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Women's constructions of the 'right time' to consider decisions about risk-reducing mastectomy and risk-reducing… Howard, A F; Bottorff, Joan L; Balneaves, Lynda G; Kim-Sing, Charmaine Aug 5, 2010

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RESEARCH ARTICLE Open AccessWomen’s constructions of the ‘right time’ toconsider decisions about risk-reducingmastectomy and risk-reducing oophorectomyA Fuchsia Howard1*, Joan L Bottorff2, Lynda G Balneaves3, Charmaine Kim-Sing4AbstractBackground: Women who are notified they carry a BRCA1/2 mutation are presented with surgical options toreduce their risk of breast and ovarian cancer, including risk-reducing mastectomy (RRM) and risk-reducingoophorectomy (RRO). Growing evidence suggests that a sub-group of women do not make decisions about RRMand RRO immediately following genetic testing, but rather, consider these decisions years later. Women’sperspectives on the timing of these decisions are not well understood. Accordingly, the purpose of this researchwas to describe how women construct the ‘right time’ to consider decisions about RRM and RRO.Methods: In-depth interviews were conducted with 22 BRCA1/2 carrier women and analyzed using qualitative,constant comparative methods.Results: The time that lapsed between receipt of genetic test results and receipt of RRM or RRO ranged fromthree months to nine years. The findings highlighted the importance of considering decisions about RRM and RROone at a time. The women constructed the ‘right time’ to consider these decisions to be when: (1) decisions fitinto their lives, (2) they had enough time to think about decisions, (3) they were ready emotionally to deal withthe decisions and the consequences, (4) all the issues and conflicts were sorted out, (5) there were better optionsavailable, and (6) the health care system was ready for them.Conclusions: These findings offer novel insights relevant to health care professionals who provide decisionsupport to women considering RRM and RRO.BackgroundGenetic testing for mutations in the BRCA1 and BRCA2genes has increasingly become available to individualssince the discovery of these genes over 14 years ago[1,2]. Those women found to carry BRCA1/2 mutationsare at markedly increased probability of developing her-editary breast and ovarian cancer (HBOC), with theirlifetime risk of breast cancer between 45% and 88%, andtheir risk of ovarian cancer ranging from 11% to 65%[3-5]. When unaffected women are notified that theyhave a BRCA1/2 mutation, they are presented with arange of HBOC risk-reducing options including risk-reducing mastectomy (RRM) and risk-reducing oopho-rectomy (RRO). However, there is growing evidence thata sub-group of women do not make decisions aboutRRM or RRO immediately after genetic testing, butrather, prolong these decisions for months or years[6-9]. Women’s experiences with RRM and RRO havebegun to be described [10-12], but their perspectives onthe timing of these decisions are not well understood.The purpose of this study was to describe how womenwho carry BRCA1/2 mutations construct the ‘right time’to consider decisions about risk-reducing surgeries.Background LiteratureWomen found to carry a BRCA1/2 mutation are facedwith difficult decisions about how to manage their ele-vated HBOC risk. Breast cancer screening is recom-mended to these women as a means of identifyingcancers at an early stage when the prognosis of treatmentis good, thus reducing the risk of dying from cancer. Themost effective means of preventing breast cancer is* Correspondence: fuchsia.howard@ubc.ca1School of Population and Public Health, University of British Columbia,CanadaFull list of author information is available at the end of the articleHoward et al. BMC Women’s Health 2010, 10:24http://www.biomedcentral.com/1472-6874/10/24© 2010 Howard et al; licensee BioMed Central Ltd. This is an Open Access article distributed under the terms of the Creative CommonsAttribution License (http://creativecommons.org/licenses/by/2.0), which permits unrestricted use, distribution, and reproduction inany medium, provided the original work is properly cited.through RRM, the surgical removal of healthy breast tis-sue prior to the development of cancer, with the optionof reconstructive surgery. However, RRM is consideredcontroversial because of the potential for psychologicalharm. It is, thus, generally framed as a woman’s personaldecision to be discussed with her health care professional[13]. As there is no evidence that ovarian cancer screen-ing is effective in reducing mortality, it is currentlyassumed that RRO is the best form of risk management.As such, RRO, the surgical removal of the fallopian tubesand ovaries, is commonly recommended to women oncechildbearing is complete [13].Women are encouraged to make decisions about RRMand RRO when they receive their genetic test results.However, there is evidence that some women are delay-ing these decisions. In previous research, there werewomen who underwent RRO and/or RRM years afterreceiving their genetic test results [6-9]. In the largest ofthese studies, which included 297 women who had RROand 113 women who had RRM, the average time fromgenetic testing to risk-reducing surgery was 1 year [9].Yet, some of these women had RRO up to 7 years laterand RRM more than 8 years later. For women inanother study who previously had a mastectomy to treatbreast cancer, the mean time that elapsed between theirprimary surgery and contralateral RRM was 3.5 years[14]. The amount of time between receipt of genetic testresults and risk-reducing surgery has raised questionsabout why women are not acting promptly to reducetheir risks, and concerns that the full benefits of genetictesting are not being realized.It has been suggested that medical, physical, psycholo-gical, and social context factors influence the timing ofdecisions and use of risk-reducing options. Women’schildbearing and menopausal status have been reportedto have a substantial bearing on how women frame theoptimal timing of these decisions, as have women’s rela-tionships and their responsibilities to family members,friends, and employers [7,15-18].The psychological consequences of genetic testing,including anxiety, distress, and worry, may dramaticallyinfluence women’s abilities to make risk-reducing deci-sions, as well as the nature of the