The diagnosis of a deleterious BRCA gene mutation is devastating for women because they often view the mutation as a cancer diagnosis (Getachew-Smith et al., 2020; McQuirter et al., 2010). This perspective is not an unfounded response because having a BRCA1/BRCA2 gene mutation confers an 85-90% lifetime risk of developing breast cancer and a 27-65% chance of developing ovarian cancer (Donnelly et al., 2013). Therefore, a diagnosis of a BRCA gene mutation presents a dilemma in which life-changing medical decisions must be made to prevent breast and ovarian cancer. The decision to choose a prophylactic measure, such as intense surveillance, chemoprophylaxis, radiation, bilateral prophylactic mastectomy (BPM), and/or bilateral prophylactic salpingo-oophorectomy (BPSO), is complex (Krassuski et al., 2019; McQuirter et al., 2010). Furthermore, psychosexual functioning, which includes psychological well-being regarding body image and sexuality, is likely affected by the diagnosis of a BRCA1/BRCA2 gene mutation (Hoskins et al., 2014; Matloff et al., 2009). However, evidence regarding how these factors affect the decision to have prophylactic treatment is minimal.

Women of childbearing age (WCBA) (18-49 years) are at a unique stage in life where childbearing, career development, and the establishment of intimate relationships are most important (Glassey et al., 2016). Approximately 50% of BRCA1/BRCA2 gene mutation carriers choose intense surveillance; however, only 70% of all BRCA carriers follow the recommendations for intense screening (Padamsee et al., 2017). Evidence suggests that an individual's psychological state affects preventive treatment decisions (Padamsee et al., 2017). Therefore, WCBA need to feel understood and have knowledgeable support available during the decision-making process. Genetic counseling before and after BRCA gene mutation diagnosis is helpful; however, assuring that continued psychosexual counseling is available to assist WCBA with an informed, independent decision is imperative.

Therefore, there is a critical need to understand how a BRCA mutation diagnosis affects psychosexual functioning, how a BRCA mutation diagnosis influences the decision to have prophylactic treatment, and how psychosexual functioning is affected after prophylactic intervention. This study explored the role of psychosexual functioning in the decision to have prophylactic treatment and the subsequent experiences of WCBA diagnosed with a BRCA1/BRCA2 gene mutation. A qualitative descriptive design was used to accomplish this aim.

Background and significance

Prophylactic options to reduce breast cancer include intense surveillance (i.e., clinical breast examinations, breast ultrasound, mammography, and magnetic resonance imaging), chemoprevention, and the surgical removal of healthy breast tissue (i.e., BPM) (Zeichner et al., 2016). Risk reduction options to prevent ovarian cancer include intense surveillance (i.e., transvaginal ultrasound and CA-125 measurement) and BPSO (Padamsee et al., 2017; Zeichner et al., 2016).

Bilateral prophylactic mastectomy reduces breast cancer risk by 90% (Zeichner et al., 2016). Bilateral salpingo-oophorectomy is recommended for women aged 35-40 years (after childbearing) because it results in surgical menopause, thereby decreasing the production of estrogen, a known carcinogen (Zeichner et al., 2016). However, surgical menopause may cause changes in sexual functioning (e.g., difficulty with arousal, painful intercourse), which may affect body image (Bober et al., 2015). Women encouraged to have prophylactic treatment often do not comply with even the least invasive options (Evans et al., 2016). Noncompliance may be due to providers' lack of knowledge regarding options as well as the woman's lack of understanding regarding available options (Padamsee et al., 2017). Women younger than 25 years may not have the cognitive skills to make irreversible and life-changing decisions regarding prophylactic measures (Hoskin et al., 2014). Underhill and Crotser (2013) found that acknowledging body image changes and sexuality, understanding provider recommendations, and environmental resources were unique decision-support needs of women with a BRCA1/BRCA2 mutation.

