“The emptiness of her not being there”: young women’s lived reality of familial breast cancer

Submission note: A thesis submitted in total fulfilment of the requirements of the degree Doctor of Philosophy to the La Trobe University Rural Health School, Faculty of Health Sciences, La Trobe University, Bendigo.

Cancer is a regular occurrence in today’s society. It is more common for people to have an affected family member or friend than to not and as a result the impacts of cancer are broad reaching (Breast Cancer Care 2011). Young women who grow up within the context of familial breast cancer can experience a range of associated impacts. It can pose many challenges and realities that are often not faced at such a young age, all of which can shape their current lives and future prospects. Despite this, young women’s lived experiences of familial breast cancer is under researched and not considered a priority area. This qualitative phenomenological study provides an in-depth exploration of what it means for young rural women to grow up within the context of familial breast cancer. Eighteen young women from various towns across Victoria and varying backgrounds of familial breast cancer were interviewed and their experiences documented. Phenomenological hermeneutic analysis was undertaken, focusing on the lived experiences. This analysis revealed that the lived experience of familial breast cancer is unique. Common themes can be found in these women’s stories; none of them were unaffected by the experience. They all spoke of using their family history as a means of evaluating their own risk and future prospects of developing cancer. For those with limited family histories this could provide reassurance, whilst for those with significant continuing diagnoses it reinforced the certainty that they would experience a personal diagnosis. Many reported that it altered their everyday Being-in-the-World and their view of life and what was important. For those who had experienced the death of their mother the focus was less on the cancer itself and more on the profound and continuing impact of their loss. Regardless of their level of worry, it was evident that familial breast cancer has a temporal impact. That is, the young women reflected on what had happened in the past as a way of informing their current lives and of considering future possibilities for themselves and their families.