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Time to decide about risk-reducing mastectomy: A case series of BRCA1/2 gene mutation carriers McCullum, Mary; Bottorff, Joan L; Kelly, Mary; Kieffer, Stephanie A; Balneaves, Lynda G Mar 6, 2007

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ralssBioMed CentBMC Women's HealthOpen AcceResearch articleTime to decide about risk-reducing mastectomy: A case series of BRCA1/2 gene mutation carriersMary McCullum*1, Joan L Bottorff2,3, Mary Kelly2, Stephanie A Kieffer2,4 and Lynda G Balneaves2Address: 1Hereditary Cancer Program, BC Cancer Agency, Vancouver, BC, Canada, 2School of Nursing, University of British Columbia, Vancouver, BC, Canada, 3Faculty of Health and Social Development, University of British Columbia – Okanagan, Kelowna, BC, Canada and 4Department of Medical Genetics, University of British Columbia, Vancouver, BC, CanadaEmail: Mary McCullum* - mmccullum@bccancer.bc.ca; Joan L Bottorff - joan.bottorff@ubc.ca; Mary Kelly - marykelly@nursing.ubc.ca; Stephanie A Kieffer - skieffer@cw.bc.ca; Lynda G Balneaves - balneaves@nursing.ubc.ca* Corresponding author    AbstractBackground: The purpose of this research was to explore women's decision-making experiencesrelated to the option of risk-reducing mastectomy (RM), using a case series of three women whoare carriers of a BRCA1/2 gene mutation.Methods: Data was collected in a pilot study that assessed the response of women to aninformation booklet about RM and decision-making support strategies. A detailed analysis of threewomen's descriptions of their decision-making processes and outcomes was conducted.Results: All three women were carriers of a BRCA1/2 gene mutation and, although undecided,were leaning towards RM when initially assessed. Each woman reported a different RM decisionoutcome at last follow-up. Case #1 decided not to have RM, stating that RM was "too radical" andearly detection methods were an effective strategy for dealing with breast cancer risk. Case #2remained undecided about RM and, over time, she became less prepared to make a decisionbecause she felt she did not have sufficient information about surgical effects. Case #3 hadundergone RM by the time of her second follow-up interview and reported that she felt "a load off(her) mind now".Conclusion: RM decision making may shift over time and require decision support over anextended period.BackgroundAs testing for BRCA1/2 gene mutations becomes morewidely available as a clinical service, increasing numbersof women are being identified at high risk for breast andovarian cancer. Female BRCA1/2 carriers are told theyoption for breast cancer risk reduction that is offered towomen who learn they are carriers of a BRCA1/2 genemutation. Although reported interest in RM varies byclinic setting and country, up to half of women at high riskfor breast cancer express either the intention to have RMPublished: 6 March 2007BMC Women's Health 2007, 7:3 doi:10.1186/1472-6874-7-3Received: 17 July 2006Accepted: 6 March 2007This article is available from: http://www.biomedcentral.com/1472-6874/7/3© 2007 McCullum et al; licensee BioMed Central Ltd. This is an Open Access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/2.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.Page 1 of 9(page number not for citation purposes)have an estimated lifetime risk of breast cancer between50% and 85% [1]. Risk-reducing mastectomy (RM) is oneor some uncertainty about this decision [2-4]. Our clinicalobservations indicate that with increased access toBMC Women's Health 2007, 7:3 http://www.biomedcentral.com/1472-6874/7/3BRCA1/2 genetic testing, more high-risk women are con-sidering RM and the majority of these women requestadditional information and support with this difficultdecision.An emerging body of research describes high-riskwomen's experiences and satisfaction with RM [5]. In oneof the first long-term studies of the psychological impactof carrying a BRCA1/2 mutation and risk-reducing sur-gery, women reported adverse consequences of RM (i.e.,changes in sexual function and body image), although themajority of the women believed the benefits of decreasedfear outweighed the negative outcomes they experienced[6]. Another recent study found that half of women whohad RM experienced ongoing physical problems up to 18months following their surgeries [7]. Re-operations havealso been reported as common following RM withimplant reconstruction, usually for implant-related issues[8]. Bresser et al. and Metcalfe et al. explored satisfactionwith RM and subsequent breast reconstruction with simi-lar results; women were satisfied overall, with a significantnumber reporting post-operative complications [9,10].Women's satisfaction with decision making specific tobreast cancer risk-reducing strategies has been shown tobe enhanced with the use of decision aids or a tailoreddecisional support system [11,12]. However, there are rel-atively few studies that have assessed high-risk women'sactual decision-making processes related to breast cancerrisk management.Although