Surgical prophylactic interventions, such as BPM and BPSO, have continued effects on social and sexual functioning related to body image, the partner's perception, sexual attractiveness, and femininity, which further affect psychological well-being (Mroczek et al., 2012; Paterson et al., 2016). However, sexuality, body image, and intimacy are often overlooked by health care providers and genetic counselors throughout the treatment process (Dikmans et al., 2019; Underhill & Crotser, 2013). Because WCBA may have poorer psychosexual functioning, survival, and psychosocial effects than women older than 50 years (Mroczek et al., 2012), understanding the effects of cancer prophylaxis on self-esteem and sexual, emotional, and psychological health is essential.

Theoretical framework

The Fomby-White Theory of Choice (2008) guided this study because it provides a structure for examining the process by which individuals facing difficult health choices judge the merits of multiple options. The theory's assumptions include individuals facing a choice may be forced to decide without the resources to understand the choices fully; subconsciously external factors and internal factors influence choice; and nurses may label individuals as nonadherent without being fully knowledgeable of not only the individual's preference but also the individual's choice process.

Methods

A qualitative descriptive design was used to explore, interpret, and describe the complex experience of WCBA with a BRCA mutation. Qualitative research expertise was provided by J.E., D.W., and M.A. to assist in the observation, interpretation, and analysis of the data.

A reflective journal was used to counteract bias and assist with thick descriptions, linkages, study rigor, and trustworthiness of analysis throughout the data collection process. Interviews were professionally transcribed to further ensure data transferability. After each interview, the principal investigator reflected on the process and outcomes and documented reflections. Interpretations of main categories and common themes were agreed on by the research team for study rigor. Conceptualizations were developed by several participant responses rather than individual occurrences, and thick descriptions of the responses were used. Data triangulation was accomplished by reviewing the interviews, reflexive notes, and comparing the literature. Credibility was obtained by triangulation of transcripts, field notes, and a literature review (Polit & Beck, 2017). Confirmability was established by reviewing all transcriptions during analysis. Confirmability and credibility were validated through discussion of the results by the research team.

Approval and recruitment

This study was approved by The University of Texas Health Science Center at Houston's Institutional Review Board. Participants were recruited until data saturation was achieved. Study participants were recruited from BRCA support and/or prophylactic support groups, local BRCA support networks, and a national organization Facing Our Risk Empowered, after obtaining permission from each organization's administrator. The groups' administrators notified members through a flyer. Individuals were eligible if they were female, were 21-49 years old, had been diagnosed with a BRCA1 or BRCA2 gene mutation or a BRCA mutation of undetermined significance, spoke English, and had access to Zoom video. Women who were older than 50 years or who had been diagnosed with breast or ovarian cancer were excluded. Men with a BRCA mutation or a breast cancer diagnosis were excluded.

Procedure

Women who contacted the investigator were sent a link to the screening questionnaire and study information, including consent information. Women who met the criteria were sent an informed consent form and a link to schedule the interview. All interviews were video or audio recorded through Zoom and uploaded to a secure iCloud system. Although given the option, none of the participants opted out of the video or audio recording. The participants were sent a link to a demographic questionnaire and a $20 gift card.

The interviews were conducted by the first author and lasted 11-46 minutes per participant (M = 27 minutes). The women were asked about their experience after being diagnosed with the BRCA mutation, which prophylactic options they considered, and the effects of their decisions. The interview items included the following: "Tell me the story of your experience receiving the diagnosis of the BRCA mutation from the beginning until now"; "Have you undergone any prophylactic treatment? If so, how has it affected you?"; and "How do you feel about the effects of prophylactic options?" The interview items comprised body image, sexuality, intimacy, femininity, confidence, and childbearing cues.

Sample

Of 35 women who completed the initial screening questionnaire, 17 were excluded because they had a history of breast cancer (n = 3), were older than 50 years (n = 1), decided not to proceed with the interview (n = 3), completed the questionnaire but did not schedule an interview (n = 7), or did not present for an interview (n = 3). See Table 1 for participant characteristics. One participant did not complete the demographic questionnaire after follow-up attempts; however, her interview responses were included. The sample comprised mostly highly educated married women with no children. All the women (N = 18) were diagnosed with a BRCA mutation within the past 10 years. Treatment considered after diagnosis included surveillance (n = 15), BPM (n = 14), and BPSO (n = 12). Two participants, ages 23 and 43 years with no children, considered surveillance only. Participants ultimately chose BPM (n = 8), BPSO (n = 3), and surveillance while considering future surgical options (n = 8).