decision-making pro-cess. Although these psychological symptoms declineover time for the majority of mutation carriers [19-22],significant psychological distress can persist for others[22,23]. Moreover, researchers have reported a positiverelationship between distress, anxiety, and worry, anddecisions about RR strategies [24-30].When positive BRCA1/2 test results are disclosed,women are also faced with interpreting complex andemotion-laden information. Women have reportedspending much time reviewing information and seekingadditional sources of information and advice in anattempt to resolve their questions about the potentialimpact of RRM on their lives [31]. In one study, thelack of absolutes about when, or if, the women woulddevelop HBOC led to uncertainty about the right timeto make RRM and RRO decisions [32]. Moreover,BRCA1/2 carriers have expressed a need to considerrelevant information in the context of their individualexperiences, perceptions, and psychosocial needs [33].It is also important to acknowledge that once womenreceive their genetic test results they may encounterbarriers and delays accessing health services that arecentral to decisions about risk-reducing surgery andreceipt of risk management choices. For example, inCanada obtaining consultations with specialized healthcare professionals may take months and even years,while in the United States the financial costs of healthservices or the lack of health insurance may be prohibi-tive. Women in rural settings may experience additionalbarriers to treatment including costs of travel and timeaway from employment [32].Although previous research provides importantinsights related to risk management decision making,women’s perspectives related to the timing of decisionshas not been systematically studied. With few excep-tions, the focus of research to date has been guided bytheoretical perspectives and assumptions that have notadequately captured the complexity of women’s decisionmaking [18], or their perspectives on the importance ofmaking timely decisions and factors that influencetiming. A few studies have described women’s decision-making processes about risk-reducing surgery ascomplex, dynamic, and prolonged [16,31]. In a casestudy that involved in-depth interviews with threewomen over one year, researchers tracked how women’sthoughts and decisions about RRM changed over time,and the time they needed to achieve a level of comfortwith decisions that they were able to follow throughwith [31]. It is essential that health care professionalsconsider women’s perspectives on the ‘right time’ tomake these decisions given the potential psychologicalimplications of making untimely decisions, as well asthe implications of delaying RRM and RRO with regardto women’s morbidity and mortality. A better under-standing of women’s perspectives is also needed toguide the provision of RRM and RRO decision support,as well as the development of decision support interven-tions that address the complex needs faced by women athigh risk for HBOC.MethodsThis study was conducted in the context of a largergrounded theory study aimed at developing an in-depththeory of women’s decision making regarding HBOCrisk-reducing strategies [32]. Qualitative methodologicalHoward et al. BMC Women’s Health 2010, 10:24http://www.biomedcentral.com/1472-6874/10/24Page 2 of 12approaches described by Charmaz [34], Strauss and Cor-bin [35], and Sandelowski [36] were used to developdescriptions of how women construct the ‘right time’ toconsider decisions about RRM and RRO.Study ParticipantsThe University of British Columbia behavioral researchethics board approved this research. Participants wererecruited through a hereditary cancer program in BritishColumbia, Canada. Staff at the hereditary cancer pro-gram distributed a letter of invitation to potential studyparticipants by mail or in-person at genetic counselingappointments following receipt of their genetic testresults or the high-risk clinic. The women whoexpressed an interest in the study by mailing a signedconsent to contact form to the research team were thencontacted by telephone, wherein they were given furtherdetails about the research, screened for eligibility, andscheduled for an interview if they consented to partici-pate. Women who received positive BRCA1/2 genetictest results, were older than 18 years of age, and Englishspeaking, were included in this study. Women who werecurrently undergoing diagnostic testing for cancer orwere receiving cancer treatments were excluded.In this Canadian hereditary cancer program, womenundergo genetic counseling before and after genetic test-ing, wherein they receive oral and written informationabout HBOC risk-reducing strategies. RRO is recom-mended to women once childbearing is complete, andRRM is not recommended, but rather, is framed as apersonal decision to be discussed with a health profes-sional. Women found to carry a BRCA1/2 genetic muta-tion are also advised to undergo breast cancer screeningat the high-risk clinic every six months, and althoughformal decision support is not systematically providedduring these appointments, risk-reducing surgery isoften discussed. If women express an interest in risk-reducing surgery they are then referred to a surgeon fora consultation.The demographic characteristics of the 22 participantsare illustrated in Table 1. The mean age of participantswas 51 years of age (ranging from 28 to 80 years). Themajority of women were Caucasian, college or universityeducated, and employed either full- or part-time. Mostof the women were married, and just over half had chil-dren. Five women had a history of breast cancer.Data Collection ProceduresIn-depth interviews, lasting 45 to 90 minutes, were con-ducted at a time and place convenient to the partici-pants following receipt of written informed consent. Allinterviews were digitally recorded and transcribed verba-tim. Each woman in this research was assigned a pseu-donym in order to maintain her anonymity. The initialinterviews began with open-ended questions to elicitparticipants’ perspectives and were designed to draw outthe underlying process of decision making, which alsocaptured the timing of decisions [34]. For example, weasked the women to describe their perspectives of: thefactors (medical, physical, psychological, and family con-text) that influenced when decisions about risk-reducingsurgeries were