Beneath the Outrage: 2009 Task Force Recommendations Undermine Online Breast Cancer Community

Beneath the Outrage: 2009 Task Force Recommendations Undermine Online Breast Cancer Community

Christal Seahorn
University of Louisiana at Lafayette

Abstract:
In November of 2009, the United States Preventative Services Task Force (USPSTF) released medical recommendations suggesting a significant reduction in the use of mammography and self exams in breast cancer diagnosis. This paper examines forum threads from the Susan G. Komen message board that captures the immediate outrage and confusion of a group of breast cancer survivors. Analyzing this online communication reveals the ways in which the USPSTF announcement threatened the community’s trusted rituals, traditions and belief systems and aims to bring the unique values of the breast cancer community into a larger academic awareness. This study demonstrates how the mishandling of the 2009 announcement highlights the importance of moving beyond strictly scientific methodology to a greater use of applied folklore and ethnographic analysis to better respect the unique needs of patient groups.

 

I would have touched my fingers
to where your breasts had been
but we never did such thingsⁱ
—from Adrienne Rich’s “A Woman Dead in Her Forties”—

 

Introduction

On November 16, 2009, the United States Preventive Services Task Force (USPSTF) announced medical recommendationsⁱⁱ advocating a less aggressive approach to breast cancer diagnosis. Published on the U.S. Department of Health and Human Services (HHS) website, the announcement revised the task force’s previous 1992 recommendations in light of new scientific data. The most significant changes included: 1) raising the recommended age of a woman’s first mammogram from 40 to 50-years old; 2) suggesting that women ages 50-74 have mammography screening biannually, rather than annual testing; 3) determining that medical professionals no longer needed to teach patients how to do breast self-examinations; and, 4) announcing that current mammography procedures did not show a statistically significant decrease in mortality for women aged 40-49 when compared to the potential anxiety of false-positives tests and misdiagnoses (United States Preventive Services Task Force 2009).The announcement sparked a media upheaval. Within hours, leading research and advocacy groups published statements maintaining original guidelines. ⁱⁱⁱ News headlines announced: “Breast Cancer Report Creates a Storm”; “Breast screening advice upended”; “Task Force Rejects Mammograms Before Age 50”; “Which women do we abandon?” (emphasis mine). The new recommendations had certainly politicized the media debate. Yet, beneath the swirl of public discourse, a spontaneous unofficial dialog circulated. The most visible records of these “private” conversations were online discussion boards that were flooded with messages from breast cancer patients.

This personal discourse is central to the communicative context surrounding the 2009 statement because it introduced into the academic debate participants whose voices are often drowned beneath official dialog or sensationalized news specials. Analyzing the announcement’s impact on the conversations of women actively dealing with the traumas of breast cancer uncovers the motivations at the core of their expressed outrage. While the medical legitimacy of the USPSTF findings are well worth debate, I propose that the breast cancer community’s outcry related less to an appraisal of medical exactitude and more to the ways in which the announcement threatened patients’ legitimacy as a folk community with rituals, belief systems, traditions, and customs far beyond medical diagnostics and treatments. The task force had failed—not in its job of assessing scientific research and offering updated modifications but in its social responsibility to consider the affect this news would have on an already-traumatized group of breast cancer survivors. Examining this response explains the task force’s failure in connection with folkloric behaviors and an experience-based morality.

Both the ways in which breast cancer patients come to terms with their disease and how they responded to the threat posed by the USPSTF announcement, revealed ritualistic elements that demonstrated use of folklore as a natural coping mechanisms. An ethnographic examination of group dialog is directly relevant to the emergence of folklore in traumatized communities (George and Dundes 1978; Proschan 1992; and Coulbrooke 2002) and to the necessary role of the folklorist as a participant in socio-cultural reform (Proschan 1992; Payne 1998; Hufford 1995; Hufford 1997; and Hufford 1998). The women’s language as they discuss their struggle with breast cancer and the methods they use to organize their reactions to the task force announcement reveals the epistemological framework within the breast cancer community. This truth system is seemingly disconnected from what medical experts “know” about breast cancer. If folklore arises in moments of crisis, then understanding the coping strategies that surface in personal, communal statements brings folklorists and the larger academic community to a necessary appreciation for how breast cancer patients construct their values and establish group identity.

 

Methodology

The empirical focus for this examination is narrative data collected from the following two areas: 1) personal interviews conducted via e-mail and forum discussions with women directly affected by breast cancer; and, 2) a collection of spontaneous forum threads posted to a major breast cancer advocacy site following the November 16^th USPSTF announcement. All personal interviews included in this study were conducted in the two weeks following the release of the recommendations. Because it is the largest and one of the longest-running organizations for breast cancer awareness, the Susan G. Komen Foundation®^iv served as my source for the spontaneous message board data. With the object of identifying the elements most motivating the immediacy of the response, I limited my corpus to the first two forum posts opened in response to the USPSTF announcement. It was with the same theoretical goal that I focused my analysis of reply threads to the first twenty-four hours following each initial post. Each thread captured significantly distinct elements of the population’s response. The first opened the dialog and invited a broad, subjective response from the other forum members:

“No mammos til 50? OUTRAGED!” – November 16, 2009 4:56 PM

Just got home and saw this on the news. The US Preventative Task Force is now recommending that women do not get mammos until they are 50 and then only every 2 years. The lives that mammos in the 40’s saves is TOO SMALL to make a difference. If I didnt^v  get mammos in my 40’s, I could be dead by now along with a lot of other sisters.

Anyone heard or read anything about this?

Betsy, ^vi 51, from NH

The second, published just over an hour after the first, conducted an informal—quantifiable if not objective—poll of message board members:

SURVEY – how old were you?? – November 16, 2009 6:14 PM

Don’t want to bump down Bunky’s Mom’s^vii post BUT 2 questions:

1) How old were you when diagnosed?
2) Was it discovered due to screening?

Nancy

The second half of this essay examines the stylistic differences in each post and their resultant replies. The Appendix provides a sample collection of original forum threads.

