“My biggest frustration was getting people to understand. People make an assumption that I had breast cancer a first time but I had no understanding about any of it, including the treatment or how I would cope.” (Vanessa)
Aim
To ensure the needs of Australians diagnosed with de novo metastatic breast cancer (MBC) were addressed in Breast Cancer Network Australia’s (BCNA) flagship resource for people with metastatic disease, Hope & Hurdles.
Method
Telephone interviews were conducted with seven women from regional and metropolitan areas who had been diagnosed with de novo MBC. The discussion guide was based on themes extracted from previous online survey results and anecdotal evidence collected from BCNA members via telephone enquiries, face to face and online forums.
Results
While there was some overlap with the information and support needs of those diagnosed with MBC after a previous diagnosis of early breast cancer (EBC), those with de novo MBC had some unique needs. Women described having to cope with a rapid transition from an EBC diagnosis and curative intent, to one of incurable disease and progression stabilisation. They needed to upskill quickly in basic breast cancer knowledge in tandem with understanding their own particular diagnosis and treatment options. Depending on life experiences, they may have had little opportunity to develop coping skills around a life threatening illness and few skills in navigating a complex health system. Care coordination for this group was described as fragmented. Some expressed the difficulty of finding peer support groups specific to their diagnosis. While all women felt angry at such a devastating diagnosis, paradoxically years later others felt a strange sense of relief, and sometimes guilt, at not having experienced the constant fear of recurrence that women with EBC report.
Conclusions
Key findings have led to a tailored section being added to the third edition of Hope & Hurdles. This work has highlighted the importance of BCNA developing an advocacy agenda to raise awareness of this group of breast cancer patients with unique needs.