Introduction

Women carrying a BRCA1/2 mutation, face an approximately 50–85% lifetime risk of breast cancer and a 15–40% risk of ovarian cancer (Ford et al. 1998; Brose et al. 2002; Altaha et al. 2003; Antoniou et al. 2003; Suthers 2007). Although there are a number of strategies for managing hereditary breast and ovarian cancer (HBOC) risk, including surveillance, chemoprevention, and prophylactic surgeries (ACS 2006; National Comprehensive Cancer Network 2007), individuals concerned about their risk may find it difficult to choose an option. Data concerning the risks associated with BRCA mutations, as well the risk reduction associated with these various measures are emerging (DeMichele and Weber 2002; Grann et al. 2002; Rebbeck et al. 2002; van Roosmalen et al. 2002; Van Sprundel et al. 2005), but there are many pros and cons to the above mentioned choices.

Prophylactic mastectomies (PMs) are being suggested to very high risk women because the data indicates that the development of a first or contralateral breast cancer is reduced by approximately 90–95% with PM (Peralta et al. 2000; McDonnell et al. 2001; Gui et al. 2003; Harcourt et al. 2003). However, this is still considered to be a controversial procedure (Zakaria and Degnim 2007), and Bresser et al., in their 2006 article, refer to PM as a radical intervention.

Although overall satisfaction with bilateral or contralateral PM has been reported to be very high, fewer women were satisfied with the cosmetic outcome, and a minority expressed feelings that their femininity and body image were adversely affected (Hopwood et al. 2000; Lloyd et al. 2000; Frost et al. 2005; Bresser et al. 2006; Lostumbo et al. 2004). Bresser et al. (2006) suggest “that the absence of regrets despite the awareness of adverse consequences reflect that the urge to reduce anxiety, remain healthy, and survive supersedes any ambivalence regarding the possible negative outcomes of PM/breast reconstruction in the long term” (p. 1681).

Even though most of the women undergoing a PM reported that they were satisfied with their choice, some individuals in society consider an intervention such as a PM akin to mutilation (Press et al. 2005). Respondents in Lloyd et al.’s study of women who had experienced a PM (Lloyd et al. 2000) reported that common reactions from friends and relatives were those of “shock” and “horror” (p. 477). Therefore, women who choose PM need to be aware not only of the many physical problems that frequently occur after surgery, but of their own psychological reactions to the actual, or perceived, reactions from others. Historically, stigmas have been attached to radical surgery (Kelly 1992). Thus, those women choosing a PM are likely to find themselves experiencing tensions between their expectations for the PM and reconstruction (if they decide to reconstruct), possible stigma, and whether, or to whom, the PM experience is revealed. In this situation, women need understanding and informed friends to talk to and a safe place in which to express their feelings.

The beneficial aspect of women’s friendships has been well documented by others (Apter and Josselson 1998; Aday et al. 2006; Kroenke et al. 2006). Facing Our Risk of Cancer Empowered (FORCE), a nonprofit organization and associated website, creates an environment in which women feel free to tend (nurture) and befriend each other at a time of stress (Taylor et al. 2000; Taylor 2002). It is considered to be a safe place for these women to discuss their feelings, decision-making and clinical management options.

There are many other breast cancer web based support groups that offer chat groups, message boards, and professional advice and support; research indicates that they tend to be very popular (Helft 2004; Rozmovits and Ziebland 2004). Some address women from minority groups (Fogel et al. 2003) and others, like The Breast-Cancer Mailing List, welcome posts from friends, family, and caregivers of women with breast/ovarian cancer. However, FORCE is the sole website specifically devoted to the community of women at risk for hereditary breast/ovarian cancer. The majority, though by no means all, of the women who post on the message board have not yet developed cancer, come from a family with a history of HBOC, and have tested positive for a BRCA1/2 mutation. FORCE receives one million hits per month from all over the world and has been described as the best site for physicians to direct their patients (Richards 2001).