considered; how their relationships withfamily and health care professionals influenced whendecisions about risk-reducing surgeries were considered;how organizations, institutions, or the health care sys-tem influenced when decisions about risk-reducing sur-geries were considered; and how the appropriate time toconsider risk-reducing surgeries changed over time. Asdata analysis proceeded, the questions became morespecific to fill in gaps, explore important areas in greaterdepth, and verify emerging findings [34].Data Analysis ProceduresData analysis involved the constant comparison of datafrom different participants, and across incidents andthemes [34,35]. The transcripts were read numerousTable 1 Characteristics of Study SampleCharacteristics Frequency (%)Marital StatusMarried/common-law 17 (77)Single/separated/divorced/widowed 5 (23)EthnicityAnglo-Saxon 11 (50)Ashkenazi Jewish 6 (27)Other 5 (23)EducationSome college and above 15 (68)High school and below 7 (32)EmploymentEmployed 18 (82)Unemployed/homemaker/retired 4 (18)Household annual income (Canadian)Less than 40,000 4 (18)$41,000 - 80,000 8 (36)Greater than $80,000 10 (46)ChildrenHave children 12 (55)No children 10 (45)Time since genetic testingLess than 1 year 5 (23)1-4 years 4 (18)Greater than 5 years 13 (59)Cancer historyPrevious breast cancer history 5 (23)No previous breast cancer history 17 (77)Note. N = 22Howard et al. BMC Women’s Health 2010, 10:24http://www.biomedcentral.com/1472-6874/10/24Page 3 of 12times and important ideas, interpretations, and themesrelevant to the research questions were identified usingan inductive approach [37]. Each woman’s decision-making experience was captured in a narrative summarynoting what risk management decisions were made andwhen, as well as whether these decisions changed overtime. In addition, interview data related to the timing ofdecisions was identified, and coded for retrieval and in-depth analysis using the data management software pro-gram NVivo. One author (A.F.H.) reviewed these data toidentify themes that recurred within the interviews andwere evident in multiple women’s accounts. During thenext phase of analysis, all four members of the researchteam reviewed and discussed the themes. The teamcompared the data related to each theme, raised ques-tions to further the analysis, and identified the relation-ships within and between the themes, thereby helping torefine these thematic categories. This continued until allideas, interpretations, and themes were accounted for inthe final description.ResultsDecisions about risk-reducing surgery evolved overmonths and even years for many of the women in thisstudy. At the time of being interviewed, all of thewomen were having biannual cancer screening throughthe hereditary cancer program high-risk clinic. Thirteenof 19 women with ovaries (3 women previously hadbilaterally salpingo-oophorectomy to treat medical con-ditions) had undergone RRO and three of the 22women with breasts had undergone RRM. The time thatlapsed between receipt of genetic test results and receiptof risk-reducing surgery ranged from three months tonine years. Of the women who had not undergone risk-reducing surgery, the majority had not ruled out consid-ering these decisions in the future. It was important tothe women for decisions about RRM and RRO to bemade one at a time. Moreover, the women constructedthe ‘right time’ to consider decisions about risk-reducingsurgery to be when: (1) decisions fit into their lives, (2)they had enough time to think about decisions, (3) theywere ready emotionally to deal with the decisions andthe consequences, (4) all of the issues and conflicts weresorted out, (5) there were better options available, and(6) the health care system was ready for them.One Decision at a TimeThe women in this study, with one exception, did notengage in decisions about RRM and RRO concurrently.Rather, they prioritized their decisions and then consid-ered them one at a time. The decisions the womendeemed most relevant to them, less disruptive to theirlives, uncomplicated, associated with fewer negative phy-sical and emotional consequences, and supported byothers, were made first. Karen, a 53-year-old womanwho received her genetic test results three years pre-viously recalled her reaction to the options of RRM andRRO:When I saw Dr. [name] she started talking aboutmastectomies. And I said, “Look, I’m going to dealwith the ovarian thing first, that’s what has mani-fested in my family most and been the most lethal.And the breast thing, there’s good screening toolsout there and I’m not going to deal with that rightthis minute. I want to deal with the ovarian thingfirst. First things first.”In keeping with this, most of the women considereddecisions about RRO first, and then RRM. The womenalso commonly made “temporary” decisions and thenrevisited their decisions later on, when they thought itwas the ‘right time.’ Leslie, a 55 year old woman whoreceived her genetic test results two years previously,described her approach to considering risk-reducingsurgery:Well I basically had gone from, in the summer, say-ing I’m going to focus on my ovaries, get that done,worry about the breast thing, and then getting reallyenthusiastic about maybe doing the breast stuff,going and seeing the plastic surgeon and beingtotally turned off, and going totally against it [RRM].And then I guess this year it came up again, when Ihad another mammogram in early February andthen they wanted to do a bigger magnification of it.And then that started me thinking again about this.Am I making the right decision? Is this really safe todo this route, the high surveillance? But, I’ve reexa-mined it again, and I still feel that it’s premature tomake a decision.The women’s experiences with cancer screening andmaking or following through with risk-reducing surgerydecisions had a significant influence on when subse-quent decisions were considered. A number of womenfelt “protected” from cancer because they had faith inthe efficacy of screening and believed that if detectedearly, cancer was easily treated. The reassurance asso-ciated with screening resulted in many women feelingcomfortable “sticking with screening” for the time beingand postponing RRM and RRO decisions. However,anxiety, physical discomfort and experiences of finding“something suspicious” during screening prompted arevisiting of their risk-reducing surgery