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

Palliat Med. 2008 Mar;22(2):177-83. doi: 10.1177/0269216307085341.


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.

Publication types

  • Multicenter Study

MeSH terms

  • Adaptation, Psychological*
  • Adult
  • Aged
  • Attitude to Health*
  • Communication
  • Female
  • Humans
  • Male
  • Middle Aged
  • Neoplasms, Unknown Primary / psychology*
  • Pilot Projects
  • Quality of Life / psychology
  • Stress, Psychological / etiology*
  • Uncertainty