Cultural Beliefs Regarding Breast Reconstruction in a Minority Group

Breast cancer is the most common type of non-skin malignancy and second leading cause of cancer-related deaths in American women. Earlier screening, increased awareness, and better treatments have led to a decreased death rate and more survivors who are eligible for breast reconstruction. Currently, there are 2 main techniques used for breast reconstruction: implant reconstruction and autologous or “flap” reconstruction, which includes deep inferior epigastric perforator, transverse rectus abdominus musculocutaneous, latissimus dorsi, and several other types of flaps. 

Race seems to be a predictor in receiving reconstruction surgery. A study that used data from the Surveillance, Epidemiology, and End Results program, which includes 11 national registries, found the odds of African American, Hispanic, and Asian women receiving reconstructive surgery were significantly less than those of White women.¹ Furthermore, African American and Hispanic women were more likely to show a preference for autologous tissue reconstruction, but White women made up the majority of patients who underwent autologous reconstruction.^2,3

There also seems to be a difference in the timing of reconstruction among groups. There are multiple benefits to immediate reconstruction at the time of mastectomy. The benefits include improved psychological well-being and potentially fewer surgeries. Despite those benefits, African American women have been shown to undergo immediate breast reconstruction at significantly lower rates compared with White, Hispanic, and Asian women.⁴

The main barriers contributing to the difference in breast reconstruction rates among Hispanic, African American, and White women have been shown to be language, financial issues, lack of surgeon consultation, and lack of information.⁵ Specifically, 1 study reported that Hispanics who were less accultured (defined as younger in age, uninsured, and without high school diplomas) were significantly less likely to report being given the option for breast reconstruction compared with other ethnic groups. These individuals identified knowledge and financial issues as key access barriers. Limited communication skills and provider understanding of the Hispanic culture were also cited as barriers to care and patient dissatisfaction.⁶

These past studies have identified several factors that contribute to the disparity in breast reconstruction observed between ethnic groups. However, there is a lack of ethnic-specific studies that examine the experience of single groups, specifically Hispanic women.  The purpose of this study was to identify internal ethnic and cultural themes that can affect a Hispanic patient’s choice to undergo or forego breast reconstruction surgery and the type of reconstruction chosen. Despite the increased use of surveys, particularly the Dillman survey,^6,7 there is a deficit in studies that have utilized interview-based focus groups. The Kansas City metropolitan area is the largest metropolitan area in Kansas with a population of nearly 2.2 million people. The Latino and Hispanic population comprises 10% of the total population, which makes it a relevant source for the purpose of this study.

This was a qualitative retrospective focus group study. Participants were Hispanic women from the Kansas City area who had undergone mastectomy for breast cancer followed by reconstruction; the primary investigator was their surgeon. In total, 8 patients participated in 2 separate focus groups, each with 4 participants. The groups were conducted in a semistructured fashion with a questionnaire as a guide for directing conversation (Figure 1). To avoid biases, the primary investigator did not take part in the focus group interviews. 

After conducting the interviews, the recordings were transcribed for thematic analysis. To aid in analysis, the participant answers were coded using code-based words or short phrases, such as “family” and “pain tolerance.” Following initial line-by-line coding of the interview transcripts, similar codes were then grouped together and sorted into such categories as “community norms” and “positive health encounters,” which were determined for each of the 3 blocks: surgery process, support system and community, and the medical journey.

After coding and line-by-line analyses were completed, relevant themes were identified for most of the interview questions. Due to the semi-structured nature of the group interviews, each participant did not have the opportunity to answer every question.

When asked if the participants had the chance to choose between a lumpectomy and mastectomy, half of the participants said they had no choice in the matter (Figure 2). Two of the women did have a choice between the 2 procedures, while 2 others chose to have a prophylactic mastectomy. One woman who chose to have a prophylactic mastectomy stated, “It was an easy decision to do a double mastectomy [because] to me, it was taking control of my body.”