decisions. Thiswas also the case when women’s negative experienceswith RRO resulted in their re-evaluating the ‘right time’to consider RRM.Howard et al. BMC Women’s Health 2010, 10:24http://www.biomedcentral.com/1472-6874/10/24Page 4 of 12When Decisions Fit into my LifeThe women wanted to fit decisions about risk-reducingsurgery into their current and future life plans. Forexample, Rose, a 39-year-old woman who had knownher genetic test results for five years, questioned howRRM would fit into her active lifestyle:I’m still thinking about the mastectomy [RRM]. Iknow that no implants can make life a little roughtoo. If you’re an active person like me and youspend a lot of time at the pool but you have a pro-blem with your self-image then you might not go tothe pool, right? Or you might not do the sports thatyou might normally have done, right? And at thispoint I’m not spending a lot of time at the pool butpre kids I was doing triathlons and stuff. So if I getback into that kind of a lifestyle, would I be totallycomfortable? So I don’t think I’m ready to give thatup yet.For some, this meant postponing decisions untilimportant events occurred, or phases of their lives com-pleted. Younger, single women considered the impor-tance of their ovaries to appearing youthful and breaststo appearing attractive to potential partners. Thewomen interested in dating, starting intimate relation-ships, and finding a partner preferred to postpone deci-sions about risk-reducing surgery until they were in aserious relationship. Scarlet, a 37-year-old woman whoreceived her genetic test results nine years ago describedwhy RRM did not currently fit into her life:My mom is very proactive and encourages me to goand have prophylactic mastectomy. But she’s notlooking at it the way I’m looking at it. It’s always inthe back of my mind that one day when I’m older Imay do that [RRM], but not now. Not when I’m justin a new relationship and I don’t even know if it willwork out. It’s just not the time right now.Although most married women acknowledged thattheir husbands loved them for more than their breastsand ovaries, some women questioned the effects RRMand RRO would have on their relationship. It wasimportant for these women to obtain reassurance fromtheir partners before they seriously considered risk-reducing surgery. For some of the women who stillwanted children, or who were not done childbearing,both RRM and RRO were considered premature. Chris-tine, a 42-year-old single woman who had known hergenetic test results for five years, recalled how the deci-sion not to have children was crucial to the timing ofher decision about RRO:What I had to come to terms with mostly before Icould think about the surgery [RRO] was that Iwasn’t going to have kids. Once I had come to termswith that, and then basically getting to the pointwhere I don’t want to have children, made it a loteasier for me. I never had a partner for very longand I don’t have a lot of money. Unless you canreally provide for a child it doesn’t seem right.These women felt reassured postponing their decisionsabout RRO because this was congruent with the heredi-tary cancer program recommendations to wait to makethis decision until childbearing was complete. However,some women contemplated altering their life plans bylooking into alternatives for having children (i.e., adop-tion or “freezing their eggs” and undergoing in-vitro fer-tilization) and engaging in family planning discussionswith their partners to determine whether changing theirpre-existing plans was an option.The women also constructed the ‘right time’ to con-sider decisions about risk-reducing surgery to be whenthese decisions aligned with their perception of whothey were at particular times and phases of their lives.This included how the women saw themselves (e.g., asyounger and older), their bodies (e.g., as fertile andpost-menopausal), and themselves in relation to others(e.g., as single, an intimate partner, and a widow), in thepresent and the future.When I Have Taken Enough Time to Think AboutDecisionsThe women needed to have enough time to deliberateabout risk-reducing surgery decisions so that they feltready and able to make these decisions. Taking time tocarefully consider these “big” and “complicated” deci-sions was not only considered by the women to benecessary, but was encouraged by health care profes-sionals, family, and friends. Maureen, a 48-year-oldwoman who had known her genetic test results for fiveyears, recalled the advice given to her by her family phy-sician:She [physician] just said. “You know it [RRM] isirreversible, so once you’ve made that decision,there’s no turning back. So take your time, andweigh the pros and cons.” And there are just somany pros and cons and it’s huge. I mean this deci-sion is really huge.The women had many questions and things to thinkabout, such as the intricate details of surgery and recon-struction, possible surgical side effects and complica-tions, and the consequences of surgery on their feelingsHoward et al. BMC Women’s Health 2010, 10:24http://www.biomedcentral.com/1472-6874/10/24Page 5 of 12of femininity, body image, sexuality, and self-esteem.The ‘right time’ to consider these decisions was whenthe women had obtained answers to all of their ques-tions, and thoroughly considered all facets of their possi-ble options. This involved the use of a variety ofdecision-making approaches over time, including enga-ging with others, looking inwards, making sense of thenumbers about risks, and weighing the pros and cons,as described in detail elsewhere [32].The ‘right time’ to consider decisions about risk-redu-cing surgery was also when the women could concentratetheir energies on making these decisions. Because somewomen’s lives were busy, they postponed their decisionsuntil they could give them their full attention. Dealingwith other existing health problems, such as cardiovasculardisease, chronic fatigue syndrome, or fibromyalgia, tookprecedence over considerations about preventive surgery,as did providing care to ill family members. For example,Coral, a 51-year-old breast cancer survivor, had postponedmaking a decision about RRM for six years because shewas too busy providing care to her ailing parents and thenorganizing the family affairs once they passed away. “Iwasn’t ready [to decide about RRM] with all the responsi-bilities that I had to take care of. So