Table 1. Sample demographics

Results

Data analysis revealed four major themes that influenced decisions related to the diagnosis and management of a BRCA mutation: body image, sexuality, femininity, and childbearing/childrearing (Figure 1). In the following examples, participants are identified by a participant number (P#), age range (~ to the nearest half-decade), marital status (M = married, S = single), year diagnosed (dx), prophylactic option, and number of children.

Figure 1. Schematic of the concerns of women of childbearing age with a BRCA mutation related to psychosexual functioning. The major categories that influenced decision making included

Although some participants had not undergone surgical prophylaxis, they all voiced concerns regarding body image and sexuality that caused some hesitancy in their decision to have prophylactic surgery. Participants who had undergone BPM (n = 8) were concerned about scarring, breast disfigurement, and lack of sensation. Participants still considering BPM were concerned about scarring, the fit of clothing, and feeling like a woman. Participants who had undergone hysterectomy or BPSO (n = 2) were concerned about scarring and feeling sexually attractive. Participants who were considering BPSO (n = 12) were concerned about menopausal symptoms and future effects of hormonal changes, such as negative emotions/mood, decreased bone density, and increased risk of heart disease.

Body image

Body image is defined as not only how a woman views herself and others but also her functionality (Paterson et al., 2016; Pelusi, 2006). The participants discussed their perceptions of themselves and concerns about how they were/would be viewed by their partners, other family members, and even unknown persons.

Scarring

Scarring was a prominent concern affecting decision making (n = 12) pre and post prophylactic surgery. The participants were more concerned about scarring on the breast area than scarring on any other body part. There was also a difference in concerns about visible scarring (n = 7), such as a scar from BPM, compared with laparoscopic incisions from BPSO or a healed scar (n = 3) from a previous C-section. Scarring of the breast was referred to as being "ugly," "disappointing," "not perfect," and "in my face." When discussing how the scars affected their body image, participants expressed some ambivalence. One participant noted being content with not having breast cancer but disappointed in the outcome of BPM and fear of future surgical scarring. Another participant stated, Well wait, so it's awesome about not having breast cancer, I will not have it. But it's a sense of I don't feel comfortable taking my top off when I'm with my husband. (P1, ~40 years, M, dx in 2016, BPM, child >= 2).

The participants also openly discussed struggles with their body image before surgery and reflected on how scarring may affect them post prophylactic surgery. One participant compared her cesarean scar with her mastectomy scar (Appendix A1, http://links.lww.com/JAANP/A200).

Feelings of isolation and feeling different

Women were asked about their experience after being diagnosed with a BRCA mutation. Almost all (n = 14) felt supported by their family and significant others after the diagnosis. A sense of empowerment after the diagnoses was noted in that the women had an increased awareness regarding the importance of health and of their bodies during the decision-making process and postprophylactic surgery. Participants expressed feeling different (n = 9) and isolated (n = 7) by the diagnosis and decision-making process. Being aware of a "sense of mortality" that other women of their age do not have to think about was also mentioned. Appendix A2, http://links.lww.com/JAANP/A200 presents one participant's experience of feeling isolated and different.

The participants felt isolated by making decisions early in life that other women of their age did not have to consider regarding issues, such as breastfeeding, childbearing, and egg freezing due to surgical menopause. See Appendix A3, http://links.lww.com/JAANP/A200 for a participant's experience of isolation.

Not having access to support groups exclusive to women with the BRCA mutation caused some women to feel different. Conversely, one participant who had found a support group said that she felt alone in her "personal life" but not in her "social media life." One participant noted that she did not feel different regarding fertility and breastfeeding because she accepted the option of not having children before surgery.

Participants reported that guidelines available for BRCA mutation carriers and decision making were specific to older women, which caused additional feelings of isolation. The youngest participant, however, denied having feeling isolated but anticipated feeling isolated after surgery.

