Can cer, w o m en , an d
public h ealth : th e
h isto ry o f screen in g
fo r cervical can cer *
Câncer, m ulheres e saúde
pública: a história do exam e
para câncer cervical
Ilana Löwy
Centre de Recherche Médecine, Science et Societé/CNRS 7 rue Guy Moquet
94801 Villejuif cedex France lowy@ext.jussieu.fr
Recebido para publicação em abril de 2009. Aprovado para publicação em janeiro de 2010.
LÖWY, Ilan a. Can cer, wom en , an d public h ealth : th e h istory of screen in g for cervical can cer. História, Ciências, Saúde – Manguinhos, Rio de Jan eiro, v.17, supl.1, jul. 2010, p.53-67.
Ab s t r a c t
Cytological screen in g for cervical can cer (th e Pap sm ear), th e first attem pt at m ass screen in g for a h um an m align an cy, is often presen ted as a n on -problem atic dem on stration of th e feasibility of such screen in g. Screen in g for th is tum or becam e a m odel for screen in g for oth er m align an cies: breast, colon an d prostate. My text follows th e early h istory of th e Pap sm ear an d th e con dition s th at led to its tran sform ation in to a routin e screen in g test, despite persisten t problem s in stabilizin g th e readin gs of m icroscopic slides. It th en an alyzes th e con sequen ces of diffusion of th e Pap sm ear, con troversies surroun din g th is test, th e m utual sh apin g of diagn ostic tests an d th e disease cervical can cer, an d th e problem atic exten sion of th e lesson s learn ed in screen in g for cervical tum ors to oth er m align an cies.
Keywords: cervical can cer; Pap sm ear; can cer screen in g; can cer activism ; public h ealth .
Res u m o
O exam e citológico para verificação do câncer cervical (teste de Papanicolau), prim eira tentativa de investigação em m assa de um câncer hum ano m aligno, é com frequência apresentado com o dem onstração não problem ática da exequibilidade do exam e. Ele se tornou um m odelo para outros tum ores m alignos: seio, cólon, próstata. O presente artigo analisa a história inicial do teste de Papanicolau e as condições de sua transform ação num exam e de rotina, apesar de dificuldades de estabilizar as leituras das lâm inas m icroscópicas. Analisa as consequências da difusão da técnica, as controvérsias a esse respeito, a m odelagem articulada do teste diagnóstico e da doença câncer cervical e a problem ática aplicação a outros cânceres das lições aprendidas com o exam e de tum ores cervicais.
Cervical lesions: “cancer,” “precancer,” or “cancer risk”?
C
ytological screen in g for cervical can cer (th e Pap sm ear), th e first attem pt at m assscreen in g for a h u m an m align an cy, is often presen ted as a dem on stration of th e feasibility of such screen in g. Screen in g for th is tum or becam e a m odel for screen in g for oth er m align an cies: breast, colon an d prostate. My text follows th e early h istory of th e Pap sm ear, its diffusion , an d its tran sform ation in to “th e righ t tool for th e job” (to quote Mon ique Caspar an d Adele Clarke), despite persisten t problem s in stabilizin g th e readin gs of m icroscopic slides an d th e m ultiple m ean in gs of th ese readin gs (Casper, 1998). It an alyzes th e con sequen ces of th e stabilization of th e Pap sm ear, rem ain in g con troversies surroun din g th is test, th e m u tu al sh apin g of diagn ostic tests an d th e disease “cervical can cer,” an d problem s with th e exten sion of lesson s learn ed in screen in g for cervical tum ors to oth er m align an cies.1
Th e first in strum en t th at allowed ph ysician s to look directly at th e cervix – th e speculum – was developed in th e early n in eteen th cen tury. Gyn ecologists equipped with a speculum were able to perform cervical biopsies. Path ologists wh o studied such biopsies occasion ally u n co vered su p erficial (t h at is, n o n -in vasive) lesio n s o f t h e cervix. Pro bably t h e first description of such a lesion was m ade by British professor of m idwifery Joh n William s in
1886. In h is Harveian Lectures on uterin e can cer, publish ed in 1888, William s described a
lesion of th e cervix, “th e earliest con dition wh ich is recogn izable as can cer. It presen ted
n o distin ctive sym ptom s, an d was discovered acciden tally.”2
Th is last statem en t is im portan t. Lesion s iden tified as “early can cers” an d later described as “precan cerous” do n ot in duce sym ptom s. Th ey can be discovered eith er by ch an ce or th rou gh a deliberate effort. In th e 1930s, Vien n ese gyn ecologist Walter Sch iller (1933) becam e in terested in superficial proliferative lesion s of th e cervix. He was th e first to follow
th e developm en t of such lesion s over tim e.Serial biopsies from th e sam e patien t displayed
several stages of tran sition from a n orm al epith elium to a m align an t on e. Observation of su ch in term ediary stages, Sch iller argu ed, proved th at prein vasive lesion s of th e cervix were th e tru e precu rsors of m align an t tu m ors. Sch iller was persu aded th at h is series of slides dem on strated with out an y possible doubt th at superficial lesion s of th e cervix are very early stages of cervical can cer. He proposed th erefore to call th ese ch an ges “youn g carcin om a” an d stron gly rejected th e argu m en t th at th e term “carcin om a” sh ou ld be reserved for in vasive lesion s on ly:
th e objection th at th e carcin om ateous layer is n ot carcin om a because it does n ot pen etrate deeply is equivalen t to sayin g th at th e em bryo of a m ouse h as n ot th e ch aracteristics of a m ouse because th e em bryo does n ot breath e th rough h is lun gs as a grown -up m ouse does. […]We d o n ot sp eak abou t “p reh u m an ” em bryo bu t a “h u m an ” em bryo, an d I believe th at th e sam e th in g ap p lies to can cer: th ere is a “carcin om ateou s” layer, bu t n ot a “precan cerous” layer (Sch iller, 1933, p.214).