Of particular benefit to this analysis are the unique characteristics of message-board communication. Online forums have become an intricate system of support, unification, and information transfer for many breast cancer victims. First, the dialogic nature of the forum genre shows how members of this simulated community talk about breast cancer: which thematic experiences are most relevant, which contextual elements contribute to the responses and how stylistic forms of address and narrative structure uncover an intricate interactive system of ideologies, values, and epistemological hierarchies. Secondly, Komen is a membership-based message board system; anyone wishing to comment must formally join the online community. While all posts are publicly visible, only members may participate in the virtual dialog. The result is a “private” group setting where members can have informal discussions about the issues most socially relevant to their community.

From my interactions with forum members, I understand that they feel differently about such collective classifications as “community” and “group.” Some breast cancer survivors^viii are proud to be considered as part of a community/group while others resist these terms as isolating them from society’s healthy, “normal” members. While not assuming any unilateral absolutism among the women, I justify liberal use of the term “community” with its frequent appearance in published, official discourse of respected and recognized breast cancer research and advocacy groups. My application of the term “group” follows Alan Dundes’ (1977) definition of a folk group as any group made up of two or more people with at least one thing in common.

The term “culture” in this context is a bit more problematic. Respectfully, I acknowledge that the disease of breast cancer is not a culture or a tradition; however, I assert that the breast cancer awareness movement has cultivated a system of group beliefs, ceremonial fund raising and awareness events, shared terminology/battle cries and physical markers symbolic of group membership that exhibit distinctly cultural elements.  Reflexive of Clifford Geertz’s (1973) definition of culture as “webs of significance,” these shared elements (examined below in “Breast Cancer Patients as a Folk Group”) create a structural frame that influences the folk function of breast cancer ideologies and the rhetorical analysis of patient discourse.

Finally, I acknowledge that male patients also suffer the traumas of breast cancer. Because the 2009 USPSTF recommendations do not apply to male breast cancer, I do not include male patients among my demographic for this study.

Mammography as Ritual Emergence: What Women “Knew” About Breast Cancer Prevention

The liminal periods of female maturation often involve clinical response to natural physical passages. The first menstrual period comes with the first maxi-pad, then the first tampon, and eventually, the first choices about sex and birth control. Traditionally, age eighteen brings the first pap smear and learning how to do one’s first self-breast exams. Pregnancy and childbirth bring a new host of medical examinations and responsible diet changes and prenatal vitamins. Menopause means a loss of childbearing ability and the possibility of hormone treatments. These events increase personal agency in health maintenance.

A woman’s first mammogram fits within these life cycle rites of passage as another in a long list of uncomfortable but voluntary and unifying female health experiences. Yet, mammography has only become a ritualized, communal experience since the late twentieth century. This elevation of mammography as a trusted ritual is inextricably linked to female agency and social activism. Noting that women in the 1960s and 70s knew little about breast cancer detection and treatment, Stephanie Hartman (2004) calls breast cancer the “last frontier of feminist silence.” She speculates that since mastectomies (i.e., loss of breast) highlighted a woman’s vulnerability “at a time when the ‘natural’ body was prized and nature embraced as a source of female power, it may have been especially difficult to see cancer as anything other than a fall from wholeness, a diminishing of self” (156-157).^ix Hartman’s comments speak to the reality of breasts as culturally meaningful markers of femininity, signifiers of sexuality and maternal identity. A mastectomy threatened a woman’s sexual wholeness and was often a taboo discussion topic.

Recalling that mammography screening was “not done for women under 40 in those days,” 23-year survivor, Rena, remembered crying at her first mammogram in 1986. She described it as “one of the most upsetting experiences of [her] life” because the mammography technician, “a young woman,” ignored her tears and “almost acted angry that [she] was crying” (forum message to the author, November 30, 2009). By pointing out that the technician was both female and young, the message gives the sense that women should have a greater empathy for the situation than men and that youth may have allowed the tech a communicative distance that she did not have to cross. Revisiting the opening quote to this essay, Adrienne Rich’s poem “A Woman Dead in Her Forties” echoes this restrictive lack of communication about breast cancer during the 1970s. Rich notes that she would have touched a finger to her sister’s post-mastectomy chest, but women “never did such things” (Rich 1993: 58). Pre-1992, there was no official discourse about the disease and no personal dialog available for women who felt isolated by the disease.

It is significant that women like Rena and Rich lived through the feminist movement of the 1960s and 70s. They would have been the first generation impacted by the original 1992 USPSTF recommendations that established age forty as the start of women’s annual mammography screenings and officialized the dialog between patients and doctors. These women would have experienced both the early ignorance about breast cancer and the 1980s and 1990s when the Susan G. Komen Foundation® and other vocal advocacy groups ushered in calls for social awareness and greater attentiveness to breast cancer diagnostics.^x As activist efforts spread, so did belief in the awareness movement. For three decades of women’s rights activism, the original 1992 US Preventive Services Task Force recommendations would have been a huge victory in the struggle for recognition from a medical community that had so often dismissed or misrepresented their health issues. This triumph legitimized the fundamental beliefs of the awareness movement. Women now knew that breast cancer was a battle, that early detection was key to winning the battle, that mammography was a life-saving weapon in this fight, that women could discover their own tumors through monthly self-examinations, that women were active agents in their personal health care, and that individually and collectively, women had the power to limit the devastation of breast cancer.

Significance of the 2009 Announcement

The 2009 task force recommendations to decrease the frequency of mammographic testing and eliminate instruction for self exams threatened to de-legitimize nearly twenty years of confidence and unravel the long-standing expectations of women who had grown up in a breast cancer aware world. Particularly, for women within the breast cancer community, these adjustments to the 1992 standards reignited an atmosphere of disenchantment and confusion and represented a continued misrepresentation of women’s health issues by the medical field.

