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People & Projects
Patient Experience Research update
The project we are working on with Southampton University to triangulate the experiences of CUP patients, their carers’ and treating physicians is now entering the next stage. Recruitment of patients closed on 31 Jan. Focus groups will follow before the data are analysed. The intention is to have the report ready in Spring 2012 and give it coverage at the conference on 27 April. [Posted Feb 12]
Implementing the NICE Guideline on CUP
The Peer Review Measures for the NICE Guideline on CUP, worked-up by a small team under the direction of the National Cancer Action Team, are now subject to "consultation". When implemented in Spring 2012, these measures will allow the Guideline recommendations to be audited and essentially give it "teeth".[Posted Feb 2012]
Conference - CUP 2012
The 2nd international CUP conference, organised by the CUP Foundation, will take place in London in April 2012.
The world authority on CUP - Dr Tony Greco, Director of the Sarah Cannon Cancer Center (USA), has agreed to chair the conference.
Prof Nicholas Pavlidis will be the keynote speaker. Prof Pavlidis is Chairman of the European Society of Medical Oncologists (ESMO) Guidelines Committee. Prof Pavlidis trained in Athens and at the Royal Marsden Hospital in London (1983-1984) before undertaking research at the National Institute of Health in Bethesda USA (1977-1980). He served as Senior Oncologist at the Cancer Institute in Athens before moving to the University of Ioannina where he is currently a Professor and Director of the Medical Oncology Department . He has published many influential articles on CUP and is presently conducting research on the biology of CUP. [Posted Apr 11]
Clinical Nurse Specialist in CUP
In what we hope will be one of many, the first (as far as we know) Macmillan Clinical Nurse Specialist for Cancer of Unknown Primary has been appointed in Lincolnshire. [Posted Mar 11]
Welcome
A warm welcome to Jill Foulds who has joined us as a volunteer. As Administration and Conference Manager, Jill will be project managing CUP 2012 – our next conference. [Posted Mar 11]
Recognition by numbers
We have a large number of “wants” on our wish list . We have been making some progress in engaging with CRUK and NCIN on the statistics of CUP. For the first time, and following the NICE Guideline on CUP, CRUK have published recently detailed UK- wide data on CUP incidence. It is for 2007 but there is always a significant time-lag in collating the data. The data show that CUP was the 8th highest of all the cancers for men and the 6th highest for women. The average CUP incidence for 2007 is 4% of all cancers but there is recognition that this under-represents the burden of the disease. We are battling to get CUP shown in the top 10 when cancer incidence is shown in top 10 cancer tables – at the moment it tends, in the UK, to be left out as an inconvenient truth. “CUP nihilism” does not serve the patient’s interest. We need national organisations to show both incidence and mortality data (where CUP will be in the top 10 and probably in the top 5) to encourage recognition, research and improved patient outcomes. [Posted Mar 11]
Research project
Warwick Medical School Clinical Trials Unit would like to invite UK patients to take part in an innovative study to explore what it is like living with cancer. They want to do it through words and pictures (photography). They will interview you and, if required, lend you a camera. For further details contact C.Balmer@warwick.ac.uk or ring her on 02476 151179. [Posted Jan 11]
"Selling" the NICE Guideline
Richard Osborne who was the clinical lead for the NICE CUP Guideline, with John Symons and two clinicians from the Guideline group spoke to the Cancer Networks conference (organised by the National Cancer Action Team) in Manchester on 13 October. Whilst there was support for the Guideline recommendations there was also concern that it would add to hospital workloads at a time of cuts. Some Networks would seem to be responding more positively than others in implementing the Guideline. [Posted Oct 10]
Patient Experience Research
The project we have been trying to get underway with Southampton University to triangulate the experiences of CUP patients, their carers’ and treating physicians is now back on course, after some difficulties. (The project developed from a discussion between Jo’s friends Director and the Head of the Macmillan Research Unit at the University of Southampton.)
The project passed University Ethics scrutiny but was rejected by the NHS Ethics committee. In a lengthy and complex process we succeeded eventually in having the rejection overturned. On 6 Oct. 2010 we appointed a new researcher and the study will re-start with the recruitment of patients at the end of 2010. Properly conducted, this sort of research (with funding from Dimbleby Cancer Care) will be very influential in informing the future management of CUP patients. [Posted Oct 10]
NHS White paper and Cancer Reform Strategy Refresh consultation
With colleagues from Cancer 52, Jo's friends director represented the views of the less common cancers community to the Government's Cancer Tsar, Sir Mike Richards, on 10 Sep. Mike Richards claimed it was the most useful time he had spent to date in the whole consultation process. [Posted Sep 10]
Recent appointments
Dr Richard Osborne, who is the lead clinician for the NICE Guideline on CUP, joins Jo’s friends Medical Advisory Board. Read more about Richard and the other distinguished Board Members. [Posted Jul 10]
John Symons, Jo’s friends Director has been appointed to the National Cancer Research Institution’s Correlative Science Clinical Studies Group. [Posted Jul 10]
BMA Patient Information award
Understanding cancer of unknown primary, the booklet which we worked on with Macmillan Cancer Support, has been highly commended in the BMA Patient Information awards. Assessments are made on the basis of:
Evidence-based practice
Content
Navigation
Layout and design
Accessibility [Posted Jul 10]
Capturing CUP data – tip of the iceberg stuff
It is only through capturing reliable data that we can hope to raise awareness and get action taken to end the double agony of CUP. We are investigating presently the potential of a project to research the capture of CUP data with the National Cancer Intelligence Network.
There is presently no reliable data on CUP incidence. Mortality is thought to show CUP as the 4th most common cause of cancer death in England and Wales. In Jo’s friends documents we show incidence to be some 5% of all cancers, or about 14,000 people in the UK each year, but this is very conservative. The new NICE Guideline (covered elsewhere) is proposing that CUP data are captured in the 3 categories of: Malignancy of undefined primary origin (MUO), Provisional carcinoma of unknown primary origin (pCUP); and, Confirmed carcinoma of unknown primary origin (cCUP).
At present, there is no accurate way of identifying the number of patients who present with MUO – the first stage of a CUP diagnosis. Expert opinion suggests that this may range from 17,000 to 50,000 cases annually. At present, there is no accurate way of identifying the number of patients diagnosed with pCUP. Expert opinion suggests that the number of cases may be around 15,000 per year. The number of cases of cCUP that are diagnosed each year can however be estimated using the International Classification of Disease (ICD) codes – a WHO classification. There were a total of 9,778 new cases of CUP registered in England in 2006 – the latest year the data are available (Total new cancer cases in 2006 =242,200).
However, as there is no discrete ICD code for CUP, there may be additional CUP diagnoses that are not captured in these codes. The provisional deduction that we can make is that our figure of 5% is covering only those with pCUP and that the problem is very much greater when taking MUO and cCUP into consideration. As an organisation we are concerned with all 3 categories as they all fall within the term Cancer of Unknown Primary. [Posted Jul 10]
Patients say:
At first I was tired of answering the questions about CUP .. but this website has helped me realize that the world needs to know about us.
Your site is so great. I have a hard road ahead but feel calmer now that I've started a targeted chemo treatment. I fully understand the importance of your website and help.
Soon after my diagnosis my daughter contacted you and you were kind and gave her hope.
Events
The Wilson family present money raised in memory of Tracy. Photo: The Mansfield Chad and Hucknall Dispatch.
