The Sounds of Silence: The Lived Experience of Men Diagnosed with Breast Cancer: The perspectives of Men and Healthcare Providers

Breast cancer is the most frequently diagnosed cancer among women. Though it is typically perceived as a “woman’s disease,” men can be diagnosed with it as well, and approximately 1% of cases represent male breast cancer. The fact that this disease is perceived as one with which only women are diagnosed is reflected in the medical, academic, and social fields, in which male breast cancer is an under-researched and marginalized subject. This study was designed to give voice to the experience of men diagnosed with breast cancer.

Regardless of its location in the body, a cancer diagnosis is overwhelming, involving significant emotional distress and uncertainty, and can be experienced as life-threatening. These experiences serve as fertile ground for the vast and diverse research conducted in the psycho-oncology field. However, for men diagnosed with breast cancer, the disease’s gender identity carries additional implications. Whereas within the psycho-oncology field breast cancer is the most researched malignant disease, the research on the psycho-social aspects of male breast cancer is limited. Furthermore, the limited research that does exist tends to neglect men’s emotional experience of the disease. Therefore, the purpose of this research was to expand on and deepen the understanding of the illness experience of men diagnosed with breast cancer, giving a significant place to the emotional characteristics of their experience.

The current study was founded on Berger and Luckmann’s social constructivism principles (Berger and Luckmann, 1966) and drew on three theoretical frameworks: the social constructivism of illness; masculinities (Connell, 1995); and Hochschild’s feeling rules and emotion work concepts (Hochschild, 1979). Furthermore, as this research was designed to comprise a collection of articles, each article relied on additional theories that were relevant to the specific discussion and arguments of the article in question.

The study was conducted using a qualitative approach, the origins of which lie in the phenomenological tradition and specifically in the phenomenology of illness. This approach was deemed appropriate as the focus of the study was on what it means to be a man diagnosed with breast cancer and the psychosocial implications of this experience.  Semi-structured interviews were conducted with 16 men who had been diagnosed with breast cancer over the previous 10 years. In order to provide a wider perspective on the construction of men’s experience, 19 medical health professionals – including surgeons, oncologists, and nurses from five hospitals, all experienced in treating breast cancer – were interviewed as well. Interviews were transcribed verbatim, and data analysis was conducted using Braun and Clarke’s thematic analysis approach (Braun and Clarke, 2006).

This dissertation is composed of three papers. Each paper addresses a principal facet that sheds light on a different aspect of the participants’ experience. The first paper places men’s experience of their post-surgical body at the center of investigation and conceptualizes it through theories related to body image and masculinity (Cash, 2002; Connell, 1995; Higgins, 1987), taking into account the Israeli context of body and masculinity. The paper describes men’s encounter with their breast-less bodies and reveals a damaged body image. Their corporeal bodies are experienced as strange and abnormal both to themselves and to others.  The operated-on chest is perceived as disfigured, ugly, and violated, and becomes an object that makes manifest the meaning of being a man diagnosed with breast cancer.

Drawing on the concept of stigma (Goffman, 1963), on engagement versus disengagement responses to stress (Compas et al., 2001), and on Lamont’s work regarding destigmatization (Lamont, 2009), the second paper describes the ways men cope with the threat of being stigmatized as a result of being diagnosed with breast cancer. Findings show that men manage stigmatizing situations using situational disengagement responses, such as concealment and selective disclosure, and negotiate group boundaries with the goal of destigmatizing male breast cancer. These coping styles reveal the men’s efforts to disengage from the discrediting attributes of male breast cancer, to distance themselves from female breast cancer, and to avoid emasculation.

The third paper relies on findings from data analyses of interviews with healthcare professionals. It explores participants’ perceptions of the implications of the surgical treatment of male breast cancer for men, which is routinely mastectomy without breast reconstruction, and the extent to which these implications are considered in medical decision-making. Findings revealed that study participants (i.e., healthcare professionals) were aware of the emotional difficulties that men face following mastectomies; however, these difficulties are not taken into consideration in surgical decision-making. The findings presented in the article suggests that healthcare professionals’ socially constructed perceptions may affect cancer medical care.

The emotional aspects of men’s illness experience were not directly brought up in the men’s narratives, raising the question of whether the data collected in the research reveals this understudied aspect of men’s experience. In the discussion chapter, I address this question and argue that although men’s illness narratives are not characterized by explicit emotional references, their illness experience is characterized by three main emotional aspects: shame, otherness, and loneliness. Drawing on the theoretical foundations presented in the dissertation’s introduction, I offer possible explanations for the silence on this front and argue that the emotional characteristics related to this experience are “discussed” in different ways. The first has to do with the argument I propose that there seems to be no acknowledgment of men’s emotions and difficulties. This argument is based on the findings that revealed healthcare professionals’ disregard of men’s emotional experience. Using Doka’s disenfranchised grief theory (Doka, 1989), I argue that there are two main reasons that healthcare professionals ignore men’s emotional difficulties. The first has to do with disenfranchising the loss of the male breast, especially when compared to women’s loss of their breast. Similarly, the second has to with perceiving men as unrecognized grievers.

Another reason participants may not have explicitly described their emotional difficulties could potentially be attributed to two theoretical concepts presented earlier in the dissertation: feeling rules and emotion work (Hochschild, 1979). I argue that men are subject to gendered feeling rules that regulate the ways they are expected to feel and express their emotions, resulting in “restrained emotional talk.” However, the emotional experience is present in men’s accounts, mainly through their body experience, which is described in the first paper, and as a reflection of their coping styles, illustrated in the second paper. The fact that men’s emotional experience is mediated through what they say about their bodies and through their coping styles illustrates that men’s emotion work enables them to perform a hegemonic masculine identity.

The study findings contribute to the limited body of knowledge on male breast cancer, presenting and discussing three issues that have not yet been explored in other studies on the illness experience of men diagnosed with breast cancer: the experience of the post-surgical body, the ways men respond to and cope with being diagnosed with what is perceived to be a woman’s disease, and finally a first attempt to characterize men’s emotional experience. In addition, the fact that the study also examined healthcare professionals’ perceptions of male breast cancer reveals the blind spot that exists in the surgical treatment of men: namely, there’s a recognition, but a neglect, of the emotional difficulties this disease causes. The current research may therefore contribute to men’s medical treatment by offering them surgical solutions – such as breast conservation or breast reconstruction surgeries – that take their difficulties into consideration. In addition, the research findings provide a deeper understanding of men's experiences and needs, based on which tailored psychosocial services can be built and offered to men. Finally, the study emphasizes the importance of having healthcare professionals listen to what men are saying, beyond the actual words they use, and to learn to recognize their unspoken difficulties: to hear the sounds of silence.