In this paper we examine one of the topics most frequently mentioned by women posting on the FORCE archived message boards—consideration of the physical, psychological, and social consequences of PM during the decision-making, recuperation and reconstruction process. We report on the women’s feelings of loss, perceived stigma, tension between disclosing and concealing, and their need to renegotiate their sense of self and relationships with others.

The Conceptual Framework

Individuals use different strategies to hide, disguise or divert attention from a condition that they believe might stigmatize them. Some women consider undergoing a PM and reconstructing their breasts to be such a stigmatizing condition. A stigma refers to a negatively evaluated condition or attribute that sets the person apart from “normal” individuals in society (Fortenberry et al. 2002). Goffman (1963) discusses two kinds of stigma—discredited and discreditable. Stigma that are immediately obvious are called “discredited stigma,” e.g., severe facial burns or quadriplegia. An individual with a discredited stigma needs to manage social relationships taking her stigmatizing condition into account. A “discreditable stigma” is a knowable one that is not immediately obvious, e.g., severe burns or scars that are hidden, or history of mental illness. In these cases, information about the condition needs to be managed so that it remains unknown.

In Goffman’s terms, a woman who undergoes a PM would have a discreditable stigma. She can hide the information from friends, relatives and possibly children, who do not see her without clothes. However, when having sexual relations, the discreditable stigma becomes known and therefore discredited. These terms do not indicate that a condition in itself devalues an individual, but that some members of society might view it that way.

Goffman (1963) discusses “passing” – keeping a stigma unknowable – and “covering” – withdrawing someone’s attention from a known stigma – to indicate how individuals deal with keeping a stigmatizing condition secret or more palatable. People make assumptions about what a normal individual ought to be, and a normal woman is expected to have breasts—not to be completely flat chested or have surgically constructed replacements. Goffman (1963) asserts that because of the great rewards bestowed on those considered normal, almost all individuals will attempt to pass on some occasions and those who cannot or do not want to “pass” will usually “cover”.

We integrate these concepts with Charmaz’s (1991) concepts regarding the self and time. We discuss “interruptions”, “intrusions”, and the idea that the sense of self is rooted in time as well as in relationships. Interruptions are small and temporary disturbances of one’s life, while intrusions are more substantial disturbances that require time, accommodation and attention (Charmaz 1991). Time refers to the individual’s social construction of the past, present or future. Charmaz uses these concepts to help explain how everyday thoughts about behavior, presentations, and interactions, become problematic and have to be renegotiated after a person becomes chronically ill, disabled or severely scarred. While a PM is different because the PM/reconstruction process is undertaken by healthy women attempting to avoid developing breast cancer, the concepts of “interruptions” and “intrusions” and “dreaded future are applicable in the PM case as well.

We also investigate how women strategically use disclosure and concealment strategies to manage the re-presentation of themselves following PM (Hilbert 1984; Druley et al. 1997). In these studies, the researchers found that there is frequently contradictory pressure for patients to share and to conceal information about their feelings pertaining to their illness. “Dilemmas of whether or not to disclose illness information, and when, how often, and how much to disclose are issues with which patients must continually grapple” (Druley et al. 1997, p. 512). This paper is concerned with similar issues and addresses the tension between the PM decision and women’s renegotiation of a post PM identity, particularly self-image and self-disclosure. Themes associated with the everyday lived experience of undergoing a PM and reconstruction are to be reported in a companion paper.

Methods

Sample

We selected 21 women who posted on a two part thread about genetic testing, genetic counseling and family history at the end of 2000 and beginning of 2001. We chose this thread as our initial starting point because the messages concerned genetic counseling, genetic testing and family history—crucial factors that initiate the decision-making process regarding clinical management choices, namely surveillance versus PM (Ray et al. 2005). We chose to follow the same women over time, rather than investigate a larger group of women at one specific time because we wanted to study the emotional complexity of the PM experience and explore cognitive and emotional adjustment and reappraisal of PM decisions as women became further removed from the actual procedure.

