Small Intestine Neuroendocrine Tumours (SI NET) are one of the most common types of Neuroendocrine Cancer, and also one of the most challenging to diagnose and then treat. Patients can have a very good outlook even when presenting with metastatic disease.  However, it’s true to say that some NET centres of excellence (CoE) or multi-disciplinary team (MDT) see a lot of SI NET patients have built up considerable experience in treating them, including the use of surgery.  The surgical challenges are such that a surgeon not experienced in treating these cases may shy away or think they are inoperable, whereas MDTs or CoEs potentially have the experience available to operate or to make sound judgements based on their own experience.  At the very least, they can offer a second opinion. 

I wrote about my own experiences in “Small Intestine, Large Surgery” where I quoted one NET specialist who said “this is not normal bowel surgery”. I had a surgeon who believed in aggressive approaches in the first 12 months after diagnosis but would emphasise that not everyone can go down this route, patients much be carefully selected, there are many factors involved.  There are some data available to show the benefits of upfront surgical resection for SI NETs and they can be found in the link above.  

This is a huge subject within my group, bringing up many posts and comments from across the world.  Some of the questions patients have span the spectrum of clinical situations in which questions frequently arise in the management of patients with SI NETs, where the answers are not clear from the literature. Many doctors and surgeons specialising in the care of NET patients generally agree on some of the approaches outlined below. I was delighted to see this document attached where a group of specialists reviewed the relevant data addressing many questions and have put forth consensus recommendations. Here’s a quote from the document to set the scene: “The objective of this conference was to improve the care of NET patients by increasing awareness of treatment options and providing expert recommendations based on clinical experience and careful review of the literature. Although the lack of randomized trials makes it difficult to prove the validity of these clinical recommendations, consensus or near consensus of our expert panel was reached for all of these questions. Our hope is that this article will offer guidance for physicians struggling to decide on how to deliver optimal care to their patients with SBNETs” (note:  NANETS use SBNETs (Small Bowel NETs) rather than the use of “SI NETs” in ENETS guidelines).