Broken yet Brave: Arabic Women’s Experience of a Breast Cancer Diagnosis

Abstract

Introduction:

Breast cancer is the most common cancer in Arabic women and is often diagnosed in advanced stages, resulting in an increased likelihood of requiring a mastectomy. Despite this, there is a lack of contemporary literature exploring Arabic women’s experiences of breast cancer and its sequelae.

Method:

Semi-structured interviews were conducted between 2019 and 2022 of Arabic women diagnosed with breast cancer. Data were analyzed using thematic analysis as described by Braun and Clark.

Results:

Two main themes were identified: (a) Broken yet brave describes participants’ experiences when diagnosed and (b) Making decisions about treatment and experiences of support detailing their lack of decision-making autonomy and perceptions of support.

Discussion:

Arabic women believe in the concept of fate and faith, and their cultural conditioning is to prioritize family over themselves, often with limited support. They lack autonomy in decision-making due to the patriarchal society they live in.

Introduction

Breast cancer (BC) is the most commonly diagnosed cancer globally, with an estimated 2.3 million new cases and an estimated 685,000 deaths in 2020 (Arnold et al., 2022). The burden is expected to increase to over 3 million new cases and 1 million deaths in 2040 (Arnold et al., 2022). Treatment options for breast cancer are based on the type, stage and grade, size, and whether the cancer cells are sensitive to hormones (Klevos et al., 2017), with mastectomy generally being considered a last resort.

The prevalence of BC in Arabic women is unknown due to lack of standardized cancer registries; however, it is estimated to be 14% to 42% of all tumors in some reports, and between 17.7% and 19% of all new cancers in others (Fearon et al., 2020; Saadeh & Abdel-Razeq, 2022). The average age of diagnosis is estimated to be around 48–52 years compared with around 63 years in industrialized countries such as Europe and the United States with approximately one half and two thirds of diagnosed individuals below the age of 50 compared with only about 23% below the age of 50 in the United States (Saadeh & Abdel-Razeq, 2022). Arabic women were also shown to have less favorable outcomes overall in relation to mortality-to-incidence ratio globally (Mangiardi-Veltin et al., 2023). This may be attributable to being diagnosed at a younger age and/or presenting with a more advanced stage of breast cancer at diagnosis when compared with Western Countries (Saadeh & Abdel-Razeq, 2022).

Women from Arabic countries experience greater social, political, and economic inequities compared with women from other parts of the world (Hussein & Ismail, 2017). They have unique life experiences, which imply unique challenges in their BC journey.

Purpose of the Study

This article is drawn from a larger qualitative study which aimed to explore sexual health experiences of Arabic women after a mastectomy. The purpose of this article is to provide insights into the experiences and challenges faced by Arabic women when diagnosed and the sequelae of BC.

Method

A qualitative approach underpinned by feminist perspectives, social constructivism, and storytelling was selected to guide this study to facilitate the sharing of participants’ accounts of events and experiences. This approach also allowed the researcher to explore women’s experiences and how they understood and described human phenomenon (Creswell & Poth, 2017). Given the highly patriarchal nature of Arabic culture that oppresses and marginalizes women, feminist perspectives ensured power relations between researcher and participant were minimized to prevent further oppression of women who participated in this study. A social constructivism lens was important, as we acknowledge that people’s perspectives and meanings they attribute to experiences are shaped by environmental and sociodemographic variables, including culture. Thus, it was recognized that Arabic women would have unique perspectives and understandings about a breast cancer diagnosis.

Stories are also socially constructed and shaped by people’s experiences of the world (Pino Gavidia & Adu, 2022). The use of storytelling enabled the researcher to elicit authentic information about their experiences and to make sense of those experiences. Arabic culture is steeped in storytelling as a way of communicating (Bounhas et al., 2010) and provides an opportunity in patriarchal societies, for women who are vulnerable and devalued to be heard and documented (Ouhiba, 2017). Storytelling in this study encouraged participants to share their stories from diagnosis to survival and provided the researcher with insights into the subjective experiences and perceptions of women who undergo mastectomy.

