AMMF’s CCA Patient & Carer Information Day
AMMF’s virtual Cholangiocarcinoma (CCA) Information Day, especially for patients and carers, took place on Thursday, 29 October 2020.
As well our most important attendees – those who are living with CCA, and those who care for loved ones with CCA – there were clinical nurse specialists who wanted to learn more about cholangiocarcinoma and industry members, whose companies are working hard to develop drugs and improved treatments for those with CCA.
One of the high-risk factors for CCA is PSC – Primary Sclerosing Cholangitis. The day of the meeting, 29 October, coincided with PSC Awareness Day so we were delighted to have representatives from PSC Support UK join with us.
The day’s agenda covered three important topics – an overview of cholangiocarcinoma, an update on treatments and trials, and nutrition and diet for those with cholangiocarcinoma – and we were very fortunate to have with us expert speakers who are dedicated to helping improve the situation for all those now and in the future, with cholangiocarcinoma.
First to speak, giving a comprehensive overview of CCA, was Professor Shahid A Khan from Imperial College London. Professor Khan is a very experienced hepatologist and has published many papers on CCA, including the problems caused by miscoding. He is hugely knowledgeable, is a member of AMMF’s advisory board and has worked closely over several years with AMMF’s CEO Helen Morement on AMMF’s CCA data project.
Professor Khan is also Chair and the driving force behind Cholangiocarcinoma-UK1.
Professor Khan has generously agreed to share his presentation slides, and these can be seen by clicking here
Professor Juan Valle from The Christie in Manchester presented next. He is an oncologist, widely published, and is at the forefront of what’s happening in treatments and trials in the world of cholangiocarcinoma. Professor Valle is also a member of AMMF’s advisory board and is renowned not only throughout the UK but internationally, too. He liaises with the charity on a regular basis to ensure that AMMF’s clinical trials web page is as current as possible.
Professor Valle has generously agreed to share his presentation slides although, at his request we have had to remove one which he shared with us on the day, but which is pre-publication. The slides can be seen by clicking here
The afternoon was given over to a session on how best CCA patients can help themselves via nutrition.
We were very pleased to welcome Glenda O’Connor, Senior Specialist Dietitian at The Wellington Hospital in London, where she specialises complex nutrition support for GI and HPB patients. Glenda took us through what you should eat, the problems you may encounter during and after treatments and how to manage them, and added in lots of hints and tips specifically for those who have cholangiocarcinoma.
We are grateful to Glenda for agreeing to share her slides with us, and these can be accessed by clicking here.
Conclusions from the day
For far too long this cholangiocarcinoma has been under the radar – even though, as Professor Khan has highlighted during his presentation, the incidence is rising year on year, and this is happening globally.
However, it seems that the true incidence is hidden by poor recording and confusion in diagnosis. But encouragingly there is now a growing awareness amongst medics and scientists, and we look for better data in the future to support what we see.
Improvements in diagnosis methods, treatments, management and care of the cholangiocarcinoma patient are long overdue and desperately needed. But as we learned from Professor Valle, there is a huge amount of work now going on in these areas, and improvements are on the horizon.
But above all, those with cholangiocarcinoma need to be cared for holistically – with diet and nutrition, illustrated so clearly by Glenda in her presentation, also playing its part alongside the medical interventions.
AMMF believes that all should have access to an experienced multidisciplinary team offering a full package of care, and this should happen in a centre of expertise.
AMMF is here for all those with cholangiocarcinoma – you are at the heart of everything we do. This has been a particularly difficult year for us at the charity, but we continue with our work of advocating for the CCA patient whenever and wherever we can.
1 Cholangiocarcinoma-UK is a group affiliated to the British Association for the Study of Liver Disease (a BASL Special Interest Group). Formed in 2018, the group’s mission statement is:
“Cholangiocarcinoma-UK is a multi-disciplinary group of clinicians, scientists and patient advocates whose purpose is to facilitate collaborative research, enhance service development and raise the awareness of cholangiocarcinoma.”