Narrative Expression of the Emotional Experience of Breast Cancer Survivors

Sarah Fox

As of 2015, 2.8 million women in the United States have a history of breast cancer, a number encompassing women currently going through treatment as well as women who have completed treatment (U.S. Breast Cancer Statistics, 2015). These women are breast cancer “survivors”—a complicated term with several definitions. According to some sources, a survivor is someone who has completed treatment (Feuerstein, 2007; Hewitt, Greenfield, & Stovall, 2005; Leigh, 2008), while American society tends to look specifically at breast cancer survivors as those who are “triumphant, happy, healthy, and feminine.” (Kaiser, 2008, p.80). For the sake of this paper survivorship will be defined as beginning with diagnosis and continuing for the remainder of the individual’s life, regardless of whether they have successfully completed treatment or not (Centers for Disease Control and Prevention, 2007; Hewitt et al., 2005; Mollica & Nemeth, 2015; National Coalition for Cancer Survivorship, 2014). With 1 in 8 women developing breast cancer throughout their lifetime, this number of survivors is continually increasing (U.S. Breast Cancer Statistics, 2015).

Some breast cancer survivors see these definitions of survivorship as problematic because they do not include the emotional aspects of the survivor period (Kaiser, 2008). Some women with breast cancer feel uncertainty and guilt about assuming the survivor title because they are not sure if they were sick enough to merit it (Allen et al., 2009; Kaiser, 2008). Others are uncomfortable with the title, which implies being cured, because they fear a recurrence of their cancer (Kaiser, 2008). It is often difficult for survivors to openly discuss their emotional experiences, such as difficulty with the survivor title, because survivorship is seen as a happy period of cure and not one of emotional turmoil (Kaiser, 2008; Little et al., 2002).

The societal and medical definitions of survivorship do not give women suffering from breast cancer the language to discuss their emotional experiences (Centers for Disease Control and Prevention, 2007; Feuerstein, 2007; Hewitt et al., 2005; Kaiser, 2008; Leigh, 2008; Mollica & Nemeth, 2015; National Coalition for Cancer Survivorship, 2014). However, these experiences are critical to understanding the type of emotional care survivors need. The emotional experiences can be seen in the narratives women use to talk about their cancer (Frank, 1998; McAdams & McLean, 2013; Singer, 2004). Narrative theory posits that individuals use narratives to make sense of their life experiences, to form personal identities, and to prepare for the future (Frank, 1998; McAdams & McLean, 2013; Singer, 2004). The narrative types survivors choose to use when discussing their emotional experiences reveal how they attempt to understand those experiences, incorporate them into their identities, and envision their lives after cancer (Thomas-MacLean, 2004). In considering survivor narratives, this paper will answer the question: How do women with breast cancer experience survivorship emotionally, and what types of narrative forms do they use to express their experiences?

Survivorship and Emotional Experience

Breast cancer survivors face a multitude of emotional effects as a result of their survivorship (Allen et al., 2009; Mollica & Nemeth, 2015; Ward, Viergutz, Tormey, DeMuth, & Paulen, 1992). As stated above, some women feel uncertainty and guilt in assuming the survivor title (Allen et al., 2009; Kaiser, 2008). This unease with the survivor title contributes to loss of identity. Because they are uncomfortable with the survivor title, some women cannot accept it. However, many women also feel they cannot reassume their identity before diagnosis because it does not incorporate their cancer experience, leaving them without an identity (Allen et al., 2009; Kaiser, 2008; Little et al., 2002).

Additionally, survivors fear recurrence of their cancer and, even if the cancer does not return, they still face the fear of not being able go back to their pre-cancer lives (Allen et al., 2009). The emotional distress has also been correlated with survivors experiencing PTSD symptoms such as intrusive recollections of their cancer trauma, avoidance of stimuli or thoughts related to the cancer trauma, and hyperarousal (Amir & Ramati, 2002). The emotional distress of breast cancer survivors is influenced by a loss of identity and disruption to the life of the survivor (Little et al., 2002), which lead to feelings of depression, fear, guilt, and uncertainty (Mollica & Nemeth, 2015).

Despite the emotional distress of battling breast cancer, some survivors have reported positive life changes (Allen et al., 2009; Langellier & Sullivan, 1998; Shapiro et al., 1997; Thomas-McLean, 2004). Many breast cancer survivors report increased resiliency, emotional strength (Allen et al., 2009), agency, and self-understanding (McAdams & McLean, 2013; Shapiro et al., 1997) as a result of their cancer experience. Positive changes can also occur in the self-image of breast cancer survivors post-cancer as they come to terms with changes in their appearance after surgery, radiation, and chemotherapy (Langellier & Sullivan, 1998). As survivors learn to express their stories, these positive emotional experiences are intertwined with the negative experiences of survivorship discussed previously.

Narrative Styles

In an effort to grapple with the positive and negative emotional experiences of breast cancer survivorship, women express their experiences through different forms of narratives. Three common narrative themes emerge in the literature: narratives of chaos (Kirkman et al., 2013; Langellier & Sullivan, 1998; Thomas-MacLean, 2004), narratives of change and self-growth (Kirkman et al., 2013; Langellier & Sullivan, 1998; Shapiro et al., 1997; Thomas-MacLean, 2004), and narratives of desire to return to normalcy (Langellier & Sullivan, 1998; Shapiro et al., 1997; Thomas-McLean, 2004).