adopted Sch iller’s poin t of view. Som e were n ot persu aded th at su perficial proliferative lesion s of th e cervix were in d eed early stages of a carcin om a. Th ey p rop osed a m ore con servative treatm en t of such lesion s: eith er local rem oval of zon es of proliferation or th e am putation of th e cervix alon e (Novak, 1929; Martzloff, 1932). Th e observation th at som e of th e wom en wh o un derwen t con servative surgery developed in vasive cervical tum ors, h owever, led to a ch an ge of policy an d to a wider adoption of an aggressive treatm en t of superficial lesion s of th e cervix.3
At th e sam e tim e, gyn ecologists h ad foun d th at in spite of im portan t progress in th e treatm en t of cervical can cer (radioth erapy, radiation th erapy, surgery, an d com bin ation s of th ese), cure rates for th is m align an cy stabilized at approxim ately 30%. Th e m ain reason for th e persisten ce of h igh m ortality rates, m an y specialists argued, was th e absen ce of sym ptom s of early cervical can cer; wh en sym ptom atic, th e disease h as often already spread. Hen ce th e n eed to fin d a way to detect presym ptom atic can cer th rough regular gyn ecological visits an d, Sch iller proposed, regular colposcopic exam in ation s (an n ual or, even better, bi-an n ual). Th is was, h owever, bi-an expen sive proposal. Moreover, th e colposcope (in ven ted in Germ an y in th e 1920s by gyn ecologist Han s Peter Hin selm an n ) was popular on ly in Germ an -speakin g coun tries; doctors elsewh ere were n ot fam iliar with use of th e colposcope, an d th ey m igh t h ave resisted th e perform an ce of tim e-con sum in g routin e tests. Th e solution cam e from an u n expected direction : th e developm en t of a test (“exfoliative cytology”) groun ded in th e exam in ation of vagin al sm ears.
“Excessive proliferation”: cells and potential patients
Exfoliative cytology of th e cervix was later n am ed th e Pap sm ear after New York path ologist Dr. George Nich olas Pap an icolaou , th e p h ysician wh o develop ed it. Pap an icolaou first
observed abn orm al cells in vagin al sm ears in 1928.4 In 1941, togeth er with gyn ecologist
Herbert Fred erick Trau t, h e p u blish ed a m ore exten sive d escrip tion of h is d iagn ostic approach . Th e Pap sm ear was rapidly adopted by gyn ecologists. Wom en with suspicious vagin al sm ears were subjected to a biopsy by curettage, a cervical biopsy, or both . In m an y cases th is m eth od led to a diagn osis of previously un suspected m align an cies. At first, th e sole aim of exfoliate cytology was th e detection of in vasive carcin om a (McSwezy, 1948). However, with th e gen eralization of th is m eth od, m an y wom en wh o un derwen t biopsy followin g an abn orm al Pap sm ear were diagn osed with eith er well-defin ed pre-in vasive cervical lesion s (carcin om a in situ), or less pron oun ced proliferative ch an ges (dysplasia). Both diagn oses were problem atic, because experts were n ot sure wh at th e status of such lesion s was. Gyn ecologists in itially believed th at cervical lesion s were irreversible an d always led to m align an cy. However, epidem iological data, wh ich juxtaposed th e prevalen ce of in situ tum ors an d in vasive m align an cy, in dicated th at th e prevalen ce of cervical dysplasia was m uch h igh er th an th e prevalen ce of cervical m align an cies. Th ese data stron gly suggested th at th e m ajority of cervical lesion s did n ot progress to m align an cy, but m igh t stabilize, or even disappear.
th at even if som e of th ese lesion s grew so slowly th at th ey would n ever produce in vasive can cers in th e wom an ’s lifetim e, it was safer to view th em as true m align an cies an d treat th em accordin gly.5 Th is con viction was groun ded in solid clin ical data. Practically all wom en
d iagn osed with “stage 0” carcin om a of th e cervix in th e early 1950s an d treated by h ysterectom y rem ain ed can cer free.