high-risk women may receive clinical recom-mendations about prophylactic oophorectomy, chemo-prevention, and breast screening, most clinicians aremuch less directive about RM and encourage women tomake their own decisions. Because of the highly personalnature of this decision, most health care providers attemptto support women's decision making about RM ratherthan make recommendations for or against surgery. Thedecision-making process related to RM is complexbecause of the individual nature of the decision, and theimplications that RM holds for women's body image arenot well understood. Women experience uncertainty andambivalence about RM [13,14] and health care providersmay be unsure about how best to support women's RMdecision-making. Among the many decisions faced bywomen at high risk for breast cancer, decision makingrelated to RM is significant because asymptomatic womenare considering an irreversible surgical procedure that hasthe potential to impact their physical and emotional well-being for the rest of their lives.The purpose of this research was to explore women's deci-sion-making experiences related to the option of RM,sion outcomes were selected to explore the complexity ofthe decision-making process, and the manner in whichwomen deliberated over and revisited their decisionsbefore resolving their treatment choices.MethodsData were collected in a pilot study that assessed theresponse of women to a decision-making interventionrelated to RM. Because of the exploratory nature of thestudy, a mixed-methods approach was used that includedstandardized measures as well as open-ended interviewquestions to fully capture women's experiences.The study explored high-risk women's decision-makingprocesses in order to guide efforts to provide decision sup-port about RM. Eligibility criteria for the pilot studyincluded: 1) being at high risk for hereditary breast cancer;2) requesting assistance from the provincial HereditaryCancer Program with decision making about RM; 3) didnot have breast cancer; 4) were over 18 years of age; and5) spoke and read English. Ethics approval was granted byinstitutional ethical review boards and all participantsgave informed consent.Following baseline data collection, participants received abooklet describing RM developed by the research team.The booklet included available evidence related toexpected benefits and potential risks associated with RM,and a worksheet to guide decision making. Women wereoffered a follow-up consultation either by telephone or inperson with one of the co-investigators, a hereditary can-cer nurse educator (MM). We contacted women by phoneon two occasions following the consultation to collectdata about their decision-making process. Question-naires, developed by the investigative team, were admin-istered to participants at baseline, and approximately twoand six months after their consultation. The question-naires measured self-perceived knowledge of breast cancerscreening and RM, factual knowledge of breast cancer andRM, breast cancer worry, mood state, decision conflict,decision confidence, degree of satisfaction with the RMdecision support booklet, as well as family cancer history.The measures that are reported on are defined below Table1. The final telephone contact also included a semi-struc-tured interview to review and verify women's decision-making experiences over time and to obtain additionaldata regarding factors that influenced their decision mak-ing. All telephone interviews were audio-taped and tran-scribed verbatim.We selected three cases to represent different decision out-comes regarding RM among the women who tested posi-tive for a BRCA1/2 gene mutation. Data from thePage 2 of 9(page number not for citation purposes)using a case series of three women who are carriers of aBRCA1/2 gene mutation. Three cases with different deci-questionnaires and interview transcripts were analyzed.Summative scores for study measures were calculated forBMC Women's Health 2007, 7:3 http://www.biomedcentral.com/1472-6874/7/3each time interval (see Table 1) and content analysis ofinterview data was completed. The measures at the threetime points were evaluated to identify individual trends inthe decision-making process. These trends were then com-pared to the qualitative data and a synthesis was devel-oped to provide a detailed narrative of each woman'sdecision-making trajectory. Minor changes have beenmade to the details of each case to maintain participants'confidentiality (e.g. we do not identify whether they hada BRCA1 or BRCA2 gene mutation, and have modifiedtheir family histories) and permission to report each casewas obtained.ResultsA description of each woman's decision-making experi-ences is presented to reflect their narratives and the con-text in which their decisions were embedded.Case #1This 40-year-old healthy woman began to think about RMafter she received a positive BRCA genetic test result. Shehad attended genetic counselling several months earlierwith her sister, who also received the same result.Although RM was