Experiences of Uncertainty and Invisibility: Women's Accounts of Living with a Rare Cancer — ASN Events
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Experiences of Uncertainty and Invisibility: Women's Accounts of Living with a Rare Cancer (#389)

David Wyld 1 2 , Alexandra Gibson 3 , Alex Broom 3 , Stefanie Plage 3 , Annette Cubitt 2 , Zarnie Lwin 1 2
  1. School of Medicine, University of Queensland, Brisbane, Queensland, Australia
  2. Department of Medical Oncology, Royal Brisbane Hospital, Herston, QLD, Australia
  3. School of Social Sciences, University of New South Wales, Sydney, NSW, Australia

Aims

The aim of this pilot study was to explore the unique issues that women experience while living with neuroendocrine tumours (NETs), a rare, slow-growing cancer, and to identify areas for future research directions. 

Methods

We examined the accounts of seven women with NETs, who were part of a largersociological oncology project. Semi-structured, individual interviews were conducted with 80 women with cancer living in Queensland. The interviews were transcribed verbatim, coded using NVivo10 software, and analysed using qualitative interpretive methods to explore women’s experiences of cancer from their lived perspective. Here we focus on the NET interviews.

Results

Five major interrelated themes emerged from the data. (1) Women perceived a significant lack of public awareness, knowledge about, and recognition of, their illness. (2) In particular, they described difficulties in timely, accurate diagnosis and finding oncologists who specialised in NETs. (3) They felt required to become self experts in NETs, to compensate for the shortage of information. (4) Some described research using the Internet and participating in online communities, to gain information and support from other NET patients. (5) Finding an oncologist who specialised in NETs was experienced as enabling, reduced women’s perceived burden of responsibility over information-seeking and decision-making, and reinforced trust in doctors while undergoing NET treatment of an experimental nature.

Conclusions

Women experienced NETs as an invisible illness, based on their unchanged appearance, how others perceived them, doctors’ limited knowledge of NETs, and the lack of public awareness about this rare illness. This study highlights the potential for women’s needs to be overlooked, owing to this invisibility. A lack of information about NETs was a significant problem for these women. It is vital that women are made aware of health professionals and services that are locally available, to assist and reassure them through a prolonged, uncertain illness. Further research is required to explore the needs and experiences of all patients with NETs

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