now I just have myselfand I don’t have anybody to worry about.”When I am Ready Emotionally to Deal with DecisionsThe women perceived that they needed time to dealwith the emotional consequences of carrying a BRCA1/2mutation before they could make decisions about risk-reducing surgery. At times, the women were preoccu-pied with related anxiety, distress, and worry, which notonly interfered with their everyday lives, but also pre-vented them from feeling capable of fully engaging indecision making. Christine, a 42-year-old single womanwho had known her genetic test results for five years,recalled feeling too overwhelmed to engage in a yearlyconversation about RRO with her physician at the her-editary cancer high-risk clinic:It’s so unconscious or irrational the kind of fear thatyou feel, that I didn’t even show up for my appoint-ment [at the high-risk clinic]. And that’s so not likeme and I was in trouble with Dr. [name]. She had torebook and see me on a prostate day, which was notgood. So that was one thing where I just kind ofshut down and I think that day I just stayed homeand cried and I was really upset. But nothing feelsvery conscious. It’s very emotional.Feeling emotionally overwhelmed led some women tofeel uncertain and apprehensive about their abilities tomake risk management decisions. Postponing these deci-sions gave the women the time they needed to copewith their emotions, get accustomed to the ideas ofRRO, RRM, and breast reconstruction, and to come toterms with the consequences of these decisions. Twowomen sought professional psychological support tohelp them cope with their anxiety and depressionbrought on following genetic testing. The women con-structed the ‘right time’ to consider these decisions tobe when they had sufficiently addressed their anxiety,distress, and worry to be able to engage in decisionmaking without feeling overwhelmed.When all of the Issues and Conflicts are Sorted OutThe women indicated that they needed to address theissues and conflicts that the decisions raised before theycould finalize decisions about risk-reducing surgery.Sorting out the issues and conflicts within themselves,with their family, and with health care professionalsoften took time. Inner conflict was the result of thewomen feeling uncertain about their HBOC risk, havingnumerous questions about risk-reducing surgery andbreast reconstruction, and encountering difficulty withweighing the pros and cons of these decisions. Forexample, when Lauren, a 40-year-old woman, consulteda surgeon intending to have RRO, she was informed shewould have to take hormone replacement therapy post-operatively - “So then the hormones would increase mychance for breast cancer, and so there was all that con-flict.” Although gathering information and advice washelpful, at times this resulted in obtaining new informa-tion that needed to be considered in decisions andadded further complexity to decision making. In thesesituations, women were often left feeling more confusedand conflicted about the decisions they were trying tomake. For example, Leslie, a 55 year old woman whoreceived her genetic test results two years previously,described feeling conflicted about breast reconstructionupon learning about the details of the procedure:But then I find out that they put it [the implant]behind your pectoralis major muscle. They don’t putit in your skin where your breast was. They put itbehind your pectoralis major, between that and yourchest wall. So then they have to fill this thing withwater and stretch the muscle every two weeks.That’s what the expansion thing is. They say it’s foryour skin on all the websites. No, it’s for the muscle,to accommodate this lump. And I just thought that’sridiculous. I couldn’t believe that’s what they did. Sonow I don’t know what to do.There were also issues and conflicts involving familymembers that the women wanted resolved before theyfelt comfortable finalizing their decisions. Some familymembers voiced their concerns about risk-reducingHoward et al. BMC Women’s Health 2010, 10:24http://www.biomedcentral.com/1472-6874/10/24Page 6 of 12surgery, while others expressed their opinions about theright course of action for the women to take. Wantingto remain sensitive to family members concerns andopinions, some women postponed their decisions or fol-lowed through with their decisions at a later time. Forexample, Lilith, a 39-year-old woman, decided to haveRRO and RRM a couple of months after she was foundto carry a BRCA1/2 mutation. But, she postponed RRMindefinitely and RRO for over a year because her motherwas upset and disagreed with her decision. Sortingthrough family conflict also involved taking the time toprovide explanations and information, and to try andconvince family members that the decision the womenwere leaning towards was the best decision for them.Sorting through issues with health care professionalswas also an essential step to settling on decisions aboutrisk-reducing surgery. Seeking second and third medicalopinions in order to investigate alternative options, dou-ble check recommendations, gather more information,and obtain advice took time. Furthermore, these interac-tions complicated decisions when these professionalsprovided advice that conflicted with the recommenda-tions or advice they previously received. Often times,disagreements and conflict with health care profes-sionals stemmed from disparate views about what wasthe most important, acceptable, or desirable decision.For example, at the time of interview Coral’s decision tohave RRM and reconstruction had been prolongedapproximately six months because her preferences forreconstruction differed from those of her physician:Right now we’re arguing about the size [that myreconstructed breast should be]. He [physician] sayswell, you know with the breadth of your chest youhave to be a C cup. And I’m going, “Oh please,make them smaller because you have no idea whatit’s like. You carry twenty pounds on your chest andthen tell me that you want me to be the same size.”Well I have the surgeon on my side now. She says,“It’s men, you know what it’s like.” I mean he is theprofessional so I said, “Why do you think I’ll lookfreakish? I want a B cup. I see no difference betweena B or a C cup as far as my chest wall goes.” So I’mjust goanna stick with it.When there are Better OptionsSome women thought the time was not yet right to