presented as one of the options to con-sider during her genetic counselling sessions, it was at herfirst high-risk screening clinic appointment, several weeksBreast cancer was not an unfamiliar event for this woman.Her mother, one aunt, two maternal great-aunts and twoof her mother's cousins had all been diagnosed withbreast cancer, and several friends had received cancer diag-noses at young ages. After her mother's breast cancer diag-nosis eight years earlier, this woman stopped doingregular breast self-examinations, because she felt too anx-ious about the likelihood of finding a lump. She admittedthat worry about breast cancer strongly affected her abilityto perform daily activities even though none of her closefemale relatives affected by breast cancer had died of theirdisease. At baseline, she perceived her knowledge of breastcancer screening and RM to be low, and she reported amoderate level of decision conflict (see Table 1).In her follow-up consultation, two months after receipt ofthe RM booklet, she stated that when she first learnedabout RM, she felt that she "didn't have a choice," andwas, therefore, leaning towards having RM. After "lots ofthinking about it" and searching out information, shelearned that surgical removal of her ovaries would "freeher" from the worry of ovarian cancer, which is associatedwith carrying a BRCA gene mutation, and also reduce herrisk of breast cancer. She decided that undergoing anoophorectomy (and hysterectomy) was the "first step, thesmartest step" and represented an option that was "lessTable 1: Participants' knowledge and decision measures related to risk-reducing mastectomy (RM) at follow-up intervalsCase #1 Case #2 Case #3Measure Baseline 1st Follow-up2nd Follow-upBaseline 1st Follow-up2nd Follow-upBaseline 1st Follow-up2nd Follow-upKnowledge score1 6/10 8/10 9/10 9/10 9/10 9/10 7/10 7/10 7/10Perceived level of knowledge of RM25/10 6/10 8/10 7/10 5/10 5/10 7/10 7/10 9/10Perceived level of knowledge of breast screening24/10 7/10 8/10 7/10 5/10 7/10 8/10 8/10 6/10Decision conflict3 2.42 2.58 2.58 1.0 1.83 3.33 2.16 1.83 2.33Confidence with decision making4n/a 9.2 8.2 n/a 8.0 5.0 n/a 9.5 9.5Decision status5 Leaning to RMLeaning to RMDecided no RMLeaning to RMLeaning to RMUndecided Decided yes RMLeaning to RMHad RM1Knowledge was measured using a series of ten true/false questions that were developed to assess women's knowledge about RM.2Participants rated their perceived level of knowledge about RM and breast cancer screening on a ten point scale, where 1 is poor and 10 is excellent.3Decision Conflict Scale [22,23] – A 12-item 5 point scale that assesses four areas of decision making: (uncertainty, feeling uninformed, clarity of values, and feeling unsupported). Scores may range from 1 (low decisional conflict) up to 5 (high decisional conflict).4Confidence with Decision Making [24] – A 4-item 11 point scale that assesses level of confidence that advantages and disadvantages are understood, that a decision will be made, and of talking with health care providers about RM. Scores may range from 0 (not at all confident) to 10 (completely confident).5Decision status [23]: Participants were asked to select the one of the following statements that best described their current thoughts about RM: You have decided to have prophylactic mastectomy; You are leaning towards having prophylactic mastectomy, but have not made a final decision; You have not decided one way or the other about prophylactic mastectomy; You are leaning towards not having prophylactic mastectomy, but have not made a final decision; You have decided not to have prophylactic mastectomy.Page 3 of 9(page number not for citation purposes)after receiving her test result, that she requested moreinformation about RM and was given the RM booklet.radical" and "made much more sense" for her than havingher breasts removed. Because this woman had a history ofBMC Women's Health 2007, 7:3 http://www.biomedcentral.com/1472-6874/7/3painful menstrual cycles and already had children, she feltthat she "did not need" her uterus and ovaries anymore;furthermore, she perceived the hysterectomy to be a deci-sion with "internal" effects only.Compared with risk-reducing oophorectomy and associ-ated hysterectomy, thinking about RM resulted in farmore unanswered questions for this woman, especiallywith regard to details of the surgery and breast reconstruc-tion. She referred to RM as a "stage two option" that mightbe taken in the future, whereas she viewed herself at "stageone". The woman reflected on her approach to making adecision about RM and said, "I think I have to do it in astep process to know that this is absolutely what I have todo." At this time, she described regular breast screening asa pro-active step she could take to protect herself, andwanted to find out how screening would affect her emo-tional health over time.Three months after the consultation, during the first fol-low-up interview, she indicated she was still leaningtowards having RM, but had not made a final decision.Her perceived knowledge