Experiencing Cancer. An Ethnographic Study on Illness and Disease.

Abstract

Cancer is seen as a 'dread disease' with a long and powerful history that remains resistant to defeat. It is a byword for suffering, pain and death. An unprecedented level of research spending and biomedical engagement offering new treatment options and hopes for a cure goes hand in hand with patient-led movements disseminating widespread public narratives of hope and survivorship. A key paradigm in these public narratives of hope and cure has been early detection of disease, with breast cancer, as the most frequent cancer among women, at the forefront of early detection campaigns. This chapter investigates the experiences behind the public face of breast cancer. It interrogates what it means to have breast cancer in the light of heroic stories of survivorship and fight using the theoretical concepts of illness-the subjective experience of feeling unwell-and disease-bodily pathologies that are identified through biomedical diagnostic technologies. With early detection becoming the primary mode of practice in breast cancer, illness has  to be re-conceptualized. If a woman is to undergo treatment after a diagnosis of asymptomatic disease-without symptoms being present in her lifeworld-she has to cognitively understand the severity of the disease, and assume that she would die without treatment. The absence of bodily experiences of symptoms is irrelevant: it is the provision of information through which illness can manifest. The shock of diagnosis, as so often illustrated in cancer narratives, is therefore necessary in order to transform disease into an illness trajectory associated with biomedical treatment. The particular illness experiencehas profound and long-lasting consequences for a woman's life. Understanding the suffering associated with such disease conceptions as a necessary part of the illness experience could help us to improve health care services for those afflicted.