The first Komen thread started in response to the announcement captured this disillusionment:

“No mammos til 50? OUTRAGED!” – November 16, 2009 4:56 PM

Just got home and saw this on the news. The US Preventative Task Force is now recommending that women do not get mammos until they are 50 and then only every 2 years. The lives that mammos in the 40’s saves is TOO SMALL to make a difference. If I didnt  get mammos in my 40’s, I could be dead by now along with a lot of other sisters.

Anyone heard or read anything about this?
Betsy

Although Betsy’s post shouted its entry onto the forum, pronouncing outrage with all capitals and an exclamation point, the content of her message registered more disbelief and confusion than rage. She emphasized the task force’s ruling that lives saved were “TOO SMALL to make a difference.” She considered how these recommendations might have affected her own diagnosis/treatment and echoed a common feminist concern for her “other sisters”—conceivably the larger metaphorical sisterhood of all women. Her closing interrogative sentence suggests she is disoriented and looking to her community to help make sense of the news.

At first, Betsy’s open forum generated more frustrated responses than concrete answers. Jennifer expressed a cynical concern that the new recommendations might take diagnostics “back to what it was in the 70’s where a breast cancer diagnosis led to an automatic radical mastectomy” (“Re: No mammos til 50? OUTRAGED!,” November 17, 2009). Message board member Jean S, expressed her fear women that would lose their personal agency in health decisions:

I’m sure that I am not much different than many of you when they refer to the ‘unnecessary biopsies’ and how that pertains to us.  I had 7 total.  It was the 7th one that was cancer.  So maybe I had 6 removed prior that were due to mammogram detection and at the time was advised to have them removed when in fact they didn’t need to be.  Or did they?  Who knows.  But I had a choice.  I had screening available and insurance that paid for the service.  That is what cannot be taken away!! We have to have the right to choose based on physician recommendations. (“Re: No mammos til 50? OUTRAGED!,” November 17, 2009, emphasis mine)

Jean S’s remarks display the personal, dialogic form that is common on the message board. Her “I” speaks directly to the other forum members, making an assumption of their inclusiveness: “I’m sure that I am not much different than many of you” and how “unnecessary biopsies…pertain to us.” Jean S assumes a collective concern not for overly aggressive medical treatment but rather the loss of a woman’s “right to choose.” Kim mirrored Jean S’s concern “…after finally empowering women, they took it away” (forum message to the author, November 30, 2009). Breast cancer’s socio-political history seemed to make maintaining the current level of proactive treatment more susceptible to legislative influence. Imbedded within the forum dialog were various political conspiracy theories, speculations of funding from insurance lobbyists, rationing related to health-care reform and “Obama care,” rumors about population control. Yet, even these more inflated claims continued the recurrent theme of fear and loss of power and exposed a very real communal vulnerability.

To the women on the message board, the USPSTF announcement read as new edition in a cyclical history of medical professionals undervaluing women’s rights issues. Some informants identified this mistreatment as a driving factor behind their frustration. They acknowledged feeling insulted by the USPSTF’s use of the word “anxiety” as justification for the decrease in mammography testing. Jeanette W said she did not have any anxiety and that getting mammograms gave her a “peace of mind.” She proclaimed, “I fully intend to get mammograms every year, even if I have to pay out-of-pocket.  The cost for treating breast cancer (monetary, emotional, etc.) is FAR greater than paying for annual mammograms and potentially catching the disease early on…” (e-mail message to the author, December 10, 2009). Katie123 admitted feeling anxiety but remarked that “it was well worth the anxiety” to have the cancer out of her body (forum message to the author, December 3, 2009).  Linda M connected the used of the term anxiety to assumptions of female weakness, a twenty-first century equivalent to prescribing fainting couches:

I feel pretty strongly that the gov[ernment] has pretty much ignored women’s issues as far as medicine is concerned for as long as I can remember. Not until we stand up and YELL do they do anything towards these issues. Why they are making these recommendation changes tells me once again that they think women are not strong enough to handle the stress that goes along with making sure we are cancer free….” (Linda M., e-mail message to the author, December 10, 2009)

 

Twenty-year survivor Amanda^xi builds on the above sentiments that women should be responsible for their own anxiety. Raising questions of legitimacy, she declared a loss of respect for the physicians on the task force:

What the task force did was, in one fell swoop, undermine all that we have been told to do for many years now.  There was no oncologist on the task force and their attitude was patronizing to women….And why do they not want women to find breast lumps.  And what gives them the right to determine how anxious I should be.  The bottom line should be saving lives…. (Amanda, forum message to the author, November 30, 2009)

In addition to the apparently ill-advised assumption of their role as protectors of female “anxiety,” the task force used a methodological foundation that ostensibly ignored the needs of its patient audience. As referenced in Amanda’s quote, the 16-member task force included not one oncology or radiology specialist (United States Preventive Services Task Force 2009). The appointed experts based their findings solely on published scientific scholarship without any input from breast cancer patients (Kolata 2009). In light of Amanda’s remarks and Jean S’s proclamation that women should have a voice in their health maintenance, the USPSTF’s efforts at objectivity demonstrated an egregious disconnect between what the task force members thought most relevant and what breast cancer patients believed most valuable.