con-sider making decisions about risk-reducing surgerybecause not enough was known about hereditary cancer.This was reflected in the comments made by Jen, a 53-year-old woman who had known she carried a BRCA1/2mutation for five years: “I mean we’re still talking abouthaving a mastectomy in the future, but I don’t have anybreast cancer in my family so I’m thinking maybe theydon’t know enough about these genetic mutations yet.”The women considered the cancer genetics field to be ayoung science characterized by new technology, numer-ous unanswered questions, and evolving knowledge.Reflecting on the past, the women perceived there to bemore options now than ever before to reduce their riskof developing or dying from HBOC, and they expectedthis trend to continue. As a result, the women had faithin scientific and medical progress and perceived the‘right time’ to consider decisions about risk-reducingsurgery to be when new scientific evidence emerges andless invasive, less drastic, better tolerated, and moreacceptable medical and surgical options and techniquesbecome available and accessible. For example, Lesliedescribed her decision to wait to consider RRM untildifferent breast reconstruction techniques were offeredin Canada:I’ve got another friend who has the gene. She’s fromIran and her sister in Iran had breast cancer, andhad the mastectomy and reconstructive surgery. Andover there they have a very highly sophisticated plas-tic surgery industry, which I didn’t know about, andshe just had the implant put underneath the skin,and it was fine. So I’m just on hold until they startdoing that [reconstructive surgery] here.Some women also relied on the guidance of experts tohelp them determine when better options would warrantrevisiting their previous decisions. This was evident inthe explanation provided by Maurice, a 65-year-oldwoman who received her genetic test results nine yearspreviously:The consensus of the cancer program and my doctorwas that it [RRM] wasn’t necessary. And if it’s notnecessary I’m not going to run out and do it. But ifanyone thought it would really be a good idea forme, I’m prepared to do it. I have made the decisionto stick with screening for now, and I’m letting thatdecision sit until I hear from someone who knowsthat there could be a better decision.When the System is Ready for MeThe women’s constructions of the ‘right time’ to con-sider decisions about risk-reducing surgery were alsoinfluenced by perceptions about when the Canadianhealth care system could accommodate their choice. Anumber of women engaged in ongoing conversationsabout risk-reducing surgery during biannual breast can-cer screening appointments at the hereditary cancerhigh-risk clinic. They had faith in the existing referralHoward et al. BMC Women’s Health 2010, 10:24http://www.biomedcentral.com/1472-6874/10/24Page 7 of 12processes to access further services that would helpthem decide about RRM and RRO. Most women werenot upset that referrals to surgeons took up to a yearbecause this gave them time to think more carefullyabout risk-reducing surgery, as evident in Coral’sdescription:When I saw Dr. X at the cancer agency for mycheck up she said, “Well, I can set you up to talk tothe surgeon and read some information on it.” Andif I wanted to she could put me in touch with otherpeople who had the surgery. A lot of time went byin-between but I wasn’t ready. Waiting to have thechat, I pretty much had time to think about it. AndI knew that was what I was going to do. I think mymind was made up before I even saw the surgeon.Wanting to “get things over and done with” once theyhad made their decisions, some women felt disappointedand anxious when the system was not ready for them.The lack of seamless care also led some women to post-poned their decisions, believing the Canadian healthcare system could not meet their needs, as described byLauren, who knew her BRCA1/2 carrier status for fouryears:My decision process, and my sister’s decision pro-cess, would be a lot different if we could have thereconstruction done at the time as the mastectomy.It’s huge. My sister actually has opted to have bothof her breasts removed prophylactically and to havethe reconstruction later, and she’s been on a waitinglist for two and a half, three years now. It justdoesn’t make sense to me to do the surgeries twice.And why can’t we go with dignity and grace? Youknow, if I’m ever able to have reconstruction at thesame time, I’d seriously consider the surgery. Itwould make my decision easier.DiscussionThe study findings described how women who carry aBRCA1/2 mutation construct the ‘right time’ to makedecisions about RRM and RRO. It was important for thewomen in this study to consider decisions in the contextof their lives, take enough time to deliberate, cope withtheir emotions, sort through issues and conflicts, waitfor better medical and surgical options, and factor inthe readiness of the health care system. These findingsprovide possible explanations for the time framesbetween genetic testing and risk-reducing surgeriesobserved in other studies [6-9].Of note, the women in this study did not frame theirdecision making as “delayed,” “slow,” or taking “toolong”. This differs from researchers and clinicians whoare of the opinion that risk-reducing surgery is the bestway to eradicate breast cancer risk in BRCA1/2 muta-tion carriers and have voiced their concern that somewomen are waiting too long to decide about RRM andRRO [38]. These conflicting perspectives appear to stemfrom different concerns and priorities associated withHBOC risk management. On the one hand, somewomen perceive prolonging or deferring decisions aboutrisk-reducing surgery as enhancing their quality of lifeand helping them manage the inherent decisional con-flict. On the other hand, there are also risks with delay-ing these decisions that cannot be ignored. Thesewomen could develop cancer in the interim. Futureresearch is needed to understand whether these differentconcerns and priorities complicate the provision ofgenetic services, and if so, in what capacity.McCullum and colleagues [31] reported that womenprolonged their RRM decisions while they focused onquality of life issues, specifically the associated risk ofdecreased physical and emotional well-being. For thewomen in the present study, the physical consequencesassociated with risk-reducing surgery held differentmeanings at