Table of Con­tents | Arti­cle doi: 10.17742/IMAGE.BR.11.1.4 | PDF


Going Flat: Breast Cancer, Mastectomy and the Politics of Choice

Abi­gail B. Bakan
Abstract: Breast can­cer, if it advances, is life threat­en­ing. It is also wide­spread. My life was changed when I was diag­nosed with breast can­cer. There was much that I did not expect, includ­ing a hege­mon­ic cul­ture of “breast con­ser­va­tion.” I opt­ed to “go flat” after bilat­er­al mas­tec­to­my, resist­ing recon­struc­tion plas­tic surgery. A pol­i­tics of choice—like that demand­ed for repro­duc­tive rights—has yet to find sim­i­lar res­o­nance in the world of breast can­cer treat­ment. This arti­cle con­sid­ers recon­struc­tion hege­mo­ny and the emerg­ing move­ment to advance the choice to be, in words coined by a pio­neer­ing Face­book group, Flat and Fab­u­lous.
Resume : Le can­cer du sein, s’il se développe, est une men­ace de mort. Il est aus­si très répan­du. Ma vie a été trans­for­mée lorsque j’ai été diag­nos­tiquée avec un can­cer du sein. Il y avait beau­coup de choses aux­quelles je ne m’attendais pas, en par­ti­c­uli­er l’hégémonie d’une cul­ture de la préser­va­tion du sein. J’ai choisi d’adopter l’”option plat­te” après une dou­ble mas­tec­tomie et de résis­ter à la ten­ta­tion de la chirurgie plas­tique de recon­struc­tion mam­maire. Une poli­tique du choix—comparable à celle qui s’applique aux droits de reproduction—n’a pas encore trou­vé d’écho dans le domaine du traite­ment du can­cer du sein. Cet arti­cle con­sid­ère l’hégémonie de la recon­struc­tion mam­maire ain­si que l’émergence d’un mou­ve­ment pro­mou­vant le choix comme étant—selon les ter­mes inven­tés par un groupe de pointe sur Facebook—“plat et par­fait”!

Introduction: Breast Cancer, Mastectomy, and the Politics of Choice

Breast can­cer is scary. If it is left untreat­ed, the can­cer will advance and become a life threat­en­ing dis­ease. Accord­ing to data col­lect­ed in 2017, breast can­cer will take the lives of an esti­mat­ed 5,000 women in Cana­da per year (“Breast Can­cer Sta­tis­tics”). Breast can­cer is also a gen­dered dis­ease. While men are sus­cep­ti­ble to breast can­cer, the rate of diag­no­sis is much less than for women, with esti­mat­ed deaths at 60 per year accord­ing to the same data. These scary sta­tis­tics, how­ev­er, are not iso­lat­ed abstract fig­ures. They are also asso­ci­at­ed with polit­i­cal­ly and social­ly con­struct­ed bar­ri­ers that lim­it access to infor­ma­tion, qual­i­ty pub­lic health care, and oth­er forms of eco­nom­ic, gen­dered, racial­ized and health-relat­ed sup­port (see Lorde; Son­tag; King; Hendler; Turn­er; Bren­ner). All dis­eases demand atten­tion from mul­ti­ple dis­ci­pli­nary lens­es (con­sid­er, for exam­ple, the social and polit­i­cal fac­tors that enter into expe­ri­ences of HIV-AIDS, cholera, mal­nu­tri­tion, or the recent COVID-19 pan­dem­ic). Can­cer, how­ev­er, requires an espe­cial­ly inter­dis­ci­pli­nary analy­sis; it has proven to be par­tic­u­lar­ly entwined with and shaped by the stig­ma of death (Mukher­jee).

For those who are able to access effec­tive med­ical treat­ment, par­tic­u­lar­ly in the ear­ly stages of the dis­ease, the risk of death from breast can­cer how­ev­er drops steeply. Sig­nif­i­cant­ly, 87 per­cent of those diag­nosed with breast can­cer will sur­vive at least five years (“Breast Can­cer Sta­tis­tics”). Many will live long, healthy lives, and more­over, sur­vival rates are increas­ing. Between 2003 and 2012, the death rate declined by an aver­age of 2.6 per­cent per year, and the death rate today is the low­est record­ed in Cana­da since 1950. The Cana­di­an Can­cer Soci­ety esti­mates that between 1987 and 2012, over 32,000 can­cer deaths were avoid­ed (“Breast Can­cer Sta­tis­tics”). The rea­son for this decline is wide­ly con­sid­ered to be based on the expan­sion of cas­es that are detect­ed at an ear­ly stage, in the case of breast can­cer through mam­mo­graph­ic screen­ing and improve­ments in treat­ment options.

Most of us are touched by can­cer, either in our own health con­di­tions or through the expe­ri­ences of friends or loved ones. As life expectan­cy increas­es, one in two will face a can­cer diag­no­sis accord­ing to pro­ject­ed aver­ages. And most will live for some time even if diag­nosed with cancer—overcoming, cop­ing, or adapt­ing as treat­ments con­tin­ue to be researched and made avail­able to des­ig­nat­ed pop­u­la­tions. Impor­tant­ly, even many who have been giv­en ter­mi­nal can­cer diag­noses live long and healthy lives (Turn­er). We need to dis­so­ci­ate can­cer from pre­sum­ing an out­come of death, and begin con­cep­tu­al­iz­ing a rich and mean­ing­ful life after a diag­no­sis of can­cer.