Som e specialists were n everth eless reluctan t to perform h ysterectom ies on youn g, fertile wom en diagn osed with superficial cervical lesion s. Moreover, th e readin ess of doctors to perform radical h ysterectom ies varies greatly. Th is operation was (an d con tin u es to be) very popular in th e Un ited States, wh ile it was less popular in som e European coun tries, such as Fran ce (Weisz, 2005).
Am on g th e specialists wh o disagreed with system atic radical treatm en t of superficial cervical lesion s was Jen s Nielsen , director of th e Radium Cen tre in Copen h agen , wh o in 1943 com plain ed about th e lack of data as to h ow often , with h ow lon g a laten t period, an d in wh at m an n er th e so-called precan cerous becam e fran k can cer. In order to provide such data, Nielsen ’s collaborator Olaf Petersen (1955) in itiated a prospective clin ical study of th e developm en t of precan cerous lesion s of th e cervix. Petersen iden tified 212 wom en diagn osed with an epith elial h yperplasia with n uclear abn orm alities. Nearly all th ese wom en cam e to th e Radium Cen tre clin ics with gyn ecological com plain ts. All un derwen t cervical biopsies an d were diagn osed with precan cerous con dition s. Eigh ty-five of th ese wom en – m ain ly th ose diagn osed with borderlin e m align an cies – un derwen t treatm en t, usually a radical on e (radium th erapy or h ysterectom y). On e h un dred twen ty-seven wom en were left un treated, but un derwen t an an n ual gyn ecological an d clin ical exam in ation an d a cervical biopsy. It is n ot clear on wh ich basis wom en were allocated to each group, but th is was n ot a ran dom ized clin ical trial. Th e m ajority of th e wom en were recruited circa 1943 an d observed for ten years. Petersen ’s study en ded in 1953.
On e th ird of n on -treated patien ts selected for th is study developed in vasive can cer of th e cervix. Th e frequen cy of m align an cies in creased with tim e. After th ree years, th irteen wom en in th e n on -treated group developed can cers, wh ile all th ose in th e treated group rem ain ed can cer free. Th e clin ical experim en t con tin ued h owever. After five years th ere were twen ty-two can cers am on g th e n on -treated wom en an d on e case am on g th e treated on es. In spite of th e great n um ber of m align an cies, th e observation of th e n on -treated group con tin ued for an addition al four years, in wh ich twelve m ore wom en in th e n on -treated group (an d n on e in th e -treated group) developed cervical can cer.
Th e patien t can be safely observed for a year at least, … to see if h er lesion s regress or progress before decidin g wh ich treatm en t will suit h er best (Petersen , 1955).
In th e 1950s, on cologists grappled with th e clin ical m ean in g of cervical carcin om a in situ. Th ey kn ew th at som e – but by n o m ean s all – carcin om a in situ lesion s m ay progress to becom e in vasive can cer, wh ile oth ers rem ain station ary or regress. Th e estim ates of th e percen tage of lesion s th at progress to can cer varied widely. Moreover, an d m ore disturbin gly, th ere is n o safe way of separatin g th e in dolen t from th e poten tially aggressive lesion s. Gyn ecologists were u n able to u n cover stable correlation s between a m orp h ology of a lesion an d its fate (G. Koss et al., 1963). Th e un avoidable con clusion was th at gyn ecologists sh ould treat all cervical lesion s, h owever superficial, alth ough such treatm en t is n ot an
em ergen cy: cervical lesion s usually grow very slowly (Gad, 1976; Galvin ,1952).
Th e growin g con sen sus about th e n eed to in terven e in each case of proliferative cervical lesion s did n ot lead to an agreem en t about th e n ature of such an in terven tion . At m an y places, (especially Germ an speakin g coun tries an d th e US) prein vasive epith elia carcin om as were treated as aggressively as th e “m ost locally advan ced but still operable cases”– th at is, with exten sive elim in ation n ot on ly of th e uterus, but also surroun din g tissues an d lym ph n o d es (O ’Do n n el, 1998, p .172-175). In o t h er co u n t ries, gyn eco lo gist s favo red m o re con servative approach es. Gradually, h owever, radical surgery was ph ased out everywh ere an d replaced by local treatm en t of cervical lesion s. Th is sh ift is related to two in depen den t even ts: (1) th e fin din g th at cervical lesion s were very fragile an d were frequen tly destroyed by a diagn ostic biopsy, an d (2) th e parallel rapid in crease in th e n um ber of wom en – often youn g an d fertile – diagn osed with superficial lesion s of th e cervix, th an ks to th e wide diffusion of th e Pap sm ear (Koss et al., 1980; Ben edet et al., 1982).
Saving women: pressures to generalize the Pap smear
Th e Pap sm ear was in itially prom oted by gyn ecologists an d can cer experts, but ch arities, wom en ’s organ ization s, an d politician s soon becam e in terested in th is test.
