There is very much a multi-disciplinary team (MDT) approach to treating Neuroendocrine Tumours (NET) in Europe and many other places.  In Europe and the extra-Europe CoEs in Australia, Israel and the USA, this is centred on the establishment of the Centre of Excellence programme that has been running since 2009.  But underneath that are some excellent MDTs not yet accredited who may still utilise ENETs guidelines to treat and manage their patients. 

This 2023 guideline paper sets the scene for an important and complex group of tumours – pancreatic NETs.  It’s well known and accepted that the minority of pancreatic NETs are nonfunctional, depending on where you look, anything between 50 and 85%. This means functional pancreatic NETs are less common than nonfunctional. The reason for emphasis is that patient support groups may misrepresent the real figures as those joining tend to be looking for more support.  I also emphasise the existing of several pancreatic NET syndromes to water down the claim that many pancreatic NETs have carcinoid syndrome when the numbers are really quite low. 

So, what does functional mean? 

“Functional” means that the tumour doesn’t make sufficient hormones to produce a set of symptoms (a syndrome).

While the diagnosis of functionality relies on the presence of a hormonal syndrome, the NET diagnosis relies on histological or cytological analysis.  There is a separate guidance paper on nonfunctional pancreatic NETs (click here). 

Prior to 2022/23, the most recent and comprehensive set of guidelines were based on the 2016 series which were behind a subscription wall. I have had access to those via my ENETS membership and quoted them many times in my patient group and citing them in my spotlight on NENs series.  I am very pleased to see many of the 2022/23 guidance papers made public and am happy to share with you via my blog.  

This ENETS guidance paper for well-differentiated functioning pancreatic neuroendocrine tumours (F-Pan-NET) has been developed by a multidisciplinary working group and provides up-to-date and practical advice on the management of these tumours and syndromes.

Using the extensive experience of centres treating patients with functional Pan-NEN, the authors of this guidance paper discuss 9 troublesome questions in everyday clinical practice. Our many years of experience in this field are still being verified in the light of the results of new clinical, which set new ways of proceeding in NEN. The treatment of F-Pan-NEN still requires a decision of a multidisciplinary team of specialists in the field of neuroendocrine neoplasms.  

I see from watching exchanges between ENET specialists and other regions (North America etc), I see there is a wide consensus to be found in each other’s guidelines and recommendations.  I also note they both attend each other’s annual conferences, listening, contributing and presenting. This has to be a good thing for patients. Nonetheless, those not being treated in ENETS Centres of Excellence or associated MDTs, should refer to their own regional guidelines. 

See Table 1 below on the management of these neoplasms