Confronting menopausal symptoms

Eight participants considered that BPSO were concerned about menopausal symptoms such as bone density loss, weight gain, hot flashes, negative emotions/mood, and decreased sex drive (Appendix A4, http://links.lww.com/JAANP/A200 for response). Two of the women were ambivalent about surgical menopausal symptoms, with one stating, It gets to the point where, you've kind of asked, would I prefer to have an increased risk of cancer or an increased risk of heart disease, osteoporosis, and all of these other wonderful things? (P15, ~40 years, S, dx in 2018, BPM, child 0).

Problems with implants and autologous or flap reconstruction

Eight participants who had undergone breast reconstruction openly discussed the effects of surgery and their experiences with implants. The movement of the implant, the "feel" of the implant, the decision to have an implant versus autologous reconstruction, and experiences with tissue expanders were mentioned. One participant waiting to undergo BPM wanted to "look like a woman." Another, while going through the process of reconstruction, felt she was "not quite a woman." See Appendix A5, http://links.lww.com/JAANP/A200 for further description. Another participant described pain, the appearance of the muscle overlying the breast, and disappointment regarding breast size (Appendix A6, http://links.lww.com/JAANP/A200).

External influences on decision making

External influences on decisions included health care professionals, environmental resources, and the words/opinions of others. Four participants were influenced by having a parent, friend, or sibling who had been diagnosed with breast cancer and had undergone treatment and/or mastectomy. One participant described her experience being influenced to have BPM by another patient (Appendix A7, http://links.lww.com/JAANP/A200).

Some participants hesitated to decide on prophylactic treatment even after hearing about others' experiences of being diagnosed with breast cancer. Conversely, one participant was very confident in her decision to have BPM despite outside influences, stating, I didn't move ahead until I felt super, super secure with my decision, with my team, with my plan of attack[horizontal ellipsis] then there were outside influences that were like, "Why are you going to[horizontal ellipsis]cut open a perfectly healthy body? It's not like you're a car. You can't just take pieces in and out." I felt so secure with my plan that I wasn't really influenced by their feedback. (P4, ~35 years, M, dx in 2014, BPM and hysterectomy, child 0).

Internal influences: perceptions, lived experiences, and attitudes

Internal influences on the decision to undergo prophylactic treatment included the woman's perceptions of the diagnosis of a BRCA mutation as a disease, illness, or cancer diagnosis. One participant contemplated having undetected late-stage ovarian cancer versus being diagnosed with breast cancer. Some participants who had chosen surveillance and prophylactic surgery expressed ambivalence about prophylactic options and their potential to decrease their risk of breast cancer.

Concerns about looking different after surgery or being viewed as "less of a woman" for having breast prostheses versus breast implants were salient. The participants often conceded that the decision to have prophylaxis was better than a cancer diagnosis (Appendix A8, http://links.lww.com/JAANP/A200).

Lack of communication with provider and discordance with setting

Nine participants discussed their interaction with the provider at diagnosis, during surveillance follow-up, and/or after reconstruction. Participants were concerned about providers' knowledge regarding the BRCA mutation and recommendations, how the BRCA diagnosis was delivered, failure in communication among the health care team, and not being given all options for reconstruction. Two participants said that they received the results of the BRCA mutation test over the phone. Some women were referred by their gynecologist to a surgical oncologist without referral to see a genetic counselor. Other concerns regarding the medical provider's approach during annual visits were evident (Appendix 9, http://links.lww.com/JAANP/A200).

Several participants also discussed their visit to the oncologist. They felt that they might benefit from being in a different waiting room or having a different appointment schedule than those with an actual cancer diagnosis (Appendix A10, http://links.lww.com/JAANP/A200).

Sexuality

Participants' intimacy with their partners after prophylactic surgery was affected by scarring, pain, altered sensation, decreased libido, and reduced awareness of sexual advancements. Two participants discussed using nipple prostheses to enhance intimacy. Scarring, pain, sensation loss, and changes in breast size before BPM (i.e., breast lift) affected intimacy (n = 4) for both partners. The possibility of additional scarring from an autologous flap procedure also caused intimacy issues (Appendix A11 & A12, http://links.lww.com/JAANP/A200).

