Small Intestine NETs
The latest European Neuroendocrine Tumor Society (ENETS) 2024 guidance paper for the management of well-differentiated small intestine neuroendocrine tumours
As someone who was diagnosed with metastatic small intestine NETs in 2010, I’ve clearly written many words about my own experience and how I was treated. However, I’ve also researched extensively about these issues including previous guidelines for the management of these common but complex tumours. They are mostly indolent, but they can be aggressive; they are legendary spreaders, often in silence.
They can cause damage before and after diagnosis, and it is these tumours that are predominately involved in mesenteric and retroperitoneal fibrosis, NET related heart disease and so called carcinoid syndrome (despite what you read on many websites, blog sites and online patient groups). They can be difficult to diagnose but also incidentally found at all stages of cancer. However, things are improving, less than 50% of small intestine NETs are now diagnosed at the earlier stages.
I hope you find the latest ENETS thinking of use in your own quest for information on your condition. This guidance was published in July 2024.
Abstract
Both the incidence and prevalence of well-differentiated neuroendocrine tumours from the small intestine (Si-NET) are gradually increasing. Most patients have non-functioning tumours with subtle GI symptoms and tumours are often discovered incidentally by endoscopy or at advanced disease stages by imaging depicting mesenteric lymph node and /or liver metastases while around 30% of the patients present with symptoms of the carcinoid syndrome. Adequate biochemical assessment and staging including functional imaging is crucial for treatment-related decision-making that should take place in an expert multidisciplinary team setting. Preferably, patients should be referred to specialised ENETS Centres of Excellence or centres of high expertise in the field. This guidance paper provides the current evidence and best knowledge for the management of Si-NET grade (G) 1–3 following 10 key questions of practical relevance for the diagnostic and therapeutic decision making.
TABLE 1. Ten (10) clinical questions for managing SI NETs
| Q1 – Which features need to be taken into consideration for the management of Si-NET? |
| Q2 – Is there any role of circulating biomarker measurement in Si-NET? |
| Q3 – Which is the most suitable diagnostic and staging work-up for patients with small intestinal NET? |
| Q4 – What is the role of surgery in localised SI-NET? |
| Q5 – What is the recommended first-line systemic treatment for advanced disease? |
| Q6 – What is the recommended treatment beyond first- line SSA therapy? |
| Q7 – What is the role of locoregional and ablative therapies in advanced Si-NET?
Q8 – Which is the best therapeutic strategy in patients with Carcinoid Syndrome and tumour growth control? |
Now read the reference material below. Abstract summary above but great introduction inside the reference.
Reference
Click on the blue link below see read the discussion and the recommendations for each of those questions.
Angela Lamarca, Detlef K. Bartsch, Martyn Caplin, Beata Kos-Kudla, Andreas Kjaer, Stefano Partelli, Anja Rinke, Eva Tiensuu Janson, Christina Thirlwell, Marie-Louise F. van Velthuysen, Marie-Pierre Vullierme, Marianne Pavel.
First published: 08 July 2024https://doi.org/10.1111/jne.13423
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
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.