Patient Choice

Abstract

Breasts hold multifaceted significance in modern society, encompassing elements of motherhood, sexuality, and female identity. Diseases of the breast can thus result in uniquely complex decision making, particularly in the case of malignancy when mastectomy is indicated. Patient narratives reveal the profound impact of breast loss on self-perception, femininity, and community belonging. Although post-mastectomy breast reconstruction is empirically well supported, intersecting societal pressures and surgeon biases may challenge the autonomy of patients deciding on reconstructive options.

This article critically examines various factors involved in decision-making in breast reconstruction following mastectomy, highlighting the significance of patient autonomy. We excavate the historical, sociocultural, and economic influences that may have tilted the current balance in favor of breast reconstruction. While considering the benefits of this shift, we examine the potential existing biases that may influence patient decisions. We emphasize that autonomy is a central ethical consideration in navigating complex reconstructive decisions and promoting patient-centered care. We hope that our work will contribute to a broader discussion on the value placed on breasts and reinforce the agency breast cancer survivors have in decision making.

Breasts serve a vital, albeit narrow, physiological role for breastfeeding, yet have much greater social and relational significance across cultures. Breasts are tied to notions of femininity, pleasure, identity, and motherhood. This article considers the centrality of breasts to female expression and how this relationship transforms in the setting of malignancy. Patient-centric decision making for breast reconstruction must address the biopsychosocial significance of the patient's breasts, including the patient's preferences as well as other various contextual factors that may influence perceptions and patient choices (see Addendum on Sex and Gender).

Extirpation is a mainstay for curative treatment of breast cancer, which may include a risk-reducing mastectomy for patients with a high risk of breast cancer.¹ Patients undergoing such treatment often experience meaningful changes in their lived experience, and as a result, many understandably choose to undergo breast reconstruction. Breast reconstruction has provided profound benefits for many women, improving both comfort and quality of life after mastectomy. Fortunately, reconstructive breast surgery after cancer is now almost universally covered by health insurance in the United States. The Women's Health and Cancer Rights Act (WHCRA) of 1998 requires private health plans that cover mastectomy to also pay for breast reconstruction surgery.² As a result of advocacy efforts, advancing technology, and the WHCRA, rates of breast cancer reconstruction nearly doubled between 1998 and 2007—a major success story in women's health. Today, reconstruction is widely regarded as a routine component of breast cancer care,³ so much so that reconstruction following extirpation may seem like the default option in some settings. However, this treatment bias may decenter patient autonomy and patient-centered decision making. Although we do not suggest that patients are pressured to undergo reconstruction, we highlight how various contextual factors may influence perceptions and choices, underscoring the need for balanced, autonomy-centered counseling.

Although most studies report favorable satisfaction and psychosocial outcomes following postmastectomy breast reconstruction, the evidence still shows a range of experiences and results across different techniques.^4–7 Numerous studies have shown that individuals having undergone breast reconstruction report improved psychosocial health, sexual health, reduced pain, and satisfaction with the appearance of breasts.^8,9 However, a study published by Metcalfe et al. in 2012 found no significant difference between psychosocial functioning between individuals undergoing mastectomy alone and those undergoing mastectomy with reconstruction 1-year postoperatively. Outcomes assessed included quality of life, sexual functioning, cancer-related distress, body image, depression, and anxiety. Additionally, psychological distress was present across both groups.¹⁰ Another study published by Rowland et al. in 2000 also noted negative sexual health outcomes in patients with breast reconstruction compared to patients undergoing lumpectomy or mastectomy alone.¹¹ We reference this study not to imply that reconstruction adversely affects sexual outcomes but to demonstrate how heterogeneity among patient populations produces complex results that underscore the importance of autonomy-centered, individualized decision making. Our most modern techniques, including nipple-sparing mastectomy with reconstruction, have similarly mixed satisfaction outcomes as compared to older approaches in multiple studies.^12,13

These studies illustrate the numerous breast-related indicators of quality of life, including sexual, psychosocial, physical, pain-based, and appearance-based outcomes. Combined, these mediate each patient's individual experience of illness and her chosen reconstructive pathway. Assuming a default treatment pathway based on any individual quality-of-life indicator is difficult and is ethically unsound. What these studies do cohesively reflect, however, is the complex nature of post-extirpative decisions for breast cancer patients, particularly when it comes to self-image and lived experience. These dimensions encompass how individuals make sense of their identity and well-being after mastectomy, shaped by both personal values and social context.