We included these 21 women’s posts regarding PM and reconstruction that appeared on the message board during the period January 2000–March 2004, the last date the archived posts were available when we first initiated this project. They posted 1171 times on the PM topic. The women were partners in “conversations” on the message board, and thus their posts frequently were responses to other women’s comments. We included messages from “conversational partners,” who posted 328 times to the 21 women in our sample, in order to understand both ends of the conversations. All messages are retained verbatim, including spelling and grammatical errors. Four dots “....” are used when parts of the message have been deleted because of lack of space.

The women were mainly in their thirties and forties, and we can infer from their posts that they were predominantly middle class and fairly well educated. This is consistent with the overall profile of FORCE members who use the message boards.

There were 17 women who had not developed breast/ovarian cancer, referred to as previvors by the FORCE community, and 4 cancer survivors. One woman started posting as a previvor but later developed breast cancer and started to post again.

This study was approved by the University of Pennsylvania Institutional Research Board. Women signing on to the FORCE website were apprised that the website was public access and might also be used for research purposes. In order to protect the privacy of women currently posting on the FORCE message boards, we only reviewed password protected archived messages. Access to the archived material is provided by the executive director on a case by case basis. All posters were assigned pseudonyms which provided an extra layer of protection against identification of their FORCE screen names.

Design

We primarily relied upon qualitative analysis involving an initial identification of themes in the messages discussing PM using an inductive process involving coding and identification of recurring patterns, and relationships and processes in the data, emphasizing the participants’ own accounts of their phenomenological and social world (Pidgeon 1996; Strauss and Corbin 1994; Glaser and Strauss 1967). We developed a thematic account based on the women’s postings on the message board in order to identify various elements in the thread under investigation which might otherwise remain hidden and to emphasize the meaning in human action (Beeson 1997). Two of the authors used close reading and hand coding of the data until consensus was reached and all major themes were identified. This approach does not assume that there is only one measure of reality that is objectively grounded (Mathieson and Stam 1995).

Results

Table I describes the characteristics of the posters and frequency of their postings. (See Table I.) The women in this sample varied greatly in the number of messages they posted about PM, the number of different women they addressed or answered, and the length of time they posted. A few women were mainly lurkers—women who read messages but rarely contributed to the thread (Nonnecke et al. 2004). The majority of women began posting at the time they were deciding whether to continue surveillance or undergo PM and stopped when they had finished their post PM reconstruction. During the time they posted, they actively supported each other emotionally and with experiential information. A few of these women posted briefly at a later time when they had a question or something was troubling them. A couple of women continued to post for years. These women wrote about their dedication to FORCE and wanting to “return” the support they had received by offering their experiences to new FORCE posters who were now grappling with prophylactic decisions (Kenen et al. 2007).

Table I Characteristics of the Posters and Frequency of their Postings
Full size table

Tension Arising from BRCA Testing and Decision to Undergo PM; Psychosocial Aftermath

Self-Image and Interpersonal Relationships

The effect on self-image and interpersonal relationships frequently starts with a positive genetic test result (Kenen et al. 2004) and can go on for years, often pervading the woman’s life while she remains undecided how she wants to clinically manage her BRCA+ status. This can, in some cases, be considered a mental intrusion similar to an illness intrusion requiring time, accommodation and attention (Charmaz 1991). The actual PM and reconstruction is experienced more as an illness interruption which is temporary and over when it has been satisfactorily completed (Charmaz 1991).

Goffman (1963) also writes about how taken for granted aspects of what was formerly considered to be part of a normal life are no longer taken for granted. Irena reflects about something as simple as a hug. Hugs, which were a major part of Irena’s emotional expression, especially toward her children, became problematic and resulted in “bruising” as an unanticipated and uncomfortable side effect of her hard breasts. Hard reconstructed breasts were a common complaint by women on the message board.