of RM and breast screening hadincreased slightly by this time, and her decision conflictremained stable, but she scored extremely high on thedecision confidence scale. Six months later, at the secondfollow-up interview, this woman talked convincinglyabout her positive experience with oophorectomy/hyster-ectomy some months earlier, and reported that she hadfurther modified her decision about RM. Confident thatremoving her ovaries had "covered all her bases" in termsof preventing cancer, she had decided not to have RM. Atthis time, her perceived knowledge levels had againincreased slightly, her decision conflict was unchanged,and her decision confidence remained high.Reflecting on the shift in her decision making over time,this woman stated that her initial reaction was made"without really thinking it through" and that she nowrealized that RM was "too radical" and that unlike ovariancancer, early detection methods were an effective strategyfor dealing with breast cancer risk. She reported that breastself-exam was easier after her oophorectomy without asmuch estrogen circulating in her body, and she believedshe would be able to detect a significant change in herbreasts, if one occurred, or that it would be found by thehigh-risk breast cancer screening program in which shewas now participating.When asked how the RM booklet had influenced her deci-sion, she described the booklet as something that "helpedher a lot" in terms of organizing her thoughts, weighingthe pros and cons of each option, preparing her to make adesire for more information than was provided, especiallyin the form of example case studies. When asked whatwould be most helpful if she was to revisit her decisionabout RM in the future, she identified, as a priority, theopportunity to speak with women who had experiencedRM firsthand.Her reflection on decision making about RM illustratesher increasing uncertainty and the unexpected complexityof this decision:I think that it's something that you really do have to thinklong and hard about. Really have to look at all the risk fac-tors. You have to have all the information in front of you.Talk to your health care professional. Talk to your spouseor whoever is important. It's not something that you canjust make a split decision and just, 'This is what I'm goingto do,' cause that's what I did initially and it's probably areaction that a lot of people have. 'That's it. I'm just goingto have them off, to do this. I've made the decision'. It'snot that easy of a decision. Something that you really haveto think about because this, it's big. It's a big surgery.Case #2This 49-year-old woman, who described herself as calm,secure and relaxed, found that her decision about whetherto have RM became increasingly difficult over time.Genetic testing by a relative with both breast and ovariancancer had identified a BRCA gene mutation in her family.She pursued genetic testing after her mother, who hadrecently been diagnosed with breast cancer, was found tohave the same gene mutation. Four months after receivingher own positive result, this woman initiated a discussionabout RM during her appointment at the high-risk screen-ing clinic and was given the RM booklet. Her baselinescores showed that she perceived her knowledge aboutbreast cancer screening and RM to be relatively high, andthat she experienced no decision conflict (see Table 1).She stated that she leaned strongly towards having RMafter she received her genetic test results and learned aboutthe surgical option.At her consultation, two months after receipt of the RMbooklet, she expressed concerns about her tentative planto have risk-reducing oophorectomy, and appeared morefocused on this decision than on RM. She was particularlyworried about the after-effects of "instant menopause"and raised issues about hormone replacement therapy,quality of life, and associated health risks. Her sister expe-rienced an extremely difficult time after undergoing hys-terectomy (including oophorectomy), and she worriedthat her quality of life might diminish as well. Althoughshe thought she would "go ahead" with the surgery, shePage 4 of 9(page number not for citation purposes)better decision, and ensuring that her time with doctorsran "more smoothly." However, she also expressed awanted to talk with other women who had already hadthe procedure.BMC Women's Health 2007, 7:3 http://www.biomedcentral.com/1472-6874/7/3Nevertheless, at this time she maintained she was stillleaning towards having RM and was emphatic that shewas not concerned about losing her breasts and her repro-ductive organs. She admitted, however, to feeling "toonervous" to look at online photographs of breastlesswomen because they might be "too graphic". She raisedquestions about breast reconstruction options and proce-dures, and wanted to speak with women who could tellher about the experience firsthand. When she sharedinformation about RM with her sisters and her mother,she said they were "shocked" that she would seriouslyconsider such a "severe choice." One sister stated that shehad heard horror