ASCC’s an d ASMF’s cam p aign s were aim ed at t h e d et ect io n o f alread y exist in g, sym ptom atic, cervical m align an cies, but th ey fam iliarized wom en with th e idea of frequen t gyn ecological exam in ation s an d open ed th e way to screen in g for asym ptom atic (clin ically silen t) cervical lesion s. In ligh t of ASCC’s lon g-stan din g in terest in early detection of cervical can cer, it is n ot surprisin g th at its h eir, th e Am erican Can cer Society (ACS), becam e stron gly com m itted to th e early detection of can cer an d prom oted th e slogan “every doctor’s office
is a can cer detection cen ter” (Day, 1959, p.448-451; Breslow, 1959).6 From th e early 1950s
on , th e ACS en ergetically supported diffusion of th e Pap sm ear.7 Th e ACS spon sored th e
First Nation al Cytology Con feren ce (Boston , 1948) an d fun ded th e train in g of path ologists by George Papan icolaou. Th e gen eralization of exfoliative cytology was also supported by
th e Nation al Can cer In stitute an d th e U.S. Public Health Service (Vayen a,1999).8
At first th e early detection cam paign of th e leadin g British can cer ch arity, th e British Em pire Can cer Cam paign (BECC), covered all m align an t tu m ors. Doctors wh o worked with BECC ackn owledged, h owever, in th eir in tern al publication s, th at in discrim in ate use of th e early detection slogan m igh t be problem atic: early detection of stom ach or liver
can cer does n ot im prove ch an ces of survival.9 Th e BECC experts th erefore elected to focus
on can cers in wh ich early detection (th at is, th e detection of sm all, localized tum ors) is
stron gly correlated with a better progn osis.Lecturers for th e BECC cam paign were told in
th e 1930s to focus on breast an d uterin e can cer, especially if th e public was fem in in e: “by con trast, it is a poor idea to speak about stom ach can cer. Th ere is n o early diagn osis, an d
people with sligh t in digestion will believe th ey h ave can cer.”10 In th e Un ited Kin gdom ,
advocacy of early diagn osis becam e in creasin gly un derstood as a call for th e detection of wom en ’s m align an cies.
In spite of BECC’s in terest in early detection of fem ale tum ors, th is ch arity, un like th e ACS, did n ot play an im portan t role in th e diffusion of Pap sm ear in th e Un ited Kin gdom . BECC’s director, Malcolm Don aldson , visited th e Un ited States in 1950 an d was im pressed by th e ACS- spon sored n etwork of 125 can cer detection clin ics, dedicated m ain ly to th e
diagn osis of cervical m align an cies.11 He believed, h owever, th at such an in itiative was n ot
possible in Britain because th e Nation al Health Service could n ot be persuaded to m ake a substan tial in vestm en t in can cer screen in g. He was overly pessim istic. A grassroots in itiative of a group of wom en , th e Medical Wom en Federation , an association foun ded in Lon don in 1879 to prom ote wom en in m edicin e, led to th e establish m en t of a n ation al screen in g p rogram in th e Un ited Kin gdom . In th e 1960s, th e MW F becam e th e m ain organ ized force beh in d th e Wom en ’s Nation al Can cer Con trol Cam paign . Th e idea to start such a cam paign em erged from a February 18, 1964 m eetin g of th e Stoke Newtin gton Liaison Com m ittee of Wom en ’s Peace Group, in wh ich a doctor, in vited to speak about wom en ’s h ealth , explain ed th at 3,000 wom en die yearly in th e Un ited Kin gdom from an easily preven table disease. On e of th e participan ts at th is m eetin g decided to foun d a com m ittee dedicated to th e prom otion of th e Pap sm ear. Sh e con tacted th e MWF, wh o was im m ediately in terested. A Labor parliam en t m em ber, Joyce Bu tler, join ed th e MW F’s com m ittee for
cervical can cer screen in g an d h elped to put th is issue on parliam en t’s agen da.12
th e Wom en ’s British Legion . Joyce Butler was n am ed th e Cam paign ’s presiden t. Th e MWF h ad lin ks with m ultiple political association s: th e Labor Party, Association for Matern al an d Ch ild Welfare, th e Fam ily Plan n in g Association , Nation al Coun cil of Wom en , British Society for Clin ical Cytology, an d th e Com m un ist Party’s Wom en Com m ittee. On e of th e Cam paign ’s first su ccesses was to prom ote debates on screen in g for cervical can cer in th e Parliam en t an d th e House of Lords. Th e British govern m en t decided to en courage screen in g t h ro u gh p ro vid in g fin an cial co m p en sat io n fo r d o ct o rs wh o co llect sam p les an d t h e open in g of cytological laboratories. Th e n um ber of screen ed wom en tripled between 1964 an d 1966, as did th e n um ber of tech n ician s wh o read cervical sm ears. In 1966, screen in g for cervical can cer was proclaim ed a n ation al service by th e British govern m en t, an d th e Nation al Health Service (NHS) establish ed local co-coordin atin g com m ittees to im plem en t such screen in g, alon g with region al laboratories th at cen tralized th e collection of vagin al
sm ears an d th eir readin g.13 Th is approach did n ot work very well an d in th e early 1970s
British h ealth auth orities decided th at th e m ost efficien t solution would be to switch th e resp on sibility for Pap screen in g to gen eral p ractition ers, su p ervised by p u blic h ealth ph ysician s (Sin gleton , 1993).
