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Why we exist
When a patient is diagnosed with cancer that has spread within the body (metastatic cancer), the primary site of the disease is not always obvious. Finding the origin of the cancer is important to define appropriate treatment.
When the origin of the cancer is not identified with confidence, through initial tests, this is described as Cancer of Unknown Primary site, or CUP.
Each year in the UK some 14,000 people are diagnosed with CUP*. This is a higher incidence than known cancers such as pancreatic, ovarian, uterine, kidney, brain, cervical or blood (leukaemia) cancers.
The 14,000 people diagnosed with CUP each year in the UK would fill 35 jumbo jets
For some CUP patients the primary cancer will remain unknown and will never be identified. But for many of those diagnosed initially with an undefined or uncertain cancer the origin of the cancer will be found through further tests. Even when the primary site remains truly hidden and unknown, effective treatment may be found, and all those with CUP can experience remission.
Most people have never heard of CUP and find it hard to believe that in this scientific age the cause of the cancer spread can remain unknown. A cancer diagnosis is frightening for patient, family and friends. Not to know where this strange, invasive, disease has originated in the body is a double blow.
CUP has been described by a leading cancer doctor (oncologist) and researcher as the “orphan of the cancer world”. We exist to offer information and support to CUP patients, their families and friends; whilst raising awareness of this problem to stimulate action that will improve treatment.
* This figure is an estimate. It is difficult to capture precisely the burden of a disease that has no standard definition. Cancer Research UK incidence figures for 2007 show a total of 11,348 (some 4% of the 298,000 people diagnosed with cancer) but recognise that this may under represent the disease.
Message board
1. Media latest. Click here.
2. NICE Guideline for CUP Click here.
3. CUP conference report Click here.
Endorsements
What a brilliant site, it provides a light in the grey world of CUP.
Chris (CUP patient, UK)
A valuable patient support organisation that advocates much needed research and change for this neglected group.
Prof. Orest Mulka (former GP)
The immense relief that I have obtained so far from just reading everyone’s stories on this site is incredible. Up to this point I have felt so very alone as no one could give me any advice, nothing to read, nothing to comfort me as I flounder..
Susie (CUP patient, Ireland)
Your website and John were my life line when I was diagnosed with CUP in 2009. They have helped inspire my advocacy work for CUP in Australia. Jane.
Meeting Space
Join others affected by
CUP to share information
& gain support in a moderated forum