stories from women who had gonethrough this surgery. The participant concluded that if shedecided to have RM, she would not be able to tell her fam-ily about her decision until after the surgery.At the first follow-up interview, she had already had heroophorectomy/hysterectomy and was still consideringRM. Her decision conflict score related to RM was slightlyhigher than her baseline score, while her perceived knowl-edge levels had decreased (see Table 1). She maintainedthat she was still leaning towards a decision to undergoRM. Although she still had unanswered questions aboutthe effects of the surgery, her high decision confidencescore was indicative of her perceived ability to make adecision about RM.However, four months later at the second follow-up inter-view, this woman described herself as "not decided oneway or the other about RM," and reported that she wasnow less confident in her ability to make a decision, andless confident that she understood the risks. Study meas-ures showed that her decision conflict score had increasedagain, while her decision confidence score had decreased,and her perceived knowledge level scores remained atmoderate levels. She found that the decision becameincreasingly difficult as she gathered more informationand developed new questions about breast reconstruc-tion. She wondered about how her body would look with-out breasts and after reconstruction, the possibility of scartissue build-up, the effect on her body if she elected tohave larger breasts constructed, and the longevity ofimplants or reconstruction over time. She appeared tohave realized that she had not gathered all the informa-tion she needed and she stated she might need to maketime to re-read the RM booklet to help clarify some of theissues that had arisen for her.One of the strongest factors influencing this woman'sdecision making about RM was her disappointment withthe surgery she had to prevent ovarian cancer and reduceher risk of breast cancer. The severe symptoms she experi-her to begin using hormone replacement therapy (HRT),a decision that she questioned because of links betweenHRT and breast cancer. She realized that she did not havesufficient information about the implications of her firstsurgery and that there might have been other options shecould have considered. She seemed determined to not letthis happen again with other decisions, particularly RM.The inconsistent medical advice regarding RM (and alsoHRT) provided to her, her sister and her mother (each liv-ing in a different province) increased her confusion andindecision, and left her feeling angry and frustrated.The fact that no one in her family had died from breast orovarian cancer seemed to add to this woman's indecisionabout RM. Because her mother's breast cancer was diag-nosed at an older age and she thought it was caused bylong-term use of HRT, this woman did not currently per-ceive her own breast cancer risk to be extremely high,despite her genetic test results. She worried about how herbody would look following breast removal and aboutscarring that would be left. Reflecting on the course of herdecision making and the importance of information, sheremarked:It has gotten more and more difficult, [whereas] at thevery beginning it just seemed like a no-brainer... I'm stillnot clear about how many surgeries and I'm still not, andwhen I say clear, it's not perfectly clear about the skin. Ithought that I had the implants at the time of the surgerybut it sounds like you don't. It sounds like you have tohave the skin extenders in and then go back a second timefor the implants. All that kind of stuff, it's not really clearto me.... I'm not complaining or anything like that. ButI'm just saying it's a very difficult situation, there's just notenough information out there, long term.She decided that she needed to go back and speak with thesurgeon again. In the meantime, she was committed toparticipating in regular breast screening to provide thereassurance she needed while putting the decision aboutRM "on the back burner" Her indication that she wasmore inclined to withstand the surgery rather than riskever being told she has cancer, suggests that this decisionwould not be put aside for the long term.Case #3This 59-year-old woman had an extensive history of breastcancer on both sides of her large family, with two sisters,two aunts and four cousins having been diagnosed withthe disease. Not surprisingly, worry about breast canceraffected her mood "a lot." Five months after she receivedpositive BRCA gene test results, she felt ready to "takeaction" and received the RM booklet on the suggestion ofPage 5 of 9(page number not for citation purposes)enced afterwards, attributed to "the hormone battle"caused by the surgical removal of her ovaries, promptedher sister, who was aware of her plans to undergo both RMand risk-reducing oophorectomy. This woman stated thatBMC Women's Health 2007, 7:3 http://www.biomedcentral.com/1472-6874/7/3her initial decision was to have her breasts removed, andalthough she never completely changed her