Even in coun tries such as Fran ce, wh ere th ere was n o “extra-profession al” pressure to in troduce th e Pap sm ear, public h ealth experts stressed th e im portan ce of screen in g for cervical lesion s to im prove wom en ’s h ealth (Sicard, 1996; Garn ier et al., 1997). Th e old im age of cervical can cer as a “m oth er killer” was th en com bin ed with n ewer dem an ds, of fem in ist in spiration , to replace th e u n iversal m ale body as a stan dard for “n orm al” by payin g greater atten tion to th e specific h ealth n eeds of wom en .
Saving the uterus: from radical to conservative surgery
Before diffusion of th e Pap sm ear, cervical dysplasia, superficial cervical lesion s, an d “carcin om a in situ” – a term th at was con tested by som e specialists – were seen as rare an d un usual con dition s (kn own as “zebras” in m edical jargon ; doctors joke th at wh en a m edical studen t h ears th e soun d of h ooves, h e im m ediately th in ks “oh , it m ust be a zebra”). With th e developm en t of th e Pap test, zebras becam e h orses, th at is, a rare diagn osis becam e a very freq u en t on e. It was d ifficu lt to p rop ose h ysterectom y or rad ioth erap y to all th e wom en diagn osed with such lesion s.
surgical approach . Later, h owever, th e aim of screen in g was redefin ed as th e iden tification an d elim in ation of weak, poorly establish ed cervical lesion s (Welch , 2004).
Agreem en t on th e prin ciple of treatm en t of all lesion s did n ot put en d to debates on wh at cou n ts as a “cervical lesion ”; th e local treatm en t of su rgical excision by con ical biopsy or destruction of a lesion by th erm ocoagulation (an d m ore recen tly by laser treat-m en t) is less aggressive th an radical treattreat-m en t, but it is n ot an en tirely ben ign procedure. It was th erefore im portan t to defin e th e boun dary between th e n orm al an d th e path ological in cervical cytology, n ot an easy task. In 1956, twen ty-five path ologists were sen t twen ty iden tical borderlin e slides an d were asked to determ in e h ow m an y of th e lesion s were precan cerous an d h ow m an y sh ould be classified as true m align an cy. Th e results displayed a perfect Gaussian distribution : th ree path ologists foun d n o can cer, th ree a sin gle case of m align an cy, an d, on th e oth er en d, four h ad foun d n in e cases of true can cer, on e foun d twelve cases, an d on e foun d th irteen such cases (Sieler, 1956). Because path ologists were n ot able to agree wh at a prein vasive lesion of th e cervix was, th ey provided widely divergen t estim ates on th e occurren ce of such lesion s in th e gen eral population . In th e 1950s, such estim ates varied between 0.02% an d 3.5%. At first sigh t, disagreem en ts of th at m agn itude between th e specialists sh ould h ave becom e an in surm oun table obstacle for th e developm en t of m ass screen in g cam paign s. Th is was n ot th e case, h owever. Th e absen ce of h om ogen ous diagn ostic an d progn ostic criteria did n ot h am per a rapid diffusion of th e Pap test an d th e gen eralization of screen in g for prem align an t cervical lesion s.
Th e Pap sm ear was n ever truly stan dardized or m ade fully reliable. It was also n ever
tested in ran dom ized clin ical trials. It becam e, h owever, “th e righ t tool for th e job.”Th e
criteria of d ifferen tiation between d ysp lasia an d in situ can cer rem ain ed flu id . In th e 1970s too, path ologists readily ackn owledged th at “on e m an ’s dysplasia is an oth er m an ’s carcin om a in situ” an d th at th e progression of a precan cerous lesion to in vasive can cer is
an un predictable process.Th ey proclaim ed n everth eless th eir con fiden ce in th e efficacy of
screen in g for cervical m align an cies.
Casper an d Clarke (1998) explain th e practical success of exfoliative cytology as a result of th e developm en t of an efficien t division of labor between cytotech n ician s an d path olo-gists, th e replacem en t of attem pts to create un iversally valid classification s by a locally
n egotiated order, an d th e regulation of laboratories. On ecan add two addition al elem en ts:
An addition al elem en t was th e relative ease of elim in ation of suspicious cervical lesion s. Surgical path ologists agree th at a fin e-grain ed cytological diagn osis of such lesion s h as a restricted role in th e m an agem en t of th ese lesion s:
If on e accepts th at th e cervical in traepith elial n eoplasia [in situ lesion s] is a con tin uous p rocess, th en th e grad e of d e-d ifferen tiation is p rin cip ally a statem en t of p robability of developm en t of an in vasive carcin om a, bu t su ch an aggregate probability statem en t is m ean in gless for th e in dividu al patien t. Th e im portan t elem en t for a wom an diagn osed with a proliferative lesion of th e cervix is th e ease of elim in ation of a suspicious lesion an d n ot details of its h istological diagn osis. 14
Th e dem on stration th at destruction of cervical lesion s was as efficien t as h ysterectom y in elim in atin g th e dan ger of m align an cy led to a greater acceptability of overtreatm en t. Th is developm en t decreased th e n eed for an accurate diagn osis of cervical lesion s even m ore.With th e gen eralization of th e con servative th erapies, th e m ain problem of screen in g becam e to reduce th e n um ber of false n egative diagn oses. An un n ecessary m in or surgery followin g an in correct diagn osis of proliferative lesion of th e cervix is less distressin g th an a failure to detect a poten tially leth al disease. Accordin gly, screen in g tech n iques (readin g of Pap sm ears an d biopsies) were calibrated for h igh sen sitivity (low n um ber of false n egative results) an d low specificity (h igh er n um ber of false positive results).