The Fallout: A Search for “Truth”

Amid the emotional reactions and expressions of disenchantment there developed at once an increase in the group’s desire for information and a shift in what group members considered a reliable knowledge source. Authority figures, such as physicians, politicians, and insurance companies, seemed to be sending mixed messages. The communal response was an increased interdependence and belief in women’s ability to educate themselves. Note the progression of shirley caya’s post:

Hi Tricia The powers that be Know  they dont care. makes me sick to my stomach.. The very ones that advocated early screening suddenly have discovered no need??? The last few posts alone  ARE PROOf Screening  should not be put off till [age 50]>>> Bottom line is  the $$$$..I have an appt. with my  primary care Dr. early Dec. I have many ques.  I am going to ask him…should be interesting….Its scary when you reach a point of not trusting anyone isnt it??The ins. co. are raising thir costI could write a book    lol (really not funny) we ALL HAVE  to voice an opinion) well must go .be well  Tricia  I will be sending you an e-mail I did read your last Post…. KEEP the Faith thanks for listening. (“Re: No mammos til 50? OUTRAGED!,” November 17, 2009)

The efficient shorthand and informal quality of online communication comes through with frequent symbols, redundant punctuation, abbreviations, all-capitalization emphasis. shirley caya addresses her message directly to another forum member allowing for greater informality but also highlighting the intimacy with which group members often interact. [Note that shirley caya promises to send Tricia a private e-mail.] It is within this personal setting that shirley caya seeks out a place to put her shaken trust. She admits being confused that the “powers that be,” “the very ones that advocated the early screening,” [the 1992 USPSTF] could change their mind. Although the task force examined nearly two decades worth of research, the discovery felt “sudden” and runs counter to the “proof” she read in the forum demographics. She set an appointment with her personal doctor as a default source of information but does not appear to have high expectations for that visit, “should be interesting.” Her comment that “Its scary when you reach a point of not trusting anyone isnt it??” is particularly revealing. She addresses the question to a speculative, second-person “you” rather than an overtly inclusive “we.” Since she has an announced audience for this message in Tricia, the “you” also opens the question to the other, passively involved members reading her post.  She invites them to question who they trust. Left on its own, the question could indicate that the audience (i.e., Tricia, the forum readers, shirley caya) is really at the point of “not trusting anyone”; however, she follows the claim of disillusionment with a unifying “we”—“we ALL HAVE  to voice an opinion.” This culminating plea for involvement indicates that trust still exist in the collective power of the forum members.

Facing unreliable and potentially dangerous external data, the community returned to trusted, unifying tools of the past—calls to sisterhood and group solidarity and a belief in social activism. Wrote forum member Debbie P:

…We will have to watch closely and VOICE our opinions ladies!  I prayed that the “news” coming out was to start mammo’s at 30 instead of 40…. but NO it is going the other way….. well now we have it – we are going to take a royal screwing on this one.  We MUST come up with a better plan or we will see ourselves and our sisters murdered due to lack of medical care… I’ll be watching and taking notes tonight and now I see where my “giving back” efforts must be headed…. (“Re: No mammos til 50? OUTRAGED!,” November 16, 2009)

A Preventive Services report lowering the recommended age from forty to thirty, as Debbie P had hoped, would have re-affirmed group beliefs in the value of mammography. With the actual report seeming to undermine this faith, the group needed to “watch closely.” In addition to taking her own notes, Debbie P placed the burden of responsibility on the entire group: “We MUST come up with a better plan.” My personal correspondence with group members identified a dependence on the community for knowledge, updates on research and press releases, etc., as an important part of forum dynamics. “…I don’t own a pink ribbon, but I value the information this website provides, as well as the encouragement of people here to share information” (Cindy14853, forum message to the author, December 4, 2009). “The more informed decisions and actions a woman can participate in, the more she is involved in the process, and the recovery” (Kim, forum message to the author, November 30, 2009). Embedded among the forum replies were websites links directing members about where to direct their public activism, source information for anyone seeking a complete list of the names and affiliations of the Preventive Services task force, quoted news stories about connections between mammography and the health care bill, and streaming reports of formal statements released by breast cancer research organizations. Even as the official dialog threatened the status quo within the breast cancer community, the unofficial discourse revealed full confidence in the group’s systematic ability to respond with self-reliance and collective research. Within this community, collaborative information exchange was a factual matter of life and death.

Beyond Pink Ribbons and Walkathons: What Academics “Knew” About Breast Cancer

What then was the disconnect between the USPSTF’s methodological process and what constituted “reliable” data for breast cancer patients? The answer is less a consideration of scientific veracity and more a comment on epistemology. For the women on the Komen message board, narrative delivered by the professional experts was less valuable than the truths of their personal experiences. This fact became evident in the community’s tendency to privilege testimonial proof and over “expert” analysis.

I am disgusted at these new guidelines.  I just saw Dr. Susan Love^xii on the NBC Nightly News and I thought she would be opposed to the guidelines but shockingly enough she stated the these guidelines are what everyone else in the world has been doing for years.  She stated that mammograms are not a good tool in young women 40-49 because of the density of the breasts which can lead to unnecessary testing.  In addition, she stated that mammograms where more “accurate and better at 50” (her words).  I’m sorry but I don’t agree.  Look at all the women on this site between the ages of 40-49 who if not for mammograms would not have known they had bc. These new guidelines are just wrong. (Toni, “Re: No mammos til 50? OUTRAGED!,” November 16, 2009)

Toni’s message reports a clear, precise statement, delivered first-person from a known breast cancer professional. She even quotes Dr. Love directly, showing her complete understanding of the facts. By all indications, Dr. Love’s appraisal of the USPSTF recommendations is credit-worthy. Yet, Toni wholly dismissed the doctor’s assessment, elevating folk experience above professional expertise and relying instead on the demographic “proof” of her fellow forum members.

Both the official discourse and the dialog among the breast cancer patients demonstrated a desire to speak from a position of truth. The diachronic nature of discourse production within the breast cancer community—from a time when talks of breast lumps and mastectomies were taboo to a time where women organize entire communities for information sharing—solidified a system of social values, the ideological “truths” about cancer detection. Their socio-political history had proven that activism and group unity could influence legislative change. Through individual experience and narrative testimonial, women knew to trust mammography and self exams; this personal proof also allowed Toni to know with certainty that the task force and other official discourse were wrong. In “Why Should a Knower Care,” Vrinda Dalmiya (2002) defines the concept of “virtue responsibilism,” asserting that individual beliefs are considered epistemologically good only if they follow the accepted motivations and conventions of the community (46). Because they countered accepted communal beliefs, the task force recommendations (and Dr. Love’s opinion) could be ruled “disgusting,” “shocking,” and epistemologically “wrong.”

