Supporting the

Neuroendocrine Cancer Community

NET Patient Foundation attends the UKINETs Annual Conference 2018

Dec 11, 2018

On Monday 10th December NPF’s CEO, Catherine, and NPF Nurses, Nikie and Lindsey, attended the UKINETs 16th Annual Conference. The day was focussed on educating, stimulating discussion and research amongst the many specialities involved in the care of patients with Neuroendocrine Cancer. 

A packed programme at the UKINETs conference in Manchester this year: 
It was great to have some really eminent speakers this year from the global NET community including Marianne Pavel from Germany,who gave an amazing and comprehensive talk on Personalised medicine- which treatment for whom. She had no definitive answers but pushed for the need for more earlier predictive markers to understand which treatment would work best in patients. The latest paper to discuss this is a paper in Nature Genetics 2018 by Alvarez et al.
Other international speakers were Lisa Bodei from the USA, Eric Baudin from France and Nicola Fazio from Italy.
Professor Juan Valle from the Christie hospital reinforced the message that traditional chemotherapy is still extremely beneficial in certain NEN tumour groups despite recent advances in novel therapies, PRRT and immunotherapy. Dr Nicola Fazio, delivered a presentation on immunotherapy in NENs. The key takeaway message was that many of the studies trying to predict whether NETs will respond to immunotherapy have proven to be unreliable, however some interesting biomarkers and unexpected findings require much more investigation to look at the future application of immunotherapy in NENs. 
Dr Sheldon Cooper from Birmingham presented nutritional support in NENs, describing how to approach problems after bowel surgery and also reminding us that persistent bowel problems in NEN patients are not always due to the NEN and should be fully investigated.
 In a ‘Questions to the experts” session an expert NEN panel of gastroenterologists, surgeons, specialists nurses, endocrinologists, oncologists, nuclear medicine (similar to those at a a multi disciplinary meeting/team (MDM/MDT) were presented with case studies and invited to explain their preferred treatment options, the pros and cons of their chosen approach and the alternatives. Dr Christos Toumpanakis (Royal Free hospital) explained the session demonstrated how MDT’s work and that, despite the importance of guidelines, individualised care planning is a key element in treating NETN patients.
Other scientific sessions included histopathologists describing much discussed topics with the different names and stages of NENs  – such as whether we should use different words like tumour or carcinoma for the different grades. Other presentations covered; using DNA to try to locate primary sites of those with an unknown primary; continuing efforts in the labs to produce reliable tests including a NET test; planned clinical trials involving a different version of lutetium (PRRT). 
There was a clear update on the 2017 WHO Classification of NENs- they are NETs or NECs and that is it! We will be ensure that we change all of our literature, where we can, to incorporate the correct terminology based on evidence.