Fear of Mastectomy Associated with Delayed Breast Cancer Presentation Among Ghanaian Women

Several factors are associated with delayed breast cancer presentation; however, more research is needed to understand the information gaps specific to the sociocultural setting. This article assesses how sociocultural perceptions influence delays in breast cancer presentation among women living in Ghana.

Abstract

Background.

Breast cancer is the leading cause of cancer mortality among women globally. Most women in Ghana present with advanced stage disease. The aim of this study is to characterize sociocultural factors associated with delayed presentation.

Materials and Methods.

Qualitative study (grounded theory, constant comparative method) using individual in‐depth interviews with breast cancer patients seen at the Korle Bu Teaching Hospital in Accra, Ghana. Interviews were conducted in English and three local languages. We achieved theoretical saturation with 31 participants.

Results.

The mean length of delay reported by patients was approximately 1 year. Five recurrent themes were related to delayed presentation: (a) Women with a confirmed breast cancer diagnosis delay treatment because of the fear of mastectomy due to self and societal stigma; (b) role of the church as a social support system given the societal stigma associated with breast cancer; (c) study participants expressed some awareness of breast cancer, but with varying depths of breast cancer knowledge encompassing both myths and misconceptions about breast cancer; (d) most patients present late because they do not associate a “painless” breast lump with possible breast malignancy; and (e) delayed presentation linked to significant financial burden associated with breast cancer treatment.

Conclusion.

Despite current efforts to increase breast cancer awareness, the fear of mastectomy remains one of the main reasons for delayed presentation. Successful breast cancer education programs will need to be framed within the broader sociocultural dimensions of femininity that address some of the stigma associated with mastectomy reported in the Ghanaian context.

Implications for Practice.

Most women in Ghana present with advanced‐stage disease. The aim of this study was to characterize sociocultural factors associated with delayed presentation. Although several quantitative studies have been conducted on delays in presentation in sub‐Saharan Africa (SSA), this study is one of the few to identify fear of mastectomy as a reason for delayed presentation. Anecdotal data from current clinical experiences in SSA suggest that this is still an issue that has not been adequately reported and addressed in most SSA countries. The research results presented here will hopefully guide health providers and national organizations in designing breast cancer education programs in Ghana and other parts of SSA.

Introduction

Breast cancer is the most commonly diagnosed cancer among women globally [1]. In sub‐Saharan Africa (SSA), it is one of the two most common cancer diagnoses in women, with cervical cancer being the other [2]. The 2012 age standardized rate (ASR(W)) for incidence and mortality for breast cancer in Ghana is estimated at ASR(W) 25.6 and 11.7 per 100,000 persons respectively, representing a high case fatality rate [2]. This is thought to be due to lack of screening [3], [4], delayed presentation and advanced stage at diagnosis [5], [6], and a higher proportion of triple‐negative molecular phenotypes that are associated with a poor prognosis [4], [6], [7]. The majority of cancer patients in Ghana present with advanced‐stage disease, which contributes to the high mortality rate [8], [9], [10].

Prior studies have identified patient and system factors associated with late presentation among breast cancer patients in SSA [11]. The largest study conducted in Ghana identified low level of education and delayed care‐seeking behavior as risk factors for presenting with tumors larger than 5 cm [8]. Similarly, other smaller studies have identified limited knowledge [11], [12], [13], [14], [15], [16], stigma associated with a cancer diagnosis, lack of social and financial support, and seeking alternative treatment from traditional healers as risk factors for delayed presentation [11], [12], [13], [14], [15], [16], [17], [18], [19], [20], [21], [22], [23]. Although the current literature identifies several factors associated with delayed breast cancer presentation and the need for breast education as a cornerstone for increasing awareness, more research is needed to understand the information gaps specific to the sociocultural setting. The aim of this study is to assess how sociocultural perceptions influence delays in breast cancer presentation among women living in Ghana. We believe the qualitative method is more effective in revealing salient insights into sociocultural factors that impact presentation with breast cancer.

Materials and Methods

Study Design

This study used qualitative methodology as a preliminary vehicle for investigating the above research question. The study setting was the outpatient clinic at the National Center for Radiotherapy and Nuclear Medicine, Korle Bu Teaching Hospital (KBTH), which is a public hospital and the largest referral hospital in Ghana. A multidisciplinary team of surgeons, radiation oncologists, oncology nurses, a clinical psychologist, and a clinical pharmacist meet every Tuesday at the clinic to discuss newly diagnosed and follow‐up breast cancer patients.