Th e tran sform ation of th e Pap test in to th e “righ t” tool for th e diagn osis of prein vasive cervical lesion s – or rath er th e righ t tool for th e selection of wom en wh o n eed to be seen by a specialist – did n ot put an en d to debates on th e n atural h istory of cervical lesion s, or th e scope of desirable m edical in terven tion . Debates on th is topic con tin ue in th e early twen ty-first cen tu ry. Evalu ation s of th e rate of p rogression of p rem align an t lesion s to can cer con tin ued to differ widely, an d th e distin ction between dysplasia an d in situ can cer rem ain s fluid (Sprin ggs, 1984; An derson et al., 1991; Payn e et al., 1996; Koss, 1978, 1989). On th e oth er h an d, clin ical guidelin es th at rein forced th e prin ciple of ph ysical elim in ation of every suspicious cervical lesion dim in ish ed even m ore th e practical im portan ce of an accurate classification of th ese lesion s. Such guidelin es accen tuate th e im portan ce of careful colposcopic evaluation of every doubtful case. Th e sligh test suspicion of an om aly sh ould lead to a furth er in vestigation an d, wh en th e doubt persists, to an excision al procedure, preferably a cold kn ife con ization (Salom on et al., 2002; Wrigh t et al., 2002). “Wh en in doubt, cut it out.”
“Not an entirely benign procedure”: the cost of screening
com plication ratio an d m ay occasion ally in duce sterility or problem s durin g pregn an cy
(Outcom e..., 1980; Mc Corm ick, 1989).15 Som e experts criticize an in discrim in ate use of a
m in or but n ot-en tirely-ben ign surgical procedure, a practice fueled, especially in th e Un ited
States, by doctors’ appreh en sion of litigation (Ruba et al., 2004).16
In a culture with a h igh level of fear of can cer, especially am on g wom en , screen in g for cervical can cer m ay h ave an im portan t psych ological cost as well. On e of th e rarely discussed drawbacks of such screen in g is an irreversible gen eration of appreh en sion (Kaufm an , 2000). Th e detection an d th e elim in ation of cervical lesion s greatly reduces th e dan ger of a future m align an cy an d is th erefore h igh ly ben eficial for wom en with proliferative ch an ges in th e cervix. Such an in dividual ben efit h as, h owever, a collective price. Screen in g provides im portan t advan tages for a sm all n um ber of wom en – th ose wh o escaped cervical can cer – but it m ay ch an ge th e sen se of body an d self of m an y oth er wom en wh o do n ot person ally ben efit from th e screen in g. It m ay also un settle th ose wh o fin d th em selves with un clear diagn oses, progn oses, an d futures (McKie, 1995). Wom en wh o received abn orm al results of a Pap sm ear described th em selves as bein g in a lim in al situ ation . Diagn osed with a poten tially th reaten in g con dition with an un certain m ean in g, th ey are n ot sure if th ey sh ould see th em selves as sick or as h ealth y (Fors et al., 2004). Th is is especially true for wom en diagn osed with a persistin g presen ce of atypical cells. Subm itted to an in ten sive m edical surveillan ce (frequen t colposcopies, sm ears, HPV tests, som etim es biopsies), th ey m ay rem ain for a lon g tim e in a lim bo produced by m edical tech n ologies (Welch , 2004). Th e great m ajority of th e experts, but also of activists, en th usiastically en dorsed screen in g for cervical can cer, an d th eir poin t of view is sustain ed by epidem iologic data. Th is does n ot m ean , h owever, th at such screen in g is problem -free. A positive result of a screen in g test, m edical sociologist Nicky Britton proposed, m ay radically ch an ge on e’s view of th e body. Wh en sh e learn ed about th e presen ce of abn orm al cells in h er cervical sm ear, sh e was u n able for several d ays to th in k abou t an yth in g bu t d eath . An d , sh e ad d s, “th e experien ce h as n ot left m e un ch an ged. It is as if, h avin g allowed th e possibility of on e disease to en ter m y body, a h ost of oth er con dition s h ave crowded beh in d it. … I lost an in n ocen ce of outlook” (Britten , 1988: p.296).