....I ended up switching to silicone a year later and have been very happy. They are soft and I can lay on my stomach no problem. My entire family is happier and no longer has “boob brusing” on their bodies after long hugs. Seriously, they got in the way of good hugs.Irena

Feeling Different—Feeling Loss of Natural Breasts

The fear of loss of femininity, sexual attraction and loss of sexual pleasure were in the minds of many of the women. Liza feared her own reaction to her loss of breasts. Lee J feared her husband’s reaction. Both women expressed anxiety about the physical results of their PM decision.

Just wanted to let everyone know that I am counting down the days until my PM.... Getting a bit nervous. Not so much for the surgery (although that’s a bit scary) but for my reaction to loss of breasts. Reality, and my reaction to it, does frighten me! I will keep everyone posted once I am up and around. Thanks, Liza

Irena....I am still extremely anxious about the surgery. I also fear how my husband (of only 1 year) will react post surgery....How is he going to react when he sees my battered body?....Lee J

Perception of Self/Other Stigma

Concealing Through the Use of Clothing

When a person perceives a stigma attached to a body characteristic that can be hidden, she can choose to reveal it or conceal it. This can be done verbally and through the use of clothing. In Caitlin’s case, it seems more of a feeling of self-stigma rather than a stigma from a significant other. Even though Caitlin says she does not dwell on how her new breasts look, 3 years after her reconstruction she admits that she is still uncomfortable in the nude or “reveal” state even though her husband feels comfortable with her reconstructed breasts. The merest wisp of a cover such as a camisole top shifts her to a happier “conceal” state.

I am less self conscious in a tank top or camisole when I am with my husband intimately, though he doesn’t mind them. My pm was 3 years ago. I do love how they look in clothes which is an upside. I am self conscious naked, but don’t dwell on it, since I don’t feel my prior bc and positive braca status left me with any alternatives.Caitlin

However, it is how she looks in clothing, a more total concealer that makes her feel very good about herself. While Caitlin feels a tension between reveal and conceal, she actually feels little tension between the PM decision and its aftermath. She felt that her previous breast cancer and positive BRCA status did not leave her an alternative to PM.

Carin and Zoe were each pleased with their reconstructed breasts. Carin was comfortable revealing her body to her husband and was delighted to hear that he found her new breasts beautiful. The women frequently wrote about their need to feel sexually attractive.

Irena....I had my implants exchanged for silicone on December 29, 2000. So far they are great. I can’t feel the implant inside my body, they feel like real breasts, no sloshing and they look great! Even my DH told me that my “new breasts” are beautiful....Carin

Zoe normalized her new breasts by saying that in clothes nobody could ever detect they were not real and that her plastic surgeon brought up the suggestion of a “natural droop” to emulate real breasts. Her reference to her feelings that nobody could tell they were not real indicates that Zoe was probably a “concealer”, with strangers at least.

Dear Babs, I LOVE my implants....I can say my only “complaint” (although I think that word is far too strong a word to describe my feeling here) is that they are very firm. Not bad or uncomfortable, just not as soft and squishy as my old breasts used to be. Otherwise, I think they look great! The shape is good, and in clothes no one would ever detect that they weren’t real...Zoe

Lonnie Q was one of the few posters who decided not to reconstruct. In her case, living in Hawaii – where the muumuu and cool, comfortable clothing that concealed all types of body differences were the norm – made the decision not to have reconstruction more palatable. In addition, her husband has been supportive of her decision. The combination of being able to dress in “normal” clothing with being able to reveal her unreconstructed breasts to her husband appear to have helped Lonnie avoid feeling any self stigma or stigma from others.

....i am quite happy with not having the reconstruction and being flat chested. my husband has been very supportive with this decision. living in hawaii, the usual style of clothing is cool and comfortable, and i am at ease going out in public without any prostheses, besides the hawaiian dress called the muumuu helps to hide all the different body shapes and sizes....Lonnie Q

Verbal Revealing/Verbal Concealing

Shifts in Friendship and Workplace Relationships

Several women wrote on the message board about family conflicts where some family members felt stigmatized and refused to talk about the inherited breast/ovarian cancer in their family. Many more women posted about dilemmas they experienced regarding with whom they could be open and honest regarding their PM. They indicated a lack of trust in how their friends would react. RY found that her friends could not keep a secret but passed it on instead. None of the women used the word stigma, but talked about negative reactions or having to offer complicated explanations for their PM decisions. But as Goffman stated, a “discreditable stigma” is knowable, and the knowledge eventually is revealed and has to be addressed. In order to help “cover” the true situation, the women devised white lies that were close to the truth. They told about pre-cancerous conditions.