Patient Population

The patient population represents a subset of patients self‐referred or referred by district hospitals in Accra and other cities in the southern part of the country to KBTH. 2010 census data show 71.2% of this population identifies as Christian [24]. Thirty‐one women with a confirmed diagnosis of breast cancer, aged 18 and above, were selected and interviewed between June 2008 and August 2008 using purposive sampling [25]. Potential participants were patients returning for follow‐up who were asked by the co‐author (V.V.), a radiation oncologist at the clinic, if they would participate in the study. All the women who were approached agreed to participate and were then introduced to the interviewer (Y.M.M.), who explained the study in detail. No incentive was provided to study participants. Verbal informed consent was obtained from all study participants in order to maintain anonymity.

Interview and Data Collection

The interviews were conducted in English and three local Ghanaian languages—Twi, Ga, and Ewe. The study participants were asked a series of open‐ended questions about their general health and well‐being, previous encounters with the health care system, knowledge of breast cancer, clinical or mammography breast cancer screening history, factors that influenced their decision to present with their symptoms and pursue prescribed treatment course, their feelings and perceptions about their diagnosis, and any religious and sociocultural influences relevant to their initial presentation to the health facility for diagnosis and treatment (Panel 1). The initial questions were selected based on joint review by the authors and previous themes highlighted in the literature. The iterative process was then used to modify subsequent interview questions based on emerging themes [26]. A mix of both planned and unplanned follow‐up questions were carefully considered to continue the conversation and were primarily directed by the respondent's knowledge and interests [27]. All interviews were anonymous, and no personal identifiable information was obtained. No repeat interviews were carried out. All but three interviews were recorded using a digital tape recorder. Recorded interviews were then transcribed by an independent transcriptionist. Interviews conducted in English were transcribed verbatim. Interviews conducted in languages other than English were translated and transcribed and back translated to establish accuracy of the data. The research protocol was approved by the Human Investigation Committee of the Yale University School of Medicine and by the Ethical Review Committee at KBTH.

Statistical Analysis

Data were analyzed according to principles of grounded theory methodology [25]. All transcribed interviews were entered and organized using NVivo. Each interview was coded by two independent coders. The interviews were coded line by line, and a theme was assigned based on the understood meaning. Coders maintained accuracy through constant comparison with previously coded segments [26]. The independently coded interviews were then compared for agreement of the coding assigned. Where there was a disagreement, the code assignments were discussed between the two coders and the interviewer to establish an accepted agreement. There was at least 80% agreement between coders for each of the interviews. We sought to ensure the credibility and reliability of the data by maintaining an “audit trail, which is detailed description of the research steps from data collection to reporting of results” [25]. Reliability was established by using more than one coder and by review and discussion of the codes among the coders and authors, as needed.

Results

Thirty‐one patients with confirmed breast cancer diagnosis were interviewed. The average duration of the interviews was 45 minutes. The majority of the patients (64.5%) were 50 years of age or younger. The most common presentation at the time of diagnosis was a breast lump (96.8%; Table 1). The mean length of self‐reported delay by patients was 1.2 years (2 weeks to 4 years). Five unranked recurrent themes characterized knowledge, sociocultural beliefs, and attitudes about breast cancer and reasons for delayed presentation.

Table 1. Descriptive data among recently diagnosed breast cancer patients seen at Korle Bu Teaching Hospital, Accra, Ghana, between June and August 2008.

^aIn patients who reported multiple symptoms, only the first symptom reported is recorded.

Abbreviations: KBTH, Korle Bu Teaching Hospital; SD, standard deviation.

Theme 1: Fear That a Mastectomy Would Lead to Diminished Sexuality and Femininity

The fear of mastectomy represented aspects of self‐stigma and societal stigma. When women presented to the hospital and saw an oncologist who established their breast cancer diagnosis, most of these women did not adhere to timely management or absented themselves for varying lengths of time before re‐presenting at the hospital. This was attributed to the fear of mastectomy. This is within a context in which the resources and skillset for reconstructive surgery after mastectomy are not available to patients. When probed directly, women expressed very passionately that the diminished sexuality a woman experiences after mastectomy was the biggest fear associated with a mastectomy. An 85‐year‐old widow, who consented to a mastectomy, had this to share about the implication of a mastectomy for younger patients: “I saw young ladies like you who had it [breast cancer], and it was very sad because I was thinking there is no way they will get anyone to marry them. Some of them had one breast. If you have one leg or one hand, you get someone to marry you, but without a breast, you won't get anyone to marry you! If you don't have a husband, it is very difficult. That is why the doctor said it is so bad to get the sickness [breast cancer] at a young age.” One woman who declined a mastectomy said, “a woman's glory is her breast, so what is your use if one of your breasts is not there? I will rather die with my two breasts than live with one.” There was one case in which a woman who had initially consented to a mastectomy expressed regrets, stating that “my husband even wanted a divorce because he said I had been maimed.”