different phases of their lives. Consistentwith the genetic testing and risk management literature[16,17,39-41], younger women considered decisionsabout RRO and RRM inappropriate because of their lifeplans, such as finding a life partner, childbearing andchildrearing. Yet some of the women contemplatedchanging these life plans or searching out alternatives,phenomena previously reported but requiring furtherexamination [16]. It is possible that these women wereattempting to reconcile their competing desires to haverisk-reducing surgery sooner than later, but also fulfillimportant life goals essential to their quality of life.Attending to dimensions of self other than physicalhealth has also been found to an important part of thedecision-making process [32].Emotional well-being also influenced when the studyparticipants considered risk-reducing surgery decisions.These women needed time to deal with the emotionalconsequences of carrying a BRCA1/2 mutation and con-sider the implications of risk-reducing surgery beforemaking final decisions. Rather than rush into decisionsto cope with their distress, anxiety, and worry, thesewomen prolonged the decision-making process whilethey coped with their emotions and also postponedtheir decisions until they felt emotionally ready. Womenhave previously reported declining genetic testingbecause of their desire to protect themselves and theirfamily from the emotional consequences [42]. In con-trast, research that examined predictors of RRM andRRO found anxiety, distress, and worry to be key pre-dictors of risk-reducing surgery [24-30]. Women haveHoward et al. BMC Women’s Health 2010, 10:24http://www.biomedcentral.com/1472-6874/10/24Page 8 of 12described their breasts and ovaries as “time bombs” andrisk-reducing surgery represented a strategy for mana-ging the associated worry and anxiety [15,43]. These dis-parate findings suggest that emotions of anxiety,distress, and worry do not always predispose women tomake particular decisions at particular times followinggenetic testing. Instead, emotions play a much morecomplex role in the timing of women’s decisions relatedto RRM and RRO.In the study by Kenen and colleagues [44], womenwho carried a BRCA1/2 mutation vacillated from oneposition to the other and took years to make up theirminds about RRM. Most of these women reportedspending a great deal of thought on RRM during thisdecision-making process. The research by Kenen et al.[44], in combination with findings from the presentstudy, suggests that decisions about risk-reducing sur-gery are fraught with decisional conflict. Decisional con-flict occurs when there are: risks or scientificuncertainty about the benefits and harms, choices withlarge potential gains and losses, value tradeoffs in select-ing a particular course of action, and potential regretswith the selected option [45]. Tan and colleagues [46]found that the two most important reasons for womento postpone RRM were uncertainty about proceedingwith surgery and the need for more risk information.The lack of conclusive information about the risk ofHBOC and the implications of risk-reducing surgerywere particularly problematic for the women in the pre-sent study, as reported in other research [28,31,43,47]. Itis, therefore, unsurprising that these women struggledwith uncertainty and were compelled to seek out secondand third medical opinions over time. Further researchis needed to understand the impact of these opinionsand advice on women’s uncertainty and the decision-making process, as well as how women resolve conflictwhen differing opinions are garnered.The research that has focused on decisions aboutBRCA1/2 genetic testing suggests that family membersare intimately involved in the genetic testing process,before, during, and after their relative decides to go for-ward with testing [48]. Family relationships are alsoaffected when women are found to carry BRCA1/2mutations [48,49]. Researchers have reported thatwomen who tried to discuss hereditary cancer or risk-reducing surgery with their families have been met withresistance, shock, hostility, and additional negativeresponses [40,50,51]. This resulted in women self-cen-soring by pulling back or not talking about cancer forfear of causing worry or anxiety [51]. In a similar fash-ion, the women in this research further postponed mak-ing decisions about risk-reducing surgery because theywanted to remain sensitive to family members’ concernsand opinions. They also attempted to resolve familyconflicts and disagreements before they felt comfortablemaking RRM and RRO decisions. Future researchexploring family dynamics in relation to decisions aboutrisk-reducing surgery would broaden our understandingof these findings.International differences in the uptake rates of risk-reducing surgeries have been observed and attributed tohealth care providers’ recommendations and continuityof follow-up, as well as cultural variations [52]. Forexample, in one study, 344 women who attended a can-cer genetics clinic in Canada (Quebec), Britian or GreatBritian were found to vary in their preferences regardingcancer prevention [53]. The authors attributed this var-iation to cultural differences between countries.Although it was unclear in this study whether culturewas an influential factor, it was apparent that the struc-ture of Canadian health services plays a significant rolein when women consider risk-reducing surgery, as dothe barriers women encounter accessing specific servicesthat they believe would best meet their needs. Althoughtimely and accessible health care for all Canadians is acornerstone of publicly funded health care, patients rou-tinely encounter significant challenges accessing andreceiving timely, coordinated, and comprehensive carefrom interprofessional teams [54]. It appears hereditarycancer and preventive surgical services are no exception.In the present study, the extended decision-making pro-cess was in part a by-product of the health care systemin Canada, wherein the women encountered lengthywait times for referrals as well as surgery and breastreconstruction. The finding that this time lag gave somewomen needed time to think more closely about risk-reducing surgery suggests that women are still engagedin the decision-making process and possibly preparingfor consultations while they wait. Further inquiry intothe feasibility of offering decision-making support