July 4th saw Pancreatic Cancer UK's second Annual Summit take place at the Wellcome Collection in London. This year's theme was Survival, leading on from last year's theme of Early Diagnosis. It was a fantastic day full of fascinating research, hope and the willingness to tackle the challenge this disease presents. We've had a lot of interest in the programme so thought an update on the day might be in order: here's our FAQ guide to the Summit…
Why 'Summit for Survival'?
Pancreatic cancer presents an enormous challenge - one that in our view warrants bringing the best and the brightest, including expert patients and their families and carers, together to try and crack. Last year we brought our experts together to tackle the challenge of early diagnosis - this year we wanted to concentrate on what can we do to improve survival post-diagnosis.
Last year's Summit was opened by Paul Burstow, Health Minister and this year's keynote address was made by broadcaster and journalist, Huw Edwards - who lost his own father to the disease His opening words provided much appreciated inspiration and he spoke passionately about changing and challenging the public perception of the disease - something that perhaps prevents it from being discussed in the media as often as we would like.
We all know that survival stats have hardly changed in over 40 years; something Huw Edwards highlighted when relating how surprised he was to learn that less than £5 million was spent on pancreatic cancer research in 2012, compared to - for example - breast cancer, where over £40 million has been invested year on year since 2009.
Who were the speakers?
A full list of the speakers can be found on our 2013 Summit For Survival page, here.
What was said?
The day contained a mini mountain - perhaps 'avalanche'! - of data from the speakers, aptly set-up by Chris Carrigan (pictured above), Head of the National Cancer Intelligence Network, who presented details of the their work in collecting pancreatic cancer patient's data for use in the future. They're currently working hard to link data from patients, specialist centres and more, so the incidences of pancreatic cancer can be analysed in greater depth - for example - around differentiations in access to diagnosis and treatment, plus the rates of survival and mortality in the UK.
What next for pancreatic cancer data?
Collecting palliative and social care data, prescriptions, perhaps even genomics and tissue bank data to greater round-out our knowledge of this disease.
Important points were made by Richard Charnley regarding surgical stats: look a little deeper than the headline statistics, as some surgeons may look more kindly on those cases other surgeons would choose not to take. As we tweeted during his talk:
We know the stats are bad: what's being done?
New treatments and clinical trials discussed included:
Stereotactic Radiotherapy (Cyberknife) - Dr. Maria Hawkins
Irreversible electroporation ( NanoKnife) - Professor Derek Manas
SCALOP 1&2 - Dr. Somnath Mukherjee
Two new treatments, stereotactic body radiotherapy (CyberKnife) and Irreversible electroporation (NanoKnife) were discussed by Dr Maria Hawkins and Professor Derek Manas.
Stereotactic body radiotherapy (more details of which can be found on our website here) is a method to deliver high dose radiation in a very targeted way, taking only one week instead of the usual five to six weeks of radiation therapy. Dr Hawkins talked the audience through the potential challenges and complications of this surgery - the proximity to the small bowel means even moderate doses of radiation is associated with high toxicity risk, ulceration, bleeding, and perforation. However, it can also provide a better standard of care for the patient due to the relative speed of the treatment. Still, it is early in the development of this treatment.
NanoKnife technology we have covered in previous blog posts: to find out more click here. Plus we have a series of posts by Pancreatic Cancer UK Voice, Margaret who is currently undergoing the treatment, which give a much more personal account of the treatment.
What were the outcomes of the day?
Communication and cooperation were definite themes that ran through the day, underpinned by the experiences of penultimate speaker Dr John Nathan - a GP and a current pancreatic cancer patient.
From information patients simply weren't being given - such as knowing about the availability of pancreatic enzymes to aid food malabsorption as Professor Clem Imrie pointed out in his nutrition presentation - to not being referred to specialist centres, the need for better communication was again and again brought to the fore.
Key actions from the day
The day highlighted a few necessary actions to move forward on in order to both change perceptions of pancreatic cancer in the public consciousness and to improve outcomes for patients. They included:
- Raising the profile of pancreatic cancer with positive stories - and bringing together survivors and people living with the disease to inspire others. We are already making good progress on this - 10 people with direct experience of a pancreatic cancer diagnosis attended the Summit and we are building up our patient network day by day. But we agree there's more to do - so watch this space for further developments!
- Working harder to ensure that all pancreatic cancer experiences improve, not just those who are eligible for surgical treatment
- Ensuring every patient has access to a specialist MDT
- Using data to empower patients and clinicians
- Making the most of the new NHS commissioning arrangements
If you think you can help us achieve these goals by becoming a Pancreatic Cancer UK Voice, head to our Get Involved section now and register your interest.