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The University of Southampton
Macmillan Survivorship Research Group

Cancer of Unknown Primary Study

Understanding the unknown: a case study approach to explore patients’, carers’ and health care professionals’ experiences of Cancer of Unknown Primary

Funder: Dimbleby Cancer Care Research Fund
PI: Julia Addington-Hall

In the UK, in 2 to 6 per cent of invasive cancers no primary site from where the cancer originated can be found (1). Investigations will have found a secondary cancer but will not have been able to identify a primary cancer. Very little is known about peoples' experiences of living with cancer of unknown primary site (CUP). Earlier research conducted by the applicants found that CUP patients experience a range of difficulties related to their condition (2). These include poor understanding of their condition, uncertainty about its causes and about their future experiences.

These patients also experience uncertainty about doctors’ ability to treat them. This study also identified how the concerns of these patients differ from patients who have an identified primary cancer. Whilst providing insight into the experiences of CUP patients, this research study is limited in that only 10 patients were included in the study. Carers’ and health care professionals’ experiences were also not explored in the study.

To address these limitations this current study employs a case study approach to explore patients', carers' and health care professionals' experiences of cancer of unknown primary site. Case studies are particularly helpful for research that seeks to understand new or under-researched areas, enabling researchers to collect information from a number of different sources. It is proposed that case studies of up to 25 people with CUP will be compiled. Each case will include interviews with a patient who has CUP, who will then be invited to name two health care professionals (e.g. a doctor or a nurse) and one lay person who they feel has been most involved or affected by their illness, who will then also be invited to take part in a research interview.

These case studies will be very important in identifying the key issues and experiences of patients and their family living with a diagnosis of cancer of unknown primary. They will also be significant in shaping future care to address patients, carers and health care professionals’ needs. The case study findings will shape the second stage of the study: focus groups with patients, their family members and health care professionals. These focus group findings will be key to informing practical recommendations about how to improve the care and support offered to those living with or affected by CUP. This study is particularly timely as the National Institute of Clinical Excellence (NICE) is in the process of developing guidance of how to improve the experiences of CUP patients. This guidance is due by May 2010.

Findings from this study will therefore contribute towards the development of these guidelines. A national charity organised to support CUP patients, entitled The CUP Foundation (3) together with the charity Macmillan Cancerbackup will use these findings to develop relevant and accessible information for CUP patients. These findings will assist the medical and nursing professions' understanding of living with and caring for patients with CUP. This will be through publication in academic and clinical journals.


1. Shaw P.H.S, Adams R, Jordan C, Crosby T.D.L. A clinical review of the investigation and management of carcinoma of unknown primary in a single cancer network. Clinical Oncology 2007; 19: 8795.

2. Boyland L, Davis C. Patients’ experiences of carcinoma of unknown primary site: dealing with uncertainty. Palliative Medicine. 2008. 22; 177.

3. The Cup Foundation (website address:

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