All the women in the study underwent reconstruction, and a cluster of common words was identified as they described their reasons for undergoing reconstruction (Figure 3). Three participants expressed that they wanted to restore a sense of normalcy, with one saying, “When we get diagnosed, a thing we are all looking for is to regain a sense of normality—to back to what it was prior to diagnosis.”

Two women conveyed their desires to maintain a “feminine” appearance, and one participant said, “I wanted something, I didn’t want to be completely flat-chested. To me, especially in Hispanic culture, women look a certain way. I had a certain appearance and I wanted to go back to that as close as I could.” One other woman chose reconstruction after she witnessed a family member who did not go through the process. Two of the participants did not answer the question. 

Out of the 8 participants, 2 underwent an autologous procedure and the other 6 participants received silicone breast implants (Figure 4). Participants were asked about their reasons for choosing their specific procedure, and 3 main themes were determined (Figure 5). Half the participants chose their specific procedures out of safety concerns, and 1 participant stated, “I thought the [autologous procedure] would be more safe and comfortable. It was a long surgery but it was worth it.” Three women chose a particular procedure to avoid additional procedures in the future. One woman felt the autologous reconstruction was preferable for this reason and stated:“My fear with the implant is that my body would react to them and I would need more surgeries.” One participant chose her procedure based on her preferred aesthetic look.

Participants were also asked about the challenges they faced after reconstruction. Two main themes were found in these answers. Three participants felt that having multiple procedures, as many as 4 or 5, was the biggest burden. Two other women identified the mental and psychological burden as the most challenging issue, and 1 participant stated, “[It was] shocking after seeing your own body after the procedures—emotionally you’re just not prepared.” Three of the participants did not answer.

When asked if anyone helped participants make health care decisions, 2 participants said they relied on their husbands for help in making surgical decisions. Two participants discussed options with other family members, such as siblings and children. Only 1 woman stated that she did not rely on anyone and said, “I only told my family, my children, a week before I was scheduled to have surgery. The reason why is because I take care of everyone else in the family, so I didn’t want to stress them out with the decisions and the information.” Three participants did not answer.

Participants were also asked about the Hispanic community’s view of breast reconstruction. Two women felt their community believed having breasts was a part of the traditional feminine appearance (Figure 6). Two participants felt reconstruction was normal and encouraged by their community. Two others felt their community had mixed viewpoints, and 1 woman stated, “[The opinion on reconstruction] depended on the age of the person I was talking to. The older women have said that at a certain age I would not want to go through reconstruction again. People my age, younger people want to have breasts because we identify that as part of being a woman.” Two participants did not answer.

When reflecting on the challenges participants faced in their breast cancer journeys, 3 women felt the process was exhausting and overwhelming (Figure 7). One woman said, “[It was] challenging due to the number of surgeries in a short period of time,” and 1 woman mentioned specifically that “my body is tired and I think I need a break for a while.”

Two patients said personal life aspects, such as taking care of children after a difficult divorce or returning to work, were the most difficult things. One woman reported that dealing with the community stigma was the most challenging aspect of her journey and said, 

“I didn’t want to be known as ‘the one who had breast cancer.’ I wanted to be known as me, not as what I went through.” This sentiment was affirmed among the rest of the women as well. Two of the women did not answer.

When asked if participants wanted to change anything about their breast cancer journey, two main themes emerged. Two women said they would not change anything, and one stated: “I don’t think I would change really anything. I have been a stubborn person throughout my life, so I chose not to have lymph nodes removed and chose not to have radiation—just because, in my heart, I felt like I was going to be okay.” Four participants felt they would have chosen different procedures, either for aesthetic reasons or to avoid future procedures. One woman said: “If I had known how things would have turned out, I would have gone smaller in the beginning so I didn't have to go through all those surgeries.” Two of the women did not answer.

When asked if breast reconstruction surgery had fulfilled their expectations, 2 women were satisfied with their results. Two others were resigned to their lowered expectations, and one stated, “The breasts I have now are not perfect—but I guess my expectations have been lowered throughout the procedures.” One woman specifically stated that reconstruction surgery did not meet her expectations and said, “Every time I had to go smaller, I got more depressed.”

