“When I Look in the Mirror,I Want to See a Healthy Body”: The Lived Experience of Young Previvors,Bilateral Risk-Reducing Mastectomy,and Body Image

Abstract

Breast cancer is a significant cause of cancer death in young women in the United States. Inherited pathogenic variants, like BRCA1 and BRCA2, contribute to an increased lifetime breast cancer risk in this population. For women with a known pathogenic variant but without a previous cancer diagnosis, also known as “previvors,” the bilateral risk-reducing mastectomy (BRRM) most effectively reduces breast cancer risk. However, this surgery often causes physical change to the body. While existing research has examined the effect of BRRM and body image among previvors across the lifespan, the effect of prophylactic breast removal to decrease lifetime breast cancer risk in young previvors less than 40 years of age is less understood. A descriptive phenomenological approach, along with participant-submitted images, from a sample of 13 young previvors from the Midwestern United States, aged 29 to 39, explored the lived experience of BRRM and body image in the first 12 months following surgery. Narrative data served as the primary source, augmented by participant-submitted visual data. Essential themes were intuited to include BRRM to promote health, the importance of adaptation and acceptance to a changed body, and unexpected challenges following surgery; body image was found to be largely positive after healing occurred.

Keywords

previvor young previvor bilateral risk-reducing mastectomy increased lifetime breast cancer risk pathogenic variant BRCA USA

Introduction

Pathogenic variants in genes such as BRCA1, BRCA2, CHEK2, ATM, and PALB2 significantly increase a woman’s lifetime risk of developing breast cancer (American Cancer Society, 2021; Couch et al., 2014; Shiovitz & Korde, 2015). Hereditary cancer multigene panels can identify individuals with these genetic predispositions, enabling women to implement proactive risk management strategies before a breast cancer diagnosis occurs (James et al., 2022; Vysotskaia et al., 2020). The term “previvor” describes women who carry a pathogenic variant that increases their lifetime risk of breast cancer, but who have not been diagnosed with cancer (Getachew-Smith et al., 2020); young previvors are defined in the literature as those who discovered their increased cancer risk before the age of 40 (Forrest et al., 2021; Glassey et al., 2016; Salibian et al., 2020).

Selecting a risk management strategy is important for young previvors, as an estimated 4% of breast cancer diagnoses, often linked to hereditary factors, occur in women under 40 years of age (Albright et al., 2019; American Cancer Society, 2024; Kumerow et al., 2022). Currently, the following risk management strategies are available: increased surveillance, chemoprevention, preventive salpingo-oophorectomy (typically for BRCA mutations) (National Comprehensive Cancer Network [NCCN], 2024), and bilateral risk-reducing mastectomy (BRRM). Increased surveillance requires routine screening through imaging modalities such as MRI, mammography, or ultrasound to detect breast abnormalities. This method offers early detection of breast cancer, but no risk-reduction. Chemoprevention requires taking daily medication to decrease breast cancer risk by approximately 50% (NCCN, 2024). Salpingo-oophorectomy requires surgical removal of the ovaries and fallopian tubes to reduce breast cancer risk by 50% (typically in BRCA carriers) (Finch et al., 2014; Narod, 2023). In BRRM, surgery is performed to remove healthy breast tissue and is typically followed by some form of reconstruction to the chest wall; this option represents the most effective risk management strategy to previvors, lowering lifetime breast cancer risk 90% to 95% (Rebbeck et al., 2004).

Breast removal can significantly impact a young previvor’s physical appearance. Body image, defined as individual perceptions, thoughts, and feelings about the physical self (Cash, 2004), has been negatively affected by mastectomy in young breast cancer survivors (Iddrisu et al., 2020; Rosenberg et al., 2020) and in previvors of all ages following BRRM (Bai et al., 2019; Long et al., 2017; Razdan et al., 2016). While prior studies have explored the decision-making process for BRRM in young previvors (Hamilton et al., 2009; Isselhard et al., 2023; Leonarczyk & Mawn, 2015), a review of the literature revealed a dearth of research examining the impact of BRRM and its effects on body image in this population (Torrisi, 2021). Limited research exists on how young previvors living in the United States perceive BRRM and what impact this risk management strategy might have on body image.

Understanding why healthy women elect to undergo mastectomy at a young age informs meaningful and supportive nursing care for selection of this risk management strategy, it also benefits young previvors seeking to most effectively decrease their lifetime breast cancer risk. The purpose of this study was to explore the lived experience of young previvors with an elevated lifetime breast cancer risk in the initial 12 months following bilateral risk-reducing mastectomy undertaken to lower lifetime breast cancer risk and examine the impact of BRRM on body image.

Methods

Study Design

Two qualitative methods were selected to provide foundational understanding of BRRM and body image within the first 12 months following this risk-reducing surgery, both were selected to gain knowledge directly from the young previvors living this experience. A qualitative design with a descriptive phenomenology method was employed to ensure a deep understanding of uniqueness of each participant’s experience, and the experience common to all participants (Fu, 2005; Fu et al., 2008). The assumptions grounded in phenomenological philosophy are: (a) reality is experiential (Husserl, 1962; Porter, 1998), and (b) experience is intentional (Fu, 2005; Fu et al., 2008; Husserl, 1962; Porter, 1998). Accordingly, this study is based on the assumption that the reality of BRRM emerges through the lived experience of a previvor as she engages with and responds to her perceived risk of breast cancer, and that her decision to undergo BRRM is shaped by her conscious and intentional perceptions of that risk.

Conventional knowledge regarding BRRM was set aside, or bracketed, during data collection and data analysis. The conventional knowledge about BRRM in the study were key ideas conveyed repeatedly in scientific and professional literature and consisted of: (a) BRRM is life-saving; (b) BRRM causes body image problems; and (c) breast cancer will occur in all previvors. Bracketing occurred through self-reflective journaling prior to each interview to identify and set aside personal biases and assumptions surrounding identified key ideas. Bracketing also occurred during interviews, by maintaining neutrality and practicing active listening, and during analysis, with researchers actively setting aside their own pre-conceived biases and assumptions about the phenomenon of interest, allowing them to focus on the participants lived experiences from the data.