Dalmiya’s “virtue responsibilism” may also explain why the Susan G. Komen FoundationÒ was viewed amongst the group as a reliable source of information. The Komen organization participated directly in the folk breast cancer discourse, using the forum to remind the women of the fact that Komen CEO Nancy G. Binker is one of them: “Nancy G. Brinker promised her dying sister, Susan G. Komen, she would do everything in her power to end breast cancer forever” (“About Susan G. Komen for the Cure®,” message board post, November 17, 2009). Although this is official discourse and not the spontaneous online forum communication, the Komen Administration re-printed its formal statement on the message board in response to “No Mammos til 50-Outraged!” and responded directly to a forum member with an e-mail and a website link to help the woman more involved. Komen secured its organization’s trustworthiness by participating in the forum’s intimate communication and acknowledging its communal experiences.

Most official discourse, however, displayed a strong orientation toward the statistical evidence. As with Dr. Love’s assessment, this evidence threatened to create a policy to be imposed upon the group without giving the community a say in the decision. When asked expressly what she would want the academic community to know about the experience of breast cancer, Rena acknowledged that she, as a breast cancer survivor, would like to be treated as more than a scientific diagnosis:

We are a group, but we also are not. We are tens of thousands of disparate souls who are drawn together by one common tragedy. If we have a culture, I think its one based in fear and isolation….I believe that, initially, it has less to do with what we have in common than with how we are different from the rest of the world….I think what I’m asking [is that you] let the academic world know that we are not a nameless, faceless ‘group’…. I just want you to be careful not to treat women with breast cancer in the same way that the panel did—as a generalization. (Rena, forum message to the author, December 1, 2009)

Rena captured the isolation of breast cancer but also identified ways in which the task force further secluded the group by not respecting their subjective experiences. She notes that authorities outside the community had the luxury of generalizing—an emotional distance that prevented they/the panel/the professional from knowing what is actually involved in the way that Rena/I/us/we know. She voiced a desire for recognition, a belief that decision-making officials should consider what she and the other women with breast cancer endure.

Breast Cancer Patients as a Folk Group: Toward and Understanding

Bringing the values of the breast cancer community into a larger academic awareness requires a more complete grasp of their epistemological process, an appreciation for how the group constructs truth and establishes reliability among its members. Forum posts revealed the importance of folkloric elements in forming group consciousness including expressed feelings of family, informal storytelling, a sense of hierarchy and experienced-based wisdom, and shared communal language. The most recognizable symbols of breast cancer awareness were often completely absent from online discussions. The color pink, for example, is largely accepted as the international symbol of breast cancer awareness and is one of the most visible signs of the movement.^xiii Yet, not all members embrace pink as a symbol. Some dislike the seemingly pervasive reminder of their struggle:

Some days I’m tired of the whole thing. Other times I don’t mind talking about it. I am so tired of the ‘Breast Cancer’ awareness month of October….I do not wear the “pink” bracelets, do not have the ribbons on my car and do not have the “pink” things hanging in my car any longer. Do not get me wrong, cancer is terrible and it is a mind boggling experience that I hope you NEVER have to deal with. The words ‘you have breast cancer’ will always be in my head. (Mary S., e-mail message to the author, December 9, 2009)

Mary S’s statement admits an exhaustion often overshadowed by the publicity and fund raising efforts of the pink revolution. Pink ribbons are incomplete representations that she “no longer” embraces. Instead, she referenced a more intimate moment of awareness: the first time she heard the words “you have breast cancer.” For many breast cancer patients, the moment of diagnosis seemed to be the defining line between public commercialism and personal understanding.

Perhaps the most sobering illustration of this event’s emotional significance can be seen in the second forum thread:

SURVEY – how old were you?? – Monday, November 16, 2009 6:14 PM

Don’t want to bump down Bunky’s Mom’s post BUT 2 questions:
1) How old were you when diagnosed?
2) Was it discovered due to screening?

Nancy

Nancy’s informal “SURVEY” addressed an exclusive audience of only breast cancer patients. The questions implicitly recognized the diagnostic moment as a stoppage of time, a normative test that assumed the moment of diagnosis as an inseparable part of group knowledge. Compared to the all-caps “shouting” of responses to “No mammos til 50? OUTRAGED!,” forum members replied to this second thread with almost reverential quiet.

Monday, November 16, 2009 6:17 PM

1) 44
2) Yes – Mammogram
Lori

**********

Monday, November 16, 2009 6:28 PM

I was 42 years old. Found by Mammo. Started at age 30 due to mother’s history. She was 41 when diagnosed. She found her lump herself.

MomNmeBCSurvivors

**********

Monday, November 16, 2009 6:46 PM

 

age 49 by a routine mammogram

Pink Warrior

**********

Monday, November 16, 2009 6:51 PM

I was 46 and  found the lump myself!

Tricia Keegan…From Ireland

The posts continued in this manner with very few women expanding their responses beyond age and method of detection. This forum was one of the most active on the message board with members replying for three months after the opening thread and over one hundred total participants.^xiv Women seemed to want to share their number, perhaps as a way to be counted and made relevant. Nancy’s poll offered perspective on the USPSTF topic, turning emotional assumptions into tangible realities, helping the women gage the validity of their outrage and giving their anger quantifiable meaning. However, the ceremonial tone with which the women pronounced their replies and the relatively widespread participation turned this collection of responses into a formal show of solidarity: We understand your question. We respect what it is asking. We are a part of this community because we each know our individual answer.

