The meaning of the survivor identity for women with breast cancer

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Abstract

“Survivor” has become a ubiquitous and largely unquestioned term in culture and cancer discourse. While anecdotal evidence suggests women with breast cancer find fault with survivor images and discourse, the extent to which women identify with or reject the survivor identity has not been empirically studied. This paper examines whether women treated for breast cancer embrace survivorship. Data come from 39 in-depth interviews with women in the United States who completed treatment for breast cancer 3–18 months prior to the interview. Despite the positive meanings attached to survivorship, many women altered the meaning of survivorship or rejected survivorship. In particular, the survivor discourse alienated women who struggle with the threat of recurrence, who feel their cancer experience was not severe enough to merit this title, or who desire a private disease experience. These findings illustrate the failure of our cultural conceptions of cancer to adequately reflect lived experience and highlight how individuals actively “craft” illness meanings.

Introduction

In recent decades breast cancer has become a highly visible and well-funded disease in the United States. Pink ribbons symbolizing breast cancer and events to raise money for breast cancer research are a ubiquitous part of the cultural landscape and represent a dramatic departure from the stigma, secrecy, and blame previously attached to breast cancer (King, 2006, Leopold, 1999, Plotkin, 1996, Sontag, 1979). Instead of succumbing to a secret and shameful disease, women with breast cancer today are openly honored as “survivors”. Intuitively, it makes sense that the cultural images of breast cancer will shape the experiences of women with the disease. In fact, the breast cancer culture implies that women with the disease readily embrace the identity of survivor. However, while studies have examined the changing cultural representations of breast cancer (Black, 1995, Brown et al., 2001, Fosket et al., 2000, King, 2006, Klawiter, 1999, Leopold, 1999, Patterson, 1987, Sontag, 1979, Thorne and Murray, 2000), researchers have not empirically considered how the new survivor identity shapes the disease experiences of women with breast cancer.

In this article, I consider the extent to which women embrace the survivor identity following breast cancer treatment. I begin with an overview of the dominant representations of breast cancer survivors and the criticisms of these representations. I then summarize two complementary approaches for understanding how constructions of breast cancer affect women. The first approach posits that survivorship is a tool that women can use to frame their disease experience (Swidler, 1986, Swidler, 2001). According to the second approach, survivorship is “craftwork” (Frank, 1995), whereby women consciously construct their lives and the meaning of cancer. After describing my research methods, I provide data from in-depth interviews with 39 women in the United States who recently completed treatment for breast cancer. In the data presented here, a number of women did embrace the survivor identity. Other women crafted new meanings of survivorship. Additionally, some women explicitly rejected the label for failing to account for the possibility of recurrence, for being overly heroic, or for being too public of an identity. I discuss the implications of these findings for women with breast cancer and for the sociology of health and illness.

Section snippets

The dominant image of the survivor

The term “survivor” entered cancer discourse in 1985 when Dr. Fitzhugh Mullan described his cancer experience in a New England Journal of Medicine article, “Seasons of Survival” (Kolata, 2004, Mullan, 1985). Dr. Mullan later established the National Coalition for Cancer Survivorship (NCCS), which worked to shift the perception of cancer patients from victims to survivors and formally defined a survivor “from the time of diagnosis and for the balance of life” (NCCS, 1995).

The word survivor is

Survivorship as a cultural tool and survivorship as craftwork

The cultural sociology of Swidler, 1986, Swidler, 2001 provides a framework for conceptualizing how the meanings of survivorship impact women with breast cancer. According to Swidler (2001), individuals possess knowledge of a variety of cultural meanings. In Talk of Love (2001), Swidler is interested in how people use some cultural materials while rejecting others, especially as they attempt to “retool” their lives following a major life event or transition. The identity of breast cancer

Methods

Data come from in-depth interviews conducted between 2003 and 2006 with 39 women who completed treatment for breast cancer 3–18 months prior to the interview. Treatment is defined as surgery, chemotherapy, or radiation. The sample includes individuals undergoing adjuvant treatment, such as those taking Tamoxifen. One advantage of this sample is that the women were interviewed within 18 months of treatment, whereas samples used in much of the survivorship literature includes individuals of many

Accepting the survivor identity

Rarely did women spontaneously refer to themselves as survivors. Instead, the title of survivor was typically used to describe others. For example, a woman might say, “My aunt is a five-year survivor.” When asked, “Do you refer to yourself as a survivor?” Twenty women said yes. Even among the women who identified as survivors, the meaning of the survivor identity varied. Some women clearly embraced the dominant meanings of survivorship. Mary (age 57 years) was one such woman. When asked if she

Discussion

These findings suggest that dominant representations of disease pose challenges for individuals attempting to make sense of illness even when the disease meanings are positive. Truthful, or what Frank (1995) refers to as “good” stories, are more desired than positive, cheerful stories. For breast cancer, a good story would acknowledge the long-term role of cancer in women's lives and their fears of recurrence. Such a framework would reduce the separation of the private and public experiences of

Conclusion

Views of breast cancer have changed dramatically in recent decades. Women with breast cancer today will face less shame, have access to greater information about their disease, and openly receive the support of others. This is an overwhelmingly positive change for breast cancer patients. However, in constructing a positive, cure-oriented definition of survivorship, the breast cancer culture has left many women searching for representations which acknowledge their fears and the continued

Acknowledgments

This article is based on work supported by the National Science Foundation under Grant No. 0425398 and by the National Cancer Institute R25TCA57699-14. I would like to thank the following people for their helpful comments on this paper: Jane McLeod, Bernice Pescosolido, Elizabeth Armstrong, Betsy Fife, Richard Warnecke and Carol Ferrans.

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