What do we want?
Overall in the UK, despite the incidence of some cancers increasing, people are living longer as a result of improved treatment. This is not the case with CUP. In some cases Cancer is becoming a controllable chronic condition: this is not the case with CUP.
CUP is a little known, under-researched phenomenon yet it is undeniably one of the ten most common cause of cancer mortality in the world. In the UK more people die from CUP than breast cancer. Advances in treatment are dependent presently on research into linked areas (e.g. metastasis) providing benefits; and advances in equipment such as MRI scanners.
We need to break this Catch 22 where the prognosis for CUP is poor because the research needed to improve treatment is not happening. Why? The short answer is because there is insufficient demand to make it happen. In the UK we have seen the impact on breast cancer as a result of popular demand. Resources and research have been triggered as a result of demand and survival rates have improved dramatically. CUP offers an even bigger challenge with an even bigger reward: it is possible to make the unknown known. We want to stop CUP being the unspoken orphan of the cancer world.
Jo’s friends aim to raise public awareness and understanding of CUP, in order to trigger demand for research and improvements by biologists, chemists, geneticists, histopathologists, diagnostic radiologists, physicists, medical engineers and others working in cancer-related fields. In particular, we want:
- An improved patient pathway. In the absence of established guidelines the custom and practice is different in different cancer centres in the UK. Oncologists are site, not problem-specific, specialists which means that the intitial patient referral may be incorrect requiring further referrals. As a result, patients may face yet more referrals and unnecessary tests. This "ad hoc" approach is time consuming and increases the patient's uncertainty and concern. Whilst continuity of support from a specialist nurse is usually available to a known cancer patient, the CUP patient can often be overlooked whilst awaiting a definitive diagnosis. An improved pathway will identify treatable patients earlier and reduce CUP mortality; for those where a cure is impossible, a recognised pathway will allow palliative care to "kick-in" earlier and unnecesary tests will be avoided.
- Specific CUP – related research. For example, we know almost nothing about the biology of CUP. Because the unique characteristic of CUP is its unusual metastatic pattern (when compared with the pattern for known primaries) it seems likely that CUP represents a specific biological entity. If this is the case, by understanding the genetic profile of CUP it can be treated more effectively. We need also research into patients, carers and clinicians to identify how to manage CUP patients appropriately.
- Improved gene understanding. As part of biological understanding, we kneed to know more about the genes, molecules and chemical messengers of Cancer to target treatment (chemotherapy, particularly, lacks precision) . Geneticists are working on: manipulating faulty cells to repair themselves or stop cancer from spreading; stopping or “arresting” cancer cells as they spread through the pathways of the body (not necessarily killing dividing cells but stopping them at “checkpoints”). Better understanding of genes may help make cancer cells more sensitive to established cancer treatments while making normal tissues more resistant to chemotherapy. 'Gene expression profiling' offers a new technique for cancer diagnosis and prognosis which may help with the identification of primary sites.
- Better diagnostic techniques. Better diagnostic techniques are needed to interpret and access the smallest of cancer lesions. Improved PET/CT, & MRI scanners are needed that can peer even more effectively into our bodies and hopefully identify primary cancer sites. This is the work of diagnostic radiologists, (nuclear) physicists and engineers. But however sophisticated this becomes there are parts of the body e.g. the pancreas which are inherently difficult to image.
- Central Registry of CUP patients and Tissue Bank. The true incidence of CUP is probably understated because clinicians are keen to assign a primary where possible based on the best evidence. Centralised data about CUP patients would enable better understanding of CUP and enable research.
- Better statistics. Arguments about funding and treatment priorities tend to be won by the evidence. In the CUP field the statistics are ambiguous and unreliable. We need to be able to make distinctions between "undefined", "uncertain" and "true" CUP.
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Ron on the 130 km Etape Caledonia. With son Jimmy they raise £2,000 for Jo's friends through JustGiving
