Unknown Primary

Diagnosis and management of unknown primary tumour
NICE will shortly be setting up a guideline development group to develop a clinical guideline on ‘unknown primary tumours’. To date, only a few patient/carer organisations have registered as stakeholders.

Stakeholders will be notified about the stakeholder meeting, consultations on draft documents related to the guideline, and opportunities to apply for membership of the guideline development group.

Later in the year, a draft scope will be published for consultation, and during the consultation period, the stakeholder meeting will be held to discuss the likely content of the guideline. It is likely to cover two main areas:
  • The investigation of adults who are found to have metastases (spread of cancer) but in whom the primary site of the cancer is not known or not immediately obvious. This will probably involve recommending the most appropriate pathological and biochemical tests and imaging investigations.
  • The treatment of those in whom, even after appropriate investigation, the primary site is still unknown. This will probably involve recommending the most appropriate chemotherapy, hormone therapy and radiotherapy regimens.
Until the scope is drafted, it is difficult to be more specific about what the guideline will cover.

Head and neck cancers can present with the occult (hidden) primary never being found. This can be worrying to patients. Several of our members have had unknown primary tumours. The Mouth Cancer Foundation has therefore registered our interest in the development of this guideline.

I would be grateful to hear from members who were diagnosed as having an unknown primary tumour.
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