mind, post-operative complications from her oophorectomy createdadditional doubts and it became difficult for her to final-ize a decision about RM. She wondered when, and if, shewould be ready to undergo another surgery. At baseline,she perceived her knowledge of breast cancer screeningand RM to be good and she reported a moderate level ofdecision conflict (see Table 1).At her consultation, two months after receiving the RMbooklet and a week after oophorectomy surgery, shestated, "I can't honestly say that I'm not scared...but Ireally feel in my heart that it's [RM] the right decision." Atthe first follow-up interview, she reported that the booklethelped her "a great deal" to organize her thoughts aboutthis decision, consider the pros and cons of RM, and iden-tify the questions she needed to ask. In interactions withfamily, friends and doctors, she sought opinions andgauged their reactions to assist her in finalizing her deci-sion. Turning to health care professionals for advice, shefound they would not weigh-in on the decision. Shedescribed how she repeatedly attempted to gain the per-sonal opinion of health care providers and how a "slip" byone oncologist was interpreted as approval to go forwardwith surgery. She found this to be reassuring. The breastcancer experiences of two sisters, one of whom died of hercancer, were also influential in her decision about RM.Although both sisters participated in breast screening,their tumours were identified between their regular mam-mograms. This woman did not want to risk being diag-nosed with breast cancer later in life or regret not havingdone everything she could to prevent it.At the second follow-up interview three months later, thiswoman confirmed she had undergone RM, one monthearlier. She stated that "even up to the very end I was say-ing, oh my God, oh my God." She recalled that she re-reador referred to all the sections of the RM booklet in themonths preceding surgery. When she accepted the RM sur-gery date, she described still feeling unsettled about thedecision until her husband "cleared the air" for her. Hehad left the RM decision to her, but when she mentionedto him that she might not go through with the surgery, hetold her: "Maybe you have to look at this as something youhave to do for your health." After hearing this, she recalled,"I knew absolutely that day, that the decision I was mak-ing was the right decision for me." Reassured that heradult children and surgeons also believed her decision tobe a good one for her situation, she had felt ready to goforward with the surgery.Although she acknowledged that the process had not beenmaking process, her decision confidence score remainedvery high, her decision conflict score remained consist-ently moderate, her perceived knowledge of RM scoresteadily increased and her perceived knowledge of breastcancer screening decreased (see Table 1). She describedthe immediate after-effects of the RM as "amazing," feel-ing as though "a load was off my mind". She stated thatthis was the first time since her sister was diagnosed withbreast cancer five years earlier that she was able to feelcarefree about life.Although ultimately deciding to have RM, she highlightsthe difficulties of her decision making in the followingway:It was just the thought of, was I doing something need-lessly. And was I being selfish, in wanting to, let's say okay,not me, you know. It was just simply making the decision,that was just, it was just. At first I thought it was pretty easyto say 'Well okay I have some options here now', and oneof the ones is I can have prophylactic mastectomy. And Ijust thought that was a more definite thing, and, uh, themost challenging thing to me was that nobody would tellme, nobody would tell me what to do. Like, I ultimatelyhad to make the decision myself. That was the most chal-lenging I think.DiscussionThe experiences described in this study represent three dif-ferent RM decision outcomes by three healthy womenwho carry a BRCA1/2 gene mutation, received the RMinformation booklet to support their decision making,and were initially leaning towards RM. Case #1 decidedagainst RM; over the course of a year, she clarified her val-ues, gathered information, and changed her initial deci-sion. Case #2 remained undecided about whether to haveRM. As she gathered more information over the year, shebecame more ambivalent about RM. Case #3 proceededwith RM, despite several months of increasing doubt aftermaking that decision. She searched for reassurance andencouragement to proceed with surgery, before confirm-ing her decision.The women represented by these cases demonstrate threedifferent decision-making processes related to the optionof RM and underline the importance of time in that proc-ess. Each woman felt she was leaning towards RM whenfirst informed about the surgical option near the time ofreceiving her genetic test results. Those initial thoughtsabout RM, however, evolved over the course of follow-up,which ranged from eight to twelve months. For these threewomen, it appeared important to take time to