dur-ing this time is needed.There are limitations inherent to this research. Thisstudy included participants who were recruited from asingle hereditary cancer centre in Canada. Caution musttherefore be exercised when determining the relevanceof the findings in other settings. As well, the perspec-tives of older women are underrepresented in this studysince only one woman was over the age of 65. More-over, we did not access any participants with positiveBRCA1/2 test results who chose not to partake in therecommended HBOC screening. It is possible that thestudy participants represent a homogeneous group withready access to screening services and beliefs in earlydetection. There might also be women who are consid-ering decisions about RRM and RRO who do not havecontact with health care professionals. Genetic informa-tion, evidence about the effectiveness of HBOC riskmanagement strategies, and the availability of onlineHoward et al. BMC Women’s Health 2010, 10:24http://www.biomedcentral.com/1472-6874/10/24Page 9 of 12and written resources about risk-reducing surgery haschanged over the years. Thus, women who receivedtheir BRCA1/2 test results and were availed of theoptions of RRM and RRO at different times, particularlya number of years ago, might have had different kindsof experiences than women who received their genetictest results more recently.ConclusionIn conclusion, women’s perspectives about the appropri-ate time to consider decisions about risk-reducing sur-geries have been absent from the scientific literature todate. Incorporating women’s perspectives on the timingof these decisions could provide valuable direction fordecision support. The above findings provide evidencethat decision support ought to be accessible whenwomen want and need the support because somewomen prolong or defer decisions to a later time. Forthose who are overwhelmed with simultaneously facingmultiple decisions about HBOC risk management, itmay be beneficial to help women prioritize their needsand to work through each of their decisions when theyfeel ready. Some women may require ongoing psycholo-gical support because they find it difficult to come toterms with their HBOC susceptibility, as well the ideasof RRM and RRO. Making this option available to thosewomen who are interested is crucial. The findings sug-gest that women consider decisions about risk-reducingsurgery in the context of their life plans, relationships,medical science, and the health care system. This pro-vides evidence that broader approaches to decision sup-port, such as relational or women-centered approaches,might complement existing services. A relationalapproach could assist women with mobilizing supportand resources, communicating with others about HBOCrisk management, and working through interpersonalissues. A women-centred approach addresses issuesbeyond traditional medical interventions, placing healthin its broad social context, and also addresses barriers toaccess and respects women’s diversity [55]. Althoughrisk-reducing surgery decisions are women’s decisions,women should not be saddled with the burden of tack-ling barriers to accessing health care services. Healthcare professionals, health care organizations, and gov-ernment must work hard to resolve these challenges.AcknowledgementsWe thank all of the women who took part in this study and shared theirexperiences for the benefit of others. We also thank the British ColumbiaHereditary Cancer program staff who recruited participants to this study. TheHereditary Cancer Program, British Columbia Cancer Agency, kindly coveredthe publication costs for this manuscript.This project was completed while A. Fuchsia Howard held a CanadianInstitute for Health Research (CIHR) Doctoral Research Award, a CIHRPsychosocial Oncology Research Training Fellowship, and a Michael SmithFoundation for Health Research Senior Graduate Studentship. Dr. Balneavesholds a CIHR New Investigator award.Author details1School of Population and Public Health, University of British Columbia,Canada. 2Faculty of Health and Social Development, University of BritishColumbia Okanagan, Canada. 3School of Nursing, University of BritishColumbia, Canada. 4British Columbia Cancer Agency & Faculty of Surgery,University of British Columbia, Canada.Authors’ contributionsAFH carried out this research as part of her doctoral dissertation. Shedesigned the study, collected and analyzed the data, and drafted themanuscript. JLB and LGB participated in the formulating and conducting ofthe research, as well as the presentation of ideas in this manuscript. CKSprovided consultation with the design of the research, and reviewed andprovided significant feedback on this manuscript. All authors read andapproved the final manuscript.Competing interestsThe authors declare that they have no competing interests.Received: 14 January 2010 Accepted: 5 August 2010Published: 5 August 2010References1. Miki Y, Swensen J, Shattuck-Eidens D, Futreal PA, Harshman K, Tavtigian S,Liu Q, Cochran C, Bennet LM, Ding W: A strong candidate for the breastand ovarian cancer susceptibility gene BRCA1. Science 1994, 266:66-71.2. Wooster R, Bignell G, Lancaster J, Swift S, Seal S, Mangion J, Collins N,Gregory S, Gumbs C, Micklem G: Identification of the breast cancersusceptibility gene BRCA2. Nature 1995, 378:789-792.3. 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British Columbia Women’s Hospital and Health Centre and British ColumbiaCentre or Excellence for Women’s Health: Advancing the health of girlsand women: A women’s health strategy for British Columbia. 2004[http://www.bccewh.bc.ca].Pre-publication historyThe pre-publication history for this paper can be accessed here:http://www.biomedcentral.com/1472-6874/10/24/prepubdoi:10.1186/1472-6874-10-24Cite this article as: Howard et al.: Women’s constructions of the ‘righttime’ to consider decisions about risk-reducing mastectomy and risk-reducing oophorectomy. BMC Women’s Health 2010 10:24.Submit your next manuscript to BioMed Centraland take full advantage of: • Convenient online submission• Thorough peer review• No space constraints or color figure charges• Immediate publication on acceptance• Inclusion in PubMed, CAS, Scopus and Google Scholar• Research which is freely available for redistributionSubmit your manuscript at www.biomedcentral.com/submitHoward et al. 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