In 2016, my life was changed when I was diag­nosed with breast can­cer. This occurred from a rou­tine mam­mo­graph­ic exam­i­na­tion, unac­com­pa­nied by any pal­pa­ble symp­toms. Sud­den­ly I became one of those sta­tis­tics. There was much that I did not expect, one aspect of which was a hegemonic—or dominant—culture of what is referred to in the med­ical pro­fes­sion as “breast con­ser­va­tion” (or “breast-con­serv­ing” surgery and treat­ment). The chal­lenges and prob­lem­at­ic nature of the hege­mon­ic cul­ture of breast con­ser­va­tion is the sub­ject of this arti­cle. I was priv­i­leged to be able to access the most advanced med­ical treat­ments avail­able; I was and remain sur­round­ed by mul­ti­ple com­mu­ni­ties of out­stand­ing sup­port; and I have now been giv­en the “all clear” fol­low­ing the orig­i­nal diag­no­sis. How­ev­er, fol­low­ing a bilat­er­al (dou­ble) mas­tec­to­my, I was also met with a bar­rage of high­ly sophis­ti­cat­ed and unex­pect­ed infor­ma­tion, and con­sid­er­able for­mal and infor­mal pres­sures, regard­ing how to cope with my treat­ment. Specif­i­cal­ly, I was repeat­ed­ly invit­ed to “replace,” “rebuild,” and “recon­struct” the absent­ed breasts. I found that my deci­sion to adapt to my new, dis­ease-free body by “going flat” brought me into an emer­gent, new polit­i­cal moment.

Surgery is the first line of treat­ment for breast can­cer. How­ev­er, as my expe­ri­ence demon­strates, treat­ment often comes along with much more than med­ical atten­tion. The Cana­di­an and US med­ical com­mu­ni­ty over­whelm­ing­ly advo­cate for breast con­ser­va­tion. But how does one respond to such a stan­dard­ized norm? It seemed to me that there should be some choice here.

My research and expe­ri­ence have indi­cat­ed that life after breast can­cer is cur­rent­ly framed accord­ing to a pre­sump­tion of breast deficit—in oth­er words, that mas­tec­to­my only means loss, lack, and absence. In my expe­ri­ence, how­ev­er, there is also much that is gained from the expe­ri­ence of “going flat”, and this needs to be under­stood for its pos­i­tive ele­ments as well as the neg­a­tive ones. Breast recon­struc­tion has been and will be a pos­i­tive and healthy option for some women. But, a pol­i­tics of choice—such as the pol­i­tics that came to mark the move­ment for repro­duc­tive choice in Canada—has yet to become the norm in breast can­cer treat­ment. Choice is con­ceived here as enabling those diag­nosed with breast can­cer to con­sid­er avail­able treat­ment and post-treat­ment options with­out pres­sure based on gen­dered and patri­ar­chal norms that ide­al­ize female breast con­ser­va­tion as the opti­mal out­come.

Advanc­ing gen­uine choice regard­ing life after breast can­cer is time­ly. Giv­en that more women are liv­ing after treat­ment of breast can­cer, the polit­i­cal and social con­texts that shape treat­ment and post-treat­ment options—choic­es—are start­ing to be revealed, bring­ing the hege­mon­ic atti­tude towards breast recon­struc­tion into sharp relief and con­test. The remain­der of this arti­cle is divid­ed into two parts: the first crit­i­cal­ly exam­ines the hege­mon­ic pro­mo­tion of breast con­ser­va­tion and recon­struc­tion; the sec­ond turns to Flat and Fabulous—a name drawn from a Face­book sup­port group for women who choose not to have recon­struc­tion after breast can­cer surgery—and the pol­i­tics of choice. The arti­cle con­cludes with some con­sid­er­a­tions for future advo­ca­cy and research.

Breast Conservation and Reconstruction Hegemony

A moment of reflec­tion and per­son­al ethnog­ra­phy might assist in con­tex­tu­al­iz­ing this argu­ment. Once I made it clear that I was not inter­est­ed in recon­struc­tion, I was informed by a car­ing prac­ti­tion­er asso­ci­at­ed with the hos­pi­tal where I was treat­ed that there was an offer to “change your mind at any point.” There is appar­ent­ly no statute of lim­i­ta­tions in Ontario for pub­licly insured recon­struc­tion fol­low­ing breast can­cer. I found myself sur­round­ed by expe­ri­enced and expert breast can­cer pro­fes­sion­als who con­firmed this—doctors, interns, nurs­es, social work­ers, recep­tion­ists, and vol­un­teers. At almost every turn, I was asked if I want­ed to have recon­struc­tion dur­ing or after surgery, even though I had made it abun­dant­ly clear that I did not. There was obvi­ous­ly an insti­tu­tion­al­ized direc­tive to “inform” patients about recon­struc­tion, repeat­ed­ly, and even after it was record­ed that such infor­ma­tion had been duly deliv­ered. I felt that there was a sort of col­lec­tive, unspo­ken pro­fes­sion­al anx­i­ety about my deci­sion to live as an adult flat-chest­ed woman. I was informed, again repeat­ed­ly, that I would like­ly regret my deci­sion. This is part of a gen­er­al cul­ture of pater­nal­ism that is nor­mal­ized in the breast can­cer med­ical world (see Lagna­do). I was sur­prised, how­ev­er, to learn how deeply this pater­nal­ism has affect­ed treat­ment options for breast can­cer. My choice to “go flat” was, appar­ent­ly, at best unusu­al and unfa­mil­iar, at worst con­sid­ered self-destruc­tive. While this was not eas­i­ly trace­able to any sin­gle source, the gen­er­al cul­ture of “offer­ing recon­struc­tion” was clear­ly the norm among prac­ti­tion­ers. The aim was to ensure that I was real­ly, ful­ly, tru­ly informed of the option to have new breasts “recon­struct­ed” either from trans­plant­ed tis­sue (autol­o­gous recon­struc­tion) or using breast implants.

