Updated 25th August 2024 to add data on scenarios of liver and peritoneal metastases, plus a review of the Influence of Lymphatic, Microvascular and Perineural Invasion on Oncological Outcome in Patients with Neuroendocrine Tumors of the Small Intestine. It also incudes links to the European Neuroendocrine Tumor Society (ENETS) 2024 guidance paper for the management of well-differentiated small intestine neuroendocrine tumours
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).
Small intestine NET is one of the most common types and incidence is increasing fast including at earlier stages due to advances in imaging tech and screening activities; and more awareness in primary and secondary care. The statement below (made in 2017) is therefore interesting when you look at some of the big names in the list of contributors.
The document cited below, lists a number of expert recommendations that commonly come up in discussions in my group. I wanted to provide you with expert consensus to help guide conversations with your own doctors and surgeons (some of whom may even be listed in the authors). Please note a 2024 update is due.
Click link in blue below:
The Surgical Management of Small Bowel Neuroendocrine Tumors
Howe JR, Cardona K, Fraker DL, Kebebew E, Untch BR, Wang YZ, Law CH, Liu EH, Kim MK, Menda Y, Morse BG, Bergsland EK, Strosberg JR, Nakakura EK, Pommier RF. The Surgical Management of Small Bowel Neuroendocrine Tumors: Consensus Guidelines of the North American Neuroendocrine Tumor Society. Pancreas. 2017 Jul;46(6):715-731. doi: 10.1097/MPA.0000000000000846. PMID: 28609357; PMCID: PMC5502737.
“What Is the Best Procedure for Detecting Multifocal siNETs?” (1). Multifocal siNETs occur in around 20–30% of patients and their correlation with a poorer prognosis is controversial. CT and MR have demonstrated a very low accuracy in detecting multifocal siNETs. An accurate and systematic intraoperative bidigital palpation of the entire small intestine from the ligament of Treitz to the caecal valve bowel has been demonstrated to be more effective in detecting multifocal siNETs compared with all preoperative imaging modalities.”.
(1) – ENETS Consensus Guidelines for the Standards of Care in Neuroendocrine Tumours: Surgery for Small Intestinal and Pancreatic Neuroendocrine Tumours. N, 25 Feb 2017, 105(3):255-265
This recent Swedish study confirms the importance of ‘running the bowel’ due to the potential for each small bowel primary NET to generate its own metastases. Read more by clicking here or on the graphic.
Conclusion: Lymphatic, microvascular and perineural invasion were associated with worse recurrence-free and disease-free survival in patients with siNET. Therefore, these features should be considered when making decisions about adjuvant therapy and follow-up regimens. Authors cuationed that there were limitations to their study, e.g.
“Interestingly, there was no association between L, V and Pn invasion and the well-established predictive factor of tumor grading, suggesting an independent effect on disease recurrence and progression. In addition, we did not find any association between LI, VI and PnI and overall survival, which may not be totally surprising considering the overall good prognosis of siNET patients even in advanced and metastatic tumor stages.
Our study has some limitations. As per its retrospective nature, a selection bias cannot be excluded completely. Secondly, the limited size and the partly missing histopathologic data have to be mentioned and kept in mind when interpreting the results, especially with regards to perineural invasion. However, considering the rarity of the disease, this cohort with more than 160 included patients still represents a rather large study population. Due to the inclusion of patients from a relatively long study period, differences in the routine histopathologic assessment occurred, resulting in missing data when histologic parameters could not be retrieved from the medical records and the tumor specimens could not be re-evaluated anymore.”
Click the blue link to read the data.
Butz F, Dukaczewska A, Kunze CA, Krömer JM, Reinhard L, Jann H, Fehrenbach U, Müller-Debus CF, Skachko T, Pratschke J, Goretzki PE, Mogl MT, Dobrindt EM. Influence of Lymphatic, Microvascular and Perineural Invasion on Oncological Outcome in Patients with Neuroendocrine Tumors of the Small Intestine. Cancers (Basel). 2024 Jan 11;16(2):305. doi: 10.3390/cancers16020305. PMID: 38254794; PMCID: PMC10813650.
Conclusion: Patients with siNETs metastatic to both the liver and peritoneum have favorable outcomes after aggressive surgical cytoreduction, with the best outcomes observed after complete cytoreduction. Therefore, the presence of peritoneal metastases should not by itself preclude surgical cytoreduction in this population.
Click the blue link to read the data.
Hallbera Gudmundsdottir MD, Alessandro Fogliati MD, Travis E. Grotz MD, Cornelius A. Thiels DO, Susanne G. Warner MD, Rory L. Smoot MD, Mark J. Truty MD, Michael L. Kendrick MD, David M. Nagorney MD, Thorvardur R. Halfdanarson MD, Sean P. Cleary MD & Patrick Starlinger MD
Value of Surgical Cytoreduction in Patients with Small Intestinal Neuroendocrine Tumors Metastatic to the Liver and Peritoneum. Ann Surg Oncol 31, 5370–5376 (2024). https://doi.org/10.1245/s10434-024-15316-7
Note: Some of you may have fibrosis in the ‘retroperitoneum’ (behind the peritoneum) but you can find info on that by clicking here.
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. Some content may be generated by AI which can sometimes be misinterpreted. Please check any references attached.
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.
Thanks for reading.
Blog Facebook. Like this page please.
Personal Facebook. Like this page please.
Awareness Facebook Like this page please.
Follow me on X (formerly twitter)
Check out my online presentations
Check out my WEGO Health Awards
Long-axial field-of-view (LAFOV) systems have changed the field of molecular imaging. Since their introduction, many PET centres have installed these next-generation digital systems to provide
Crinetics Announces First Patient Dosed in Phase 1/2 Trial Evaluating CRN09682 for the Treatment of Neuroendocrine Tumours and Other Somatostatin Receptor 2-Expressing Tumours Read the
Here is the monthly summary of December 2025 on RonnyAllan.NET – Every share helps someone understand or even work towards a diagnosis, discovery of the
Summary of 2025 from Ronny It was a good year for my advocacy work but a difficult year personally which had some impact on my
15 Christmas celebrations since diagnosis. A thankful statement My Facebook memories today are full of Christmas activities including my first Christmas following diagnosis of advanced
A Global first for NET. Omni 128cm Total Body PET at the Peter MacCallum Cancer Centre in Melbourne Australia. According to Professor Michael Hofman, they
My diagnosis came with many strange words including, “carcinoid” and “neuroendocrine” ……… can you spell that please, I said to the doctor. I had a
Ronny Allan’s ‘PoNETry’ © series can be shared with poetry credit to: RonnyAllan.NET Thanks for reading Ronny I also have one about Lanreotide (or “butt
When I was diagnosed, I didn’t even feel ill. It was therefore a bit of a shock being told I had metastatic cancer, advanced enough to
I would also mention those who contributed to my “Tea Fund” which resides on PayPal. You don’t need a PayPal account as you can select a card but don’t forget to select the number of units first (i.e. 1 = £4, 2 = £8, 3 = £12, and so on), plus further on, tick a button to NOT create a PayPal account if you don’t need one. Clearly, if you have a PayPal account, the process is much simpler
Through your generosity, I am able to keep my sites running and provide various services for you. I have some ideas for 2023 but they are not detailed enough to make announcements yet.
This screenshot is from every single post on my website and depending on which machine you are using, it will either be top right of the post or at the bottom (my posts are often long, so scroll down!)
Subscribe to get the latest posts sent to your email.