Narratives of chaos. Narratives of chaos express predominantly negative emotions. The term “chaos narrative,” coined by Frank (1998), is a narrative in which the breast cancer survivor talks of the formerly healthy self as distinct from the post-cancer future self (de Boer & Slatman, 2014). The future self is disconnected in the chaos narrative because the feelings of uncertainty, loss of identity, depression, guilt, and fear manifest as the breast cancer survivor believing they will not return to their normal, pre-cancer self (Frank, 1998; Mollica & Nemeth, 2015; Thomas-McLean, 2004). Narratives of chaos are key in accounting for the juxtaposition of positive and negative experiences in a single survivor’s cancer narrative (Kirkman et al., 2013; Langellier & Sullivan, 1998; Shapiro et al., 1997; Thomas-McLean, 2004). Yet, other types of narratives, aside from chaos, also incorporate the positive and negative emotions inherent to the survivor experience (de Boer & Slatman, 2014; Frank, 1998; Kirkman et al., 2014; Shapiro et al., 1997).

Narratives of change and self-growth.

Quest narrative. Frank’s (1998) quest narrative embodies the idea of change and self-growth because it is a narrative in which survivors learn something from their traumatic experience by reclaiming life, bringing about positive change, and sharing this learning with others (Thomas-McLean, 2004). Breast cancer survivors who use this narrative to discuss their cancer experiences convey a sense of “accept[ing] life unconditionally” (Frank, 1998, p. 205). The quest narrative can be seen in the way women with breast cancer talk about their breasts. Some women who speak of their post-cancer breasts in relation to their sexuality report seeing the physical and personal changes when they look in the mirror. In order to account for this change, they cultivate a new idea of what the sexual breast, which encompasses how the breast appears and functions sexually, can look like (Frank, 1998; Langellier & Sullivan, 1998; Thomas-McLean, 2004). The breasts after cancer may show scarring from mastectomy or lumpectomy as well as skin damage from radiation, all of which must be re-envisioned by the survivor in order to form a new image of the sexual breast (Langellier & Sullivan, 1998). The quest narrative and the various ways it is employed serves as a tool for survivors to gain knowledge from their cancer experience.

Redemption narrative. The redemption narrative is seen when survivors discuss a positive experience coming from the negative experience of their cancer (McAdams & McLean, 2013). This type of narrative can be seen in finding a new, positive definition of sexuality after breast cancer (Langellier & Sullivan, 1998; McAdams & McLean, 2013). The use of redemption narratives to discuss and make sense of important life events is positively associated with wellbeing (McAdams, Reynolds, Lewis, Patten, & Bowman, 2001), evidencing the helpfulness of narratives of change and self-growth in dealing with the emotional experience of survivorship.

Meaning making narrative. Narratives of change and self-growth are also used by survivors to find value in their cancer experiences (Kirkman et al., 2014; Langellier & Sullivan, 1998; Shapiro et al., 1997; Thomas-MacLean, 2004). McAdams and McLean (2013) delineate the meaning making narrative as one in which the individual telling the narrative is able to find meaning from the event. Meaning can be found when women talk about the gendered breast post-cancer in terms of how it symbolizes femininity. Some women reported making new meaning of what gendered, feminine breasts look like, similar to finding new meaning as to what the sexual breast looks like (Langellier & Sullivan, 1998). However, some women struggled while making this meaning out of their experience because of the tension between how their new breasts look post-cancer and the social ideal of what feminine and sexual breasts look like, exhibiting chaos within their meaning making narrative (Frank, 1998; Langellier & Sullivan, 1998; Thomas-McLean, 2004). Some women also talked about their breasts in a functional sense as the source of nourishment for children and maternal meaning (Langellier & Sullivan, 1998). This was often discussed in terms of mourning the loss of the functional breast post-cancer, again exhibiting the chaos and fear of not returning to normal (Frank, 1998; Langellier & Sullivan, 1998; Thomas-McLean, 2004). Despite the influence of chaos (Frank, 1998; Langellier & Sullivan, 1998; Thomas-McLean, 2004), the meaning making, redemption, and quest narratives show survivors’ longing to find positive experiences out of their cancer experiences (Frank, 1998; McAdams & MacLean, 2013; Thomas-MacLean, 2004).

Narratives of desire and return to normalcy.

Coherent positive resolution narrative. Breast cancer survivors express the desire for a return to normalcy and for a linear storyline in several narrative forms (Frank, 1998; McAdams & McLean, 2013; Shapiro et al., 1997; Thomas-McLean, 2004). The coherent positive resolution narrative is based on the desire for the survivor’s cancer experience to result in a happy ending (McAdams & McLean, 2013). This type of narrative is supported by the meaning making narrative, which results in the positive resolution of acquiring new meaning, the redemption narrative, which transforms the negative experience into a positive one, and the quest narrative, which ends in positive change (Frank, 1998; Thomas-McLean, 2004; McAdams & McLean, 2013).