I was invit­ed short­ly after diag­no­sis to attend an annu­al event that takes place in over 30 cities across Cana­da and the US: Nation­al Breast Recon­struc­tion Aware­ness (BRA) Day (“BRA Day”). I attend­ed the Toron­to event in Octo­ber 2016, and learned a great deal, not least about hege­mon­ic breast con­ser­va­tion. The event fea­tured prac­tic­ing plas­tic sur­geons who spe­cial­ized in the pro­ce­dure, and women who had recon­struct­ed chests, in well-planned pub­lic pre­sen­ta­tions. BRA Day also fea­tured numer­ous infor­ma­tion booths as well as a “show and tell lounge,” where women with recon­struct­ed breasts shared shirt­less sto­ries. Sig­nif­i­cant­ly, Nation­al Breast Recon­struc­tion Aware­ness Day traces its ori­gins to an ini­tia­tive by a Cana­di­an plas­tic sur­geon, Dr. Mitchell Brown, in 2011. Brown is cred­it­ed with coin­ing the expres­sion “close the loop on breast can­cer,” now a brand slo­gan for BRA Day (“Breast Recon­struc­tion Aware­ness Day” 1).

The event, inter alia, is pre­sent­ed with a tone of joy and cel­e­bra­tion. It for­wards the poten­tial for new­ly built “breast mounds” to redress the sense of loss that comes from breast deficit. For those who have already con­clud­ed they are seek­ing recon­struc­tion, it is like­ly very use­ful. How­ev­er, it is also seem­ing­ly untrou­bled by decades of fem­i­nist and inter­sec­tion­al analy­ses of the patri­ar­chal gaze and objec­ti­fi­ca­tion of the female body. In fact, impres­sion­is­ti­cal­ly, diver­si­ty does not even fig­ure into the pro­jec­tions and images asso­ci­at­ed with the exten­sive mate­r­i­al pro­mot­ed by BRA day in Toron­to, a city known as one of the most eth­ni­cal­ly diverse in North Amer­i­ca. Indeed, even the his­to­ry and con­text of the idea of breast aug­men­ta­tion in the med­ical field seemed odd­ly absent (see Peters and For­nasi­er). Instead, the event prais­es the plas­tic sur­geons, most­ly but not exclu­sive­ly male, and their skill in rebuild­ing absent­ed female breasts (“All About BRA Day”; see also Hill et al.).

Cer­tain­ly, the event is not intend­ed to be any­thing more than a day of infor­ma­tion to enable options and sup­port for those who are on a path towards recon­struc­tion after breast can­cer surgery. Per­haps crit­i­cism due to omis­sion could be read as unfair. How­ev­er, based on my own expe­ri­ence at the Octo­ber 2016 Toron­to event (the first to be orga­nized after my diag­no­sis and treat­ment), as well as the Octo­ber 2018 Toron­to event (which I attend­ed with the eye of a researcher), and relat­ed research, the mes­sag­ing is dan­ger­ous­ly one-sided. Indeed, breast recon­struc­tion is pre­sent­ed as a neces­si­ty to “close the loop on breast can­cer,” turn­ing the icon­ic pink rib­bon, which is open at the bot­tom, into a closed, and com­plete, fig­ure eight. Women are invit­ed to be and feel “whole” again when they sport recon­struct­ed breasts. Then they will be, appar­ent­ly, ful­ly healed after the phys­i­cal and emo­tion­al hard­ships of a breast can­cer diag­no­sis and treat­ment.

With many years of my own and oth­ers’ fem­i­nist schol­ar­ship and activism upon which to stand (see Bakan and Sta­si­ulis; Bakan and Kobayashi; Abu-Laban), it soon became obvi­ous that there was a need for greater atten­tion to a pol­i­tics of choice in the world of life after breast can­cer. There have been, arguably, sev­er­al waves in breast can­cer treat­ment, as there have been in fem­i­nist the­o­ry and activism gen­er­al­ly, even if the frame­work remains con­test­ed (Orr et al.). His­tor­i­cal­ly, breast can­cer was com­mon­ly treat­ed with “rad­i­cal” mas­tec­tomies, a major sur­gi­cal inter­ven­tion which removed the entire breast as well as lymph nodes and por­tions of mus­cle tis­sue along the chest wall, and some­times addi­tion­al bone mass. This method was advanced by Dr. William Stew­art Hal­st­ed (1852-1922), who estab­lished a school of breast can­cer treat­ment ground­ed on the prin­ci­ple of ever-widen­ing sur­gi­cal exci­sion par­tic­u­lar­ly asso­ci­at­ed with the Johns Hop­kins Hos­pi­tal (Hal­st­ed). Anoth­er US sur­geon, Willy Mey­er, inde­pen­dent­ly advanced the same surgery as a way to treat breast can­cer (Mukher­jee 60-72). The results, in terms of treat­ing can­cer as a life-threat­en­ing dis­ease, were sig­nif­i­cant; women who were diag­nosed with breast can­cer and treat­ed with rad­i­cal mas­tec­tomies lived longer. How­ev­er, the impact on their qual­i­ty of life fol­low­ing the surgery was harsh: “With the pec­toralis major cut off, the shoul­ders caved inward as if in a per­pet­u­al shrug, mak­ing it impos­si­ble to move the arm for­ward or side­ways” (Mukher­jee 65).

For­tu­nate­ly, over time this stan­dard treat­ment has come to be seen as unnec­es­sary (Verone­si et al.). The trans­for­ma­tion in stan­dard treat­ment is itself a prod­uct of advo­ca­cy for women’s health as well as advances in med­ical research regard­ing can­cer gen­er­al­ly. Cur­rent­ly, mas­tec­to­my is com­mon­ly seen as a last resort fol­low­ing oth­er treat­ment options, and when con­duct­ed is nor­mal­ly a “sim­ple” mas­tec­to­my surgery that pre­serves the mus­cu­la­ture in the chest wall. Advo­ca­cy for “breast con­ser­va­tion” there­fore fol­lows a wave of advance in the treat­ment of breast can­cer that is relat­ed explic­it­ly to wider advances in women’s rights and women’s health.