In addition, a participant who was in a same-sex relationship (sexual minority women [SMW]) raised concerns about the one-size-fits-all approach used by her provider. This participant discussed specific needs of SMW that should be considered: A further resource that I think would be really helpful is to have something for those of us who are diagnosed who are LGBTQ-it's just a different level of dealing with when it comes to dating. I have different concerns. I think dating, it's always assumed it's a man that you're dating and that you're having conversations-about bringing kids in or like this traditional version of marriage. For a gay woman, as myself, the question of femininity is a little different. It's hard because, the person I'm dating is someone that has the same body as I do, right? She knows what my body is like, and because it's the same as her own and that makes it much more understanding, which is nice. She understands what menopause could be like but[horizontal ellipsis]it also is more difficult because there's this sort of feeling of inferiority in certain ways[horizontal ellipsis] I don't know why, but that her body is working, and my body is not. (P18, ~30 years, S, dx in 2016, surveillance, child unknown)

Femininity

Common concerns associated with the loss of the breast revolved around femininity and being a woman. There were also concerns about the fit of clothing after changes in the size and contour of the breast. The women described the idea of breast removal as "it's taking away all the things that make me a woman [horizontal ellipsis] it's important for me to keep my breast [horizontal ellipsis] that's how women are portrayed [horizontal ellipsis] women have breasts," and "they were a part of how I saw myself as a woman." The breast was considered part of the women's self-identity (Appendix A13, http://links.lww.com/JAANP/A200).

Participants described becoming more aware of being a woman and of their femininity after being diagnosed with a BRCA mutation, regardless of their sexual orientation. Some reported having negative perceptions of their breast post BPM in Appendix A14, http://links.lww.com/JAANP/A200.

One participant openly discussed her struggle and frustration with wearing nipple prostheses and the constant projections of the nipple in clothing and said she was content with not having nipples. However, another participant who had chosen a nipple-sparing mastectomy said that nipples were important in making her feel "normal."

Childbearing/childrearing

Being present

Many participants decided to undergo surgical prophylaxis to increase their odds of surviving to continue being a parent and to see their future grandchildren. Most participants who acknowledged this influence on their decision also had a grandmother, mother, sister, or friend who had breast or ovarian cancer.

Fear of transmission

Fear of passing the genetic mutation on to their children was also apparent. In addition, participants recalled their experience of caring for their parents with cancer and did not want a similar burden for their children.

Being a parent

One participant discussed her experience after BPM and BPSO with four young children and its emotional impact on her being a parent in Appendix A15, http://links.lww.com/JAANP/A200.

Future childbearing

One participant was pregnant during the interview and had considered BPM and BPSO but declined surgical prophylaxis because she was "not finished using those parts." Two participants, aged 39 and 40 years, had concerns regarding the ability to have children, fertility issues, and considerations such as surrogacy and adoption. One participant described realizing that she would no longer be using her ovaries (Appendix A16, http://links.lww.com/JAANP/A200).

Breastfeeding

Most of the participants who had not had children (n = 9) stated that breastfeeding was very important to them and the potential inability to breastfeed created a sense of grief and caused some reservations about opting for BPM. Indeed, the need to breastfeed was a common reason for choosing continued surveillance instead of surgical prophylaxis. One participant discussed her inability to continue breastfeeding and the negative effect on her relationship with her son (Appendix A17, http://links.lww.com/JAANP/A200).

Discussion

After being diagnosed with a BRCA mutation, our study participants faced critical decisions regarding prophylactic care. When considering the options available, participants were influenced by internal and external factors, including the known and unknown consequences of the different prophylactic options. Body image and sexuality, as separate but overlapping entities, were internal influences on their decision making.

