical trials. The panel of
experts issued a consensus statement recommending multi-agent cytotoxic chemotherapy
13
as the standard treatment for all women with lymph node positive, estrogen receptor
negative breast cancer (National Institutes of Health, 1985). The trend to incorporate
chemotherapy into the standard treatment regimens of women with breast cancer was
given another boost in 1988 when the National Cancer Institute issued a Clinical Alert to
all physicians urging them to administer chemotherapy to all breast cancer patients,
regardless of their stage of diagnosis or tumor biology.7
As the use of chemotherapy grew, so too did the number of medical oncologists.
The first certifying examinations in medical oncology were administered in 1973 and the
number of board-certified oncologists grew rapidly thereafter (Kennedy, 1999). By 1985
there were more than 4,000 board-certified medical oncologists in the U.S., and by 1992
there were 6000. Medical oncologists quickly came to be viewed, in the U.S., “not as a
consulting specialist, but as the primary doctor caring for cancer patients” (Löwy, 1996).
Another systemic therapy, tamoxifen, was approved by the U.S. Food and Drug
Administration in 1978 for the treatment of women with metastatic breast cancer.
Tamoxifen was gradually incorporated into the treatment regimens of women diagnosed
with earlier stage disease, often following the completion of cytotoxic chemotherapy.
Unlike the cytotoxic chemotherapies, tamoxifen was a hormone therapy that was selfadministered orally, once a day, for five years. Compared to cytotoxic chemotherapy, it
was relatively well-tolerated by most women, but like all drugs, it introduced new risks
and, for some women, intolerable side effects.8
This new domain of medicine and these new repertoires of treatment prolonged and
deepened the role of the breast cancer patient. Tamoxifen extended adjuvant treatment
for five years and cytotoxic chemotherapy, in the words of Rose Kushner (1984),
“literally made healthy people sick”—and not just a little bit. The “side” effects of
chemotherapy, which breast cancer patients experienced as the main effects of treatment,
included bone-crushing fatigue, nausea, hair loss, dry skin, disintegrating nails, loss of
vaginal lubrication/painful intercourse, premature menopause/loss of fertility, thrush, and
a weakened immune system that could lead to any number of opportunistic infections.
Chemotherapy regimens usually lasted months, and sometimes more than a year.
Thus, beginning in the mid-1970s, adjuvant therapy in the form of cytotoxic
chemotherapy and hormone therapy expanded to embrace a wider band of breast cancer
patients and deepened the penetration of cancer treatment deeper into women’s lives and
bodies. No longer did women enter the hospital for a single surgical procedure and leave,
days later, as cured mastectomees. Adjuvant therapies, which were administered for the
purpose of reducing the risk of recurrence, prolonged the treatment experience, for many
women, from days to months. These therapies expanded treatment into parts of women’s
bodies left untouched by the previous regime.
7
For histories of the use of chemotherapy for breast cancer and discussions of the
impact of the NCI’s 1988 clinical advisory on the use of adjuvant therapy, see especially
Hillner and Smith (1991), Johnson, Ford et. al (1994), and Mariotto, Feuer et. al (2002)
8
In 1998 tamoxifen became the first (and is still the only) cancer chemopreventive
drug approved by the FDA for the treatment of healthy, high risk women. Shortly
thereafter, tamoxifen became FDA-approved for the treatment of women with ductal
carcinoma in situ of the breast.
14
Finally, during the 1970s and 1980s the space of patient participation continued to
expand and deepen as the medical management of women with breast cancer changed in
a third dimension: the isolation of breast cancer patients during the regime of
medicalization was gradually replaced by structured opportunities for interaction, peer
support, and relationships with other breast cancer patients. This shift was fed by two
developments: the institutionalization of the Reach to Recovery program by the
American Cancer Society, and the growth of cancer support groups and organizations.
Reach to Recovery was created by Terese Lasser in 1952 and finally adopted by the
ACS in 1969 (Lasser & Clarke, 1972). Reach to Recovery was designed as a peer-based,
one-on-one, self-help, hospital-based visitation program for new mastectomees. Run
entirely on volunteer labor and modeled after Alcoholics Anonymous, Reach to Recovery
used ex-breast cancer patients to provide new, post-operative breast cancer patients with
a breast prosthesis, practical information, social-psychological support, and instruction in
therapeutic exercises (physical therapy) designed to restore physical strength and
functioning following a radical mastectomy. Reach to Recovery quickly became one of
the largest and most successful volunteer programs ever developed (Breslow & Wilner,
1979; Kushner, 1975; Lasser & Clarke, 1972; Ross, 1987).