Enter the issue of breast recon­struc­tion. This can be seen as con­sis­tent with atten­tion to breast con­ser­va­tion as a chal­lenge to the pre­dom­i­nant reliance on rad­i­cal mas­tec­tomies. How­ev­er, breast recon­struc­tion is not a treat­ment for can­cer, but address­es the results of surgery that are part of can­cer treat­ment. For some women, recon­struc­tion has led to a sense of restored health, agency, and well-being fol­low­ing the dev­as­tat­ing real­i­ties of breast can­cer diag­no­sis and treat­ment (Anstett). But this major and com­plex surgery has also become iden­ti­fied as an inevitable, or nec­es­sary, part of the breast can­cer “jour­ney.” Here, the gaze on the objec­ti­fied female breast and the relat­ed patri­ar­chal and racial­ized his­to­ry of med­ical­iza­tion and health­care in cap­i­tal­ist soci­eties such as Cana­da and the US are con­sis­tent with the per­spec­tives that inform the advance­ment of breast con­ser­va­tion hege­mo­ny (Sta­si­ulis and Bakan 107-139; Cal­liste). The major “choic­es” pre­sent­ed at BRA day revolve around options about the type of recon­struc­tion: imme­di­ate or delayed recon­struc­tion; trans­plant­ed tis­sue or implants; trans­plants from the stom­ach, back, or but­tocks. Infor­ma­tion about the risks and side effects of recon­struc­tion are gen­er­al­ly min­i­mized. Also min­i­mized or absent­ed are oth­er options that avoid recon­struc­tion altogether—going flat on one or both sides, or the addi­tion of cre­ative tat­toos. The options pro­mot­ed on BRA Day are not unique, but typ­i­cal of the breast can­cer indus­try. One study pub­lished in 2016, designed to assess how patients in the US are informed about breast recon­struc­tion (con­duct­ed over 20 months at a sin­gle site, among 126 patients plan­ning mas­tec­to­my) con­clud­ed that knowl­edge of the risk of com­pli­ca­tions was par­tic­u­lar­ly low, with only 15 per­cent of respon­dents indi­cat­ing they were accu­rate­ly informed; the major­i­ty lacked infor­ma­tion or were mis­in­formed (Lee et al., “How Informed” 1105). Fur­ther, there is a racial­ized, classed, and poten­tial­ly het­ero­nor­ma­tive dimen­sion to this knowl­edge: “Low­er knowl­edge was asso­ci­at­ed with non-white race, less edu­ca­tion, low­er income, and sin­gle rela­tion­ship sta­tus” (Lee et al., “How Informed” 1105-06).

The rise of the breast con­ser­va­tion wave is also locat­ed geopo­lit­i­cal­ly. It is trace­able large­ly, though not exclu­sive­ly, to the US med­ical estab­lish­ment. In a con­text of wide­ly pri­va­tized med­ical insur­ance, the costs of breast recon­struc­tion in the US were pro­hib­i­tive up until recent­ly. Access­ing the pro­ce­dure was par­tic­u­lar­ly dis­crim­i­na­to­ry for breast can­cer patients from rur­al areas, low-income eco­nom­ic sta­tus, and those who were racial­ized minori­ties (Lee et al., “Qual­i­ty of Patient Deci­sions”). How­ev­er, fol­low­ing con­sid­er­able advo­ca­cy, the Women’s Health and Can­cer Rights Act was passed in the US in 1998, a law that requires group health plans to cov­er recon­struc­tive pro­ce­dures (Anstett 3). In Cana­da, where there is gen­er­al­ly more wide­ly acces­si­ble pub­lic health, “breast recon­struc­tion after can­cer surgery is cov­ered by most provin­cial and ter­ri­to­r­i­al health insur­ance plans” (“Breast Recon­struc­tion”). How­ev­er, the edu­ca­tion­al con­text and pro­mo­tion of the breast con­ser­va­tion indus­try has close­ly fol­lowed the US pat­tern. Notably, while breast recon­struc­tion surgery is auto­mat­i­cal­ly cov­ered by the Ontario Health Insur­ance Pro­gram (OHIP), for exam­ple, revi­sion of scars to achieve a ful­ly flat appear­ance after mas­tec­to­my is not (“Fre­quent­ly Asked Ques­tions”).

Flat and Fabulous and the Politics of Choice

The piv­otal alter­na­tive to breast recon­struc­tion fol­low­ing mas­tec­to­my, the choice to “go flat” either asym­met­ri­cal­ly or sym­met­ri­cal­ly, has received far less atten­tion. Still emer­gent, and only through advo­ca­cy among those who have elect­ed this path, this option is cur­rent­ly gain­ing legit­i­ma­cy and recog­ni­tion. Infor­ma­tion regard­ing the lim­i­ta­tions of and alter­na­tives to recon­struc­tion has been gen­er­at­ed by women’s choic­es and reflect­ed in a cur­rent of social aware­ness. How­ev­er, data on trends accord­ing to avail­able sta­tis­tics regard­ing recon­struc­tion after mas­tec­to­my is a con­test­ed field (Joyce). Accord­ing to one 2015 study in the US, only 25 per­cent of women in that year who under­went mas­tec­tomies had imme­di­ate recon­struc­tion fol­low­ing breast can­cer treat­ment, yet “[m]edical lit­er­a­ture large­ly starts from the assump­tion that [women who have mas­tec­to­my] want to have recon­struc­tion and emu­late their miss­ing breast(s)” (Joyce 4). The num­ber of women opt­ing for breast recon­struc­tion after mas­tec­to­my increased in the US by 35 per­cent between 2000 and 2015 (Rabin, “After Mas­tec­tomies”), but it is not clear if this rate is con­tin­u­ing (see Anstett 4; Yang et al.). It is esti­mat­ed that over­all, in the US, “rough­ly 25 per­cent of dou­ble-mas­tec­to­my patients and 40 per­cent of sin­gle-mas­tec­to­my patients opt out of recon­struc­tion” (Guthrie, “Why More Breast Can­cer”). There is no doubt, how­ev­er, that recon­struc­tion is the med­ical­ly advo­cat­ed norm, where it is assumed that “[b]reast recon­struc­tion can help restore body image and alle­vi­ate dis­tress asso­ci­at­ed with mas­tec­to­my,” even though this assump­tion is not based on sub­stan­tive research on actu­al­ly “eval­u­at­ed patient per­cep­tions and out­comes” (Pusic et al. 2500).