Britten believes th at screen in g for cervical can cer is a good an d n ecessary public h ealth m easure. Sh e wish ed on ly to attract atten tion to som e of its m ore problem atic aspects. Th e im portan t poin t, sh e argued, is to in form wom en about th e h azards of screen in g to on e’s m en tal an d ph ysical h ealth , in order to allow th em to m ake truly in form ed ch oices (Britten , 1988). Th e sociologist Naom i Pfeffer agrees. Sh e believes th at sin ce h ealth prom otion in terven tion s such as screen in g for can cer are n eith er n eutral n or in n ocuous, th ey sh ould be subm itted to th e sam e in form ed con sen t rules as oth er m edical acts (Pfeffer, 2004).
Oth er research ers are less sure th at all th e problem s raised by th e gen eralization of screen in g for can cer an d can cer risk can be solved by providin g m ore accurate in form ation about procedures an d outcom es an d explain in g in dividual ch oices m ore clearly. Livin g in a screen in g culture lim its th e possibilities of optin g out of it an d in creases th e price of such “irration al” beh avior for th ose wh o ch oose to do so.
(p ain an d p ostsu rgical com p lication s), p sych ological con seq u en ces of cop in g with an am bivalen t diagn osis, overtreatm en t (surgical elim in ation of lesion s th at will n ever becam e can cerous), un certain ty about m edical in terven tion s an d th e un ique experien ce of screen ed p eop le. Th e latter are in vited to p erceive th em selves at th e sam e tim e as h ealth y an d com plete an d as (poten tially) un h ealth y an d (de facto) flawed. In an optim istic view of th e twen ty-first cen tury “bio-risk culture,” a n ew focus on em bodied risks m akes room for th e sh apin g of n ew iden tities, respon sibilities, allian ces between people, social lin ks, an d creative
ways of bein g in th e world (Rose, 2000).In a m ore pessim istic vision , th e n ew accen t on
th e m an agem en t of can cer risk m ay also un derm in e people’s – an d especially wom en ’s – con fiden ce in th eir bodies (Lupton , 1995) .
Screening for cervical cancer: exemplary or exceptional?
Th e developm en t of efficien t screen in g tools for cervical m align an cies was n eith er sim ple n or lin ear, an d m an y aspects of su ch screen in gs are problem atic: th e precise defin ition of cervical dysplasia an d levels of CIN (cervical carcin om a in situ), th e lin gerin g issue of ASCUS (“at yp ical sq u am o u s cells o f u n d et erm in ed sign ifican ce,” a d iagn o sis wh ich , t ran slat ed in t o t h e vern acu lar, m ean s “we h ave n o id ea wh at yo u h ave”), an d t h e con troversies surroun din g th e desirable th resh old of in terven tion . Neverth eless, th e story m ay be on e of triu m p h of a m edical tech n ology. Th e h istory of screen in g for cervical can cer sh ows h ow tin kerin g with m ultiple an d h eterogen eous resources – cytological stain in g an d th e division of m edical labor, scien tific in strum en ts an d public policies, statistics, an d activism – can tran sform im perfect diagn ostic tests in to “a good en ough tool for th e job.” Th e d rastic d ecrease in m ortality from cervical can cer in Western cou n tries h as been attributed to th e gen eralization of screen in g for th is m align an cy. Wh ile som e specialists con test th is con clusion an d propose th at oth er elem en ts m igh t h ave con tributed (in an un kn own proportion ) to th e declin e in m ortality from cervical m align an cies in population s, few will quarrel with th e proposal th at on th e in dividual level, screen in g (today still m ain ly th e Pap sm ear) h elps to reduce th e n um ber of in vasive cervical m align an cies.
in breast or p rostate, th e cost of th e in terven tion for th e p atien t; an d to p reven tive elim in ation of lesion s in oth er organ s (lun g, pan creas, liver), both (Aron owitz, 2007).
In spite of th e practical difficulties of screen in g for m align an cies, th e profession al an d lay un derstan din g of can cer was an d is sh aped by th e aspiration to iden tify an d elim in ate precan cerou s lesion s. Th e extraordin ary viability of th is idea reflects its plau sibility, its ability to address well-en tren ch ed fears, an d its capacity to ch an n el activities of m ultiple con stituen cies. It also poin ts to th e dan ger of usin g em otion ally ch arged, sim plified n otion s wh en dealin g with com plex ph en om en a.
Presen t-tim e m edicin e, th e political scien tist Louise Russell poin ts out, aspires to detect path ological con dition s before th ey produce sym ptom s: “A com m on th em e run s th rough th e articles, program s, an d waitin g-room broch ures: catch it early, treat it early, an d live lon ger. … Th at com m on th em e, played out in its m an y variation s, is sim ple, direct, an d m isleadin g.” Th e recom m en dation presen ted in publication s th at prom ote early detection , Russell explain s, are pseudo-truth s th at, like th e pseudo-elem en ts of th e ph ysical scien ces, bear a deceptively close resem blan ce to th e real th in g: “th ey con vey rules of th um b developed by experts an d leave out th e com plexities an d tradeoffs, th e m ixture of solid in form ation an d educated guesses, th at h ave gon e in to th eir developm en t” (Russell, 1994:1-2). Historical studies display such discarded com plexities an d tradeoffs an d can th erefore provide a glim pse of th e “real th in g” beh in d om n ipresen t, powerful, plausible, an d oversim plified im ages.
