Varieties of suffering: Living with the risk of ovarian cancer

Abstract

Risk is a defining feature of late modernity. While it is acknowledged that risk has come to mean danger, the sociological literature suggests that risk is becoming abstracted from reality and presents it as lacking emotional content. This paper argues that the lived experiences of risk should no longer be overlooked. Using data collected in a qualitative interview study of women who have a family history of ovarian cancer, it demonstrates that women's understanding of risk is framed by their previous experiences of death and dying and perceived as connoting a future of suffering and loss for themselves and others. It is argued that managing risk in this context may be less an act of rational self-management than the response of an emotional and relational self.

Keywords:

• Risk
• ovarian cancer
• qualitative
• emotion
• genetics

Acknowledgements

Particular thanks go to all of the women who took part in this study, the Steering Committee of the UKCCCR Familial Ovarian Cancer Register, Carole Pye, Amy Storffer-Isser, the staff at St Bartholomew's and the Royal Marsden Hospitals particularly, Laura Hitchcock, Karen Cook, Karen Sibley, Ian Jacobs, Audrey Ardern-Jones, Ros Eeles, Chris Haracopus, Martin Gore and James McKay. I am, as usual, grateful to Julia Lawton for reading this, discussing these ideas and for her unstinting encouragement when the deadlines piled up during May 2005. Finally, I would like to thank Iain Wilkinson, for inviting me to contribute to this special issue and for his helpful feedback on an earlier version of this paper. This research was supported by a grant from WellBeing (Grant No: HI/97) awarded to Nina Hallowell, James Mackay, Martin Gore, Martin Richards and Ian Jacobs. The assistance of these co-investigators is gratefully acknowledged.

Notes

1 For Douglas (1992), the problem of risk is one of justice thus, one of her main concerns is to show how risk has become politicized within our culture (see also Beck 1992).

2 Recently published research confirms that prophylactic oophorectomy reduces the risks of developing cancer in BRCA1 and 2 mutation carriers (Rebbeck et al. 2002).

3 The study was approved by the Cambridge University Psychology Ethics Committee and the Cambridge, Royal London Hospitals and Royal Marsden LRECs. Self-chosen pseudonyms are used throughout this paper to preserve participants' anonymity.

4 Ascites, the build up of fluid within the peritoneal (abdominal) cavity, is commonly associated with ovarian disease and the development of metastatic cancer of the peritoneum.