Thus, the truths of breast cancer (i.e., the treatments, surgeries, side effects, psychological impact, etc.) manifested in the most invasive shared experiences. Members of the community identified cancer as a disruption. They expressed feelings of isolation and a lack of wholeness after mastectomy surgery. In addition to these emotional and physical traumas, the women acknowledge the importance of friendship and solidarity. They identified the Komen message board as a place where they could re-create a sense of belonging lost when their diagnoses separated them from the communities in which they had lived and worked. Considering the importance of the Komen message board, Joyce wrote, “I don’t know what I would have done without the community of women who surrounded me with love and advice, and a safe place to rant and rave and cry…” (Joyce, forum message to the author, December 1, 2009). In another post, Rena furthered Joyce’s notion of the forum as a refuge, “Once we come together—at a place like this site—the safety and familiarity we feel makes us feel like family” (Rena, forum message to the author, December 1, 2009). Both women emphasized safety as a primary benefit, a “place” where they could ask questions and admit fears and feelings without judgment or burdening loved ones. With such reliance on this social network, it becomes understandable why it was the first place many of them turned for information and camaraderie following the task force announcement and why this dialog so well reveals the ideology behind their coping strategies and methods for defining membership and worthiness within the group.

With personal experience valued above objective statistics, personal narratives emerged as expressions of communal beliefs. Anecdotal stories countered task force conclusions and reinforced group knowledge and codes of behavior. The mantra that “early detection and mammograms save lives” often appeared in the dialog like a ritualistic recitation of beliefs. In angry defiance of the task force statement, members expressed their confidence in mammographic screening often to the point of speculative lore. Sammie remarked that she was “so upset” because she “would be dead” if she had followed the 2009 recommendations (“Re: No mammos til 50? OUTRAGED!,” November 16, 2009); “49yr old Mom of 3 TEENAGERS” discovered her cancer at forty-seven doing a routine self exam but proclaimed she was “confident the mammo would have found it if [she] had not” (“Re: SURVEY—how old were you??,” November 16, 2009); Lori, whose mammogram at 44 found two early-stage but fast-growing tumors, believed she “might not have made it to [her] 50th birthday” (“Re: No mammos til 50? OUTRAGED!,” November 16, 2009); Lisa Long discovered her tumor through self examination at the age of 43 and declared, “I have no doubt if I waited until age 50, I wouldnt be here today” (“Re: SURVEY—how old were you??,” November 17, 2009); and MaryJo, diagnosed at 44, believed, “If I had waited until age 50, I could be in a pine box” (“Re: SURVEY—how old were you??,” November 17, 2009). In response to the USPSTF recommendations, these narratives helped contain the threat with reassurances that the structure on which breast cancer awareness was formed was reliable, strong and, most importantly, valid.

At the extreme, the tone of these posts reflected an almost panicked fear that breast cancer is preying on young, vibrant women under 40. Occasionally, conscious storytelling and myth-making took on an exaggerative quality that pushed the narrative into the realm of urban legend:

I was diagnosed 2 months after my 50th birthday….by a mammogram. …I was 2 months late last year due to Hurricane Ike, or it would have been caught when I was 49.  Maybe then it would not have reached the lymph nodes. (Debbie P, “Re: SURVEY—how old were you??,” November 16, 2009)

My cousin missed one year of a mammogram she was faithful every year but missed as she was away for the winter. Well she felt a lump had that mammogram and she had a golf ball size tumor she was 65 years old. She had mastectomy,chemo and radiation. Had she not missed that mammogram she said the tumor would have been half the size….(Judy, “Re: SURVEY—how old were you??,” November 16, 2009)

For Debbie P and Judy, mammography held almost magical healing powers. Within the community, these histrionic narratives functioned as cautionary tales warning of dangers of missed mammograms. Most commonly though, members expressed their frustration with an effort at impassioned but relatively rational dialog in which identity forming and establishing an online ethos played significant roles. For a community reliant upon independent information sharing, speaker reliability was crucial. A loss of credibility meant a loss of rhetorical effectiveness. Narratives have a biographical nature that increases their persuasive power because they are real-life experiences.

Language, too, became a subversive, folk tool. The forum community had created its own breast cancer “language” with a blending medical jargon and communal vernacularizations. Participant signatures often read like medical résumés, almost a breast cancer pedigree, detailing illness histories and treatments with tangible exactitude. See, for example, how Betsy and Nancy sign their initial Komen forum posts:

Betsy, 51, from NH
Stage I, grade 2 IDC. ER/PR +. HER2/neu -. Lumpectomy 4/30/07. 1.4 cm tumor, 4 nodes, all negative. Oncotype score 17. 4 TC done 9/18, 33 rads-done 12/6/07. Arimidex for 5 years. TailorX clinical trial. 4/08/09 TWO YEARS CANCER FREE!

(“No mammos til 50? OUTRAGED!,” November 16, 2009)

Nancy
DX 7/15/09, IDC at age 47
Tumor 3.5 x 2.5 x 3 cm
ER/PR +, HER-2 –
Right Modified Radical Mastectomy w/expander 8/27/09
Stage II, T2, N1 (3 of 9 positive)
BRCA1/2 Negative with strong family history
4 Dose Dense A/C DONE!!! 4 DD Taxol start 12/1/09
28 Rads, Winter 2010
Prophylactic left mastectomy and ooph 2010
Longer term – Tamoxifin (2 yrs?) and AI (7 yrs?)

(“SURVEY—how old were you??,” November 16, 2009)

These lists continued the narrative function by legitimating an individual’s right to speak before the group. There was an emphasis on the length of time that a woman has survived or underwent treatment, almost an unspoken hierarchy of respect for women that had more details on their signature or more years in the fight. In some ways, it defined a woman’s “worthiness” as a participant but also allowed for an empathetic awareness of where the she had been in her journey. For an outsider, a non-patient, an academic wanting to gain a better appreciation for the needs of breast cancer patients, the juxtaposition of these signatures next to the women’s personal narratives provides a humbling reminder of the human voice beneath the cancer.

