“I wish I'd known”: patients' suggestions for supporting sexual quality of life after diagnosis with metastatic breast cancer

ABSTRACT

Research has found that breast cancer and its treatments can have severe consequences for patients' sexual quality of life (SQoL); however, patients often report not knowing about possible impacts of treatment on their sexual well-being. This gap in information provision has been especially prominent for those diagnosed with metastatic breast cancer (MBC). To address the development of resources for patients diagnosed with MBC, the current study examined patients' descriptions of resources needed to support their SQoL in palliative care. Semi-structured interviews were conducted with 32 women diagnosed with MBC, aged 35--77 in a US breast cancer practice. Patients were asked to describe those issues that were most pressing and the supports they would find most valuable to improving their SQoL. Thematic analysis focused on what was missing in their care and what they wished they knew (or wish they had been told) about cancer and their SQoL. Four themes were developed from the interviews: (1) unexpected embodied loss and mourning; (2) silences; (3) desires for others' expertise, and (4) worries about normalcy. Findings across these themes highlighted how patients' psychosexual needs included both pressing instrumental needs as well as desires for support from oncological medical providers concerning the subjective experience of breast cancer.

KEYWORDS:

• Breast cancer
• metastatic disease
• sexuality
• palliative care
• qualitative research
• information needs

Acknowledgements

The authors wish to thank Susie Robinson, Harley Dutcher, Eleanor Stewart, Maya Massing-Schaffer, and all of the research assistants who have been a part of this study. And my sincerest thanks to the participants in the study who were brave and kind enough to give us their time and energy.

Disclosure statement

No potential conflict of interest was reported by the author.

Additional information

Funding

This work was supported by the Comprehensive Cancer Center, Cancer Research Committee, University of Michigan; and the Institute for Research on Women and Gender, University of Michigan.

Notes on contributors

Sara I. McClelland

Sara McClelland is an assistant professor of Women's Studies and Psychology at the University of Michigan. Her research focuses on entitlement, expectation, and how much people believe they deserve in their sexual lives as a result of stigmas around sex, sexuality, and identity. She examines these questions in research with adolescents and women near the end of life.