Photo-elicitation was employed to explore body image following BRRM. This method uses visual imagery to prompt discussion and generate rich narrative data during interviews (Baker & Wang, 2006; Church & Quilter, 2021; Glaw et al., 2017). The use of participant-submitted photos has been found to allow individuals to process their identities and bodies not only through verbal accounts but also through visual means (Gauntlett & Holzwarth, 2006). Photo-elicitation has been used to explore complex social processes, such as body image, allowing individuals to make sense of their world (Rose, 2007). For this study, photo elicitation guided conversations using participant-submitted photographs, to detail body image following BRRM.

Participants were asked to capture and submit five images depicting body image after BRRM. Following this, they completed one semi-structured interview via videoconferencing. Participant privacy was upheld through the use of secure email and Zoom platforms. Narrative data served as the primary data source, augmented by the participant-submitted visual data.

Ethical Considerations

This study was approved by the University of Missouri-Columbia Institutional Review Board (Approval No. 2097096) on 7/06/2023. All participants provided oral informed consent prior to enrollment in study and ahead of the semi-structured interview and image submission. Written informed consent was obtained from participants for the publication of images included in this article.

Study Sample and Setting

For this study, young previvors were defined as women aged ≥18 to <40 years at the time of BRRM. This age range was selected to explore the experiences of BRRM and body image in young women during a life stage where family planning, the inability to breastfeed, the establishment of a career and work history, and the formation of romantic partnerships are being considered (Dean & Fisher, 2019; Hoskins et al., 2008; Humar et al., 2024; Scheck, 2005); these experiences may differ from previvors over the age of 40. A purposive sampling method (Fu, 2005; Fu et al., 2008; Porter, 1999) was used to enroll women who shared explicit and predefined traits of previvors. Participants were women who met the following inclusion criteria: (1) female at birth; (2) self-reported presence of a BRCA1, BRCA2, CHEK2, PALB2, and/or ATM pathogenic variant; (3) no personal history of breast cancer; (4) aged ≥18 to <40 years at the time of BRRM; (5) BRRM 12 months prior to study enrollment; (6) videoconferencing ability; and (7) U.S. residency, with fluency in written and spoken English.

Participants were recruited from three previvor Facebooks groups from July to December 2023, after study IRB approval was received. Facebook group membership totaled over 43,000, with members, including previvors, effected by breast cancer or breast cancer risk. An anticipated sample of 9 to 12 participants was based on similar studies (Patiyal et al., 2023; Snöbohm et al., 2010). After interview 11, strong patterns in the data were evident; however, two additional interviews were conducted to assess whether further data collection would yield any new information. A total of 13 participants completed the study.

Data Collection

A semi-structured interview guide was developed to explore the lived experience of young previvors and BRRM, including its impact on daily life, body image, and health following surgery. Interviews ranged from 40 to 118 min. To facilitate image capture, participants received the definition of body image as “A person’s attitudes, thoughts, beliefs, and behaviors regarding their physical appearance” (Cash, 2004), along with instructions that there were no “right” or “wrong” images; the experience was unique to each young previvor. To protect anonymity, all participants were required to de-identify themselves and their surroundings prior to submitting images.

During interviews, data were initially collected using the semi-structured interview guide surrounding the lived experience of BRRM and body image. Participants were then shown their five submitted images and asked to describe each, explain its selection, and discuss what it conveyed about body image and BRRM. Questions asked about images were structured to elicit additional meaningful information about body image post-BRRM that might not emerge from the semi-structured interview alone.

Data Analysis

Demographic data were analyzed using descriptive statistics. A descriptive data analysis method was used to analyze interview data based on intuitive reflections and strategies of continuously “comparing and distinguishing, collecting and counting, presupposing and inferring” (Husserl, 1962, p. 93). We modified the 7-step data analysis procedure developed by Fu et al. (2008), which has successfully been used in prior studies (Dory et al., 2017; Fu & Rosedale, 2009; Jones et al., 2023) to examine narrative data, compare codes, challenge interpretations, and develop themes inductively; the visual data were analyzed and incorporated following theme development. The steps were: (1) transcripts were read several times to gain a broad understanding of the text; (2) team members (CT, JA, MF) met to identify key quotations and discuss key codes related to research aims; (3) coded quotations were combined into one file where the accuracy of the code and quotations were confirmed among team members; (4) team members (CT, JA, MF) analyzed the quotation files to identify major themes by grouping key coded quotations together by research aims; (5) themes were reviewed by all team members, all team members engaged in active dialogue to resolve any discrepancies; (CT & MT) reviewed the visual and narrative data gathered from image discussion alongside developed major themes, images were selected from quotes within major themes that displayed and elaborated body image following BRRM; (6) transcripts and images were reviewed by all team members to validate the structure of developed themes alongside interview data; and (7) all team members conducted discussions until consensus was achieved about each aspect of data analysis. In this way, essential themes were identified to illuminate the lived experience of BRRM and body image among young previvors.

Rigor

The criteria of credibility, transferability, dependability, and confirmability were used to assess the trustworthiness of this qualitative study (Lincoln & Guba, 1985). Credibility of the study was warranted through prolonged engagement with participants, reflective journals, field notes, visual images, and verbatim transcripts. Credibility of the study was supported through checking data accuracy through listening to the recording of each interview while checking against the transcripts. Dependability was enhanced by the consistent emergence of similar data across participants and the use of an iterative data analysis process, ensuring a thorough and systematic examination of the findings. Confirmability of the study was achieved among team members through consensus of discrepancies in data analysis. Rich and detailed descriptions of the experience from participants supported transferability of the study. Bracketing also served to support trustworthiness by the setting aside personal bias and conventional knowledge during data collection and data analysis.