The texts also demonstrate an assumed medical expertise at the folk level. Doctors, nurses, and radiology technicians imposed scientific jargon on the community from the moment of diagnosis. Breast cancer patients took on ownership of these terms, blending medical and lay terminology and granting themselves a form of medical authority: “There are many things ( e.g., lymphedema, antinausea drugs, surgical drains, expanders, nipple reconstruction, reconstruction options, chemobrain) that no one but one of these group members can fill you in on…” (Cindy14853, forum message to the author, 4 December 2009). Further efforts to control communicative structure included vernacular abbreviations expressed within the collective discourse. Breast cancer became “BC” with both letters nearly always capitalized. Mammograms were often referred to in shorthand: mams, mammo, mamo, mamm. BSE stood for “breast self exam” or SBE for “self breast exam.” These abbreviations are certainly practical for enhancing the speed of online communication; however, they may also serve a linguistic means for countering stress and helplessness. Changing the words, cutting them and making them their own subverted their controlling power. This, along with the appropriation of medical language asserted, a fluency in the technical language of breast cancer and shaped a community with its own form of communication.

Clearly, this group had cultivated an authoritative voice related to the treatment of breast cancer, a voice grounded in first-hand experience. The result was a greater ethical accountability to the individual. Forum posts like those in reply to Nancy’s “SURVEY” verified that women diagnosed with breast cancer before age fifty were a significant portion of the population even as the USPSTF scientific conclusions label them statistically insignificant. Yet, the overwhelming sentiment was that even if only one woman belonged to the affected group, it validated the community’s outrage and confirmed the need to start routine mammography testing at forty:

So we fight in the…way that defines us as feminine—by nurturing and protecting each other.  We care about that “1 woman in 1904”^xv who will die in her 40’s without screening–it’s not a statistic to us, because we know it can be our friend or sister or daughter or niece.  And we no longer will sit still for the white-coated doctor to tell us not to worry our pretty little heads by doing a self-exam, or pushing for a biopsy because something doesn’t feel right. (Joyce, forum message to the author, December 1, 2009)

They care about the “1 woman in 1904” because they know her. The implication is that the USPSTF did not care because they did have that personal knowledge. “… Are you kidding me, what if that women is their mom, sister, daughter, aunt……maybe then they wouldn’t be so caviler about it…” (“Re: No mammos til 50? OUTRAGED!,” November 16, 2009). ^xvi Joyce’s comment above classified this caring as a distinctly feminine way of “nurturing and protecting each other.” While the patient may have had to reduce her role as caretaker for her family due to her illness, her experience with the disease seemed to give her a greater responsibility to protect other women at risk. The shared traumatic experiences of breast cancer shaped a communal morality. Defending what is right meant protecting the elements most intimately valuable to the community—family, group allegiance, active healing, safety, stability, and the primacy of life and over scientific logic.

Conclusion

Since the modern women’s movement, breast cancer awareness has become emblematic of a new culture of women who assume more overt agency in their health issues. They learned to trust in the effectiveness of mammography and self exams and embraced those diagnostic measures with proactive resolution. Years of awareness and prevention discourse fostered symbolic kinships and group identity. When the 2009 US Preventive Services Task Force mishandled these values, the battle for women became not only a fight against cancer but also against a medical system that appeared inattentive and dismissive of their personal experiences. In the face of this new mistreatment, forum members re-asserted their fundamental beliefs and sought wisdom, reassurance and support from their trusted online community. Beneath the frustration and outrage lay a deep interconnectedness, a reverence for shared cultural experience, and an intricate platform for self-reliant activism.

Immediate fallout from the announcement resulted in adjustments to the official discourse. On November 18, HHS Secretary Kathleen Sebelius issued a statement acknowledging mammography as a “life-saving tool” and admitting that the task force recommendations “have caused a great deal of confusion and worry among women and their families” and instructing women to keep “doing what you have been doing for years” (U.S. Department of Health and Human Services 2009).

By November 20, only four days after the initial task force announcement, the U.S. Senate submitted a letter to the Senate Committee on Health, Education, Labor and Pensions “strongly” urging a hearing on the new breast cancer recommendations, and stating that the “American people deserve to know more about how this task force came to its controversial findings” (United States Senate 2009). The USPSTF issued an apology on December 2, and by December 4, in an effort “to clarify their original and continued intent,” they revised their official statement. Initially reading—“Do not screen routinely. Individualize decision to begin biennial screening according to the patient’s context and values”—the republished remarks read: “The decision to start regular, biennial screening mammography before the age of 50 years should be an individual one and take patient context into account, including the patient’s values regarding specific benefits and harms” (Screening for Breast Cancer 2009, emphasis mine). Official discourse was finally emphasizing the importance of individual agency and patient values.

Ultimately, the intent here has been to point out what can be said about the breast cancer community and the cultural dynamics of any community amidst a perceived threat to its foundational beliefs.  Analysis of the Komen forum permitted insight into an interactive social network largely overlooked by the academic (at least the scientific) discourse on the topic. The study of narrative, anecdotal evidence aids in understanding how breast cancer patients defined their epistemological framework. Certainly further research is necessary in order to improve our understanding of this and other folk discourse communities; however, the mishandling of the 2009 USPSTF announcement demonstrates the importance of moving beyond strictly scientific methodology with increased efforts toward ethnographic analysis. Importantly, neither the United State Preventive Services Task Force nor the Department of Health and Human Services made any effort to re-tract the research findings, and in truth no retraction was needed. The study was conceivably well-planned, thorough and scientifically-sound. However, the massive public outcry and the subsequent corrective statements might have been somewhat averted if the responsible parties had consciously recognized the established breast cancer awareness culture and been more respectful and empathetic towards the people most personally affected by their conclusions.

Appendix: Sample Komen Forum Data

The posts presented here represent only a small portion of a large collection of data containing more than one hundred comments. I offer this sample to present the Komen message board format in its original context, inclusive of all the personalized features and without my analytical remarks.

Member Total Posts : 440 Reward points : 0 Joined: 5/31/2007 Location: Kingston NH Status: offline

Reply to messageMessage Options No mammos til 50? OUTRAGED! – Monday, November 16, 2009 4:56 PM Just got home and saw this on the news. The US Preventative Task Force is now recommending that women do not get mammos until they are 50 and then only every 2 years. The lives that mammos in the 40’s saves is TOO SMALL to make a difference. If I didnt get mammos in my 40’s, I could be dead by now along with a lot of other sisters. Anyone heard or read anything about this? Betsy, 51, from NH Stage I, grade 2 IDC. ER/PR +. HER2/neu -. Lumpectomy 4/30/07. 1.4 cm tumor, 4 nodes, all negative. Oncotype score 17. 4 TC done 9/18, 33 rads-done 12/6/07. Arimidex for 5 years. TailorX clinical trial. 4/08/09 TWO YEARS CANCER FREE!

