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People & Projects
Posthumous award to Jane Barrett
Jane Barrett who founded CUP Action Australia was given a special posthumous award for excellence in consumer advocacy at the Cancer Council’s awards night in Sydney recently. The night was hosted by Norman Swan, with whom Jane had an interview on Radio National last year. Norman told the audience that Jane’s interview had resonated more strongly with his audience than any of his programs in recent years. The video tribute to Jane which was played at the national and international cancer conference (COSA and IPOS) in Brisbane last November is now up on the Cancer Council website here:
http://www.cancercouncil.com.au/68398/get-informed/about/about-cancer/janes-story/?pp=34031
[May 13]
Working with ESMO
The CUP Foundation has agreed to work with ESMO – the European Society of Medical Oncologists - on a number of projects (ESMO has 7000 members from 100 countries with a specific focus on Europe). Projects include:
- The development in 2013 of an online educational resource on CUP to complement other site specific ESMO cancer portals
- A face to face seminar (1.5 days) in the Spring of 2014 to be held in the UK for 60 junior oncologists from different European countries
- A book about CUP in the ‘essentials for clinicians’ series written by experts to increase the knowledge, and help guide, ESMO members
- The ESMO clinical Guideline on CUP is being updated in the Autumn of 2013 and we will be helping to source expert views on a revised version. [Jan 13]
CUP Registration Project
Jo's friends, working with colleagues in the Prince of Wales Clinical School, University of New South Wales and the Statistical Information Department of Cancer Research UK are preparing a research project to address the way CUP incidence and mortality data are recorded in Australia and the UK. [Nov 12]
Parliamentary Question on Molecular (gene expression) profiling
On 9 Nov. 2012 Graham Morris MP tabled a question about molecular profiling for the Secretary of State for Health in the House of Commons. This is the Hansard entry:
Grahame M. Morris: To ask the Secretary of State for Health what assessment his Department has made of the effectiveness of gene expression profiling in the diagnosis for patients with cancer of unknown primary. [127187]
Anna Soubry: Genetic expression profiling of cancer of unknown primary is still at the research stage and not yet routinely available on the national health service. Tests are available for Epidermal Growth Factor Receptor for Non-Small Cell Lung Cancer, KRAS for colorectal cancer, KIT and Platelet Derived Growth Factor Receptor Agonist for Gastrointestinal cancer, and Her2 for breast cancer. [Nov 12]
Patient Experience Research
The project we have been working on with Southampton University to triangulate the experiences of CUP patients, their carers’ and treating physicians has now been completed. A report was sent to the principal funder, Dimbleby Cancer Care, in early July.
The Director of Jo’s friends has been a member of the project group directing the research. The findings validate both the work of Jo’s friends and the direction of travel of the NICE Guidelines. The findings show that CUP patients face ambiguity and clinical uncertainty and that there is a need for:
- CUP, and what it means, to be explained to patients/ carers
- A key person to co-ordinate the efforts of different health care professionals and to give the patient consistent information and support
- Patients to understand the reasoning that lies behind investigations and tests they are given
- Information for patients to understand why more tests may not be the best thing
- Patients to know that health care professionals have not given up or abandoned them
- Patients and their carers to know that their needs are recognised and addressed
- Comprehensive written information about CUP to be available
The report can be found here
[Posted Sep 12]
Death of Jet Harris
It is always sad when anyone dies with CUP but it seldom receives media attention. The death of Jet Harris, the former guitarist with the Shadows pop group, has received some attention. His partner, with a close friend, has set up a memorial fund in his name and is passing the monies raised to CRUK for the CUP-One trial; the trial that we are supporting also. On 19 June 2012 the Daily Express published an article about Jet's CUP. We posted a response for the letters page:
The sad death of Jet Harris (Daily Express, 19 June) highlights the agony of a cancer diagnosis where the primary site of the cancer is unknown, making it extremely difficult to treat. More than 10,000 people each year in the UK receive this diagnosis. The key to solving the problem of an unknown cancer lies in better diagnosis. But in this country patients are suffering from unnecessary delays in the diagnostic process through a lack of clinical expertise and a failure to use modern genetic profiling technology. Presently, Cancer of Unknown Primary (CUP) patients face a frightening, and often futile, barrage of investigations as doctors seek to find the primary site.
We are also supporting the CUP One trial which aims to provide evidence as to how CUP may be better diagnosed and managed in the future. The Jet Harris Memorial Fund has our full support in raising money for this trial. Meanwhile, the CUP Foundation - Jo's friends will continue to provide information and support for those patients and their families who receive this devastating diagnosis.
[Posted Jun 12]
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.
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Events
The Wilson family present money raised in memory of Tracy. Photo: The Mansfield Chad and Hucknall Dispatch.