Theme 2: Limited Breast Cancer Knowledge Coupled with Inability to Internalize Breast Cancer Knowledge

Prior to their diagnoses, all but two of the study respondents had heard some information about breast cancer. The main sources of information identified were the media (i.e., television or radio) and church‐organized health outreach programs. When asked about knowledge of breast cancer and screening recommendations prior to diagnosis, the responses reflected limited knowledge of breast cancer encompassing both myths and misconceptions about breast cancer. One of the study participants said, “I even saw it on a TV program, [that] women should check every morning for lumps. But when I wake up, I don't even think there will be anything [breast lumps] there… so I don't’ check.”

The women in our study expressed some awareness of breast cancer but showed significant variability in their level of knowledge. The following represent some of these misconceptions about breast cancer: “…they usually say that when you put money in your brassiere, you can develop it [breast cancer];” “I thought because our breasts were next to our chest, one will die when one's breast gets cut off;” “I understand when you do the surgery you will die… so when I was at the surgical ward, they even booked me for that surgery and I run away.”

One participant with more in‐depth knowledge explained that “… you can have some cancerous cells developing, that can start with a lump or something, and then it grows into something else. And then if they detect the lump quickly enough, they remove it and you're ok, but if it has spread then you have to have another form of surgery. Sometimes people lose their breasts and they go through chemotherapy and if they're able to detect it early enough, it's treatable, but once it's advanced, there's no cure for it; you probably have to be given medication to slow down the rate at which it spreads.”

A few women assigned spiritual causes to the disease; some of these myths about the disease are summarized in the following statements: “My husband fought with somebody and that person [cast a spell]… so the spell was meant for my husband, but it did not get him, so it attacked me.” One of the study participants also explained that “I had heard about it [breast cancer], but I had not seen it with my eyes. I didn't know anyone who had it….” Another participant explained that “I was shy because people would have said that I had brought a curse on the family, especially because it had never happened to anyone. That's why I didn't tell anyone.” The women in our study also commented on the fact that discussing their diagnosis inspires gossip. One participant explained, “for some people [breast cancer patients]… there are spiritual forces [causes] too, so you shouldn't talk about it;” and another explained, “if I should tell them [network of friends], they would be consumed with fear and there will be too much gossip. I don't want things to spread.”

Theme 3: Painless Breast Lump Was Not Associated with Breast Cancer

Despite some knowledge of breast cancer and screening, women delayed even after detecting a breast lump. Almost all study participants presented with a lump, which most mistook for a “boil,” a fairly common and benign occurrence. Study participants expressed shock at their diagnosis, and it was inconceivable to them that what had initially started out as a painless breast lump turned out to be breast cancer. To summarize, one patient said, “it [the breast lump] was just there, it wasn't painful, and no fluid came out of it. So I became surprised because it didn't seem to match with any of the breast cancer symptoms that you hear, such as fluids coming out of the breasts, and the color of the breast changing.”

Theme 4: Role of the Church as a Social Support System

All but one of the study participants, who was Muslim, identified as Christian. A recurrent theme in our analysis was the influential role of the church as a social support system during various stages of their diagnosis and management. For most participants, the church was aware of their breast symptoms and involved in some aspect of their disease prior to presentation to the hospital. For some of these women, a church leader or an individual in church encouraged them to present to the hospital with their symptoms. One of the study participants stated that part of the reason why she eventually presented to the hospital with the breast lump was “when I showed it to the nursing sister at church, she even told me that it wasn't really anything and that the doctors could operate on it and have me come back home right away, but the tests showed that it was cancerous even though it was small.” And even for those who independently arrived at the decision to seek medical follow‐up, they still turned to the church for support before presenting to the hospital. One of the study participants said, “I told my superintendent minister and my pastor, who prayed for me before coming [to KBTH].”

Although the study participants had expressed their reluctance to discuss their diagnoses publicly or within social circles, our study reveals that women diagnosed with breast cancer felt confident in discussing their diagnosis with church affiliates. One study participant, when specifically asked about this, said, “Only the pastor knows. I've told other people I'm sick, but only the pastor knows exactly what is going on.”