make aninformed decision about RM, one that they could livePage 6 of 9(page number not for citation purposes)easy, she expressed definite satisfaction with the decisionafter the surgery was complete. Throughout the decision-with comfortably, that reflected their own needs and val-ues, and that was based on a good knowledge of the risksBMC Women's Health 2007, 7:3 http://www.biomedcentral.com/1472-6874/7/3and benefits of surgery and the effectiveness of other can-cer risk-reducing strategies. Although the comprehensive,longitudinal data collected in this prospective study pro-vided a rich, detailed description of each woman's experi-ence, which was verified by each participant, we recognizethat there may be other RM decision-making experiencesthat are not represented by this case series.Women who live with a BRCA1/2 gene mutation face adifficult and complex decision regarding RM, and thesethree cases highlight some of the challenges inherent inthis decision. All three women focused strongly on qualityof life issues, specifically the risk of decreased quality oflife (i.e., associated with the impact of surgery on theirphysical health, body image and relationships) versus thebenefit of a significant reduction in breast cancer risk. Lit-tle research exists that addresses the quality of life issuesfor women who have undergone RM [15]. Struggling withuncertainties, these women spent much time reviewingthe study RM booklet as well as locating additionalsources of information in an attempt to resolve their ownquestions about the impact of RM on their lives. In someinstances, the uncovering of new information raised newconcerns; for example, learning more about breast recon-struction generated questions for Case #2 about the com-parative risks and details of the different surgical choices.Hallowell has observed that health care providersapproach discussions with women about RM differentlythan other cancer risk management choices [16]. Thewomen participating in our study consistently expressedfrustration when their interactions with health care pro-viders failed to yield specific recommendations. Theywanted a response from health care providers as to theappropriateness of their decision in light of their cancerrisk. Women's uncertainty in the decision-making processwas heightened when providers indicated that RM is awoman's personal decision. On the other hand, whilewomen looked for medical reinforcement of their deci-sions, when a health care provider indicated an opinionthat was not in line with one woman's beliefs, this situa-tion became an additional source of frustration. Furtherresearch is needed about the consequences of health careproviders offering advice related to RM while at the sametime supporting autonomous decision making.Few studies in the literature address the nature and char-acteristics of the RM decision-making process in terms oftime or the importance of decision support. Two studiesthat utilized an intervention, either a decision aid or indi-vidual survival curves as part of a decision support system,showed improvement in satisfaction with the decision butdid not assess changes in the decision over time [11,12].months to a year before a "final" decision was made. Theextent to which this extended decision-making process isa by-product of the health care system in Canada in whichlengthy wait times exist for elective surgeries such as RM,or is intrinsic to an irreversible and life-altering surgerydecision, is unknown. The paucity of research on psycho-logical consequences of RM and decision-making proc-esses was noted by the authors of a Swedish study of 56women at high risk for familial breast cancer and consid-ering RM [17]. They reported that the process of reachinga decision about RM took about one year to enable thewomen to reflect adequately on their options. Interest-ingly, 91% of the women elected to undergo RM (however16 of these women had previously been affected withbreast cancer). These women decided about RM after theyreceived a collaborative recommendation from a multi-disciplinary team that included geneticists, oncologists,breast surgeon, plastic surgeon, nurses and a psychologist.At 2-year follow-up, the majority of women in this studyexpressed satisfaction with the procedure. While culturaldifferences may account the for the high rate of acceptanceof RM in the Swedish study, the strong level of integrateddecision support stands in contrast to the experiences ofwomen in our study.In a Dutch study, 51% of unaffected female BRCA1/2 genemutation carriers elected to have RM, with 89% of thesewomen making their decision within nine months ofreceiving their genetic testing results [18]. These authorsfocused on the importance of counselling and the benefitof reduced fear in reducing the likelihood of decisionregret, and did not address the time women may need tofully weigh the issues involved in RM. Again, it is difficultto separate out any cultural contribution that may accountfor the Dutch results, however, all three of our cases ini-tially reported being in favour