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. Aims: 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. Methods: 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. Results: 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. Conclusion: Many patients find the uncertainty difficult and would welcome more opportunity to ask questions and learn of others' experiences.