The results from this study point to a difference in perspective between patient and surgeon. For example, a participant explained, “The plastic surgeons want things to look pretty, but I was more concerned with the things that might go wrong.” Vanity and survival can both play a role in patients’ expectations, and the weight of each variable can vary from person to person. As one patient admitted, “Every time I had to go smaller, I got more depressed.” This patient was dealing with complications from radiation while trying to preserve an implant-based reconstruction. A surgeon is equally concerned with aesthetics and complications of a procedure, and her dissatisfaction with her end-result appearance could be due to a difference in those expectations. Some patients are simply trying to get themselves through the process of survival, and they may not be thinking of the long-term results of reconstruction, which can be very different from the viewpoint of providers and even other family members. As many of the participants expressed, the breast cancer journey can be overwhelming and difficult.

Most of the participants had some family support through the diagnosis and recovery process. One participant specifically did not inform anyone of her diagnosis until she underwent treatment. She felt that as the primary caregiver for her family, she did not want to burden anyone else with those decisions. Another participant, who had divorced her spouse 2 months  before her diagnosis, had a sister and brother who were both health care workers. They played a large role in her surgery decision, advising her to do a single mastectomy, although she admitted, “Now I kind of regret it. I should have done both.” Other participants who were married had a lot of support from their spouse and stated that their husbands were present at their appointments and helped empty the drains in the recovery period. 

For many women, having breasts is an essential element to womanhood. The Hispanic culture similarly avows this sentiment. As one participant expressed, it can be very shocking for any individual to see herself without breasts.

Our original goal with this study was to find themes regarding breast reconstruction that would be specific to the Hispanic population. The themes that were identified, such as restoring a sense of normalcy and challenges of the reconstructive process, seem like they can be applied broadly to many different populations. Because these themes are not specific to a single group, the data can serve a slightly different purpose and thus lay down exploratory work in identifying how women make decisions concerning their own health.

Future directions of this study will include a sociocultural and economic perspective to examine issues that may be addressed, such as an improved communication between surgeon and patient or financial counseling. There are so many factors to consider when a patient undergoes reconstruction because of the many decisions to be made for the surgery itself—not to mention accepting the cancer diagnosis and planning adjuvant treatment, such as chemotherapy and radiation. Regardless of cultural background, women who embark on the road to recovery from breast cancer have shared experiences and emotions. From the results of this study, clinicians can begin to understand what these women are feeling and why they choose to make certain health care decisions in their breast cancer journey. By bridging this gap between patient and physician, the discussion can be better catered towards their needs and expectations.

To allow a holistic understanding of possible cultural influences on decision-making in breast reconstruction, the authors intend to expand this study to other minority groups and include demographics. Finally, a similar study among minority groups who did not choose to undergo breast reconstruction would be beneficial to examine differences in viewpoints and influences regarding the process.

This study does have limitations. A small sample was used, and demographics, such as age, education status, and marital status, were excluded in an effort to encourage candidness through anonymity. Insurance and fiscal questions were excluded in the focus groups. In the study institution, each patient is offered implant or autologous reconstruction regardless of their payor status. The choice of reconstruction is solely from the patient’s perspective. In future studies, inclusion of a financially focused question would be worthwhile. 

Only patients who underwent reconstruction surgery were recruited for the study. All patients who are reasonable candidates and receive plastic surgery consultations at the study institution are offered reconstruction. Patients who declined breast reconstruction were not recruited for the study.

The findings in this study lay a groundwork for future studies that examine the issues that can be addressed as women undergo reconstruction. Specifically, the results highlight a difference in the perception between physician and patient in the treatment process, which can serve as a foundation for methods that improve communication between patient and physician.

Affiliations: ¹University of Kansas School of Medicine, Kansas City, Kansas; ²University of Kansas Health System, Kansas City, Kansas

Correspondence: Michelle De Souza, MD; mdesouza@kumc.edu

Ethics: KUMC IRB: STUDY00145899

Funding: The authors received no financial support for this work.

Disclosures: The authors disclose no relevant financial or nonfinancial interests.