Back to “normal” narrative. Many women see the ideal coherent positive resolution as a return to the pre-cancer self, expressing this in the back to “normal” narrative which distinguishes the sick self from the true self, viewing the cancer as a temporary state (McAdams & McLean, 2013; Shapiro et al., 1997). This narrative does not focus on change as the quest, agency, or meaning making narratives do, but simply on the return to the healthy self in a linear fashion of health to sickness and back to health (Frank, 1998; McAdams & McLean, 2013; Shapiro et al., 1997; Thomas-McLean, 2004). This narrative can also be referred to as a restitution narrative in the literature, as it refers to the restoration of health after sickness.

The back to “normal” narrative can be viewed as a medicalized narrative where medical procedures and treatments are often discussed as events, and the cancer is viewed as the enemy (Frank, 1998; Shapiro et al., 1997; Thomas-McLean, 2004). Back to “normal” narratives are used when women talk about their breasts post-cancer in a medical framework (Frank, 1998; Langellier & Sullivan, 1998; Shapiro et al., 1997). Medicalized breast talk discusses the breast as separate from the body, which can be removed via surgery if that is the necessary step for a coherent positive resolution (Langellier & Sullivan, 1998; McAdams & McLean, 2013). These narratives convey a desire to bring certainty to the uncertain and unclear experience of breast cancer for survivors (Frank, 1998; McAdams & McLean, 2013; Mollica & Nemeth, 2015). In this effort, narratives that focus on the return to normalcy have the danger of masking the chaos that is inherent in the ambiguity of the breast cancer experience (Frank, 1998; McAdams & McLean, 2013; Mollica & Nemeth, 2015; Thomas-McLean, 2004). Still, back to “normal” style narratives are the preferred narrative for many women and society as a whole because they are seen as being able to bring a degree of control to the experience (Frank, 1998; Thomas-McLean, 2004). This is an understandable urge in women who are going through the difficult emotional and physical experience of breast cancer survivorship because it is such an uncertain, and fear-inducing situation (Mollica & Nemeth, 2015). This further evidences the purpose of narratives as a way of making sense of experiences, whether they are positive, negative, or ambiguous (Frank, 1998; Langellier & Sullivan, 1998; McAdams & McLean, 2013; Shapiro et al., 1997).

Conclusion

The experience of survivorship for women with breast cancer encompasses both positive and negative emotions, which can lead to significant emotional distress as they attempt to make sense of the changes in their lives (Allen et al., 2009; Amir & Ramati, 2002; Kaiser, 2008; Little et al., 2002; Mollica & Nemeth, 2015; Shapiro et al., 1997; Thomas-McLean, 2004; Ward et al., 1992). Survivors may express their experiences through several narrative forms in order to gain a better understanding of their survivor experience (Frank, 1998; Langellier & Sullivan, 1998; McAdams & McLean, 2013; Shapiro et al., 1997). Just as a single survivor can experience multiple and conflicting emotions, a single narrative can employ multiple and possibly competing narrative types, such as chaos narratives within quest narratives, owing to the fact that all the narrative styles are different yet overlapping with each other (de Boer & Slatman, 2014; Frank, 1998; de Boer & Slatman, 2014; Kirkman et al., 2014; Shapiro et al., 1997). Because survivorship is so complex, many survivor narratives must include multiple types of narratives in order to capture the emotional experience (Allen et al., 2009; Frank, 1998; Kaiser, 2008; Langellier & Sullivan, 1998; Little et al., 2002; McAdams & McLean, 2013; Shapiro et al., 1997; Thomas-MacLean, 2004).

The literature on the experience of survivorship and use of narrative forms to express the breast cancer experience is valuable in bringing much-needed attention, and thus intervention and aid, to this additional stage of recovery. However, there are several limitations to the current literature. Several of the limitations involve threats to external generalizability. A majority of the literature on narrative expressions of survivorship has small and homogeneous sample sizes, making generalizing to other populations difficult (Allen et al., 2009; Amir & Ramati, 2002; Kirkman et al., 2014; Langellier & Sullivan, 1998; Shapiro et al., 1997; Thomas-MacLean, 2004; Ward et al., 1992). Additionally, many studies use a cross-sectional interview design, as opposed to a longitudinal design, which only allows for a single narrative at one time point, thus limiting the information which can be gathered (Allen et al., 2009; Amir & Ramati, 2002; Kirkman et al., 2014; Langellier & Sullivan, 1998; Shapiro et al., 1997; Thomas-MacLean, 2004).

These limitations should be addressed in future research. This future research should also look toward how individual differences influence narrative expression, such as cultural background, age, and stage of cancer. Further research is also necessary to identify factors that may be beneficial in assisting survivors through the transition to recovery, such as guidance from veteran survivors (Mollica & Nemeth, 2015). There is a crucial need for a greater understanding of the survival process and for methods of providing the proper support to aid these women going through the survivor process. The literature thus far has created an understanding of the survivor experience and a base for future research on how to help survivors navigate their experience.

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