Cer­tain­ly, for some, recon­struc­tion is an affirm­ing and healthy option. The goal of sur­gi­cal recon­struc­tion fol­low­ing mas­tec­to­my is to pro­duce “breast mounds,” either from tis­sue trans­plant­ed from the woman’s body or through implants. Sur­gi­cal­ly con­struct­ed or tat­tooed nip­ples com­plete the pro­ce­dure. To the exter­nal observ­er these often “look and feel” like nat­ur­al breasts. But to the woman her­self, the breast mound is often numb and lacks feel­ing. Despite the pro­mo­tion­al cli­mate in the med­ical indus­try, a sys­tem­at­ic review of US stud­ies (up to 2009) on report­ed out­comes com­par­ing those who had and had not under­gone recon­struc­tion fol­low­ing mas­tec­tomies indi­cat­ed that there were no notable dif­fer­ences between the groups in terms of “qual­i­ty of life, body image and sex­u­al­i­ty” (Lee et al., “Patient-Report­ed Out­comes” 129). For those who have had recon­struc­tion, com­pli­ca­tions can be exten­sive. These can include fail­ure of the surgery result­ing in a need for decon­struc­tion, hard­en­ing of the tis­sue sur­round­ing a breast implant (cap­su­lar con­trac­ture), implant rup­ture, and var­i­ous seri­ous ill­ness­es. The lat­ter include breast implant-asso­ci­at­ed anaplas­tic large cell lym­phoma (BIA-ALCL), a form of can­cer (Grady). In 2019, the US Food and Drug Asso­ci­a­tion (FDA) Com­mis­sion­er issued a state­ment indi­cat­ing new infor­ma­tion sug­gest­ing poten­tial­ly high­er risks of BIA-ALCL, and warned two breast implant man­u­fac­tur­ers (Men­tor and Sien­tra) with let­ters for fail­ing to com­ply with FDA require­ments (“State­ment from FDA Com­mis­sion­er”;FDA Issues Warn­ing Let­ters; see also Grady and Rabin). Also in 2019, Health Cana­da issued a state­ment indi­cat­ing a high­er rate of con­firmed and sus­pect­ed BIA-ALCL than pre­vi­ous­ly report­ed, and alert­ing health care pro­fes­sion­als to attend to signs and symp­toms of the dis­ease (“Health Cana­da Will Be Updat­ing Its Safe­ty Review”; see also Cribb and McLean; Adhopia and Ouel­let). Notably, one of the major iden­ti­fied spon­sors of BRA Day in Toron­to, 2018, was Men­tor, one of the implant cor­po­ra­tions that received a warn­ing let­ter from the FDA. This is sug­ges­tive of moti­va­tions for the cel­e­bra­to­ry breast recon­struc­tion aware­ness event based more on gen­er­at­ing sales and repro­duc­ing patri­archy than on expand­ing health and well­ness fol­low­ing breast can­cer treat­ment.

The hege­mo­ny of recon­struc­tion dis­course pre­sumes a sin­gu­lar­i­ty to the “woman” who has had breast can­cer surgery that is stark­ly unaf­fect­ed by decades of fem­i­nist debates, not only in schol­ar­ship, but also in pol­i­cy and dai­ly life in con­tem­po­rary civ­il soci­ety (see “BRA Day: Breast Recon­struc­tion Aware­ness”). My own obser­va­tion of the Toron­to, 2016, Nation­al BRA Day event saw a large audi­ence of sev­er­al hun­dred women, fea­tur­ing two women speak­ers and a pan­el of plas­tic sur­geons. Anec­do­tal­ly, the exam­ples and sto­ries for­ward­ed at BRA Day appear to be demon­stra­bly pro­fil­ing white women, and the assump­tion of het­ero­nor­ma­tiv­i­ty was wide­spread. These are char­ac­ter­is­tics iden­ti­fied to be con­sis­tent with can­cer treat­ment gen­er­al­ly in Cana­da and the US (see Tay­lor and Bryson). I returned to observe the Toron­to BRA Day in 2018, and the large­ly white demo­graph­ic had not changed, even in a city which is not­ed for being among the most racial­ly diverse in North Amer­i­ca (see “BRA Day: Breast Recon­struc­tion Aware­ness”).

Those seek­ing oth­er options have, how­ev­er, been assert­ing the legit­i­ma­cy of their choic­es. A grow­ing body of schol­ar­ly research, inves­tiga­tive report­ing, social media, films, and blogs are chal­leng­ing the pre­dom­i­nant assump­tions that go with the wide­spread “image of a smil­ing, pink clad woman with round breasts” so ubiq­ui­tous in “breast can­cer aware­ness mar­ket­ing” (Joyce 3). This cur­rent is indi­cat­ed qual­i­ta­tive­ly and anec­do­tal­ly by a social media Face­book group, Flat and Fab­u­lous, found­ed by two women who met through The Scar Project, a 2011 doc­u­men­tary about young breast can­cer sur­vivors (Jay). The Flat and Fab­u­lous Face­book group received wider pub­lic atten­tion when an arti­cle was writ­ten in The New York Times, call­ing atten­tion to the recon­struc­tion indus­try and the expe­ri­ences of those who came to the deci­sion to go flat (Rabin, “‘Going Flat’ After Breast Can­cer”). The arti­cle was based on exten­sive research with med­ical prac­ti­tion­ers and women who had had breast can­cer. It stat­ed the case clear­ly about the pres­sure for recon­struc­tive surgery fol­low­ing breast can­cer treat­ment, plac­ing this in a wider con­text. The Times arti­cle deserves quo­ta­tion at some length:

In pro­mot­ing the surgery, doc­tors cite stud­ies that sug­gest breast recon­struc­tion improves a woman’s qual­i­ty of life after can­cer. But some women say that doc­tors focus too much on phys­i­cal appear­ance, and not enough on the toll pro­longed recon­struc­tive pro­ce­dures take on their bod­ies and their psy­ches. Up to one-third of women who under­go recon­struc­tion expe­ri­ence com­pli­ca­tions. A sys­tem­at­ic review of 28 stud­ies found that women who went with­out recon­struc­tion fared no worse, and some­times did bet­ter, in terms of body image, qual­i­ty of life and sex­u­al out­comes. “That’s the dirty lit­tle secret of breast recon­struc­tion: The risk of a major com­pli­ca­tion is high­er than for the aver­age elec­tive surgery,” said Dr. Clara Lee, an asso­ciate pro­fes­sor of plas­tic surgery at Ohio State Uni­ver­si­ty who per­forms the pro­ce­dure. Ms. Cuoz­zo, who appeared in the Face­book video … spent a year hav­ing her breasts rebuilt after a dou­ble mas­tec­to­my, but after four infec­tions in five months, she had the implants removed. The recon­struc­tion, she said, “was get­ting worse than the can­cer.” (Rabin, “‘Going Flat’ After Breast Can­cer”)

More voic­es were and are com­ing for­ward from mul­ti­ple sources, includ­ing film and blog posts, as well as mul­ti­dis­ci­pli­nary schol­ar­ly research (see, for exam­ple, Guthrie, Flat, “How Sex­ism,” and “Why More Breast Can­cer”; Skene; Joyce; Gao; “A Mat­ter of Choice”; Brown and McEl­roy; New­man). These are sig­nals of a ris­ing new, vibrant social move­ment, one that is already indi­cat­ing and affect­ing change. For exam­ple, the Cana­di­an Can­cer Soci­ety now lists “Choos­ing to Stay Flat” on its web­site (“Choos­ing to Stay Flat”). In April 2018, a col­lec­tive of “flat­ties” in the Unit­ed States came togeth­er to launch the web­site Flat​clo​surenow​.org, which is “ded­i­cat­ed to ensur­ing breast can­cer patients and providers under­stand that ‘going flat’ is a valid, beau­ti­ful, and healthy sur­gi­cal option after mas­tec­to­my” (Flat Clo­sure Now).

Return­ing to my per­son­al expe­ri­ence, I have been heart­ened to have the oppor­tu­ni­ty to join a num­ber of closed Face­book groups, specif­i­cal­ly ded­i­cat­ed to advo­ca­cy and sup­port for those of us who have cho­sen to go flat after breast can­cer diag­no­sis and mas­tec­to­my. These Face­book groups are a cen­tral sup­port for those who need a com­mu­ni­ty, and also serve as cen­tres for move­ment build­ing to advo­cate for change. These Face­book groups include: Flat­ties Unite; I Want­ed to Be Flat; Flat in Cana­da; Flat in Toron­to and GTA; and Fab­u­lous­ly Flat. The num­bers report­ed are in the hun­dreds for some sites, oth­ers are in the thou­sands. Anoth­er group sup­ports women who have had breast implants and have expe­ri­enced seri­ous and often unrec­og­nized or min­i­mized health chal­lenges as a result: Breast Implant Ill­ness and Heal­ing by Nicole. The group has over 113, 000 mem­bers (Nicole).

As the com­mu­ni­ty of those who resist the hege­mo­ny of breast con­ser­va­tion and recon­struc­tion grows, new lan­guage has evolved to express the expe­ri­ences and range of emo­tions. One impor­tant term that is gain­ing trac­tion is “flat denial,” defined as “when a surgeon’s actions deny their patient a flat mas­tec­to­my result, whether through mis­align­ment of expec­ta­tions, lack of train­ing or inten­tion­al dis­re­gard” (Bowles). Kim­ber­ly Bowles, who iden­ti­fies as a “Pitts­burgh sci­en­tist, artist, wife, moth­er, can­cer sur­vivor and flat advo­cate,” start­ed Not Putting on a Shirt. This site offers exten­sive resources “for opti­mal sur­gi­cal out­comes for women who choose to go flat after mas­tec­to­my” (Not Putting on a Shirt). It is inspired by Kim’s sto­ry, when she arranged a plas­tic sur­geon at the time of her dou­ble mas­tec­to­my, and explic­it­ly request­ed a flat result. As she was going into surgery on the oper­at­ing table, the sur­geon informed her that he would leave excess skin, in case she might “change her mind” and opt for recon­struc­tion (Not Putting on a Shirt). This action was tak­en with­out con­sent, but has been defend­ed in the months fol­low­ing as con­sis­tent with estab­lished med­ical prac­tice.

Again return­ing to my per­son­al sit­u­a­tion, my choice to go flat was also resist­ed, but ulti­mate­ly the sur­geon agreed and the pro­ce­dure fol­lowed smooth­ly. How­ev­er, this agree­ment was not with­out chal­lenge, as it was out­side the nor­mal hier­ar­chy of med­ical author­i­ty. As my treat­ment plan was being final­ized fol­low­ing final tests and diag­no­sis, an attend­ing nurse wait­ed until the sur­geon had left the hos­pi­tal room fol­low­ing final sign-off. At this moment, she informed me, “With any oth­er sur­geon, we would be send­ing you for a psy­che assess­ment now.” The impli­ca­tion was that my deci­sion to opt for a dou­ble mas­tec­to­my to address ear­ly stage breast can­cer was the prod­uct of men­tal insta­bil­i­ty. Indeed, some med­ical pro­fes­sion­als have assert­ed such choic­es con­sti­tute a dis­ease sep­a­rate from can­cer, appar­ent­ly “an epi­dem­ic” (Lagna­do). The ques­tion­ing of a patient’s psy­cho­log­i­cal sta­bil­i­ty in order to refuse or redi­rect treat­ment is of course not uncom­mon in the med­ical pro­fes­sion, tar­get­ing, for exam­ple, women, Black com­mu­ni­ties, trans peo­ple, the LGBTQ com­mu­ni­ty, peo­ple with dis­abil­i­ties, and immi­grants (see Roberts 90-91; Gar­ner; Son­tag; Lorde). My expe­ri­ence, how­ev­er, is per­haps notable because I had advo­cat­ed for a kind of surgery iden­ti­fied in cur­rent med­ical guide­books for prac­tic­ing breast sur­geons to gen­er­ate “high­ly cur­able” results, a phrase rarely asso­ci­at­ed with can­cer treat­ment (“Princess Mar­garet” 107). For Kim­ber­ly Bowles and many oth­ers, expe­ri­ences are far more seri­ous: “They go into mas­tec­to­my expect­ing a flat result, and wake up to some­thing com­plete­ly dif­fer­ent” (Not Putting on a Shirt; see also Guthrie, “How Sex­ism”).