Sampling and Recruitment

Using purposive sampling, participants were recruited using flyers via social media (Facebook, WhatsApp, and Twitter), breast cancer support organizations, and Arabic community groups. Arabic women over the age of 18 who had survived breast cancer at least 1 year after mastectomy (unilateral or bilateral) were invited to participate in the study.

Data Collection

Participants were given the option of face-to-face, telephone, or online interviews. Semi-structured conversational style interviews were used as a strategy to elicit storied accounts. This allowed participants the freedom to tell the stories that were most significant to them and contributed to the development of rapport and trust between the researcher and participant. Further open-ended prompt questions were asked to encourage participants to tell their stories about their experiences and to provide more detailed stories regarding their breast cancer journey. Participant interviews were conducted in English and/or Arabic and were audio-recorded. The interviews were transcribed verbatim to allow the collection of full and complete data (Holloway & Wheeler, 2010). Interviews in Arabic were translated by a professional translator. Data collection continued until the same information reoccurred and nothing new was evident. A total of 22 interviews were conducted and were between 60 and 75 min in duration.

Ethical Considerations

This study was approved by the relevant Human Ethics Research Committee (HREC approval number H12998) and the National Health and Medical Research Council (NHMRC, 2007) guidelines were adhered to. Both the consent form and Participant Information Sheet (PIS) were translated by an expert into Arabic to ensure correct translation of information and informed consent was obtained. Due to the sensitive nature of the research, confidentiality was a concern and there was an obligation to protect the privacy of the participants and ensure anonymity. Personal details were de-identified and confidentiality was enhanced by using pseudonyms. If participants became distressed during the interviews, the researcher offered to stop the interview and participants were reminded of their right to withdraw from the study at any stage. They were also supplied with a list of free support services in Arabic and English language.

Data Analysis

Based on Braun and Clarke’s (2006, 2021) framework, thematic analysis was used to uncover ideas and identify themes from the data. Initially, the authors immersed themselves in the data to allow familiarization and to enhance understanding of participants’ experiences. Initial codes were then generated by organizing data into meaningful clusters followed by a search for themes which resulted in the major themes being identified. Finally, all themes were reviewed by all authors and discussed until consensus was reached.

Rigor

The requirements of credibility, transferability, dependability, and confirmability must be met to assure rigor in qualitative research (Lincoln & Guba, 1985). To ensure rigor in this study, there was prolonged engagement with the participants and an audit trail was established, meaning that documentation of the data, methods, and decisions made throughout the conduct of the study can be examined by others (Tobin & Begley, 2004). Accurate records were kept on methodological decisions as well as contact with participants and participant interviews. This was done to allow other researchers to judge the findings as reasonable and fair. The research team members individually reviewing and coding transcripts, and regularly referring to the original data to confirm findings achieved confirmability.

Results

Demographically, participants comprised 22 women aged between 28 and 60 years of age, with the majority aged under 40 years (see Table 1). Two participants spoke English, while the remaining spoke only Arabic. All participants had a diagnosis of breast cancer and had survived at least 1 year post surgery for mastectomy.

Table 1.

Demographic Details of Participants.

Participant number	Age at diagnosis	Nationality	Place of residence	Marital status
1	52	Syrian	Australia	Single
2	42	Syrian	Australia	Married
3	43	Saudi	Australia	Divorced
4	45	Jordanian	Australia	Married
5	55	Lebanese	Australia	Divorced
6	60	Lebanese	Australia	Married
7	44	Jordanian	Jordan	Married
8	38	Palestinian	Jordan	Married
9	42	Algerian	Algeria	Married
10	41	Tunisian	Tunis	Married
11	33	Moroccan	Morocco	Married
12	38	Egyptian	Egypt	Divorced
13	51	Moroccan	Morocco	Married
14	28	Algerian	Algeria	Married
15	44	Egyptian	Qatar	Married
16	41	Algerian	Algeria	Married
17	44	Jordanian	Qatar	Married
18	35	Libyan	Libya	Married
19	31	Egyptian	Kuwait	Married
20	46	Iraqi	Iraq	Married
21	44	Iraqi	Iraq	Married
22	29	Egyptian	Egypt	Married

Four of the women were diagnosed after routine breast screening, two participants discovered a mass in their breast after feeling pain, and the remaining women described anatomical changes such as a breast lump which prompted them to seek medical advice.