Results

Participant Characteristics

Thirteen young previvors completed the study (see Table 1), all self-reported undergoing genetic testing and learning of the presence of a pathogenic variant prior to BRRM. The mean age of learning pathogenic variant status was 28.84 years (range = 24–36 years). Twelve young previvors carried one pathogenic variant, and one young previvor carried two. Participants identified as White and resided in ten states across the United States. A variety of reconstruction methods were selected following BRRM, including aesthetic flat closure (AFC) in three cases. In this type of reconstruction, a flat and smooth chest wall is prioritized rather than breast mound creation. Seven young previvors underwent implant-based reconstruction and one selected autologous. Two participants had expanders in place, with plans for implant-based reconstruction. Mean age at BRRM was 33.23 years (range = 29–39 years). Six participants elected to remove their nipples at the time of BRRM, while seven women opted to retain their nipples.

Table 1.

Participant Demographic Information.

Name	Family history of cancer	Pathogenic variant type	Age at pathogenic variant discovery	Reported lifetime breast cancer risk (%)	Age at BRRM	Type of BRRM	Type of reconstruction
Rae	Yes, breast	BRCA2	24	90	30	Non-nipple-sparing	Expanders, UTM implants
Olivia	Yes, breast	BRCA1	24	63	32	Non-nipple-sparing	Expanders, UTM implants
Nora	Yes, breast	BRCA2	31	82	39	Nipple-sparing	Expanders, OTM implants
Alice	Yes, breast	BRCA2	30	80	32	Nipple-sparing	Expanders, OTM implants
Sadie	Yes, breast	CHEK2	29	48	31	Nipple-sparing	DTI, OTM implants
August	Yes, melanoma, prostate, lung	BRCA2	36	45–80	37	Nipple-sparing	Expanders, OTM implants
Evalyn	Yes, breast	BRCA2	27	60	33	Non-nipple-sparing	DTI, OTM implants
Joan	Yes, prostate, brain	PALB2	30	70	31	Nipple-sparing	DTI, OTM implants
Blythe	Yes, ovarian	BRCA2	26	>60	35	Nipple-sparing	Expanders, OTM implants
Mira	Yes, breast	ATM	35	60–70	36	Nipple-sparing	Expanders, DIEP flap
Emma	Yes, breast	BRCA1	25	90	32	Non-nipple-sparing	AFC
Dee	Yes, colon, colorectal	ATM and PALB2	30	>60	35	Non-nipple-sparing	AFC
Harper	Yes, breast	BRCA1	28	79	29	Non-nipple-sparing	AFC

Note. Names represent pseudonyms. AFC = aesthetic flat closure; OTM = over-the-muscle; UTM = under-the-muscle; DTI = direct-to-implant.

Themes

Before and after BRRM, young previvors recognized the need to preserve both their mental and physical health as they weighed the effects of undergoing a risk-reducing surgery to remove a healthy body part. It is within the context of breast removal for cancer risk reduction in healthy young previvors that three themes capture the lived experience of BRRM and the impact of breast loss on body image during the initial 12 postoperative months: shifting risk management strategies to proactively promote health, recognizing the importance of adaptation and acceptance to a changed body, and unexpected outcomes despite preparation.

Shifting Risk Management Strategies to Proactively Promote Health

Following the discovery of a pathogenic variant, young previvors worked to make sense of integrating an elevated breast cancer risk into everyday life. As an initial risk management strategy all participants used increased surveillance, most for years (see Table 1). Participants underwent breast examinations, mammograms, and MRIs before shifting toward BRRM. Participants voiced motherhood, faster healing at a young age, and cancer worry as drivers to shift to BRRM as a management strategy which promoted health through greater cancer risk reduction. Following her second abnormal imaging experience using active surveillance, Mira described the worry that caused her to shift:

It was kind of okay for a few years. Then again, [another] abnormality. And it’s different than where the [previous] marker was. And I just, like, lost it. And I was like, “I’m so sick of having these nervous breakdowns every single time that I have to have a mammogram done.” (Mira, DIEP flap, ATM)

This decision to shift toward a different risk management strategy was not made lightly or without extensive information-gathering; participants considered the importance of breast cancer risk reduction against the potential impact BRRM could have on their physical appearance. Participants listed clinicians, social media, and other previvors as beneficial and influential sources of information. Alice described how she gathered information as she considered BRRM, while Sadie appreciated receiving realistic expectations on cosmetic outcomes:

Yeah, they were super thorough. They were really helpful. I probably had, I don’t know, like, four appointments with them before I even actually did the surgery. Just they were very willing to talk through all the options. They were willing to answer all of my questions, which I had a billion of them. (Alice, nipple-sparing BRRM, over-the-muscle expanders in place, BRCA2)

I expected to have rippling. My, my doctor was very upfront, like, ‘Your body type’, and all this and whatever. . .And ‘you may not even have enough fat to do a lot of fat grafting’, and all this. And I said, “let’s go ahead,” but had I not known to expect that, I wouldn’t have been able to factor that into my cost-benefit analysis, and I might have been more disappointed or more taken by surprise, or whatever. (Sadie, direct-to-implant nipple sparing BRRM, over the muscle implant, CHEK2)

Information-gathering supported the shift toward BRRM, with twelve of the participants voicing the health benefits of risk reduction. Sadie spoke of health in terms of living without the looming threat of breast cancer, “When I look in the mirror, I want to see a healthy body that is able to live the kinda life that I want,” while Rae elaborated:

I felt that it would just benefit me more to just go ahead and do the bilateral mastectomy instead of just sitting around kind of waiting on the cancer to get me, especially with having such close– two close family members get breast cancer at such a young age. I felt more like a ticking time bomb. (Rae, non-nipple-sparing BRRM, under-the-muscle implant placement, BRCA2)

Viewing BRRM as a health-promoting activity to reduce breast cancer risk helped maintain a positive body image among participants. Many young previvors described possessing an inner strength that allowed them to shift toward BRRM, despite the potential effect of breast removal on their physical appearance. Emma, who underwent AFC for a BRCA1 pathogenic variant, shared: “You can do hard things and move on. . .and just always trying to be proud, trying to be proud of what your body can do.” By focusing their resolve on shifting toward greater risk reduction, participants were able to feel more carefree in their bodies (see Figure 1). Sadie explained:

Like, there is a light at the end of the tunnel where you can just be you and just live your life and, um, and just enjoy your life and do that more fully at least in my case because I know that I’ve taken the step to reduce risk.” (Sadie, direct-to-implant nipple sparing BRRM, over the muscle implant, CHEK2)

Figure 1.

