Utilisation of Prophylactic Mastectomy in 10 European Centres · 2019. 8. 1. · 150 D.G.R. Evans et al. / Utilisation of Prophylactic Mastectomy in 10 European Centres surgery if,

Disease Markers 15 (1999) 148–151IOS Press

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148

D.G.R. Evans1, E. Anderson2, F. Lalloo1,H. Vasen3, M. Beckmann4, D. Eccles5,S. Hodgson6, P. Møller7, J. Chang-Claude4,P. Morrison8, D. Stoppa-Lyonnet9,M. Steel2 and N. Haites10

1Department of Medical Genetics, St Mary’sHospital Manchester, UK3Foundation for the Detection of HereditaryTumours, Leiden, Netherlands4FrauenKlinik der Heinrich-Heine-Universitat, Dusseldorf, Germany5Wessex Regional Genetics Service,Southampton, UK6Division of Medical and MolecularGenetics, Guy’s Hospital, London, UK7Unit of Medical Genetics, NorwegianRadium Hospital, Oslo, Norway8Department of Medical Genetics, BelfastCity Hospital, Belfast, UK9Unité de Génétique Oncologique, InstitutCurie, Paris, France10Department of Medical Genetics,University of Aberdeen, Foresterhill,Aberdeen, UK

ABSTRACT: Increasingly women at high risk ofbreast cancer are opting for prophylactic surgery toreduce their risks. Data from 10 European centres thatoffer a risk counselling and screening service towomen at risk show different approaches to the optionof preventive surgery, although most centres adhere toa protocol including at least two risk counsellingsessions and a psychological assessment. Thus far thecombined centres have data on 174 women who haveundergone prophylactic mastectomy with in excess of

400 women years of follow up. Operations werecarried out on women with lifetime risks of 25–80%,with an average annual expected incidence rate of 1%per women. No breast cancers have occurred in thiscohort. Long term follow up on an extended group ofwomen will be necessary to truly address the risk ofsubsequent breast cancer and the psychologicalsequelae.

INTRODUCTION

Management options available to women athigh lifetime risk of breast cancer due to theirfamily history, or to those women known to becarrying a mutation in BRCA1/2 (which confer alifetime risk of breast cancer of 85% [1,2]) arelimited. Screening with mammography is oneoption, as is prophylactic mastectomy. Theefficacy of surgical procedures to reduce the riskof breast cancer is controversial [3,4], although itwould appear that the residual risk of breastcancer is dependent upon the amount of breasttissue remaining following the surgicalprocedure. Recent work suggests that morewomen are considering prophylactic mastectomy[5,6] and that protocols should be in place to dealwith these requests. It has been suggested thatsurgery will increase life expectancy in BRCA1or BRCA2 mutation carriers [7]. A recent studyby Hartmann et al. [8] has demonstrated thatwomen with a high risk of breast cancer cansignificantly reduce the incidence of the diseasewith prophylactic surgery. However, the level ofreduction in those at highest risk (BRCA1/BRCA2 carriers) is still unclear.

In view of this, our European collaboration hassought to develop protocols for women wishing

Short Communication

Utilisation of Prophylactic Mastectomy in 10European Centres

D.G.R. Evans et al. / Utilisation of Prophylactic Mastectomy in 10 European Centres 149

to consider surgery and to assess the long-termoutcomes in terms of cancer prevention andpsychological sequelae.

Genetic counselling and the family historyclinic

Family history clinics have been established atthe ten participating centres (Table 1) between1987 and 1992. They are administered byconsultants in medical oncology, clinical geneticsand breast surgery often with a multidisciplinaryapproach, with close involvement of radiologists,and a psychiatrist/psychologist.

At the initial appointment, a risk assessment ismade from the family history using the Clausdata [9]. Women at a lifetime risk of breastcancer of 1 in 6 or greater are offeredmammography and clinical examination on a 12–18 monthly basis between the ages of 30–35 and50 years. If appropriate, genetic testing isdiscussed with women at this initial visit. Threeof the centres (Manchester, Edinburgh,Heidelberg/Dusseldorf) routinely mention thepossibility of prophylactic mastectomy to thosewomen with a lifetime risk of 1 in 4 orgreater. This is often done with a single sentenceor a statement of the availability of the procedureas an option for prevention of breast cancer. Thisthen allows women to extend the discussion ifthey wish to do so, or to state that they are notinterested in surgery.

