Dilemmas in managing patients with cancer of unknown primary

CANCER OF unknown primary (CUP) is an umbrella term for a number of heterogeneous clinical presentations associated with hidden (occult) primary tumours. Van de Wouw et al (2003) described CUP as: ‘A biopsy-proven metastasis of a malignancy in the absence of an identifiable primary site after a complete history and physical examination [has] been carried out, along with basic laboratory studies, chest X-ray and additional directed studies.’ Problems of classification mean that there is no definitive figure for CUP incidence in the UK. It is generally reported to be about 5 per cent; estimates range between 3 and 10 per cent of all cancer diagnoses (Bridgewater et al 2008). Patients with CUP face a challenging diagnosis and pathway. The challenges are shared by the healthcare professionals caring for those with this poorly understood condition. Until the National Institute for Health and Clinical Excellence (NICE) guideline for CUP is published in summer 2010, there are no national guidelines for the treatment and management of patients with CUP. Winston (2009) argued that doctors are losing the ability to assess patients because they rely too much on tests rather than on traditional clinical skills. ‘Chasing the primary’ through multiple testing is a characteristic of CUP. Particular challenges lie in defining the optimal point to cease diagnostic tests, and discussing the implications effectively with patients and their loved ones. These challenges may fall to consultants, GPs and, often, specialist nurses. The NHS Cancer Plan and the New NHS (Department of Health (DH) 2004) identified the importa nt role that nurses play in cancer care: ‘Many clinical nurse specialists working in cancer or palliative care can be considered to have a “case management” role, working with individual patients to enhance their ability to cope with their disease and helping to ensure that their care is well co-ordinated... Nurse specialists in each of these groups have important roles in relation to the provision of information and support to cancer patients. They also have expertise in a specific area, for example, pain control and end of life care, chemotherapy, and knowledge of treatments for specific cancers.’ However, while there are specialist nurses expert in most cancer disease sites, there are no nurses expert in CUP in the UK despite the fact that it is one of the ten most common cancers and, according to Pavlidis (2007), taking a global view, the fourth commonest cause of cancer death. The aim of this article is to examine the dilemmas facing clinicians and patients, balancing the factors that encourage testing with communicating difficult information that requires traditional clinical skills. Summary