Decreased breast cancer risk brings freedom, bolsters body image after shifting toward BRRM.

Recognizing the Importance of Adaptation and Acceptance to a Changed Body

All participants acknowledged that BRRM would alter their physical appearance. Consequently, many young previvors considered reconstruction options that aligned with their desired cosmetic outcomes and personal preferences. They actively sought surgical teams who not only supported BRRM in young previvors but also listened to their specific reconstruction needs. Participants reported a variety of cosmetic outcomes that they believed would support acceptance of a changed body, such as hidden scars, a smooth chest wall, nipple preservation, or small incisions. For instance, Dee explained how breast mound omission via an AFC offered a cosmetic outcome that would support her body image (see Figure 2):

My biggest thing was that I just wanted a flat chest wall, with, like, no lumps or bumps in my armpits or anything like that. I was just hoping for that true, like, aesthetic flat closure. Um, and I was lucky and blessed enough to have gotten it. So, I think that has been a huge thing for me.” (Dee, AFC, ATM and PALB2)

Figure 2.

Selection of a preferred reconstruction method preserves body image in young previvors.

Even with the optimal surgical care team to provide the desired reconstruction outcome, participants acknowledged that body image adjustments following surgery would likely be needed. As a result, many young previvors prioritized their mental health. Mira explained:

It’s a big surgery. You have to think about how this affects you. . .I have a therapist I’ve been seeing for five years now. Um, I started increasing my therapy appointments with her because I am a very introspective person who thinks about these things. And I’m thinking big picture. (Mira, DIEP flap, ATM)

Following BRRM, participants worked to adjust to their new appearance. A shifting body image, with high and low points, was experienced by young previvors as acceptance and adaptation occurred following breast loss. No difference in processing the body was noted based on reconstruction type, or nipple loss versus preservation. Harper summarized body image fluctuations typical of young previvors in this study as they adapted to new bodies following BRRM and reconstruction:

Um, clothes are sometimes fantastic, and I feel like I look 10 times better in them. And sometimes I put on a dress, and I’m like, “This would be better with boobs, but I don’t have boobs. And this sucks.” And I cry. And some days, I go running without a shirt on and it’s liberating. (Harper, AFC, BRCA1)

Gratitude toward breast function, undergoing BRRM prior to a cancer diagnosis, and encouragement from support systems were found to encourage acceptance and preserve body image. Nora expressed gratitude for the opportunity to breastfeed prior to BRRM, while Evalyn’s acceptance of her body image post-BRRM was positively shaped by her mother’s support:

I was able to nurse my kids, and, like, I did have a nice relationship with [my breasts], and I feel really grateful ‘cause that could have gone a completely other direction, right? Like, it happened– this happened on. . .my terms, you know, and I think that that really gives– fills me with a lot of confidence. (Nora, nipple-sparing BRRM, over the muscle, BRCA2)

I mean, she had gone through more. She had cancer, right? So, she really kind of instilled just this value of. . .women are strong and powerful. And, like, this is something that we can share together. It just tells me that, you know, if you have people in your life who are giving you positive messages about your decisions about your body, then that really shapes, or can shape, the way you think about your body. (Evalyn, direct-to-implant, non-nipple-sparing BRRM, BRCA2)

These efforts to facilitate adaptation and acceptance allowed participants to tolerate less desirable cosmetic outcomes, such as rippling. Eleven participants reported achieving a positive body image, despite periods of body image decline that waxed and waned as adaptation and acceptance occurred. The support of friends, partners, and children was reported to maintain body image in seven participants. Processing the body following BRRM is depicted by an image of flowers. Olivia explained (see Figure 3):

I felt like seeing a flower as it first buds kind of represented my body after surgery. It’s new. It’s fresh. Um, but being able to see the full flower that’s fully bloomed, you know you can reach that full potential.” (Olivia, non-nipple-sparing BRRM, under-the-muscle expanders in place, BRCA1)

Figure 3.

From bud to blossom, acceptance and adaptation promote body image following BRRM.

Unexpected Outcomes Despite Preparation

All previvors in the study researched BRRM and considered reconstruction options prior to surgery, 12 participants expressed feeling relief at reducing their breast cancer risk, and while no young previvor regretted undergoing BRRM, two participants experienced a prolonged and negative impact from surgery. Unexpected challenges led to a sustained decline in both physical and mental health, which negatively impacted body image. For Blythe, as a young and healthy person before BRRM, the discovery that her body could not be relied upon for healing following complications arising from surgery was devastating:

And at this moment, I just stopped trusting my body. That it could heal. That things couldn’t go wrong. It was like that– the glass shattering, and, you know, you’re just like, “Oh my gosh. My body’s actually very fragile.” (Blythe, nipple-sparing BRRM, over-the-muscle implant, BRCA2)

Despite undergoing her selected reconstruction option, August’s body image declined as a result of breast loss. She found that replacing her healthy breasts with implants that looked and felt unnatural unexpectedly compromised her feminine identity. In discussing the photo she took (Figure 4) she explained that the image reflected her view of BRRM as a “barbaric” solution for an increased breast cancer risk which “chop[ped] off a part of ourselves that is, for all intents and purpose, like, perfectly healthy and properly functioning.” She notes the negative impact on her body image as a result:

I know that I’ve removed the risk from my body, the actual process of what I did to myself in order to achieve that has a negative connotation to me. Um, and that probably has a strong impact on how I feel about my, my body afterwards or, like, my relationship with my body. (August, nipple-sparing BRRM, over-the-muscle implants placement, BRCA2)

Figure 4.

Unexpected body image decline after breast loss: BRRM equated to the amputation of a healthy and functioning body part.