Body image is integral to sexual functioning, and others' perceptions highly affect body image (Paterson et al., 2016; Sheppard & Ely, 2008). External influences such as communication with providers, others' opinions, the care setting, and family members' experience also affected body image and the decision to undergo prophylactic treatment. Body image and sexuality were also influenced by what would be considered normal behaviors in WCBA (e.g., breastfeeding, BPSO after childbearing). The participants considered societal norms and their wants and well-being. Isolation and feeling different were common themes while considering prophylactic options.

The participants who had chosen BPM continued to make decisions regarding breast reconstruction, childbearing, and BPSO. The participants who were under surveillance and considering BPM and/or BPSO were in the process of deciding when prophylactic surgery should take place. These findings suggest that decision making is a continuous process before, during, and after prophylactic options have been chosen.

Psychosexual functioning is not solely based on the individual's views of oneself but also influenced by the woman's environment, the resources available, and the views and opinions of others, including communication with the health care provider and multidisciplinary health care team. Dissatisfaction with the appearance of the breast and scarring after BPM has been reported previously (Glassey, Hardcastle, et al., 2018). However, the issues related to dissatisfaction were not discussed as concerns. Evidence from the literature and this study suggests that women do not feel comfortable asking questions about body image and sexuality for fear of being ridiculed for being more concerned with changes in appearance than with the severity of cancer risk (Matloff et al., 2009). Several studies have determined that women are not always given realistic expectations regarding potential outcomes of surgery, a finding that was also supported in this study (Dikmans et al., 2019; Matloff et al., 2009; Underhill & Crotser, 2013). Previous findings have shown that lack of sensation, scarring, and changes in sexuality and body image have not been adequately explained by surgeons and health care providers (Dikmans et al., 2019), which was also corroborated in this study.

This study also supported that the differences between reconstructive procedures (i.e., nipple-sparing mastectomy versus non-nipple-sparing mastectomy, reconstruction with implants versus autologous reconstruction), implant failure, and the scarring that may occur with each procedure are not always clearly communicated to patients diagnosed with a BRCA mutation (Dikmans et al., 2019; Everaars et al., 2021). Similarly, patients are often unaware of the side effects of BPSO, such as difficulty with orgasm, decreased libido, and menopausal symptoms; therefore, preoperative information regarding these side effects is critical for sexual health and intimacy (Boa & Grenman, 2018; Matloff et al., 2009). Bober et al. (2015) suggested that a psychosexual intervention after prophylactic treatment improves psychosexual functioning, self-efficacy (over external and internal influences), and knowledge regarding sexual health while decreasing somatic symptoms and anxiety through cognitive therapy and sexual health education.

A previous finding that was not supported suggested that SMW who have undergone BPM have insignificant changes in body image or femininity and are pleased with the removal of breast tissue compared with heterosexual women (Rubin & Tanenbaum, 2011; Skorzewska et al., 2021). Instead, SMW participants had concerns about breastfeeding, the association of their breasts with self-identity as female, feeling attractive, and the appearance of their breasts after BPM. Complicating SMW's care, physicians do not consistently acknowledge sexual orientation when developing care plans, and SMW may not actively disclose their sexual orientation (Boehmer et al., 2014; Malone et al., 2019).

Body image and sexuality are affected once women see the surgical scars or the effects of chemotherapy on a relative with breast cancer (Matloff et al., 2009). Decker et al. (2012) suggested that to minimize psychosexual morbidity in cancer survivors, body image, sexuality, and intimacy must be addressed early in the diagnosis process before treatment initiation. Ganz et al. (1998) suggested that assisting women with feeling "normal" during the process may assist with body image and sexuality by allowing a comfortable environment to discuss psychosexual issues. Our findings support the premise that a waiting room that is separate from the typical cancer care clinic may improve the receipt of genetic counseling, decrease anxiety, increase well-being, enhance communication with the provider, and avoid the perception of being a "cancer patient" (Phelps et al., 2008). Women should receive care in an environment that is comfortable and welcoming to their specific needs.