Two main themes emerged from the data analysis. The first theme Broken yet brave describes participants’ experiences when initially diagnosed with breast cancer. The second theme Making decisions about treatment and experiences of support details their stories of lacking treatment options and decision-making autonomy and their perceptions of support they received throughout their breast cancer journey.

Broken yet Brave

This theme highlights the emotional distress participants reported feeling when they were initially diagnosed with breast cancer. At first, they experienced confusion and fear. Participant 20 conveyed it is an “indescribable feeling that no words can express it.” Participant 16 reiterates this feeling of being overwhelmed in the following excerpt:

I was shocked. I did not expect to get injured with this disease [breast cancer]. What should I do? I stayed sitting at my place [in the doctor’s office], thinking and asked many questions, what should I do? Where do I go? My thoughts were very distracting. (Participant 16)

After the initial shock and realization of their diagnosis, the women expressed feeling intensely fearful. These various reactions were based mainly on cultural beliefs and the general perception among Arabic people that a diagnosis of cancer signified their impending death:

I broke down and began to cry. I think that the first thing that came to my mind was that I am going to die. (Participant 5)

The impact of culture on the perception of cancer as a death sentence was also evident in Participant 18’s story. Since childhood, she had been conditioned not to mention cancer by name and highlighted that in Arabic countries, people considered a diagnosis of cancer as a death sentence:

I was very sad and cried because the predominant impression in Libya and other countries of the world that cancer means death. (Participant 18)

Prioritizing family was strongly evident in participant’s narratives. They indicated how they hid their own grief and emotions to care for others and provide for their needs, at times portraying a sense of bravado despite their own fear. A number of participants described how they hid their fear and grief to protect their families:

It was hard for my children and me [to be diagnosed with breast cancer], but I had to make them feel better. So, I did grieve, but I did not have space to grieve. I tried hard to make my children think I was getting better, and I had to go back home for my kids. It was a very painful process. (Participant 5)

Participants considered their home, children, and family their priority and significant responsibility. They conveyed their experiences of living in two parallel dimensions: the public dimension as a healthy mother and devoted housewife, attentive to their husband and their children’s physical and emotional needs; and in the concealed dimension, where illness, pain, fear, and confusion dominated their lives but allowed them to cry and grieve:

I was pretending that I was a strong woman so as not to spread negative affect of lives of my children. I tried to show that I am strong and control myself, but I was broken, and when I am alone, I cried a lot. (Participant 10)

Despite these feelings, trying to be strong for families and friends seemed to give the women strength and a sense of resilience. In the following excerpt, Participant 14 conveyed that despite her distress, her concern for her family strengthened her resolve to survive:

I was crying and hugging my young baby, who was three months old. But I was patient and said that I must live for my children, encourage myself, and be strong until I overcome the disease and become patient with my mother and family. (Participant 14)

Making Decisions About Treatment and Experiences of Support

Participants faced limited treatment options due to being diagnosed in advanced stages of breast cancer and a perceived a lack of autonomy in the decision-making process regarding treatment plans. They reported feeling that their husbands and doctors, either jointly or separately, made decisions about their treatment with minimal, and at times, no consultation, with them:

They gave me no choice. The doctor sat me down and with my oncologist decided the mastectomy. The doctor told me that we had no other option and that we had to do the mastectomy, because they found two other lumps that spread to my lymph nodes . . . and when I asked do I have a choice . . . told me that it depended on what I wanted if I want to survive or die. It was really hard to accept. (Participant 5)

Some participants reported their husbands wielded power and control over their health choices as opposed to them making their own decisions. Despite Participant 10 being provided with several treatment choices by medical staff, the following quote highlights the power her husband had to make decisions about her body:

The doctor gave me many choices for treatment, there was an initial option for partial surgery, but my husband asked him to eradicate the entire breast. (Participant 10)

Lacking autonomy extended to decisions about whether to undergo reconstructive surgery after mastectomy. Some participants noted that they felt they had no choice but to undertake further surgery. Participant 1 did not want to have a breast reconstruction; however, her partner insisted. Thus, the decision around cosmetic surgery was equally made by her husband and doctors with minimal input from her:

At the time, I had nothing in my mind, and I did not think of my external physical appearance, and I was so scared of the side effect of cosmetic surgery. However, the decision came abruptly because the doctors at the hospital offered to do cosmetic surgery immediately after the operation. My partner was one of the supporters of the cosmetic surgery decision, and he said this was the right decision for my health. (Participant 1)

Conversely, despite wanting to undergo reconstructive surgery to improve their self-image, some participants experienced negativity and opposition from their partners. Once again, they felt unsupported in their decision-making about matters to do with their own health and well-being. Participant 2 disclosed,

The doctor recommended a mastectomy and suggested to me to have reconstruction surgery in the same procedure. My husband opposed the reconstruction surgery because he thinks that the danger ended with the mastectomy, and there was no need for the reconstruction surgery. But I told him that I look at the mirror and see myself in undesirable shape. So, when I open my wardrobe, I remember what I had lost why not reconstruct my breast as long as I have the chance to do so. So, my husband refused the reconstruction surgery. (Participant 2)

As many of the participants felt they were not supported in their decision-making, they sought support from other sources with the majority noting their faith as integral. For instance, Participant 1 watched a religious channel associated with giving hope and confidence to the suffering in society. The messages broadcasted were on the will of Allah and his ability to change people’s situations which resonated positively with her:

The first support was from my Lord and my belief that all He had fated is good for me. I have been an ardent viewer of the TV hymns channel since my diagnosis to date. (Participant 1)

Some participants preferred prayers and reading the Holy Quran. They noted that through the religious books and prayers, they experienced reassurance that all which was happening to them was ordained by Allah. Participant 6 noted that

I recite the Qur’an so that I feel as comfortable. Also, I listen to some relaxing music or supplicate to Allah to relieve my distress and relieve my grief. (Participant 6)

Many participants shared their experiences of receiving much welcomed support from their family members. Participant 5 conveyed the importance of family and spousal support and reported they supported her in multiple ways:

I had a lot of support. I had my sisters; I had my partner and so many supported me. My big family, I have a big family, five sisters and four brothers. They were very supportive and help me financially as well to pay for my surgery the first time. During the chemical therapy when I was very sick, I had my sister take me and spend the day with me. (Participant 5)

While faith, family, and friends were all notable supports for the participants, the importance of support from their husbands and partners was highlighted by several of the women. For instance, Participant 14 reported feeling grateful because her husband was with her throughout her journey, reassuring her of his feelings toward her:

My husband always tells me that I am a beautiful woman, and I have not changed. He never felt that there was something imperfect. (Participant 14)

In contrast, some participants identified that their husbands were not supportive, but were a source of stress, anxiety, and emotional pain. For some of the women, their husbands were supportive initially, but as their treatments progressed, they felt that their husbands distanced themselves:

At the beginning of the disease, my partner was the biggest source of support for me, but over time his concern decreased, and he became a little careless. His work and his family were more significant to him [than me]. He was there at the time of the operation but did not stay by my side till I went home. (Participant 1)

A similar response on the changing nature of the relationship with her spouse was mentioned by Participant 5 who stated, “my husband openly told me that he was ashamed of me and felt uncomfortable being with me in public.”

Participant 9 revealed that after being diagnosed with breast cancer, her relationship with her husband changed. He supported her through the mastectomy but became disinterested and was emotionally absent after the surgery:

My husband wasn’t coming with me to chemotherapy after mastectomy, he just supports me on the operation day . . . He does not even care to ask the results of the tests and examinations or even come with me for chemotherapy sessions even though I used to see women coming to sessions with their husbands and he could come with me, but he did not. (Participant 9)

Discussion

Arabic countries are largely Muslim and are, as such, guided by the Muslim religion. One widespread social belief in Arabic culture is the concept of fate. The fundamental belief in these societies is that “Allah” determines life and life events, and that people have minimal control over them (Banning et al., 2009). Thus, there is a general belief and acceptance that if one becomes ill, one is destined to be so and must accept Allah’s will. This was echoed in the findings of participants of this current study, who attributed their BC diagnosis to “Allah’s will” and indicated that they accepted that their sickness was predestined and intended to be a part of their life.