Participants also reported high levels of physical fitness preoperatively, listing running, rock-climbing, weight-lifting, hiking, and yoga as activities enjoyed prior to BRRM. The need to promptly resume physical activity was so vital to five participants that they selected reconstruction options they perceived to have faster healing. Seven participants reported a sharp decline in body image and mental well-being postoperatively when activity was reduced. This unexpected outcome occurred despite their understanding of mobility restriction. In this novel finding, regaining preoperative levels of mobility and physical activity was noted to improve body image following BRRM in ten participants. Dee explained how the return to baseline activity served to promote positive body image:

That was also part of the reason why I chose a flat closure as opposed to, um, the expanders and implants and things like that because it just minimized the amount of time I was away from doing the things that I love. Because those things help build my confidence. (Dee, AFC, ATM and PALB2)

Discussion

This study aimed to understand the lived experience of BRRM in young previvors and explore body image within the first 12 months following surgery. Participants largely believed that undergoing BRRM promoted better health than increased surveillance. The majority reported a positive body image after BRRM, due to their willingness to adapt and accept changes in physical appearance. Several factors facilitated adjustment to a new form after surgery, including careful selection of a surgical care team, and prioritizing mental health. However, despite their preparation, many young previvors in this study unexpectedly experienced body image decline due to activity limitations following surgery. These findings enhance our understanding of how young previvors experience BRRM and body image after making the decision to reduce breast cancer risk through surgical intervention.

BRRM was perceived to promote health and decrease cancer worry by proactively lowering lifetime breast cancer risk among young previvors in this study, this was especially important as young previvors considered becoming mothers or approached the age at which a family member was diagnosed with cancer. While these findings have been noted in the previvor literature as rationale for selecting a risk management strategy (Caiata-Zufferey et al., 2025; Henry et al., 2019; Isselhard et al., 2023; van Driel et al., 2014), this study provides additional insight on why previvors halt one risk management strategy in favor of another.

Accepting changes in physical appearance after BRRM supported or maintained a positive body image, regardless of reconstruction choice. Positive experiences with clinicians facilitated acceptance through information-sharing of cosmetic outcomes for reconstruction, validation of cancer-related worries, and support of BRRM at a young age. In a study of previvors of all ages, Puski et al. (2018) also note the value of clinician-provided information in decision-making for BRRM. This is apparent in young previvors in this study who chose aesthetic flat closure for their reconstruction. They weighed the pros and cons of breast mound omission against their feminine identity, but their body image did not decline, as it wasn’t tied to the presence of breasts. This view is supported by studies of breast cancer survivors; Tyner et al. (2023) reported a return to baseline body image in participants following a period of adjustment after aesthetic flat closure, and Paganini et al. (2024) who found that women electing to “go flat” did not need breasts to feel feminine. These findings support the consideration of the aesthetic flat closure during reconstruction discussions with young previvors.

Appreciating the body despite perceived flaws such as breast shape, scarring, and rippling supported acceptance of physical changes following BRRM. This finding aligns with literature on breast cancer survivors where unconditional body acceptance, despite perceived cosmetic imperfections post-mastectomy, has been observed (Marco-Salvador et al., 2024). Prioritizing mental health in the time surrounding BRRM was also found to support body image in this study, a finding noted in previvor literature for over a decade (Glassey et al., 2018; Patenaude et al., 2008).

The most common unexpected outcome experienced by young previvors in this study centered around decreased physical activity following BRRM and the decline in body image as a result. The novel finding of the association between positive body image and a return to baseline activity levels following surgery has not been noted in the literature in this population, however, exercise has been found to positively impact body image in breast cancer survivors (Chan & Chow, 2023). To prevent this aspect of body image decline, assessment of activity and a subsequent emphasis of its restriction during healing should be considered during discussion of BRRM as a risk management strategy.

Strengths and Limitations

This study has several strengths. First, it incorporates the experiences of young women possessing pathogenic variants other than BRCA1 and BRCA2. From this, we see that young previvors share the same goal to undergo BRRM to promote a longer and healthier life, regardless of pathogenic variant. Second, this study examines different options for reconstruction following BRRM; there is currently little understanding ascribed to the selection of aesthetic flat closure in the previvor literature. This study found that aesthetic flat closure for reconstruction can provide a positive impact on body image following BRRM in young previvors. Limitations are centered on generalizability. All participants identified as White, thus the study cannot generalize study findings to young previvors of color. Furthermore, the sample size was limited to women less than 40 years of age, limiting application of findings to older previvors.

Implications for Nursing Practice, Education, and Research

Nurses play a crucial role in supporting young previvors, recognizing the importance this population places on information-gathering. Positioned in clinical and community settings, nurses are ideal for educating this population on valued aspects of previvorship such as risk-reduction, physical movement, body acceptance, and the advocation for shared decision-making when discussing reconstruction outcomes and expectations. By prioritizing health promotion, providing information, and supporting risk management decisions, nurses can help maintain or promote a positive body image for young previvors considering BRRM as a risk management strategy.

Future research is needed to examine other aspects of previvorship following selection of a risk-reduction strategy to lower lifetime breast cancer risk. This includes understanding uncertainty and coping strategies employed by young previvors to promote positive psychosocial outcomes, such as body image, in the years after BRRM or how the decision to undergo BRRM at a young age affects a previvor’s long-term quality of life. This research will aid not only previvors who have chosen BRRM to reduce lifetime breast cancer risk, but also young women who have discovered a pathogenic variant and are currently deciding on a management strategy.

Conclusion

Young previvors are willing to take action to decrease lifetime breast cancer risk. They represent a unique population in healthcare: healthy but motivated to undertake a risk-reducing surgery with the potential to alter physical appearance in order to preserve health. Nurses caring for young previvors are well-positioned to positively influence body image after BRRM through detailed education about post-operative outcomes, supporting the young previvor’s risk management strategy, prioritizing mental health before and after BRRM, and advocating for the return of physical activity when safely able to do so.

Footnotes

ORCID iD

Christa Torrisi

Ethical Considerations

This study was approved by the University of Missouri Institutional Review Board (approval no. 2097096) on 7/06/2023. All participants provided oral informed consent prior to enrollment in the study. Written informed consent was obtained from participants for the publication of any potentially identifiable images or data included in this article.