In order to discourage mastectomees from thinking of breast cancer as a disability or
an ongoing source of suffering or difficulty, Reach to Recovery volunteers were
discouraged from maintaining ongoing contact or building on-going relationships with
their clients.9 A statement from a Reach to Recovery representative, quoted by Rose
Kushner, conveys the sprit of the program and its practices quite effectively: “We didn’t
want Reach to Recovery to become a crutch....After all, the whole point of Reach to
Recovery is to convince women they do not have a disabling handicap. We talked about
having a mastectomy club . . . . But that would have defeated our whole purpose. Having
a mastectomy is not a permanent handicap, and even the worst of scars can be hidden by
a well-fitting prosthesis and the right clothing. So we decided we would help the patient
for just a few weeks, and then leave her to her own psychological recovery” (Kushner,
1975).
The implementation of Reach to Recovery challenged the isolation of women with
breast cancer from each other, but it was limited by its programmatic structure to one-onone peer support delivered over a very brief period of time—typically, one meeting. The
option of becoming Reach to Recovery volunteer opened the door for a small number of
women to maintain an ongoing relationship to the mastectomee underground, but the
degree to which the disease could become a shared experience and collective identity
Again, Rose Kushner’s pioneering efforts and writings are instructive. Kushner
wrote about the obstacles she encountered when she began trying to gather information
on the experiences of women who had been treated for breast cancer. Kushner wanted to
contact women who were not immediately “post-op” and she turned to the American
Cancer Society and the Reach to Recovery program for help. They were unable to assist
her, however, because Reach to Recovery did not maintain contact with women who had
been served by their program (Kushner, 1975). For additional analyses of Reach to
Recovery from patients’ perspectives, see Audre Lorde (1980), Sharon Batt (1994), and
Maren Klawiter (2004).
9
15
among breast cancer patients was limited by the “anti-identity” philosophy of Reach to
Recovery. It was the proliferation of breast cancer support groups that made possible that
transition.
If we think of Reach to Recovery as the contradictory beginnings of new diseasespecific forms of association and the development of nascent identities, than cancer
support groups represent the broadening and deepening of those limited forms of
association. If we think of breast cancer informed consent legislation as establishing the
formal rights of breast cancer patients, then the institutionalization of support groups
represented the actual expression of that right. It was in support groups that many
women learned how to be informed, assertive patients.
In the San Francisco Bay Area, the focus of my fieldwork, support groups were first
developed outside of and at the margins of biomedicine and, during the late 1980s and
1990s, gradually institutionalized within the health care system. Initially resisted by
physicians, they were eventually reconceptualized within the health care system as
another form of adjuvant therapy. Grassroots organizations like the Women’s Cancer
Resource Center in Berkeley, California, however, rejected the medical model of support
groups and continued to promote a different model of community support and
empowerment for women living with cancer. Key feminist cancer organizations in the
San Francisco Bay Area developed out of community-based support groups (Klawiter,
1999b).
Regardless of the model they adopted, however, support groups expanded and
deepened the space available for the formation of new social networks, solidarities,
sensibilities, and disease-based identities. Support groups regardless of their therapeutic
philosophy, challenged the structural barriers that separated women with breast cancer
from one another. Support groups facilitated new relationships, the giving and receiving
of emotional support, the flow of information, the development of new languages, new
bodies of knowledge, and shared experiences. For the first time, spaces were created that
reconfigured the structures of patient individualization, isolation, silence, and invisibility.
They did so through the simple act of bringing patients together in a common space and
time.
Conclusions
The rise of mass screening expanded the jurisdictional domain of breast cancer to
incorporate asymptomatic women into the disease regime and reconstituted healthy,
asymptomatic, ostensibly cancer-free women as risky subjects. The movement of the
mammographic gaze into asymptomatic populations transformed a relatively clear
either/or distinction into a more fluid, fuzzily bounded, and ambiguous breast cancer
continuum. At the same time diagnostic and treatment options multiplied, norms of
nondisclosure were replaced by legal requirements of informed consent, and the space of
patient decision-making expanded. The Halsted radical mastectomy was replaced by less
radical surgeries but, at the same time, chemotherapy and radiation therapy were added to
the typical treatment regimen, and new rehabilitation practices emerged. The biopolitics
of screening and the anatomo-politics of treatment thus created new, widely shared, and
embodied experiences of breast cancer as a regime of practices.
16
Taken individually, many of these changes in the medical management of breast
cancer and the anatomo-politics of individual bodies were minor and incremental.
Cumulatively, however, these changes created the social spaces, subjectivities, and
solidarities that facilitated the development and fed the success of the breast cancer
movement. The shift in social scripts from the sick role to the risk role meant that,
instead of being cured, women treated for cancer rejoined the breast cancer continuum
and became permanent members—or so they hoped—of what Arthur Frank (1995) has
termed the “remission society.” These differences—and this is the crux of my
argument—had important consequences for the development of the breast cancer
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