Samantha99 Member Total Posts : 91 Reward points : 0 Joined: 1/22/2008 Status: offline

Reply to messageMessage Options Re:No mammos til 50? OUTRAGED! – Monday, November 16, 2009 5:19 PM I just read this and I am so angry I cried.  Not only no Mammo’s under age 50, but every other year after that and not at all for older women over 74.  They don’t think DRs need to teach women self breast exams and they are also questioning whether DRs should do a breast exam. This task force said this: “While the task force recommended against doctors teaching women how to perform regular breast self-exams and concluded that there was insufficient evidence to determine whether doctors’ examinations of a woman’s breasts are beneficial, several experts stressed that women should seek medical attention if they come across any unusual lumps spontaneously”. The American Cancer Society said this: “But the American Cancer Society, the American College of Radiology and other experts condemned the change, saying the benefits of routine mammography have been clearly demonstrated and play a key role in reducing the number of mastectomies and the death toll from one of the most common cancers”. http://www.washingtonpost.com/wp-dyn/content/article/2009/11/16/AR2009111602822.html?wpisrc=newsletter So will Insurance companies now decline coverage for younger women and older women too?  I am so upset because I would be dead if I had followed those guidelines. <message edited by Samantha99 on Monday, November 16, 2009 5:20 PM> Sammie Lupus and Neuropathy DX 9-21-07 Mastectomy 10-15-07 Tumor 4.5 CM IDC Stage II, Grade 3 Triple Neg Finished 4 A&C 1-30-07 Finished Taxol 2-18-08 due to toxic reaction. TRAM FLAP 6-2-09

vegas113 Member Total Posts : 271 Reward points : 0 Joined: 11/1/2008 Status: offline

Reply to messageMessage Options Re:No mammos til 50? OUTRAGED! – Monday, November 16, 2009 5:34 PM I KNEW it was coming….. The only way Obama Care can pay for “everyone” is to CUT services….. and we ALL know where that is leading!!!  We will have to watch closely and VOICE our opinions ladies!  I prayed that the “news” coming out was to start mammo’s at 30 instead of 40…. but NO it is going the other way….. well now we have it – we are going to take a royal screwing on this one.  We MUST come up with a better plan or we will see ourselves and our sisters murdered due to lack of medical care. I’m sorry – I am so pissed off I can’t see straight…. as are a lot of you.  I’ll be watching and taking notes tonight and now I see where my “giving back” efforts must be headed…. I would like to know what Komen thinks – perhaps we can all band together and support our RIGHT TO LIVE! Debbie P in Dayton, TX Diagnosed Stage II Oct 2008 Mastectomy Nov 2008 (2 lymphs removed) After initial clean lymphs, 1 found cancerous so Lymph removal Dec 2008 – all clear Cytoxin/Adriamycin 6 rounds started 12/08 Final Chemo 4/2/09!  Femara started 4/16/09 for 5 years.

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nmb Member Total Posts : 247 Reward points : 0 Joined: 7/22/2009 Location: Turner, ME Status: offline

Reply to messageMessage Options SURVEY – how old were you?? – Monday, November 16, 2009 6:14 PM Don’t want to bump down Bunky’s Mom’s post BUT 2 questions: 1) How old were you when diagnosed? 2) Was it discovered due to screening? Nancy DX 7/15/09, IDC at age 47 Tumor 3.5 x 2.5 x 3 cm ER/PR +, HER-2 – Right Modified Radical Mastectomy w/expander 8/27/09 Stage II, T2, N1 (3 of 9 positive) BRCA1/2 Negative with strong family history 4 Dose Dense A/C DONE!!! 4 DD Taxol start 12/1/09 28 Rads, Winter 2010 Prophylactic left mastectomy and ooph 2010 Longer term – Tamoxifin (2 yrs?) and AI (7 yrs?)

LoriS Member Total Posts : 23 Reward points : 0 Joined: 6/30/2007 Status: offline	Reply to messageMessage Options Re:SURVEY – how old were you?? – Monday, November 16, 2009 6:17 PM 1) 44 2) Yes – Mammogram Lori

vegas113 Member Total Posts : 271 Reward points : 0 Joined: 11/1/2008 Status: offline

Reply to messageMessage Options Re:SURVEY – how old were you?? – Monday, November 16, 2009 6:20 PM I was diagnosed 2 months after my 50th birthday….by a mammogram. So…. I was “cancerous” during my 49th year…. the cancer was aggresive – it was NOT present on my mammogram when I was 49.  As my oncologist said – I was a “poster child” for mammograms, getting them every year.  I was 2 months late last year due to Hurricane Ike, or it would have been caught when I was 49.  Maybe then it would not have reached the lymph nodes. Thank God for mammograms…. there were no obvious lumps that would have caused a concern….. my tumors were hidden in dense breast tissue. Debbie P in Dayton, TX Diagnosed Stage II Oct 2008 Mastectomy Nov 2008 (2 lymphs removed) After initial clean lymphs, 1 found cancerous so Lymph removal Dec 2008 – all clear Cytoxin/Adriamycin 6 rounds started 12/08 Final Chemo 4/2/09!  Femara started 4/16/09 for 5 years.

MomNmeBCsurvivors Member Total Posts : 7 Reward points : 0 Joined: 11/13/2009 Status: offline	Reply to messageMessage Options Re:SURVEY – how old were you?? – Monday, November 16, 2009 6:28 PM I was 42 years old. Found by Mammo. Started at age 30 due to mother’s history. She was 41 when diagnosed. She found her lump herself.

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