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 on Thymic Neuroendocrine Neoplasms (Thymic NENs)
Disclaimer:The information in this Spotlight is for general education and awareness. It does not replace personalised medical advice, diagnosis, or treatment. Thymic Neuroendocrine Neoplasms (NENs) are complex and highly variable, and individual cases may differ significantly from the patterns described here. Always discuss your own situation, test results, and treatment options with your specialist team,… Read more: Spotlight on Thymic Neuroendocrine Neoplasms (Thymic NENs) - An unmissable update from Ronny Allan covering April 2026
A monthly update not to miss……..Summary of April 2026 on RonnyAllan.NET I think the main story of April is similar to March which was a strong blog performance. Some of March was so popular that it has rolled into April and I have tried to beat those figures but failed due to external pressures. Nonetheless, the… Read more: An unmissable update from Ronny Allan covering April 2026 - Spotlight on Small intestine Neuroendocrine Neoplasms (siNENs)
DisclaimerThis Spotlight is for general education and reassurance only. It cannot replace personalised advice from your own medical team, who understand your individual history, imaging, pathology, and treatment needs. Neuroendocrine tumours vary widely in behaviour, presentation, and management, and guidance may evolve as new evidence emerges. If you have questions about your diagnosis, symptoms, or… Read more: Spotlight on Small intestine Neuroendocrine Neoplasms (siNENs) - A Spotlight on Pancreatic Neuroendocrine Neoplasms
DisclaimerThe information in this Spotlight is for general education only. It cannot replace advice from your own medical team, who know your individual situation, test results, and treatment options. Neuroendocrine Neoplasms and related conditions are complex and research is evolving; guidance, classifications, and statistics may change over time. Always discuss any questions or concerns with… Read more: A Spotlight on Pancreatic Neuroendocrine Neoplasms - Neuroendocrine Cancer in UK – a growing crisis?
I was delighted to read about the efforts of Dr Arthur Scott, a Member of the UK Parliament (MP). He is a great advocate for cancer patients and recently introduced a rare cancer bill in the UK Parliament which will hopefully make a difference. The content was very interesting and I was drawn to several… Read more: Neuroendocrine Cancer in UK – a growing crisis? - Bone Metastases in Well‑Differentiated NETs – Part 2 – Treatment
DisclaimerThis information is for education and reassurance only.It is not a substitute for personalised medical advice, diagnosis, or treatment. Bone metastases in neuroendocrine tumours (NETs) vary widely in behaviour, appearance, and clinical significance. Decisions about systemic therapy, radiotherapy, ablation, bone‑targeted agents, surgery, or monitoring must be made by your own specialist NET team, who understand… Read more: Bone Metastases in Well‑Differentiated NETs – Part 2 – Treatment - Neuroendocrine Tumours – Vitamin B3 (Niacin)
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 concerns… Read more: Neuroendocrine Tumours – Vitamin B3 (Niacin) - March 2026 Newsletter from Ronny Allan
Here is my monthly summary of March 2026 on RonnyAllan.NET This has been a very good month but to be honest, I had more time at home and on my computer, due to illness. OK I was not that ill that I could not tap away at a keyboard! However, it was pretty erratic access. I… Read more: March 2026 Newsletter from Ronny Allan - Understanding Differentiation, Ki‑67, Mitotic Count, Hotspots, Pathology Workflow, and Primary–Metastasis Heterogeneity in Neuroendocrine Neoplasms (NENs)
Before you read this… This article discusses pathology concepts such as Ki-67, grading, heterogeneity, and biopsy findings in neuroendocrine tumours (NETs). It is provided for educational purposes only and does not interpret any individual pathology report or scan result. Ki-67 values, tumour grade, and sampling limitations can vary between different biopsies and over time. Their… Read more: Understanding Differentiation, Ki‑67, Mitotic Count, Hotspots, Pathology Workflow, and Primary–Metastasis Heterogeneity in Neuroendocrine Neoplasms (NENs) - Why liver transplant is back in the NET conversation
Before you read this… This article is provided to support understanding of a complex and evolving topic. It explains how liver transplant is being explored in a very small number of NET patients, but it is not suggesting that this treatment is suitable for you or anyone else. Every NET case is unique. Only your… Read more: Why liver transplant is back in the NET conversation
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