Funding

The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: Stipend support for Christa Torrisi was provided by the Sinclair PhD Student Fellowship, University of Missouri Sinclair School of Nursing and Sigma Theta Tau International Honor Society of Nursing, Alpha Iota chapter

Declaration of Conflicting Interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Author Biographies

Christa Torrisi, PhD, RN, is a postdoctoral fellow at Indiana University School of Nursing, Indianapolis, IN, USA. Her research focuses on improving psychosocial outcomes in previvors managing an increased lifetime cancer risk.

Mei R. Fu, PhD, RN, FAAN, is the Associate Dean for Research and The Dorothy and Dale Thompson Missouri Endowed Professor at the University of Missouri, Kansas City School of Nursing at Health Sciences, Kansas City, MO, USA. Her research focuses on lymphedema, pain, cancer, chronic illnesses, and social determinants of health.

Michelle Teti, DrPH, MPH, is the Associate Dean of the Honors College and a Professor in the Department of Public Health Research, at the University of Missouri, Columbia, MO, USA. Her research focuses on improving the lives of people with HIV and other stigmatized illnesses by integrating their input into policies and programs to serve them.

Jane M. Armer, PhD, RN, FAAN, is a Professor Emerita, Director, Nursing Research, Ellis Fischel Cancer Center, and Director, American Lymphedema Framework Project at the University of Missouri, Columbia, MO, USA. Her program of research focuses on breast cancer survivorship and lymphedema self-management.

References

Albright

F. S.

Kohlmann

Neumayer

Buys

S. S.

Matsen

C. B.

Kaphingst

K. A.

Cannon-Albright

L. A.

(2019). Population-based relative risks for specific family history constellations of breast cancer. Cancer Causes & Control, 30(6), 581–590. https://doi.org/10.1007/s10552-019-01171-5

American Cancer Society. (2021). Breast cancer risk factors you cannot change. Retrieved July 15, 2021, from https://www.cancer.org/content/dam/CRC/PDF/Public/8578.00.pdf

American Cancer Society. (2024). Breast cancer facts and figures: 2024 and 2025. Retrieved on January 2, 2025, from https://www.cancer.org/research/cancer-facts-statistics/breast-cancer-facts-figures.html

Bai

Arver

Johansson

Sandelin

Wickman

Brandberg

(2019). Body image problems in women with and without breast cancer 6–20 years after bilateral risk-reducing surgery—A prospective follow-up study. Breast (Edinburgh, Scotland), 44, 120–127. https://doi.org/10.1016/j.breast.2019.01.013

Baker

T. A.

Wang

C. C.

(2006). Photovoice: Use of a participatory action research method to explore the chronic pain experience in older adults. Qualitative Health Research, 16(10), 1405–1413. https://doi.org/10.1177/1049732306294118

Caiata-Zufferey

Schweighoffer

Aceti

Pedrazzani

Katapodi

M. C.

Aissaoui

Alemu

Aykut

Brugnoletti

Bunger

Bürki

Chappuis

P. O.

Fluri

Graffeo

Heinimann

Machen

Monnerat

Pagani

Rabaglio

. . . Zürrer-Härdi

(2025). Navigating complex choices through legitimation: Narrative strategies in risk-reduction mastectomy decision-making among unaffected women with genetic risk for breast cancer in Switzerland. Qualitative Research in Health, 7, 100522. https://doi.org/10.1016/j.ssmqr.2024.100522.

Cash

T. F.

(2004). Body image: Past, present, and future. Body Image, 1(1), 1–5 https://doi.org/10.1016/S1740-1445(03)00011-1

Chan

N. C.

Chow

K. M.

(2023). A critical review: Effects of exercise and psychosocial interventions on the body image of breast cancer survivors. Nursing Open, 10(4), 1954–1965. https://doi.org/10.1002/nop2.1507

Church

Quilter

(2021). Consideration of methodological issues when using photo-elicitation in qualitative research. Nurse Researcher, 29(2), 25–32. https://doi.org/10.7748/nr.2021.e1729

10.

Couch

F. J.

Nathanson

K. L.

Offit

(2014). Two decades after BRCA: Setting paradigms in personalized cancer care and prevention. Science (New York, N.Y.), 343(6178), 1466–1470. https://doi.org/10.1126/science.1251827

11.

Dean

Fisher

C. L.

(2019). Uncertainty and previvors’ cancer risk management: Understanding the decision-making process. Journal of Applied Communication Research, 47(4), 460–483. https://doi.org/10.1080/00909882.2019.1657236

12.

Dory

Qiu

C. M.

M. R.

Ryan

C. E.

(2017). A phenomenological understanding of residents’ emotional distress of living in an environmental justice community. International Journal of Qualitative Studies on Health and Well-being, 12(1), 1269450. https://doi.org/10.1080/17482631.2016.1269450

13.

Finch

A. P.

Lubinski

Møller

Singer

C. F.

Karlan

Senter

Rosen

Maehle

Ghadirian

Cybulski

Huzarski

Eisen

Foulkes

W. D.

Kim-Sing

Ainsworth

Tung

Lynch

H. T.

Neuhausen

Metcalfe

K. A.

. . . Narod

S. A.

(2014). Impact of oophorectomy on cancer incidence and mortality in women with a BRCA1 or BRCA2 mutation. Journal of Clinical Oncology, 32(15), 1547–1553. https://doi.org/10.1200/JCO.2013.53.2820

14.

Forrest

L. E.

Forbes Shepherd

Young

M. A.

Keogh

L. A.

James

P. A.

(2021). Finding the five-year window: A qualitative study examining young women’s decision-making and experience of using tamoxifen to reduce BRCA1/2 breast cancer risk. Psycho-Oncology, 30(2), 159–166. https://doi.org/10.1002/pon.5556

15.

M. R.

(2005). Breast cancer survivors’ intentions of managing lymphedema. Cancer Nursing, 28(6), 446–459. https://doi.org/10.1097/00002820-200511000-00007

16.