THE PROPHYLACTIC MASTECTOMYPROTOCOL

If women wish to discuss the procedure ingreater detail, most centres offer a furtherappointment at least one month later. This giveswomen time to consider the procedure more fullyand to discuss it with appropriate members of thefamily. Involvement of the partners in thedecision making process is usually encouragedand they are, therefore, invited to attend eachappointment. At the second appointment, withthe geneticist or oncologist, a basic description ofthe surgery is given including the potentialresidual risk of various procedures. It isemphasised that the residual risk andcomplication rate may be higher if the surgerypreserves the nipple/areolar complex. It is alsousually made clear that these procedures arelargely unproven [3,4] as to their efficacy inreducing the risk of breast cancer. The patient isalso challenged to consider the complicationswhich may result in a potentially poor cosmeticresult, as well as the possible impact upon herpersonal life and family dynamics.

The possibility of genetic testing is alsodiscussed in terms of the availability of a livingaffected member of the family and the basicunderlying structure of the family [10]. Ifpossible, a time scale for genetic testing isdiscussed, and the woman is asked to considerthe potential impact of having proceeded with

Table 1Number and type of prophylactic mastectomies carried out by centre

Centre No Ages (years) Mean SM MM Bilat Contralat BRCA1/2Manchester 74 21–58 40 18 56 69 5 11Edinburgh 34 32–60 43 0 34 15 19 2Aberdeen 15 34–58 43.5 5 10 13 2 3Leiden 15 20–37 36.5 8 7 15 0 ?Dusseldorf 8 29–46 38 3 5 8 0 1Oslo 12 27–51 39.5 6 6 11 1 0Southampton 6 32–57 43.5 4 2 3 3 0Belfast 5 32–57 40 5 0 2 3 1Guys 5 28–37 34 2 3 4 1 1Paris 4 28–51 40.5 2 2 1 3 0

No - number; Bilat - bilateral; contralat - contralateral; SM - simple mastectomy; MM - modified mastectomy (includessubcutaneous).

D.G.R. Evans et al. / Utilisation of Prophylactic Mastectomy in 10 European Centres150

surgery if, later, she undergoes genetic testingwhich shows that she does not carry the causativemutation. Centres also emphasise that thegenetic risk of breast cancer decreases with ageand that the remaining risk of breast cancer if thewomen is older (over 40), is lower than thelifetime risk [9]. If a woman wishes to proceed, apsychological assessment is arranged. At thisstage, confirmation of the breast cancers in thefamily are proactively sought by most centres if ithas not already been completed. This ensures thatthe risk assessment is as accurate as possible. Inone of our centres (Manchester) we have reportedthe presence of factitious histories within somefamilies [11] and other centres, in confidence,confirm this experience.

After a psychological assessment, a moredetailed surgical consultation is arranged todiscuss the type of procedure best suited to thewoman and whether a one or two stage procedureis preferable. This usually involves discussion of3 basic options. The first; total bilateralmastectomy, the second; bilateral mastectomywith reconstruction, either with implants or tissueflaps, and the third; bilateral subcutaneousmastectomy which retains the overlying skin andnipple/areolar complex. The potentialcomplications are also discussed along with theexpected cosmetic result. Surgeons will usuallyhave photographs available for women to view ifthey wish and may also arrange personalmeetings with one or more patients who havealready undergone bilateral mastectomy withreconstruction.

The whole process of consultations through tosurgical procedure usually takes 6–12 months.This time delay is deliberate, in most centres,with the greatest delay at the beginning of theprotocol in order to allow women time for thedecision making process. If the protocol is runconcurrently with a decision for predictivegenetic testing, then the wait will generally beshorter. The number of women who are known tohave undergone prophylactic surgery in eachcentre is shown in Table 1. The full protocol oftwo sessions at the family history clinic, a sessionwith a psychiatrist and sessions with the surgeonswas established in 1993 in Manchester. While

only 2 other centres have a similar writtenprotocol the remaining clinics generally adhere tothe basic principles. The major difference is thatseveral centres are mainly reactive, meaning thatprophylactic surgery will usually be formallydiscussed only with women proven to beBRCA1/2 mutation carriers. No centre activelyrecommends the procedure even in the lattercategory.

