Information for the public
Diagnosis
In the NICE guideline, a person is said to have 'malignancy (or cancer) of undefined origin' when cancer of unknown primary is first suspected, but only a few tests have been carried out.
The diagnosis may change to 'provisional cancer of unknown primary' when basic tests and investigations are completed, but further special investigations might still be needed. If the primary cancer is identified, then the person can be offered treatment under the care of a team specialising in that particular type of cancer.
If all the relevant tests and investigations have been carried out and the site of the primary cancer still cannot be found, 'confirmed cancer of unknown primary' is diagnosed. Although tests and investigations sometimes may not identify the primary cancer, they can help healthcare professionals decide on the best treatment to offer.
Deciding about tests and treatment after diagnosis
A member of the CUP team should talk with you, and your carers if you wish, about factors that could affect the outcome of your treatment. These are called your prognostic factors, and include the stage of your disease and whether you are well enough for treatment.
A member of the CUP team should help you decide about having further tests and treatment after diagnosis. Sometimes having more tests won't make a difference to the treatment you are offered, and this should be discussed with you, and support offered if necessary.
You may decide that you do not want to have any treatment, in which case you should not be offered any more tests. Your key worker or another member of the CUP team should talk with you again about palliative care, which aims to control your symptoms and help you remain as comfortable as possible. It is care designed to help not only with your physical needs, but also with psychological, social and spiritual needs.