M. R.

Rosedale

(2009). Breast cancer survivors’ experiences of lymphedema-related symptoms. Journal of Pain and Symptom Management, 38(6), 849–859. https://doi.org/10.1016/j.jpainsymman.2009.04.030

17.

M. R.

Liu

Haber

(2008). ‘Making the best of it’: Chinese women’s experiences of adjusting to breast cancer diagnosis and treatment. Journal of Advanced Nursing, 63(2), 155–165. https://doi.org/10.1111/j.1365-2648.2008.04647.x

18.

Gauntlett

Holzwarth

(2006). Creative and visual methods for exploring identities. Visual Studies, 21(1), 82–91. https://doi.org/10.1080/14725860600613261

19.

Getachew-Smith

Ross

A. A.

Scherr

C. L.

Dean

Clements

M. L.

(2020). Previving: How unaffected women with a BRCA1/2 mutation navigate Previvor identity. Health Communication, 35(10), 1256–1265. https://doi.org/10.1080/10410236.2019.1625002

20.

Glassey

Hardcastle

S. J.

O’Connor

Ives

, kConFab Investigators, & Saunders

(2018). Perceived influence of psychological consultation on psychological well-being, body image, and intimacy following bilateral prophylactic mastectomy: A qualitative analysis. Psycho-oncology, 27(2), 633–639. https://doi.org/10.1002/pon.4558

21.

Glassey

Ives

Saunders

Musiello

(2016). Decision making, psychological wellbeing and psychosocial outcomes for high risk women who choose to undergo bilateral prophylactic mastectomy—A review of the literature. Breast (Edinburgh, Scotland), 28, 130–135. https://doi.org/10.1016/j.breast.2016.05.012

22.

Glaw

Inder

Kable

Hazelton

(2017). Visual methodologies in qualitative research: Autophotography and photo-elicitation applied to mental health research. International Journal of Qualitative Methods, 16(1), 1–8. https://doi.org/10.1177/1609406917748215

23.

Hamilton

Williams

J. K.

Bowers

B. J.

Calzone

(2009). Life trajectories, genetic testing, and risk reduction decisions in 18–39 year old women at risk for hereditary breast and ovarian cancer. Journal of Genetic Counseling, 18(2), 147–159. https://doi.org/10.1007/s10897-008-9200-1

24.

Henry

D. A.

Lee

M. C.

Almanza

Ahmed

K. A.

Sun

Boulware

D. C.

Laronga

(2019). Trends in use of bilateral prophylactic mastectomy vs high-risk surveillance in unaffected carriers of inherited breast cancer syndromes in the Inherited Cancer Registry (ICARE). Breast Cancer Research and Treatment, 174(1), 39–45. https://doi.org/10.1007/s10549-018-5057-7

25.

Hoskins

L. M.

Roy

Peters

J. A.

Loud

J. T.

Greene

M. H.

(2008). Disclosure of positive BRCA1/2-mutation status in young couples: The journey from uncertainty to bonding through partner support. Families, Systems & Health, 26(3), 296–316. https://doi.org/10.1037/a0012914

26.

Humar

Balogun

Douglas

Glenney

Kass

N. M.

Moroni

E. A.

Mai

P. L.

Diego

De La Cruz

(2024). Factors influencing prophylactic surgical intervention in women with genetic predisposition for breast cancer. Journal of Surgical Oncology, 130(5), 990–996. https://doi.org/10.1002/jso.27817

27.

Husserl

(1962). Ideas: General introduction to pure phenomenology (Trans. ed.; 1913). Macmillan.

28.

Iddrisu

Aziato

Dedey

(2020). Psychological and physical effects of breast cancer diagnosis and treatment on young Ghanaian women: A qualitative study. BMC Psychiatry, 20(1), 353. https://doi.org/10.1186/s12888-020-02760-4

29.

Isselhard

Tüchler

Dick

Scherer

Aue

Schmutzler

R. K.

Rhiem

(2023). Psychological distress and decision-making factors for prophylactic bilateral mastectomy in cancer-unaffected BRCA1/2 pathogenic variant carriers. Psycho-oncology, 32(4), 640–648. https://doi.org/10.1002/pon.6111

30.

James

J. E.

Riddle

Caruncho

Koenig

B. A.

Joseph

(2022). A qualitative study of unaffected ATM and CHEK2 carriers: How participants make meaning of ‘moderate risk’ genetic results in a population breast cancer screening trial. Journal of Genetic Counseling, 31(6), 1421–1433. https://doi.org/10.1002/jgc4.1617

31.

Jones

K. F.

M. R.

Wood Magee

Merlin

Check

D. K.

McTernan

Bernacki

Bulls

H. W.

(2023). “It is so easy for them to dismiss”: A phenomenological study of cancer survivors with chronic cancer-related pain. Journal of Palliative Medicine, 26(8), 1090–1099. https://doi.org/10.1089/jpm.2022.0538

32.

Kumerow

M. T.

Rodriguez

J. L.

Dai

Kolor

Rotunno

Peipins

L. A.

(2022). Prevalence of Americans reporting a family history of cancer indicative of increased cancer risk: Estimates from the 2015 National Health Interview Survey. Preventive Medicine, 159, 107062. https://doi.org/10.1016/j.ypmed.2022.107062

33.

Leonarczyk

T. J.

Mawn

B. E.

(2015). Cancer risk management decision making for BRCA+ women. Western Journal of Nursing Research, 37(1), 66–84. https://doi.org/10.1177/0193945913519870

34.

Lincoln

Y. S.

Guba

E. G.

(1985). Naturalistic inquiry. Sage.

35.

Long

Evans

T. G.

Bailey

Lewis

M. H.

Gower-Thomas

Murray

(2017). Uptake of risk-reducing surgery in BRCA gene carriers in Wales, UK. The Breast Journal, 4(24). 580–585. https://doi.org/10.1111/tbj.12978

36.

Marco-Salvador

J. H.

Castejón Raven

Grau Sevilla

M. D.

Ripoll Orts

(2024). Is body appreciation a moderator of women’s satisfaction and distress with the body changes that occur after breast cancer surgery? A one-year longitudinal study. The Spanish Journal of Psychology, 27, e12. https://doi.org/10.1017/SJP.2024.13

37.