Patients reporting on their experiences after mastectomy and reconstruction often focus on self-image, what their breasts mean for their femininity, and the significance on their gender expression. One patient stated that with one breast, she was only “half a woman,” whereas another patient, searching for a word to describe “her bodily absence,” was stunned by how integral her breast was to her sense of self. She reflected, “I should be able to live without breasts.”¹⁴ One mastectomy patient characterized herself as “crooked,” whereas yet another portrayed her breast as “collapsed.”¹⁵ Patients describe trying to hide the absence of a breast in ill-fitting clothing. Others wonder not only how they are being perceived by society following their loss of a breast, but how their children may be affected.¹⁵ Patients' choice of language after breast loss reveals their perception of a deviation from the norm, with one patient even questioning her humanity by likening herself to a “monster.”¹⁴ Separately from gender expression, women postmastectomy may also struggle with scar burden, absent nipples, chest concavity, and excess skin—changes that patients may see as a constant physical reminder of their cancer journey and lead them to pursue reconstruction. For these reasons, patients may consider breast reconstruction to overcome their loss of body image and restore a sense of wholeness. Studies have shown that reconstruction is associated with an improvement in psychological well-being for most women, including better body image and self-esteem, and reduced depression and anxiety.^16,17 Supporting autonomy—ensuring women understand their options and feel empowered to choose what fits their lives—plays a crucial role in achieving these positive outcomes.¹⁸

Audre Lorde, writer, civil rights activist, and breast cancer survivor, wrote extensively about the sociocultural impact of breast reconstruction. Particularly, she discussed how breast reconstruction could serve to quiet the community of breast cancer survivors. Lorde was diagnosed with breast cancer in 1977 and underwent a mastectomy shortly thereafter. Lorde did not pursue breast reconstruction and subsequently shared her experience with being unable to recognize fellow breast cancer survivors. She posited breast reconstruction as hindering her power to find community with other survivors. In fact, Lorde reports being actively discouraged from living with one breast. She describes being told by her doctors that her appearance would discourage other breast cancer survivors and was asked to never return to a doctor's office without wearing her prosthesis.¹⁹

An emphasis on feminine gender expression and the presentation of breasts may have profound implications for the psychology of women. For example, adherence to traditional gender expression is well documented among feminist writers as a vehicle of oppression against women. Aptly expressed by Karen Kendrick: “the cultural requirements for feminine beauty simultaneously objectify women, encourage them to internalize their objectification and devalue them for being preoccupied with external beauty.”²⁰ This tension is evident in the aforementioned patients, who were surprised and embarrassed by their preoccupation with their breasts as symbols of their womanhood and humanity.¹⁴ Kendrick writes that body image–focused programs for female cancer patients seek to erase signs of illness, treating such signs as challenges to patients' femininity and perpetuating a need to conceal them.

Although a patient's self-perception and internalized sense of femininity often serve as a primary motivator for choosing reconstruction or not, it is important to also consider the external forces that may shape her decision making. For example, the patient's surgeon has tremendous influence on patient decision making. Through consultation with reconstructive surgeons, misconceptions surrounding breast reconstruction may be dispelled, leading to a reduction in postoperative regret.^21–23 Patients who are completely uninterested in reconstruction may not even see a plastic surgeon—thus, a visit may indicate some degree of interest. Such encounters are a vital part of informed, patient-centered care. However, patients and surgeons should remain mindful of potential conflicts of interest. Reconstructive surgeons may, even unintentionally, carry a professional bias toward “recommending” reconstruction, particularly when it constitutes a major portion of their clinical practice.²⁴ In a survey of “Going Flat” communities, most women were satisfied with their decision to pursue mastectomy without reconstruction, but 20% of these patients felt that this decision was discouraged by their surgeons.²⁵ Recognizing the potential influence of the surgeon strengthens, rather than diminishes, the value of reconstructive counseling that promotes autonomous decision making.

