Oral Presentation COSA-IPOS Joint Scientific Meeting 2012

Experiences of people affected by cancer of the unknown primary: what do we know and where are we headed? (#110)

Penny Schofield 1 2 , Anna Ugalde 1 , Helen Gooden 3 , Linda Mileshkin 2 4 , David Bowtell 3 5
  1. Department of Cancer Experiences Research, Peter MacCallum Cancer Centre, Melbourne, Australia
  2. Sir Peter MacCallum Department of Oncology, The University of Melbourne, Parkville, Australia
  3. Cancer Nursing Research Unit, Sydney Nursing School, The University of Sydney, Sydney, Australia
  4. Department of Cancer Medicine, Peter MacCallum Cancer Centre, Melbourne, Australia
  5. Cancer Genomics and Genetics Program, Peter MacCallum Cancer Centre, Melbourne, Australia

Cancer of unknown primary (CUP) is a complex disease that presents challenges for both clinicians and patients.  Most people affected by CUP rapidly become aware of the diagnostic and therapeutic uncertainty and dismal prognosis of their disease, creating unique psychological problems for patients and their carers. There is virtually no published research on the quality of life and psychosocial aspects of CUP.  Given the striking lack of evidence to guide management of CUP, there is an urgent need for Australia to commence a program of research to address the void.  In our pilot study, which was part of the CCNSW CUP Multimedia Support Network project, 12 patients (6 males; 6 females; age range: 49-84) and 9 carers (4 males; 5 females; age range: 32-82) have completed a mailed questionnaire package of reliable and valid measures assessing psychological morbidity, quality of life, symptoms, unmet supportive care needs and hope.  The pilot data shows high consent rates (79%) and high completion of survey instruments demonstrating feasibility of a larger trial.  Basic descriptive data on psychological morbidity, quality of life, symptoms and unmet needs will be also be presented.

We have proposed a national collaborative cohort study of CUP by a team of leading laboratory, clinical and behavioural researchers and consumer advocates.  Our goals are to a) significantly improve the diagnostic assessment of CUP patients, b) to integrate new treatment approaches, specifically, molecular therapeutics and treatments for likely site of origin, and c) meet the psychosocial needs of patients and their carers.  Within this national cohort study, we seek (i) to establish reliable estimates for quality of life and psychosocial needs and (ii) to identify similarities and differences between 118 CUP and 118 non-CUP patients from baseline to 12-month follow-up.  A prospective, longitudinal study with matched control group over a 12-month period will be used.