Conference Review
One hundred delegates attended the conference on 15 October 2009 held at a Royal College in London’s Regent’s Park. It was the widely considered view that this was the first conference, ever held, devoted to CUP. Speakers and delegates came from England, Wales, Scotland, Ireland, Belgium, Denmark, France, Holland, USA, Israel, Greece and Canada.
Some feedback from those who attended the conference
Delegates were asked to rate the conference as either: extremely useful, useful, fairly useful or not useful. Delegates rated it extremely useful (56%) or useful (44%). Speakers were rated overall as either Excellent or Very Good.
- I believe that though there is a lot of work to do to raise awareness and find solutions moving forward, this meeting will be regarded as a seminal event towards dealing with this disease.
- I thought the whole conference was excellent; a very high academic standard.
- Very useful day that opens up a complex hidden cancer group.
- I will give even more thought to what I say to patients & how I say it.
- To bring together patients, carers, healthcare professionals experiences and insights is very important for the future understanding of CUP.
- ..a real milestone in CUP. The first dedicated CUP conference, which was a huge success.
- It was a novel experience to be in a room of people speaking the same language.
- ...the topics were smartly balanced between technology and clinical issues. I was particularly impressed by the palliative care talk... as well as Harpreet/Gauri’s clinical presentation.
- Thank you very much for arranging this unique event - its good to make contacts of others working to progress the support & management of this neglected group of patients.
- Fantastic meeting. Very well done.
- We are taking a step at a time. We should not despair.
After a moving tribute to Jo, Chairman Dr Maurice Slevin handed over to Oncologist Dr Richard Osborne who addressed the question: Why are we failing the CUP patient? Richard set the scene for the day’s presentations by explaining the difficulties associated with defining CUP and the problems facing patients in the UK. In comparison with site specific cancers he identified that for the CUP patient there was: no specialist oncologist, no Specialist Nurse, no Multi-disciplinary team (MDT), no MDT management approach, no rapid systematic investigation, no site-specific protocols, no site-specific audit, no site-specific research, no cancer measures, no site-specific information + support, and no accurate epidemiology.
Dr Gauri Varadhachary then took the meeting through the diagnostic strategies involved with a presenting CUP patient and the pathological work-up was explained in detail, but very clearly, by Dr Karin Oien. Scientist, Dr Mark Erlander then covered the science behind molecular profiling and the different approaches taken by different companies in this field to try and identify the primary site through gene expression profiling. This talk was followed by a more specific presentation on micro RNA profiling by Dr Dalia Cohen.
A panel of invited experts then addressed a case study of a patient. The patient’s symptoms and test results were presented by Dr Varadhachary before the panel and audience discussed how the patient might be assessed and treated. The speakers and audience were given an important reality check by CUP patient Jill Bartrop at one point in the proceedings as the clinicians lost site of the impact of the confused management on CUP patients. Jill was the only speaker from the floor who received a round of applause! (Amongst the audience of very distinguished professors, scientists, nurses and doctors, she, and CUP patient Dianne from Canada were rightly recognised, as the most important people in the room.)
The first session after lunch was a powerful talk on palliative care by Dr Carol Davis who shared research findings of a study into CUP patients. Her talk was movingly illustrated by 4 members of the audience who read actual patient quotes describing their feelings in relation to a CUP diagnosis and treatment. Many concerns centred around uncertainty about the condition which led to multiple investigations as well as psychological morbidity. Patients were understandably concerned that health care professionals did not know the answers and were seemingly unable to treat the condition. In such circumstances this also left the patient with difficulty and distress in describing the condition to other patients, family and friends.
Drs Bridgewater and Wasan then spent some time sharing the latest research into CUP through projects that they have been, and are, engaged with. These were important sessions raising many issues and the potential benefits for CUP patients through research are undoubted. (CUP research often leads to as many questions as answers and the issues raised in these sessions and the keynote address will be covered in a separate report).
Dr Tony Greco is the world authority on CUP and in his keynote address he picked-up on some of the controversies raised in the course of the day and shared published and unpublished research data. There can be no expectations of a “solution” to CUP but his work over the years has led to an increasing number of treatable sub sets and he held out hope for improvements in diagnosis and treatment through the use of molecular profiling techniques. But as he, and the audience, recognised this is a fast moving new field which is still being validated and there is little evidence, to date, of it changing patient outcomes.
The day finished with a panel of expert speakers looking at the future directions and needs in CUP. There was a clear need to give greater recognition of patients within a CUP grouping and it was recognised that CUP is not a “rare” cancer. Aspirations included the desire to move more CUP diagnoses to treatable site-specific entities; the need for something resembling an MDT; the need to improve predictive markers for treatment and increase the use of molecular profiling, which could cut down on the need for other diagnostic tests. Palliative care that works alongside the clinical treatment pathway from the beginning was recognised as important so that patients could dip in and out as their needs changed. More research (including patient/carer research) would be the desire of all panellists and, given the difficulty of identifying a significant number of CUP patients, increasing collaborative research would be an important step forward.
Photos (Malcolm Glenn)
In descending order: Dr Richard Osborne; Dr Oien on pathology; full house; Prof Gordon Stamp asks a question; Dr Carol Davis with chairman Dr Maurice Slevin; Dr Tony Greco; Drs Wasan & Bridgewater; patient Jill Bartrop on the panel; Jo's friends thanks Dr Greco.