Furthermore, not only are family, friends, and environmental resources primary external influences but also providers' recommendations were significant in the decision-making process. Previous research has shown that provider mistrust, inaccurate provider recommendations, incorrect provider information, and a lack of provider knowledge regarding the BRCA mutation further prohibit developing an individualized plan of care (Glassey et al., 2016; Matloff et al., 2009). In addition to an individualized plan of care, appropriate referrals and recommendations specific to WCBA are essential for psychosexual functioning and the decision-making process (Bober et al., 2015; Underhill & Crotser, 2013).

Participants in this study who were in a relationship recounted being supported by their significant others throughout their diagnosis and decision to have prophylactic surgery. Even so, the women reported feeling isolated and/or different from their peers due to their diagnosis, their childbearing status, and their decision to have prophylactic surgical intervention.

Any part of a woman's body is considered a part of her self-identity (Kocan & Gursoy, 2016). The breast symbolizes womanhood, beauty, femininity, sexuality, attractiveness, and motherhood (Kenen et al., 2007; Kocan & Gursoy, 2016). From this study, we can surmise that any change in the appearance of the breast not only affects body image but also affects one's identity, regardless of sexual orientation. For WCBA, simple gestures such as hugging their child or picking up/holding the child for comfort are critical to the mother-child relationship (Kenen et al., 2007).

Childbearing and breastfeeding were closely related to body image and sexuality, like the findings of previous studies by Kenen et al. (2007) and Kocan and Gursoy (2016), who reported WCBA perceptions of themselves and their lived experiences affect body image. These findings further demonstrate that body image and sexuality concerns should be addressed. Sexual orientation, marital status, childbearing status, and psychosexual functioning should be discussed before choosing prophylactic treatment for a BRCA mutation.

However, there is a dearth of literature on referrals to assist with body image and sexuality concerns at surgical consultation. In addition to genetic counseling, targeted psychological and sex therapy may be indicated before and after prophylactic measures to assist with adjustment issues. Communication among the multidisciplinary health care team (i.e., primary care provider, genetic counselor, gynecologist, oncologist, surgeon, and nurse navigators/decision support) is paramount to ensure recommendations and plan of care are congruent.

Furthermore, there is an increase in primary care providers ordering, referring, and managing genetic testing before referral to oncology. It is imperative that nurse practitioners, as primary care providers and external influences, are knowledgeable of the decision-making process in BRCA mutation carriers. The nurse practitioner must be comfortable with thorough assessment of family history, body image, and sexuality at baseline by addressing psychosexual concerns. Being comfortable with addressing psychosexual concerns may enhance the well-being of patients pre and post BRCA diagnosis. This is also critical to providing decisional support because medical oncologist, radiation oncologist, breast surgeons, and plastic surgeons may not be able to assess and discuss psychosexual concerns with prophylactic treatment.

Moreover, it is important to understand differences in sexual expression in young women. Nurse practitioners and all health care team members must be sensitive to the needs of young women and SMW regarding sexuality and expression of self-identify. In addition to intimacy within partner relationships, changes in the breast also affect the mother-child relationship, which should be addressed when addressing body image and femininity.

Limitations

We used a qualitative descriptive approach, which is subject to recall bias and the inability to generalize the findings to all women with a BRCA mutation who are considering surgical prophylaxis. Further discussion on the specific type of breast reconstruction may have given more insight into participants' experiences. Women in this study were considering prophylactic surgery or had undergone a prophylactic procedure within the past 5 years, so their views might have evolved. Most women participating were White, followed by Hispanic and Asian, but there were no African American participants.

Conclusions

Women of childbearing age diagnosed with a BRCA mutation must consider prophylactic options that affect their body image and sexuality. Body image, sexuality, and sexual orientation should be addressed at first contact and considered while developing a plan of care. Although women may have support from their family or significant others during the decision-making process, psychosexual concerns may not be addressed owing to humiliation and isolation.

This study postulates that psychosexual concerns of WCBA with a BRCA mutation diagnosis significantly affect the decision to undergo prophylactic measures. Body image and sexuality concerns may be present before diagnosis and further affect the individual's perception of herself after BRCA mutation diagnosis. Provider communication and preparation for realistic surgical outcomes can be improved to assist WCBA throughout the decision-making process and enhance psychosexual functioning.

References