Theme 5: Financial Reasons Were Related to Delayed Presentation and Treatment

Given that Ghana is a resource‐poor country, the study participants were asked directly how cost of care influenced delayed presentation. One of the study participants expressed this financial barrier: “Immediately I went to the lab and came here, they immediately scheduled me for surgery. I didn't have money, so I went home and never came back because I didn't have money… I run away because of the money.” One of the study participants, a trader, explained the difficult financial choice she had to make, which subsequently resulted in her delayed presentation: “…at the time I discovered this lump in my breast, my daughter had just been accepted into Legon [one of three main universities in Ghana] to study nursing… I didn't come [follow up with treatment] because I wouldn't have been able to work to provide [financially] for my child and I would have destroyed her life… so I wanted her to go because I knew that even if I had passed away, she would have entered the University.”

Most of the study participants discussed the enormous financial burden of cancer management and specifically remarked that chemotherapy drugs were too expensive. The majority of the study participants who were in low‐income jobs received significant financial assistance from the church. When probed about the extent of financial assistance offered by the church, one of the study participants said, “so they gave me my bill [for chemotherapy] and I gave it to the church, so they appealed for funds and that is what I used to pay it off. I paid 425 GH¢ cedis [∼$300 in 2008]”

Almost all the women indicated that they had purchased into the National Health Insurance Scheme (NHIS), a public health insurance offered by the government of Ghana; however, they expressed frustration regarding the limited coverage of this insurance plan: “I have health insurance, but it doesn't cover much. It covers X‐ray and it covers lab. But it doesn't cover anything here [i.e., chemotherapy and radiation therapy].”

Specific questions with regard to transportation and associated costs revealed that 25.8% of study participants traveled from outside of Accra to seek treatment at the KBTH, which is located in the capital city, Accra (Table 1). Consequently, these patients had to make arrangements for home care and also arrangements for housing while in Accra for treatment. However, this was not explicitly stated by any of the women in our study as a reason for delayed presentation and management.

Discussion

This study provides critical insights into why women delay in seeking care for breast symptoms and also delay in following up with management after a breast cancer diagnosis. Apart from confirming themes that have been elucidated by previous studies, our study adds more in‐depth explanation into the role of different aspects of stigma and lack of knowledge and financial barriers that contribute to delayed breast cancer presentation.

Several elements of stigma were identified in relation to self‐stigma and societal stigma associated with mastectomy and the perceived role of breasts in society. Prior quantitative studies have identified an association between fear and different aspects of therapy, with fear being associated with chemotherapy adverse effects, radiation therapy and surgery [20], [28], [29], and higher ratings of fear among younger women in South Africa [28]. The limitations with these prior studies are that although they provide quantitative measures of fear, critical information about the pathology of the fear is lacking, and this may be useful in developing specific educational and public service programs to address delayed presentation. In Ghana, as is the case with most ethnic groups in Africa, there is an intense societal gaze at women's breasts, where society's perceptions of a woman's innate feminine nature is defined by her breasts [30]. The breasts are still viewed within this cultural setting as a symbol of womanhood, nurturing, and sexuality [30], [31], which forms the basis of the societal stigma associated with a mastectomy without reconstruction. Therefore, in resource‐limited countries where breast reconstruction options are not available, society equates going “flat” after mastectomy with diminishment of a critical piece of a woman's femininity. These findings are consistent with reports of self‐stigma demonstrated in anecdotal accounts of women in some societies who agonize that even if they survive their breast cancer, the loss of their breast(s) would decrease their femininity and sexual attractiveness to their spouses or potential suitors. Our findings illustrate the strong influence of social and cultural perceptions on psychological components of sexuality and how the imposition of self‐ and societal stigma influences care‐seeking behaviors among breast cancer patients. The majority of the patients we interviewed were 50 years or younger. It has been reported in prior studies that the fear of mastectomy is a greater concern in younger women compared with older women [28].

Similar to prior studies, we also found that all respondents had some prior but limited knowledge of breast cancer [32], [33], through the media (i.e., television and radio) and church outreach programs. In addition, the majority of our study participants presented with a breast lump [23] and cited the lack of familiarity with the association between a painless breast lump and breast cancer as a major reason for delay in presentation [22]. We identified both myths and misconceptions about breast cancer as barriers to presentation, which have also been reported in quantitative sampling of Tanzanian and Nigerian women, who reported high rates of not being at risk of breast cancer and beliefs regarding breast cancer being attributed to evil spirits [23], [34], as well as a fear of the diagnosis and death reported in Botswana [35].