RY realized that in some sense she was stigmatized by her decision to have a PM. She says that unless she gave what her friends felt was a compelling reason, they thought she was “nuts.” Thus she had to renegotiate her identity with a white lie, the precancerous condition, and re-present herself with an acceptable explanation for her operation.

Liza, your suggestion about saying it was “precancer” and that due to family history the pm is recommended is also a good choice for me. I’ve found when telling friends, that if I don’t follow up with a compelling reason, such as the BRCA 1, they think I’m nuts. The precancer excuse may give me a compelling reason without having to disclose my genetic status! Randi, I have also found that some close friends haven’t been able to not share this important info with their close support system. At first I was soooo disappointed in them not keeping my confidence, but have forgiven the discrection by remembering they also have to process their feelings regarding this very emotionally charged issue.RY

A few of the women had bad experiences telling others about their PM and did not want to expose themselves to negative and stigmatizing comments. Randi recalled that most people were horrified that she had done this to herself. She chose what Goffman refers to as taking the discreditable stigma route. She chose an alternative narrative that she felt would present herself in a more favorable light and would, therefore, need to keep hiding her PM by managing information.

Zoe—Let the urge pass and DON’T tell anyone else. I am in the closet like you and wish I had told even less people then I did. I really don’t want the “lookie loos” nor do I get any pleasure from the ’support’ of others. Most people are horrified that I did this to myself (including a first cousin whose mother died of breast cancer). Just lie about it, say you had the flu, that it’s a bad year whatever, I have a few friends who figured out something was going on, but stopped asking and forgot about it after a few weeks....Randi

Intrusion into Mother/Children Relationship

Disclosing to children their own BRCA+ status and choice of a PM has additional implications. Several women wrote about not wanting to frighten their children and have them worry that they would lose their mother. Caitlin wanted to ensure the privacy of her son. She feared that he would face unpleasant fallout from gossip if she disclosed information about her PM to her wider circle of friends and acquaintances. Thus, Caitlin also chose what Goffman refers to as the discreditable route rather than the discredited one. She, however, considered the FORCE message board a safe place to tell the truth about her choices and feelings. Women on the message board kept reiterating this theme. The befriend/tend function (Taylor et al. 2000; Taylor 2002) was keenly appreciated by the posters.

Dear Josie, Choosing a pm is an enormous step, and anyone outside of our arena may have lots of difficulty processing it. I had no interest in having my general work place aware of the details of my surgeries.... Also for the privacy of my son, and my not wanting him to think he had a mother at risk of leaving him anytime soon, I had no interest in this being PTA chatter either. I am however a fairly active and grateful participant of this board, where I am most comfortable discussing life with a mutation and all its ramifications....Best, Caitlin

Telling pre-teen and teenage daughters involves the additional dimension of femininity and sexual attractiveness. It is particularly difficult for an adolescent girl who is beginning to develop her own breasts to adjust to the fact that during this time her mother is undergoing surgery to remove her breasts. Katya poignantly writes about this. Katyas’s breast cancer diagnosis was an intrusion into, and an interruption of, her previous relationship with her daughter at a sensitive time of her development. Her daughter’s comments that she would be embarrassed if her mother lost her breasts when she was just developing her own seemed to indicate that the daughter would feel a stigma on behalf of her mother.