NOTES
* Su bm ission in En glish by th e au th or. Portion s of th is article origin ally ap p eared in Preventive Strikes:
W om en, Precancer, and Prophylactic Surgery, by Ilan a Lö wy (Balt im o re, Th e Jo h n s Ho p kin s Un iversit y
Press, 2010). W h en th e article was su bm itted to th is jou rn al for p u blication , th e book h ad n ot yet been p u blish ed (ed itor’s n ote).
1 Th e Pap sm ear m ay, h owever, soon be d isp laced , esp ecially in d evelop in g cou n tries, by testin g for
“carcin ogen ic” HPV strain s (Sch iffm an , 2009).
2 W illiam s ad d ed th at su ch lesion s rem ain su p erficial for a lon g tim e; h e believed th ey cou ld be cu red
th rou gh local treatm en t (W illiam s,1888:12).
3 Befo re gen eralizat io n o f t h e Pap sm ear, su p erficial lesio n s o f t h e cervix were u su ally d iagn o sed in
wom en with clin ical sym p tom s (bleed in g, vagin al d isch arge, p ain ). It is n ot to be exclu d ed th at in som e cases p resu m ed p rem align an t lesion s were in fact m isd iagn osed in vasive m align an cies (Steven son ,1938; Hoge, 1950).
4 Ch arles St o ckard , t h e h ead o f t h e d ep art m en t o f an at o m y at t h e Co rn ell Med ical Cen t er wh ere
Pap an ico lao u was em p lo yed , h ad a lo n g-st an d in g in t erest in eu gen ics an d m igh t h ave su ggest ed t o Pap an icolaou to p resen t h is fin d in g at a “race betterem en t” con feren ce.
5 Cart er et al. (1952). Th e resu lt s were first p resen t ed at t h e 75t h an n u al m eet in g o f t h e Am erican
Gyn ecological Society in Hot Sp rin gs, Virgin ia, May 12-14, 1952.
6 Day was th e d irector of th e d ivision of p reven tive m ed icin e of Sloan Ketterin g In stitu te for Can cer
Research , New York.
7 See, for exam p le, a letter from Ed ward Rim ley to Ch arles Cam eron , m ed ical an d scien tific d irector of
8 Vayen a’s u n p u blish ed th esis is an excellen t sou rce of in form ation on ACS’s role in th e im p lem en tation
of th e Pap sm ear in th e Un ited States.
9 Un d ated BECC in tern al d ocu m en t, p robably early to m id -1920s; Mem oran d u m on can cer, p rep ared by
Dep artm en tal Com m ittee on Can cer, ap p oin ted by th e Min ister of Health , an d ch aired by Sir George Nu m an n , p u blish ed Ju ly, 1923. Bo x 90, BECC p ap ers, Wellco m e Library, Arch ives an d Man u scrip t s Dep artm en t, Collection SA/ CRC.
10 “Ad vice for m ed ical lectu rers wh o sp eak to lay p u blic,” leaflet, 1936. Box 90; BECC p ap ers, Wellcom e
Arch ives.
11Malcolm Don ald son , “Ed u cation of th e p u blic con cern in g can cer,” Med ical Officer, Sep tem ber 9, 1950.
Box 90, BECC p ap ers, Wellcom e Library, Arch ives an d Man u scrip ts Dep t, series SA/ CRC. Th e ACS was esp ecially active in p rom otin g d iagn osis of p recan cerou s con d ition s, fou n d in a h igh n u m ber of p eop le wh o con su lted can cer d etection clin ics.
12 Wellcom e Library, Arch ives an d Man u scrip ts Dep t, series SA/ MW F, Docu m en ts of th e Med ical Wom en
Fed eration , File F.13/ 3.
13 Press con feren ce of Min ister of Health , Ken n eth Robin son , on cervical cytology, October 10, 1966.
Docu m en ts of th e Med ical Wom en Fed eration , file F.13/ 4. Wellcom e Arch ives.
14Pap ers of th e Arth u r Pu rd y Stou t Society of Su rgical Path ologists, box 1, p ap ers 1957-1986, fold er 6.
Un d ated , p robably 1970s. Colu m bia Un iversity Health Scien ces Library, Arch ives an d Sp ecial Collection s.
15 On a (rare) d iscu ssion of p ain an d su fferin g followin g “rou tin e” biop sies, see Vered Levy-Barzilai, “Hey
d oc –it h u rts,” Haaretz, Ap ril 14, 2006.
16 Th e aggressive attitu d es of som e U.S. d octors toward s p reven tion of gyn ecological can cers was stu d ied
by Fish er (1986).
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