Given that both breast reconstruction and revisional procedures are protected under the WHCRA and supported by strong advocacy, it is important to recognize that financial and structural incentives have the potential to shape patterns of care. Although reconstructive surgeons are always motivated by patient welfare, awareness of these systemic influences is essential for preserving transparency and reinforcing patient trust in decision-making. Roberts et al found that 88% of patients who underwent post-mastectomy breast reconstruction underwent reoperation within 5 years, and the median number of post-reconstructive procedures per patient was slightly greater than 2.²⁶ Given some variable evidence regarding the impact of post-mastectomy breast reconstruction on quality of life, treatment planning should reflect each patient's individual goals and values, aligning care decisions with what matters most to them.

A patient's access to care also plays a critical role in shaping reconstructive decisions. Several studies have found limited access to breast reconstruction in rural and near-metro areas as compared to urban centers.^27,28 Studies have noted significant socioeconomic disparities even within a similar region, with income observed to significantly impact reconstruction rates.^29,30 Moreover, patients in rural areas face barriers not only in accessing reconstructive services but also in awareness of their rights. A qualitative study of breast cancer survivors living in rural settings revealed that 82.1% of participants were unaware of their federally protected right to breast reconstruction under WHCRA.²⁸ At tertiary centers like Vanderbilt University Medical Center (VUMC), where patients have integrated reconstruction with mastectomy, reconstruction rates are relatively higher. Between 2017 and 2023, 71% of patients who received a mastectomy at VUMC chose to pursue breast reconstruction at the same institution. Ensuring equitable access to reconstructive options strengthens patient autonomy by allowing women to make choices based on their own values rather than limitations of geography or resources.

Marital status also emerges as a relevant factor in the decision-making process, with married or partnered patients more likely to pursue breast reconstruction following mastectomy.³¹ However, it remains difficult to discern whether this trend reflects the direct influence of a partner's preference or the presence of a broader support system. Although existing studies do not clarify the degree to which spouses actively shape the decision for reconstruction, the correlation between marital status and reconstruction rates raises important ethics questions about autonomy, relational dynamics, and social expectations that may support or constrain patient autonomy.

It is impossible to argue that sociocultural expectations, financial incentives, and access to care do not have some influence on patient autonomy in the context of breast reconstruction. Under these kinds of pressures, we consider whether patients have the opportunity to fully contemplate how their gender expression could take shape without breasts. Discussion of breast cancer care through the lens of feminist ethics must also include the acknowledgment that medical and surgical planning for breast cancer has been largely dominated by the efforts of male physicians since the early 1900s. Although there are an ever-growing number of female plastic surgeons in the field, they remain outnumbered 5:1 by male plastic surgeons.³² Within this context, we also consider that the cultural and historical associations between breasts and femininity may be embedded in outmoded gender narratives. We emphasize that this is not an individual critique of male surgeons, rather a reflection of the structural and cultural influences that have historically shaped surgical practice. Untangling these associations is essential to understanding and fostering respect for patient autonomy, allowing patients with breast cancer to make informed and freely chosen decisions about their surgical care rather than taking paths derived from the predominant biomedical or sociocultural narrative.³³

In conclusion, our intent is not to criticize breast reconstruction's prominent role in current breast cancer care, nor to discourage anyone from this path—we simply reiterate that the best path is the autonomous path. Towards that end, we call attention to the sociocultural and relational value of the breast, and question whether this emphasis integrates feminist ethics. Breast reconstruction meaningfully restores well-being and confidence for many survivors but simultaneously adds physical and emotional demands to the overall toll of a breast cancer diagnosis. For many patients, reconstructive efforts are worth this toll, but this is not the default path for everyone. Deconstructing the value placed on breasts can empower breast cancer survivors to disentangle societal expectations from their own experiences, supporting greater agency over their decisions and gender expression. Furthermore, the importance of an unbiased and patient-centric approach from surgeons is the gold standard for ethical practice. The gaze of the partner, the child, the immediate community, society-at-large, and the surgeon loom largely in the decision to receive or forgo reconstruction. We encourage patients to center their own gazes when it comes to making these choices. Surgeons' awareness of these dynamics can help ensure that patients center their own values and priorities, supporting autonomous decision making.

ADDENDUM

We recognize that gender is a social construct and have chosen to use “female” rather than “woman” for precise language describing the patient focus of this article. Although males also are affected by breast cancer, they account for less than 1% of cases and this article has a primarily feminist focus. For clarity of writing, we have chosen to use “her” for singular pronouns, although this may not be universally applicable to patients with female sex assigned at birth who do not identify with that pronoun.