of RM and yet as theybecame more informed and gathered more informationand opinions and about this surgical option, their deci-sions changed.High-risk women considering RM as a strategy to reducebreast cancer risk, and thereby reduce fear, have beencharacterized largely as a homogenous group defined bythe results of their genetic test. Other researchers haveinvestigated women with family histories of breast andovarian cancer using the concept of "chronic risk", tofocus on the ongoing adaptation that occurs in the lives ofwomen with heightened cancer risk perception [19,20].Results suggest that perceptions of heightened risk andassociated decisions fluctuate over time, increasing ordecreasing, depending on life events and experiences,such as reaching the age when close family members werediagnosed with cancer in the past, friends or family mem-Page 7 of 9(page number not for citation purposes)In the three cases reported here, initial decisions werereviewed and revised several times over a period of sixbers developing cancer, life stage in terms of child-bearingBMC Women's Health 2007, 7:3 http://www.biomedcentral.com/1472-6874/7/3and child-rearing, and experiences with false positiveresults of cancer screening tests [20].A staged or phased model of coming to terms with one'spersonal perception of risk has been identified anddescribed by Chalmers and Thomson [19]. Their qualita-tive research with women at high risk for developingbreast cancer revealed three interdependent phases thatincluded living the cancer experience, developing a riskperspective, and putting risk in its place. Women werefound to integrate the knowledge of being at risk into theirself-identity by being either a "controlling woman" or"non-controlling woman". A controlling woman is morelikely to make dietary changes and participate in screeningand breast self-exam, whereas a non-controlling woman isless likely to adopt lifestyle changes and expresses a morefatalistic view concerning cancer. "Putting risk in its place"did not occur for all women, and was not a static process,indicating that some women are more able to live with theperception of chronic breast cancer risk than others. Presset al [21] argued that RM may have different meanings forwomen, and they explained the variation in women'suptake of RM in the United States, in terms of the distinc-tion between illness and disease. Women who see RM asmimicking the illness of breast cancer, as opposed to pre-venting the disease, are less likely to consider the proce-dure an option. They also point out that because actualuptake of RM is higher in several international studiesthan any reported hypothetical interest in the surgery, it isimportant to gain a better understanding of how womenperceive RM.ConclusionGiven the lack of available research that has examinedwomen's decision-making processes and the psychologi-cal and medical outcomes of RM, it may be wise for healthcare providers to view the decision-making process asfluid and one that may involve extended or recursive proc-esses, dependent on women's psychological coping style,values, life experiences and circumstances. Women with aBRCA1/2 gene mutation may choose to revisit the RMdecision at different stages of their lives and, therefore,require long-term professional support in a decision-mak-ing process that is contextualized by medical uncertaintyand a lack of conclusive information. Longitudinal studiesthat investigate RM decision-making outcomes over timeare needed to understand how best to support women inthis decision-making process.Competing interestsThe author(s) declare that they have no competing inter-ests.Authors' contributionsMM conceived the study, participated in its design,recruited participants, conducted follow-up consulta-tions, analyzed transcripts and helped draft the manu-script. JLB conceived the study, participated in its designand coordination, analyzed transcripts and helped draftthe manuscript. LGB participated in study design and con-ducted interviews. SAK participated in study design, con-ducted interviews, performed data analysis and helpedprepare the manuscript. MK performed data analysis anddrafted the manuscript. All authors read and approved thefinal manuscript.AcknowledgementsThis research was supported by a grant from the Canadian Breast Cancer Foundation – BC/Yukon Chapter, a Canadian Institutes of Health Research Investigator Award to Dr. Bottorff, and a Canadian Cancer Society Research Scientist Award (funded by the Prostate Cancer Research Initia-tive) to Dr. Balneaves.References1. Ford D, Easton DF, Stratton M, Narod S, Goldgar D, Devilee P,Bishop DT, Weber B, Lenoir G, Chang-Claude J, Sobol H, Teare MD,Struewing J, Arason A, Scherneck S, Peto J, Rebbeck TR, Tonin P,Neuhausen S, Barkardottir R, Eyfjord J, Lynch H, Ponder BA, GaytherSA, Zelada-Hedman M, the Breast Cancer Linkage Consortium:Genetic heterogeneity and penetrance analysis of theBRCA1 and BRCA2 genes in breast cancer families.  Am J HumGenet 1998, 62:676-689.2. 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