Abstract
Staging numbers powerfully shape breast cancer narratives. Used by physicians to tell women about their breast cancer diagnoses, these numbers are integral to treatment decision-making. In women's calculus of survival, staging numbers portend hope and dread; they speak to how much lifetime remains. Drawing on 92 interviews with breast cancer survivors in California, the author argues that staging numbers represent, and function as, a form of illness narrative. Similar to more traditional illness narratives, they impart meaning to the cancer experience; they create order and temporal orientation. Numbers also offer women a way of negotiating possible alternative narrative endings. However, numbers do not capture the richness of lived experience and are, therefore, limited guides to treatment decision-making. Physicians can learn from cancer survivors' understandings of staging numbers how to communicate prognoses more effectively; they can become better collaborators in constructing narratives that focus on living a life, and not the fear of life's ending.
TopIntroduction
Narratives convey individuals’ understanding of illness (Brody, 1987; Hydén, 1997; Kleinman, 1988; Riessman, 1990) within the context of particular lives (Clark & Mishler, 1992). Numbers are abstractions that do not specifically refer to any individual life (Gould, 1991/2013). Yet, numbers shape breast cancer narratives in ways that become consequential for women’s treatment decision-making. In this article, I examine a particular set of numbers, called staging numbers. These numbers are used to tell women about their breast cancer diagnoses.
I examine how staging numbers weave through women’s stories, and what these numbers come to mean in their experiences of illness. I argue that cancer staging numbers represent, and function as, a form of illness narrative.1 Similar to more traditional illness narratives, they impart meaning to the cancer experience; they create order and temporal orientation. Although a cancer diagnosis incorporates multiple tumor characteristics, staging is often the most salient aspect for women.
Cancer staging is a clinical way of describing the severity of a newly diagnosed cancer tumor. Staging numbers (0 through IV) play an important role in physician-patient communications. For physicians, staging helps determine a patient’s treatment options and recommended treatment plan (U.S. National Institutes of Health, National Cancer Institute [NCI], n.d.-b, para. 1). As explained by the American Cancer Society (ACS, 2022a, para. 5), staging is “a way for doctors to describe the extent of the cancer when they talk with each other.” However, for women who have been diagnosed with breast cancer, staging speaks most importantly to questions about survival and how much time remains.
I draw on 92 in-depth interviews I conducted 2011–2017 with women ages 25–87 in a medically underserved region of Southern California, USA. Women were recruited through healthcare facilities, cancer organizations, and community events such as health fairs or breast cancer walks. Detailed transcripts of audio-recorded interviews were analyzed in an iterative process, with emerging interpretations tested and retested against the empirical data (Pope et al., 2000). The research was guided by an inductive methodology known as grounded theory (Charmaz, 2006; Corbin & Strauss, 2008; Glaser & Strauss, 1967), meaning that theory emerged from, and was grounded in, the data. This approach was developed specifically for research in healthcare settings (Glaser & Strauss, 1965; Strauss et al., 1984) and patient experience of illness (Charmaz, 1990, 1991; Kagan, 1997).
The interviews I conducted explored the meanings of treatment and survivorship from women’s individual perspectives and in their own words. I focus here specifically on the meanings women associated with staging numbers. Similar to other ethnographers, I was interested in how these terms were used and understood, as well as how individual terms related to other concepts within larger systems of meaning (Spradley, 1979). When citing from my interview data, I replaced all real names with pseudonyms to protect the privacy of interview participants (see Table 1). I first discuss how women understood their place within the system of cancer staging. Women told stories about their staging in relation to other women, but also in relation to the temporality of diagnosis. I then discuss how women associated staging with treatment decision-making. These stories illustrate how women understood physicians’ explanations of their disease, and how they infused staging numbers with their own calculus of survival.
Key Terms in this Chapter
Cancer Survival Statistics: Numeric expressions based on the percentage of people diagnosed with the same stage of cancer who are still alive after a specified period of time, usually a period of five years. Several different measures are used to estimate survival (such as overall survival, cancer-specific survival, or relative survival). These estimates describe population trends and, therefore, can be confusing for individuals who want to know their own personal chances of surviving cancer.
Narrative Co-Construction: Involves collaboration between patient and physician in jointly creating a meaningful illness narrative.
Cancer Staging: A numeric system that describes the location, size, and extent to which cancer has spread within the body. Staging indicates the severity of the disease and its likely prognosis.
Grounded theory: A systematic research methodology developed in the 1960s for healthcare research, now used in many different fields, in which qualitative data collection and analysis inform each other in an iterative process. Grounded theory is particularly useful for exploring individuals’ understanding of illness and their interactions with the healthcare system.
Narrative Time: Refers to the temporal organization of a narrative. Narrative time transforms the chronological succession of lived human experience into a meaningful construction oriented towards a particular ending.
Cancer Survivor/Survivorship: In the U.S., individuals are considered cancer survivors from the time of their cancer diagnosis throughout the remainder of their lives. However, the common perception of individuals who have experienced cancer is that survivorship begins only after cancer treatment has been completed.
Illness Narrative: A first-person narrative in which individuals relate, interpret, and assign meanings to their illness experience.
Health Numeracy: The ability to use, and understand, numerical information in treatment decision-making. Health numeracy plays an important role in provider–patient communications about disease risk and prognosis.