Cancergazing? CA125 and post-treatment surveillance in advanced ovarian cancer

Abstract

Post-treatment surveillance of advanced ovarian cancer involves regular testing of asymptomatic patients using the CA125 test. This practice is based on a rationale that is not supported by evidence from clinical trials. This paper aims to stimulate critical reflection concerning the effect of investigative tests on clinical decisions and interactions, and the experience of illness, particularly in the context of advanced malignant disease. Drawing on the idea of the "medical gaze", and building on previous health communication research, we present an analysis of in-depth interviews and psychometric tests collected in a prospective study of 20 Australian women with advanced ovarian cancer conducted between 2006 and 2009. We describe the demands placed on patients by the use of the CA125 test, some hazards it creates for decision-making, and some of the test's subjective benefits. It is widely believed that the CA125 test generates anxiety among patients, and the proposed solution is to educate women more about the test. We found no evidence that anxiety was a problem requiring a response over and above existing services. We conclude that the current debate is simplistic and limited. Focussing on patient anxiety does not account for other important effects of post-treatment surveillance, and educating patients about the test is unlikely to mitigate anxiety because testing is part of a wider process by which patients become aware of a disease that -once it has relapsed -will certainly kill them in the near future.

From personal challenge to technical fix: the risks of depersonalised care

“…But we also recognise that similar concerns have been raised elsewhere in the literature (Janssen & MacLeod 2010, Jordens et al. 2010, McCreaddie et al.…”

“…But we also recognise that similar concerns have been raised elsewhere in the literature (Janssen & MacLeod 2010, Jordens et al 2010, McCreaddie et al 2010, Rogers et al 2005. In addition to further research to understand the phenomenon, academic endeavour needs also to contribute ideas about how systems (Rogers et al 2005) can change to better address need.…”

“…Western cultures currently place great value on scientific knowledge offering truth about the world, with the promise that understanding brings an ability to change the world. Patients have become increasingly initiated into medical ways of seeing and knowing, ways that have become internalised and conveyed in social networks (Marks 2002, Jordens et al. 2010).…”

“…There is a need for greater public debate and awareness of the inherent uncertainty in scientific thinking, and hence of the distinction between quality of care and 'certain' outcomes (Christakis 1999, Fallowfield 2001. Jordens et al (2010) argue the need to recognise the risk of both lay people and experts being 'captivated' by technology, but calls for a less simplistic approach to the problem than simply identifying a need for 'more education'. Instead, we need a more complex and integrated shared understanding of the risks and benefits of care options and approaches described by scientific advances.…”

The sociology of cancer: a decade of research

“…), regained wholeness (Crompvoets ) and in some cases integrated test results into ‘technoscientific illness identities’ (Bell and Kazanjian , Jordens et al . , Sulik ). This literature challenged dominant narratives of fighting cancer, and depictions of cancer as prompting personal growth and positivity (Solbraekke and Lorem , Willig ), echoing popular criticism of these tropes (e.g.…”