Our study also showed the cost of breast cancer treatment as a barrier to presentation. Most participants had purchased the NHIS, introduced by the government of Ghana in 2003. The premium for this insurance scheme ranged from GH¢7.2 (∼$5) to GH¢48 (∼$34 in 2008). Patients depended on the insurance coverage of laboratory tests and diagnostic scans but expressed concern about the out‐of‐pocket financial burden of chemotherapy and radiation treatment for breast cancer, which at the time of this study was not covered by NHIS.

Our study highlights the important role that churches play as a social support system for patients diagnosed with breast cancer. Our study participants, who were mostly Christian, perceived the church to be a safe setting in which to voice breast health concerns, which may be driven by societal stigma associated with breast cancer. Whether such systems are found in other religious groups is uncertain and uninformed by the results of our study, given that almost all of our patients were Christians, which is not reflective of the religious distribution of the population in the year this study was conducted. A recent survey of female members of Islamic and Christian organizations in Ghana about their religious belief and breast health practices showed that significantly fewer Muslim women were likely to participate in breast health activities compared with Christian women [36]. These may reflect a higher tendency for Christian women to seek breast care and explain some of selection bias in our study.

Overall, this study provides information that may be helpful in developing educational and public health tools that may help address delayed presentation among breast cancer patients in Ghana. Different roles of self‐ and societal stigma are identified in our study, as well as the role of myths and misconceptions about breast cancer as potential barriers to presentation among the women interviewed in our study. The role of the church is an important relationship because it is perceived as a setting void of societal stigma and should be leveraged further in education efforts and for creating support systems for breast cancer patients. Given the significant influence of sociocultural perceptions of sexuality and femininity on breast cancer delays, it is important that breast cancer education be broadened to target all members of the society, because men and children, and not just breast cancer survivors, need to adjust their cultural lens and emotional sensitivity to postmastectomy breast cancer survivors. Although resources for breast reconstruction are not easily accessible, all women should be offered the option of breast prosthesis after mastectomy. Furthermore, in addition to education, access to a greater range of affordable treatment modalities for cancer should be available for these patients. We identified the costs of radiation and chemotherapy as barriers that will need to be addressed or covered in insurance schemes in order to make comprehensive breast cancer care affordable and accessible.

Our research has several strengths. In person, one‐on‐one in‐depth interviews with a female interviewer who spoke the local languages, as well as maintaining anonymity, facilitated an open and candid discussion. Additionally, we used several recommended strategies to ensure reliability, including audio taping of almost all the interviews, independent development of a coding scheme, and follow‐up comparison between coders and maintenance of an audit trail to document analytical processes and procedures [25], [37].

Although several novel themes emerged from this study, our findings should be interpreted in light of the fact that the qualitative methodology has some limitations: We employed purposive sampling to specifically identify women who would inform our research question. We only interviewed women seen at the self‐referral clinic at KBTH, which limits generalizability. Most of the women seen in the public sector are of lower socioeconomic status, and most of the women in our study identified as Christians; therefore, the information may not be generalizable to other demographics including those who identify as Muslims (17.6% of the population) or traditional religion (5.2%) [24]. Additionally, the attitudes, knowledge, and experiences identified from the patients we studied may not be generalizable to the entire population because these are women who, despite delays, eventually did present for follow‐up and management of their breast cancer. The results of these studies therefore do not capture the barriers faced by undiagnosed symptomatic women and those at risk for breast cancer. Specifically for nonparticipants, financial barriers to presentation and management could be even more significant than those reported here. Future studies of larger populations should focus on educational interventions and content that take into account education of broader society, not just women at risk, and impact of these interventions on the stage shift in presentation.

Conclusion

With a new global emphasis on prioritizing and increasing access to cancer care globally, our research highlights that understanding and addressing the social and cultural influences on the breast cancer experience of Ghanaian women, and presumably women in SSA, will aid in the design of effective educational and cancer control programs to reduce delays in presentation.

Author Contributions

Conception/design: Yehoda M. Martei, Verna Vanderpuye, Beth A. Jones

Provision of study material or patients: Yehoda M. Martei, Verna Vanderpuye

Collection and/or assembly of data: Yehoda M. Martei

Data analysis and interpretation: Yehoda M. Martei, Verna Vanderpuye, Beth A. Jones

Manuscript writing: Yehoda M. Martei, Verna Vanderpuye, Beth A. Jones

Final approval of manuscript: Yehoda M. Martei, Verna Vanderpuye, Beth A. Jones

Disclosures

The authors indicated no financial relationships.