Cancer Council NSW has undertaken research to better understand the unique experiences and unmet support and information needs of people affected by cancer of unknown primary (CUP). CUP is characterised by evidence of metastatic disease where the location of the primary site cannot be identified despite appropriate investigation. In NSW CUP is the third most common cause of cancer deaths 1 and overall prognosis is generally poor (31.2% one year and 18.7% five year relative survival rates) 2 . Until recently, information and support resources specifically designed for people affected by CUP were virtually non-existent in Australia. The CCNSW CUP Multimedia Support Network project received funding from the Australian Government through Cancer Australia.
Qualitative methods (thematic analysis of semi-structured telephone interviews using grounded theory framework) were used to identify the needs of the target population and the perceived gaps in available information and support [n= 23 (13 patients and 10 carers)].
The findings suggest that many people affected by CUP experience difficulties finding information about CUP and in understanding and explaining their diagnosis. They also experience uncertainty associated with the fact that their cancer is already advanced at the time of diagnosis, and with identification of optimal treatment because their primary cancer site cannot be identified. Clear empathetic communication between health professionals and patients and carers appears to be an important factor in assisting those coming to terms with this diagnosis and dealing with intense treatment protocols. Access to information about CUP and opportunities to connect with other people affected by CUP were also identified as important supports.
These findings were used to inform the development of a multimodal suite of information and support resources including: Understanding Cancer of Unknown Primary booklet; dedicated CUP information webpage; Video resources with information about diagnosis, treatment, research and palliative care; and creation of a space for a CUP online community to provide peer support via the Cancer Connections website.