A key finding was that participants prioritized their families over their own health and felt they needed to present a strong face and determination to their family members. This is in keeping with Arabic culture, where women are assigned the primary role of domestic carer, which includes caring for their families, including children and spouses (Fearon et al., 2020; Haddou Rahou et al., 2016). This is a significant issue facing Arabic women who are conditioned to prioritize others over themselves which can impact their own self-care during BC treatment.

Patriarchy denotes a societal structure in which men wield primary authority and dominate political leadership positions, exert greater moral influence, and are more socially and financially advantaged than women (Benstead, 2021). In these patriarchal societies, men hold authority and decision-making power over women, whether they are their children, siblings, or spouses (Gearing et al., 2013). Major decisions concerning family matters and women’s health continue to be dictated by men, often with the support of socio-cultural, legal, and political structures (Said-Foqahaa, & Maziad, 2011). This was demonstrated in the current study, where women reported that for most of them, treatment decisions were made on their behalf by their spouses and health professionals, usually male. It was evident in this study that the husbands and doctors’ opinions took precedence over women’s preferences for treatment. This contrasts with other regions, mainly Western countries, where women enjoy greater autonomy in health care decision-making (Fearon et al., 2020). Research suggests that autonomy is essential, as when women have more control over their health and treatment decisions, their recovery from BC and other cancer-related illnesses is greatly enhanced (Fearon et al., 2020).

Despite contemporary research indicating improvements in Arabic countries in gender equality in educational attainment, this has not yet translated to other domains such as employment, political positions, and an overall voice in decision-making (AbiRafeh, 2022; Liloia, 2022). Empirical research is needed in this space to add strength to reforms for reducing the gender gap prevailing in Arabic countries, particularly in decision-making about their own health and well-being, such as in treatment options for breast cancer. This is important as women having better control over their health and decisions have been found to significantly enhance their recovery from BC and other cancer-related illnesses (Fearon et al., 2020).

Many participants in this study found their faith was a source of comfort in their despair. Fearon et al. (2020), in a thematic analysis of qualitative studies that reported on the experiences and quality of life of Arabic women with breast cancer, reported that faith in Allah was instrumental in assisting women in coping with the BC diagnosis. Fearon et al. (2020) also identified that Arabic women diagnosed with BC believed they were being punished by Allah for their sins and experienced shame, guilt, and fear of being blamed by others for having BC. This aligns with findings in this study where the participants attributed their breast cancer diagnosis to “Allah’s will” and indicated they would accept that their sickness was predetermined and intended to be a part of their life. Religious faith is clearly a strong influence on Arabic women’s beliefs and provides them with strength throughout their BC journey. Respecting the women’s faith is an important element of cultural competence for health care providers, may support the emotional well-being of Arabic women experiencing BC, and is viewed as a valuable finding in this study.

When considering sources of support for Arabic women who have been diagnosed with BC, the participants in this current study indicated that their biological family members were valuable sources of support. Other studies concur with support identified as a main influence for quality of life for Arabic women after a diagnosis with BC (Fearon et al., 2020; Melhem et al., 2023). Other studies indicated that the main sources of social supports for Arabic women with BC were their husbands (ALmegewly et al., 2019). Interestingly, while husbands featured as being high on the list of expected sources of emotional support for Arabic women diagnosed with BC, women also expressed concerns that their husbands may leave them or take a second wife. In some instances, these fears were realized by sexual relationships being strained or non-existent, marriages breaking down, and physical or emotional abuse perpetrated by their husbands (Fearon et al., 2020).

Conclusion and Recommendations

Despite some improvements in gender equality in some domains, Arabic women still experience many cultural challenges when diagnosed with breast cancer. They have limited treatment options and a lack of autonomy in making decisions due to the patriarchal society they live in. They believe in the concept of fate and faith, and their cultural conditioning is to prioritize family over themselves, often with limited support. An understanding and appreciation of these factors can help health care workers to deliver more culturally congruent care through supporting and empowering these women. The implementation of culturally congruent health care policies, in addition to education and health promotion, is instrumental in empowering Arabic women to have a voice in their own treatment and support interventions that personalize care addressing their unique needs to improve survivorship outcomes. This is essential for not only Arabic women but also for all women situated within patriarchal societies that need autonomy and control of their own health care.