....When I told my 11 year old daughter about the results of my genetic testing and explained to her what my follow-up options might be she said something that deeply touched me. She said that she would be embarrassed if I lost my breasts because she was just getting hers and it wouldn’t be fair. I asked her why she chose the word embarrassed and she corrected herself and said that she actually meant that she would be sad. Looking back on my own response at age 12 to my mother losing her breasts—I can see that she probably did mean both embarrass and sad.Katya

Cognitive and Emotional Reassessment: Coming to Terms with the PM Decision

Gradually, most of the women came to terms with both their BRCA+ status and their post PM self. Despite the complaints and dissatisfaction with their reconstruction that many of the women wrote about, the overwhelming majority of women stated that the freedom from fear and the diminution of risk was worth the problems associated with their PM. They reassessed their cognitive and emotional perspective over time. RY, as well as several other women, felt that as an extra bonus they ended up with breasts that looked better and had a sexier shape after the reconstruction than before. RY, who missed the sensation in her breasts and had a rough reconstruction period with several operations, viewed her good outcome as compensation for all she went through and gave up.

Faye....After two kids, nursing, and 39 years, my brests were also kind of stretched out and saggy. I have to admit that sometimes I feel a little guilty for enjoying the great way my new breasts look in clothes. I even feel that I have a sexier shape without the clothes (although, of course, there is no erotic sensation). I enjoy the perkiness, the fullness, and not having to ever wear a bra! My husband likes it too! I try to look at it as compensation for everything I’ve gone through and gave up!RY

Sally was just beginning to consider being less concealing about her PM. While she still chose to remain silent, she wrote that she admired the women who were able to be open about their PM and who helped educate the public as a result.

I just want to applaud all the women who have chosen to be open with their very personal issues and help educate and inform the public in the process. I have tended to be very private up til now—time will tell what I do in the future....Sally

Caitlin probably reflected best the views of most of the women when looking back at their PM experience. She wrote, “....I feel comfortable that I have done and continue to do all that I can to reduce my risks and be here for my family”

Discussion

Goffman and Charmaz primarily applied their concepts to illness and mental and physical disabilities. While a PM does not fit neatly into either category, it has sufficient parallels to allow application of their concepts to gain a greater understanding of the situations faced by women from HBOC families. Many of these women’s presentations of self after a PM were affected by changes in their breasts – looks and feeling – that influenced their self-image and their willingness to disclose the PM to extended family, children, friends and co-workers. Weitz (2004) in her book The Sociology of Health, Illness, and Health Care: A Critical Approach, concludes that: “Those whose bodies differ in some critical way from the norm must develop a self-concept in the context of a culture that interprets bodily differences as signs of moral as well as physical inferiority. The resulting stigma leads individuals to feel set apart from others” (p. 177).

The women in this sample did not explicitly use the word stigma, but their decisions not to disclose their PM and their use of clothing to hide their breasts, especially during the reconstruction period, indicated a discomfort in revealing their operation to acquaintances and co-workers. They usually felt more comfortable about revealing to very close friends. Currently, PMs are more familiar to the general public than they were in earlier years because of the increase in knowledge and media coverage about hereditary breast cancer. But these women were early adapters and, thus, found it difficult to determine how a friend or co-worker would react. Some women in our sample complained that their friends could not keep a secret and the information about their PM “got out.” The reaction from others was unpredictable and this made it difficult for the women to take a chance with revealing themselves. Yet a few women wrote about misunderstandings that were cleared up when they carefully and completely explained why they chose to have a PM.

We saw examples of both “passing” and “covering” in our data. Non-disclosure was the main way the women chose to “pass.” In addition, some women used what we call a hybrid form of passing/covering by using a close approximation of the truth, e.g., an operation for a pre-cancerous condition. They felt that it was easier to disclose a cancer related mastectomy than a prophylactic one. Individuals who were not members of high-risk HBOC families sometimes had difficulty in comprehending why a woman would remove “healthy breasts” and found this type of preventive surgery abhorrent. Therefore, some women presented an alternative, and what they considered to be a more acceptable, pre-cancer narrative.

Clothing that hid scars and the shape of breasts was used to “pass,” as were prosthetics. Clothing was also used to “cover.” One of the women years after her surgery wrote about how she still felt uncomfortable naked when she was intimate with her husband, even though he did not mind. She wore a tank top, or a camisole, to deflect her husband’s attention from her reconstructed breasts. Another woman who did not reconstruct felt comfortable in her environment where wearing loose fitting clothing was the norm.