Narod

S. A.

(2023). Choices for cancer prevention for women with a BRCA1 mutation? A personal view. Hereditary Cancer in Clinical Practice, 21(1), 26. https://doi.org/10.1186/s13053-023-00271-3

38.

National Comprehensive Cancer Network (NCCN). (2024). NCCN clinical practice guidelines in oncology: Breast cancer risk reduction. Retrieved March 18, 2024, from https://www.nccn.org/professionals/physician_gls/pdf/breast_risk.pdf

39.

Paganini

Westesson

L. M.

Hansson

Karlsson

S. A.

(2024). Women’s decision process when actively choosing to ‘go flat’ after breast cancer: A constructivist grounded theory study. BMC Women’s Health, 24(1), 178. https://doi.org/10.1186/s12905-024-03015-0

40.

Patenaude

A. F.

Orozco

Kaelin

C. M.

Gadd

Matory

Mayzel

Roche

C. A.

Smith

B. L.

Farkas

Garber

J. E.

(2008). Support needs and acceptability of psychological and peer consultation: Attitudes of 108 women who had undergone or were considering prophylactic mastectomy. Psycho-oncology, 17(8), 831–843. https://doi.org/10.1002/pon.1279

41.

Patiyal

Pandey

Kumar

(2023). Lived experiences of post-mastectomy women: A qualitative study of Western Rajasthan. Journal of Education and Health Promotion, 12, 275. https://doi.org/10.4103/jehp.jehp_1591_22

42.

Porter

E. J.

(1998). On “being inspired” by Husserl’s phenomenology: Reflections on Omery’s exposition of phenomenology as a method of nursing research. Advances in Nursing Science, 21(1), 16–28. https://doi.org/10.1097/00012272-199809000-00003

43.

Porter

E. J.

(1999). Defining the eligible, accessible population for a phenomenological study. Western Journal of Nursing Research, 21(6), 796–804. https://doi.org/10.1177/01939459922044207

44.

Puski

Hovick

Senter

Toland

A. E.

(2018). Involvement and influence of healthcare providers, family members, and other mutation carriers in the cancer risk management decision-making process of BRCA1 and BRCA2 mutation carriers. Journal of Genetic Counseling, 27(5), 1291–1301. https://doi.org/10.1007/s10897-018-0254-4

45.

Razdan

S. N.

Patel

Jewell

McCarthy

C. M.

(2016). Quality of life among patients after bilateral prophylactic mastectomy: A systematic review of patient-reported outcomes. Quality of Life Research, 25(6), 1409–1421. https://doi.org/10.1007/s11136-015-1181-6

46.

Rebbeck

T. R.

Friebel

Lynch

H. T.

Neuhausen

S. L.

van’t Veer

Garber

J. E.

Evans

G. R.

Narod

S. A.

Isaacs

Matloff

Daly

M. B.

Olopade

O. I.

Weber

B. L.

(2004). Bilateral prophylactic mastectomy reduces breast cancer risk in BRCA1 and BRCA2 mutation carriers: The PROSE Study Group. Journal of Clinical Oncology, 22(6), 1055–1062. https://doi.org/10.1200/JCO.2004.04.188

47.

Rose

(2007). Visual methodologies: An introduction to the interpretation of visual materials (2nd ed.). Sage.

48.

Rosenberg

S. M.

Dominici

L. S.

Gelber

Poorvu

P. D.

Ruddy

K. J.

Wong

J. S.

Tamimi

R. M.

Schapira

Come

Peppercorn

J. M.

Borges

V. F.

Partridge

A. H.

(2020). Association of breast cancer surgery with quality of life and psychosocial well-being in young breast cancer survivors. JAMA Surgery, 155(11), 1035–1042. https://doi.org/10.1001/jamasurg.2020.3325

49.

Salibian

A. A.

Bekisz

J. M.

Frey

J. D.

Miller

Choi

Karp

N. S.

(2020). Prophylactic nipple-sparing mastectomy in young previvors: Examining decision-making, reconstructive outcomes, and patient satisfaction in BRCA+ patients under 30. The Breast Journal, 26(5), 971–975. https://doi.org/10.1111/tbj.13692

50.

Scheck

(2005). Stages of psychosocial development according to Erik H. Erikson. GRIN Publishing.

51.

Shiovitz

Korde

L. A.

(2015). Genetics of breast cancer: A topic in evolution. Annals of Oncology, 26(7), 1291–1299. https://doi.org/10.1093/annonc/mdv022

52.

Snöbohm

Friedrichsen

Heiwe

(2010). Experiencing one’s body after a diagnosis of cancer—A phenomenological study of young adults. Psycho-Oncology, 19(8), 863–869. https://doi.org/10.1002/pon.1632

53.

Torrisi

(2021). Body image in BRCA-positive young women following bilateral risk-reducing mastectomy: A review of the literature. Frontiers in Psychology, 12, 778484. https://doi.org/10.3389/fpsyg.2021.778484

54.

Tyner

T. E.

Freysteinson

W. M.

Evans

S. C.

Woo

(2023). “My body, my choice”: A qualitative study of women’s mastectomy with flat closure experiences. Body Image, 46, 419–433. https://doi.org/10.1016/j.bodyim.2023.07.009

55.

van Driel

C. M.

Eltahir

de Vries

Jaspers

J. P.

Oosterwijk

J. C.

Mourits

M. J.

de Bock

G. H

. (2014). Risk-reducing mastectomy in BRCA1/2 mutation carriers: Factors influencing uptake and timing. Maturitas, 77(2), 180–184. https://doi.org/10.1016/j.maturitas.2013.10.017

56.

Vysotskaia

Kaseniit

K. E.

Bucheit

Ready

Price

Johansen Taber

(2020). Clinical utility of hereditary cancer panel testing: Impact of PALB2, ATM, CHEK2, NBN, BRIP1, RAD51C, and RAD51D results on patient management and adherence to provider recommendations. Cancer, 126(3), 549–558. https://doi.org/10.1002/cncr.32572