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


OBJECTIVE
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.


CONCLUSIONS
Many patients find the uncertainty difficult and would welcome more opportunity to ask questions and learn of others' experiences.
Boyland
Lucy
L
Countess Mountbatten House, Moorgreen Hospital, Southampton University Hospitals NHS Trust, Botley Road, West End, Southampton. lucy.boyland@oakhavenhospice.co.uk
Davis
Carol
C
D000223:Adaptation, Psychological; D000328:Adult; D000368:Aged; D001294:Attitude to Health; D003142:Communication; D005260:Female; D006801:Humans; D008297:Male; D008875:Middle Aged; D009382:Neoplasms, Unknown Primary / Q000523:psychology*; D010865:Pilot Projects; D011788:Quality of Life / Q000523:psychology; D013315:Stress, Psychological / Q000209:etiology*; D035501:Uncertainty