The issue of potential stigma may be one of the reasons women expressed their satisfaction and happiness with the FORCE message board. They wrote about the way that they can be completely open about their decisions and emotions and were completely supported. They did not have to worry about any potential stigmas and negative reactions.

Charmaz (1991) wrote about the self in terms of relationships and time during periods of chronic illness. But most of the women in this study faced “chronic risk” rather than chronic illness. There are similarities, however, between these two situations (Kenen et al. 2003). In Charmaz’s terms, many of these women prior to a PM, are trying to prevent their past and future from consuming them. Their thoughts about the past are filled with memories of family loss, and their future is clouded with concerns about their own premature deaths (Kenen et al. 2003; Lloyd et al. 2000; Hopwood et al. 2000). This is true for women who already developed cancer as well (Ohlen and Holm 2006). Women with a high risk for inherited breast/ovarian cancer experience what Charmaz calls a “dreaded future.” Undergoing a PM provides them with an “improved future.” But their “taken for granted future” is gone. The women on the FORCE website expressed these themes and repeatedly emphasized the value they placed on their “improved future”—one that reduced their cancer risk by 90%.

The women realized that they paid a high price for their PM decision in terms of physical pain, mental anguish, shifts in social relations and feelings about themselves. As Lloyd et al. (2000) concluded, “The surgery meant that women were faced with having to renegotiate their identity where they felt less of a woman, and accepted a new identity with significantly reduced cancer risks” (p. 482).

The events surrounding genetic counseling, genetic testing, the PM and reconstruction appeared to be the times, events and experiences that became anchored to the selves of the women in this study. The earlier chronic intrusive thoughts and interruption of normal life during the PM and reconstruction period were over, but the marks on their bodies and lack of sensation in their nipples and breasts remained with them and reminded them of the past and their former taken for granted future.

Subsequent to their healing from their final reconstruction operation, most of the women stopped posting and several specifically said that they wanted to move beyond the threat of a cancer dominated life. Despite moments of sadness, but not regret, the women in this study who chose a PM felt that they made the correct choice in doing whatever was possible to live in an “improved future.” They were willing to pay the price of lost body parts and loss of some sexual pleasure for a future free of the previously encompassing fear. Their aim was to return to normal and they achieved this as much as possible.

Limitations

Certain limitations are inherent when relying on messages from a publicly accessible website as data (Jacobson 1999). Individuals posting on the PM threads who discuss self-image, self-disclosure and stigma might not reflect the collective views of either those posters who do not mention these issues or those who read the messages but do not post. While web based support group data has the advantage of being natural, rather than in response to researchers’ questions, the disadvantage is that the researcher is not able to focus questions and probes regarding specific issues of interest. Furthermore, this is a small, exploratory qualitative study and the findings cannot be generalized to the larger population of women carrying a BRCA1/2 mutation. In addition, for this type of qualitative analysis, there can be more than one measure of reality that is objectively grounded.

Clinical Implications

The influence of the larger social context on women from HBOC families is a neglected area of investigation and requires both further research and a greater understanding by geneticists, genetic counselors and genetic nurses working with high-risk women. The experiences of these women living with PM highlight some often neglected psychosocial issues that need to be taken into account in decisional support and follow up of other women in this predicament.

Results from this study indicate that worry about how their PM decision is received colors the women’s relationships with individuals in her social world—colleagues, acquaintances, church members, etc., in addition to family and friends. Whether or not to disclose a PM becomes problematic for some women. Thus, the content of counseling courses required of health professionals caring for women from HBOC families should be expanded to include the effect of other members of a woman’s social world. Furthermore, because the norms of the society are involved, simply counseling the women from HBOC families is not sufficient. Interdisciplinary approaches to the education of other professional groups and the general public are also required to ease the path of women from HBOC families who choose the PM route.