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 majority of pancreatic NETs are non-functional, depending on where you look, anything between 50 and 85%. “Non-functional” means that the tumour doesn’t produce a sufficient set of symptoms to cause a hormonal syndrome.
While the diagnosis of functionality relies on the presence of a hormonal syndrome, the NET-diagnosis continues to rely on histological or cytological analysis. There is a separate guidance paper on functional pancreatic NETs – click here to read that.
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 non-functioning pancreatic neuroendocrine tumours (NF-Pan-NET) has been developed by a multidisciplinary working group and provides up-to-date and practical advice on the management of these tumours.
Using the extensive experience of centres treating patients with NF-Pan-NEN, the authors of this guidance paper discuss 10 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 NF-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
TABLE 1. Ten major questions on management of non-functioning pancreatic neuroendocrine tumours.
- How should we define and characterise a NF-Pan-NET patient at clinical presentation?
- Which biochemical tests should be performed in a patient with NF-Pan-NET?
- Which is the most suitable imaging work-up for NF-Pan-NET patients?
- What is the appropriate surgical management of NF-Pan-NET?
- What is the role of PRRT in patients with NF-Pan-NET?
- What is the role of biotherapy and molecular targeted therapies in patients with advanced NF-Pan-NET?
- What is the role of chemotherapy in patients with advanced NF-Pan-NET?
- In the setting of advanced disease, which is the most suitable first-line systemic therapy? Which sequence of treatments should be used?
- Is there a specific work-up in MEN1-associated NF-Pan-NET patients?
- What is the recommended follow-up in NF-Pan-NET patients?
Now read the reference material below
Reference
Click on the blue link below see read the discussion and the recommendations for each of those questions.
European Neuroendocrine Tumour Society (ENETS) 2023 guidance paper for nonfunctioning pancreatic neuroendocrine tumours
Beata Kos-Kudła, Justo P. Castaño, Timm Denecke, Enrique Grande, Andreas Kjaer, Anna Koumarianou, Louis de Mestier, Stefano Partelli, Aurel Perren, Stefan Stättner, Juan W. Valle, Nicola Fazio
First published: 05 October 2023https://doi.org/10.1111/jne.13343
More Guidelines
Disclaimer
I am not a doctor or any form of medical professional, practitioner or counsellor. None of the information on my website, or linked to my website(s), or conveyed by me on any social media or presentation, should be interpreted as medical advice given or advised by me.
Neither should any post or comment made by a follower or member of my private group be assumed to be medical advice, even if that person is a healthcare professional.
Please also note that mention of a clinical service, trial/study or therapy does not constitute an endorsement of that service, trial/study or therapy by Ronny Allan, the information is provided for education and awareness purposes and/or related to Ronny Allan’s own patient experience. This element of the disclaimer includes any complementary medicine, non-prescription over the counter drugs and supplements such as vitamins and minerals.
Click here and answer all questions to join my private Facebook group
- Spotlight: Potassium in Neuroendocrine Tumours (NETs)
Before you read this This information is designed to help you understand how vitamins and minerals work in the body and how certain NET-related factors might affect them. It is not a substitute for personalised medical advice. Every NET patient is different — tumour type, treatments, surgery, symptoms, and nutritional needs can vary widely. If… Read more: Spotlight: Potassium in Neuroendocrine Tumours (NETs) - Spotlight: Magnesium in Neuroendocrine Tumours (NETs)
Before you read thisThis information is designed to help you understand how vitamins and minerals work in the body and how certain NET-related factors might affect them. It is not a substitute for personalised medical advice. Every NET patient is different — tumour type, treatments, surgery, symptoms, and nutritional needs can vary widely. If you… Read more: Spotlight: Magnesium in Neuroendocrine Tumours (NETs) - Ronny Allan’s Newsletter covering July 2026
Summary of July 2026 on RonnyAllan.NET July was similar to the other months of this year but views down on the previous two months due to 50% of the month spent on holiday. Still a reasonable blog performance. Other key targets met were three more editions of the Spotlight series on vitamins and minerals. See… Read more: Ronny Allan’s Newsletter covering July 2026 - 16 years since diagnosis, I’m still here
I finally made 16 years since I was diagnosed on 26th July 2010. A milestone I was not certain at the time I would reach. However, as things progressed, as treatment was administered, and as I got used to living with Neuroendocrine Cancer, I eventually became more confident this was a possibility with the help […]
- Spotlight on Cushing’s Syndrome in Neuroendocrine Neoplasms
Intro Cushing’s syndrome is one of the most challenging hormonal complications seen in people with neuroendocrine neoplasms (NENs). It can be subtle, severe, or even life‑threatening — and it is often misunderstood. Many patients struggle for months or years before receiving a correct diagnosis, partly because the symptoms overlap with everyday conditions such as weight… Read more: Spotlight on Cushing’s Syndrome in Neuroendocrine Neoplasms - 14th July 2026 – Ronny Allan hits 3 million blog views!
Today, 14th July 2026, I can confirm the 3 million views milestone has been reached. MASSIVE THANKS to you guys for reading and sharing. When I first set up this blog in April 2014, it was just to help spread awareness (….and collect a few pennies) whilst I was walking the 84 miles of… Read more: 14th July 2026 – Ronny Allan hits 3 million blog views! - Spotlight: Zinc in Neuroendocrine Tumours (NETs)
Before you read thisThis information is designed to help you understand how vitamins work in the body and how certain NET-related factors might affect them. It is not a substitute for personalised medical advice. Every NET patient is different — tumour type, treatments, surgery, symptoms, and nutritional needs can vary widely. If you have… Read more: Spotlight: Zinc in Neuroendocrine Tumours (NETs) - Neuroendocrine Tumours – Iron
Disclaimer: This Spotlight provides general educational information about Iron. It is not a substitute for medical advice. Individual needs vary, particularly for those with conditions affecting digestion, absorption, or chronic blood loss. Always consult your medical team before making changes to supplements or nutrition. Before I knew I had metastatic Neuroendocrine Tumours, I was diagnosed… Read more: Neuroendocrine Tumours – Iron - Ronny Allan’s Newsletter covering June 2026
Headline – half yearly point bonus edition Summary of June 2026 on RonnyAllan.NET June was similar to the other months of this year but slightly down on the previous two months due to holiday. Still a strong blog performance. Other key targets met were three more editions of the Spotlight series on primary NET types (colon, thymic… Read more: Ronny Allan’s Newsletter covering June 2026 - Clinical Trials PRRT: From 177Lu to 225Ac: The DOTA-LM3 Antagonist Journey
Disclaimer:Please also note that mention of a clinical service, trial/study or therapy does not constitute an endorsement of that service, trial/study or therapy by Ronny Allan, the information is provided for education and awareness purposes and/or related to Ronny Allan’s own patient experience. This element of the disclaimer includes any complementary medicine, non-prescription over… Read more: Clinical Trials PRRT: From 177Lu to 225Ac: The DOTA-LM3 Antagonist Journey
Please Share this post for Neuroendocrine Cancer awareness and to help another patient
Discover more from Ronny Allan - Living with Neuroendocrine Cancer
Subscribe to get the latest posts sent to your email.
Maybe I just missing something here but what are the resulting recommendations for the ten points?
In the citation link