Find­ing com­mu­ni­ty in the face of such expe­ri­ences is cru­cial to heal­ing. Com­mu­ni­ty sup­port also inspires advo­ca­cy to expand choice, and in turn serves to break bar­ri­ers regard­ing ascribed norms regard­ing gen­der and abil­i­ty. This move­ment is con­sis­tent with the goals of dis­abil­i­ty stud­ies and activism that have chal­lenged the dom­i­nance of the idea of the “nor­mal” healthy body. This is the “nor­mal body” that is assumed to be the same as the “healthy body.” When the nor­mal becomes ill or impaired, it is expect­ed to demand repair with pros­thet­ics and oth­er mate­r­i­al and social devices (see Betch­er; Erev­elles).

One indi­ca­tion of the suc­cess of the going flat move­ment is change in fash­ion options, includ­ing for­ward­ing new cloth­ing designs for women with one breast (“uni­boobers”) or no breasts (“flat­ties”), and web-based ini­tia­tives such as Empow​er​haus​.co and Idont​needt​wo​.com. One par­tic­u­lar­ly impor­tant fash­ion inter­ven­tion has been spon­sored by Ana Ono, which fea­tures design­er lin­gerie for women who have been treat­ed for breast can­cer (Dale; Isis). In 2019, New York fash­ion week includ­ed the Ana Ono run­way show (now an annu­al event) notably fea­tur­ing a diverse group of mod­els all of whom were liv­ing with stage 4, metasta­t­ic breast can­cer. This form of breast can­cer is a pro­gres­sion of the dis­ease that affects 30 per­cent in the US of those who are diag­nosed, but is the sub­ject of only 3-7 per­cent of research dol­lars (Isis).

Ana Ono New York Fash­ion Week, cred­it Charise Isis 2019

This move­ment is only recent­ly com­ing into wider pub­lic view. How­ev­er, atten­tion to the pol­i­tics of choice and women’s rights fol­low­ing mas­tec­to­my is not new. For exam­ple, in 1980, Black fem­i­nist author Audre Lorde shared her sto­ry of deal­ing with breast can­cer and find­ing her­self scold­ed by a nurse for declin­ing to wear a pros­thet­ic to a fol­low up appoint­ment (Lorde 60). As she bold­ly stat­ed:

a woman who has one breast and refus­es to hide that fact behind a pathet­ic puff of lamb­swool which has no rela­tion­ship nor like­ness to her own breasts, a woman who is attempt­ing to come to terms with her changed land­scape and changed timetable of life and with her own body and pain and beau­ty and strength, that woman is seen as a threat to the “morale” of a breast surgeon’s office! … I refuse to have my scars hid­den or triv­i­al­ized behind lamb­swool or sil­i­cone gel. I refuse to be reduced in my own eyes or in the eyes of oth­ers from war­rior to mere vic­tim…. (Lorde 61-62)

In sum, there is an appar­ent need for a shift in the par­a­digm, from a stan­dard­ized assump­tion of “clos­ing the loop” on breast can­cer through a hege­mon­ic focus on breast con­ser­va­tion and recon­struc­tion to a pol­i­tics of informed choice. The lat­ter has been advanced in anoth­er con­text, women’s repro­duc­tive health.

The Cana­di­an pro-choice move­ment advo­cat­ed for a woman’s right to choose over decades of activism and advo­ca­cy. It can serve as an impor­tant mod­el regard­ing the social, polit­i­cal, and eco­nom­ic con­text of women’s health more gen­er­al­ly, and is sug­ges­tive of a way to reimag­ine options fol­low­ing sur­gi­cal treat­ment for breast can­cer. The pro-choice move­ment advo­cat­ed for the rights of women to con­trol their bod­ies, but also to demon­strate capac­i­ty to make life and death deci­sions. These were specif­i­cal­ly asso­ci­at­ed with repro­duc­tive free­dom, con­sid­er­ing options to ter­mi­nate safe­ly an unwant­ed preg­nan­cy, or to make an informed choice to car­ry a preg­nan­cy to term (Pel­rine; Brodie et al.). Fram­ing abor­tion in this way, by asso­ci­at­ing it with women’s right to choose, was ulti­mate­ly suc­cess­ful in chal­leng­ing abor­tion laws in Cana­da. Cer­tain­ly, major gains have been achieved regard­ing issues asso­ci­at­ed with women’s choic­es to have or not to have chil­dren, and relat­ed­ly, to choose if or when to ter­mi­nate an unwant­ed preg­nan­cy. Con­sid­er­ing choice in this man­ner is dis­tinct from a focus on the neolib­er­al mar­ket mod­el of “choice,” which ide­al­izes the abstract indi­vid­ual as if devoid of mate­r­i­al and polit­i­cal dif­fer­ence (for a cri­tique, see Abu-Laban and Gabriel).

Instead, the lessons of the pro-choice move­ment link med­ical issues with those of social, eco­nom­ic, and polit­i­cal rights, and can be sug­ges­tive of an inter­sec­tion­al approach (see Cren­shaw; Bakan and Abu-Laban). The gains are sig­ni­fied by the 1988 R. v. Mor­gen­taler deci­sion, when the Supreme Court of Cana­da inval­i­dat­ed pre­vi­ous fed­er­al leg­is­la­tion that crim­i­nal­ized access to abor­tion ser­vices on grounds of vio­la­tion of the Cana­di­an Char­ter of Rights and Free­doms. How­ev­er, this is not only an his­tor­i­cal exam­ple. Advo­ca­cy con­tin­ues to be need­ed to ensure women’s right to choose regard­ing access to pub­licly fund­ed abor­tion across the provinces of Cana­da (see John­stone; John­stone and Mcfar­lane).

