Patients' experiences of carcinoma of unknown primary site: dealing with uncertainty.

Abstract

It is generally acknowledged that patients may find it particularly hard to accept a cancer diagnosis if the primary origin cannot be identified. However, there is very little research exploring this. This is an exploratory mixed-method, largely qualitative, pilot study to explore patients' understanding of carcinoma of unknown primary site, any concerns they may have and to assess their quality of life. Ten patients were recruited and nine completed semi-structured interviews and McGill quality of life questionnaires. Thematic analysis was used in conjunction with demographic data and quality of life scores. Six main themes were identified. These were--poor understanding, struggling with uncertainty/contrasting with stoical acceptance, undergoing multiple investigations, inability to treat, healthcare professionals not having the answers and difficulty explaining to others. Many patients find the uncertainty difficult and would welcome more opportunity to ask questions and learn of others' experiences.