There is no clear pattern in terms of thesurgical procedure recommended in women whohave decided on surgery. While some units arecautious about offering skin/nipple-preservingmastectomies, these options are generallyavailable in every case.

FOLLOW-UP

Follow up of women who have undergonesurgery is considered an important part of theprotocol in each centre. In Manchester, womenwho have undergone prophylactic mastectomyare followed up annually at a “multidisciplinaryday”. As well as discussion of problems/issueswith all the relevant clinicians (Geneticist/oncologist/psychiatrist/surgeons), each patient isexamined. Clinical examination by palpation ofthe breasts is felt to be adequate as remainingbreast tissue is very superficial in all types ofsurgical procedure. Thus far, no cancers haveoccurred prospectively in the 174 women whohave undergone surgery. Using data from Claus[9] and the International Linkage Consortium [1]it is possible to calculate annual age dependantexpected incidence rates for breast cancer inwomen who have not undergone surgery. Themean expected rate for our cohort of women is1% annually, reflecting a lifetime risk that rangedfrom 25–80%. Even though this cohort alreadyhas a follow up in excess of 400 woman years,only 4 cancers would have been expected. Followup of an extended cohort for more than 5 yearswill be necessary to address the issue of riskreduction. If this is to be analysed by type ofsurgery or by confining to known BRCA1/2mutation carriers, (currently only 17/174) evenlonger follow up will be necessary.

D.G.R. Evans et al. / Utilisation of Prophylactic Mastectomy in 10 European Centres 151

References

[1] Ford, D., Easton, D.F., Bishop, D.T., Narod, S.A.and Goldgar, D.E. Risks of cancer in BRCA1-mutation carriers. Lancet 343, (1994) 692–695.

[2] Wooster, R., Neuhausen, S.L., Mangion, J. et al.Localization of a breast cancer susceptibilitygene, BRCA2, to chromosome 13q12-13. Science265, (1994) 2088–2090.

[3] Goodnight, J.E., Quagliana, J.M. and Morton,D.L. Failure of subcutaneous mastectomy toprevent the development of breast cancer. J.Surg. Oncol. 26, (1984) 198–201.

[4] Zeigler, L.D. and Kroll, S.S. Primary breastcancer after prophylactic mastectomy. Am. J.Clin. Oncol. 14, (1991) 451–454.

[5] Lynch, H.T., Lemon, S.J., Durham, C. et al. Adescriptive study of BRCA1 testing and reactionsto disclosure of test results. Cancer 79, (1997)2219–2228.

[6] Eeles, R., Cole, T., Taylor, R., Lunt, P. andBaum, M. Prophylactic mastectomy for genetic

predisposistion to breast cancer: the proband’sstory. Clin. Oncol. 8, (1996) 222–225.

[7] Schrag, D., Kuntz, K.M., Garbor, J.E. andWeeks, J.C. Decision analysis — effects ofprophylactic mastectomy and oophorectomy onlife expectancy among women with BRCA1 orBRCA2 mutations. N. Engl. J. Med. 336, (1997)1465–1471.

[8] Hartmann, L.C., Schiad, D.J., Woods, J.E. et al.Efficacy of bilateral prophylactic mastectomy inwomen with a family history of breast cancer. N.Engl. J. Med. 340, (1999) 77–84.

[9] Claus, E.B., Risch, N. and Thompson, W.D.Autosomal dominant inheritance of early-onsetbreast cancer; implications for risk prediction.Cancer 73, (1994) 643–651.

[10] Eeles, R. Testing for the breast cancerpredisposition gene, BRCA1. BMJ 313, (1996)572–573.

[11] Evans, D.G.R., Kerr, B., Cade, D., Hoare, E. andHopwood, P. Fictitious breast cancer familyhistory. Lancet 348, (1996) 1034.

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Utilisation of Prophylactic Mastectomy in 10 European Centres · 2019. 8. 1. · 150 D.G.R. Evans et al. / Utilisation of Prophylactic Mastectomy in 10 European Centres surgery if,