An impor­tant pro­vi­so regard­ing the rela­tion­ship of these issues is in order. In for­ward­ing a pol­i­tics of choice, it is not sug­gest­ed that preg­nan­cy is com­pa­ra­ble to can­cer; sim­ply put, preg­nan­cy, unlike can­cer, is not a dis­ease. Rather, the sug­ges­tion is that there are grounds to extend a con­ver­sa­tion in terms of a cri­tique of patri­ar­chal norms, women’s agency, gen­dered issues of bod­i­ly integri­ty, inter­sec­tions of gen­der, race, abil­i­ty and class, and life or death deci­sions. These involve a rela­tion­ship between peo­ple who are diag­nosed with breast can­cer, includ­ing women and men, and a med­ical sys­tem that includes trained, pro­fes­sion­al prac­ti­tion­ers, and exten­sive infor­ma­tion­al and tech­ni­cal resources. From this per­spec­tive, the issues of choice drawn from decades of pub­lic pol­i­cy and social move­ment advo­ca­cy asso­ci­at­ed with repro­duc­tive rights can be brought into dia­logue with the pol­i­tics of women’s altered bod­ies after mas­tec­to­my, and relat­ed mat­ters of qual­i­ty of life after breast can­cer.

Conclusion: Towards Future Research

The pre­ced­ing dis­cus­sion has attempt­ed to name and ques­tion the hege­mon­ic par­a­digm of breast con­ser­va­tion, and relat­ed­ly, assump­tions of breast deficit as the main effect of mas­tec­to­my. Alter­na­tive­ly, oth­er options, includ­ing the option to go flat, deserve greater atten­tion. A pol­i­tics of choice, inspired by, but not iden­ti­cal to, the pol­i­tics advanced in Cana­da regard­ing abor­tion rights, can be help­ful in such a con­ver­sa­tion. Con­sid­er­ing a pol­i­tics of choice regard­ing life after breast can­cer treat­ment has the poten­tial, arguably, to expand our under­stand­ing as well as to open space for wider social and med­ical com­mu­ni­ties. Rather than assum­ing that there is a sin­gle “nor­mal” and uni­ver­sal­ized healthy out­come to breast can­cer treat­ment, we would be well served to imag­ine mul­ti­ple open-end­ed out­comes where agency and choice are cen­tred among mul­ti­ple poten­tial, and poten­tial­ly pos­i­tive, options.

This remains, how­ev­er, chal­leng­ing ter­ri­to­ry. For exam­ple, inter­sec­tion­al approach­es to choice at the inter­face of agency and the med­ical estab­lish­ment are rel­e­vant, includ­ing expe­ri­ences of transgendered/transsexual men and women. The ready access to breast recon­struc­tive surgery for women diag­nosed with breast can­cer is notably in con­trast to requests from trans com­mu­ni­ties seek­ing sim­i­lar plas­tic surgery. Men who have been diag­nosed with gyneco­mas­tia, the med­ical term for exces­sive breast tis­sue, are also gen­er­al­ly sup­port­ed in obtain­ing desired surgery (Gar­ner). Yet there are demon­stra­ble bar­ri­ers faced by male-to-female trans peo­ple seek­ing med­ical sup­port for breast con­struc­tion, a sur­gi­cal pro­ce­dure very sim­i­lar to post mas­tec­to­my breast recon­struc­tion (Gar­ner). These, and oth­er relat­ed exam­ples, could poten­tial­ly be brought into a wider pub­lic con­ver­sa­tion under the umbrel­la of a pol­i­tics of choice.

And, to con­clude, a final note on my per­son­al expe­ri­ence. Four­teen months after mas­tec­to­my surgery, I returned to anoth­er hos­pi­tal for a sec­ond surgery, this time a day clin­ic pro­ce­dure with two plas­tic sur­geons for scar revi­sion, to pro­duce a flat­ter out­come fol­low­ing the mas­tec­to­my. An attend­ing nurse was on intake, one I had not met pre­vi­ous­ly. When she looked at my chart and saw my flat chest, she burst out in laughter—as in deep hold-your-bel­ly guf­faw laugh­ter. Spit­ting­ly, she stat­ed, “Flat­ter than flat? That’s a new one!” How­ev­er, the surgery, again, went well. After the pro­ce­dure, fol­low­ing the care­ful and pro­fes­sion­al atti­tude of the sur­geons, who were of course her supe­ri­ors in the med­ical hier­ar­chy, the atti­tude of the attend­ing nurse changed. As I changed clothes and received post-op instruc­tions, she was now demure. “You could wear a T-shirt, I see,” she stat­ed. “And maybe you’ll start a trend.” I replied, “Already have. Read the New York Times.” I exit­ed with a bit of bounce in my step.

Acknowledgements

Thanks to Elaine Coburn, Kim­ber­ly Bowles, Reena Kukre­ja, and the edi­tors of this jour­nal, for help­ful com­ments and encour­age­ment on an ear­li­er draft. And I am grate­ful beyond words to Paul Kel­logg, who has been my FPP (Flat Pos­i­tive Part­ner) through­out the mul­ti­ple expe­ri­ences that inspire this arti­cle.

Works Cited

A Mat­ter of Choice: Mas­tec­tomies With­out Recon­struc­tion.” CBS New, 12 Mar. 2017, https://​www​.cbsnews​.com/​n​e​w​s​/​a​-​m​a​t​t​e​r​-​o​f​-​c​h​o​i​c​e​-​m​a​s​t​e​c​t​o​m​i​e​s​-​w​i​t​h​o​u​t​-​r​e​c​o​n​s​t​r​u​c​t​i​o​n​-2/

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