Translate
Subscribe to Blog via Email
Ronny Allan
Why do I need to write about this?
I’ve been watching confusion surrounding symptomatic pancreatic NETs for years and it never ceases to amaze me that people automatically think “carcinoid syndrome”. Despite the fact that pancreatic NETs were never included in the category of “carcinoid tumours”; and despite the fact that there are at least 6 or 7 known pancreatic NET hormonal syndromes, this myth persists. Don’t misunderstand me though, a serotonin secreting pancreatic NET is possible, it’s just not nearly as common as it’s made out in patient groups and on some websites. It’s a highly unusual scenario.
Why is this a problem? A mixture of issues, including but not unlimited to; poor moderation in patient groups, websites out of date, doctors out of date, even the names of patient advocacy groups cause such confusion.
Many pancreatic NET patients claim carcinoid syndrome as they have diarrhea. But if you look at the symptoms of non-functional and functional pancreatic NETs, in addition to secondary issues, diarrhea comes up several times including but not limited to; non-functional pancreatic NET, and functional pancreatic NETs such as Gastrinoma, VIPoma and Somatostatinoma. Add confusion I see in patient groups between diarrhea and steatorrhea. Flushing already has several secondary causes outside of carcinoid syndrome – read more by clicking here.
Incidence of serotonin secretion in pancreatic neuroendocrine tumours
I wanted to confirm how uncommon this scenario was and found this study from some of the world’s most respected NET experts who work in one of the world’s most respected NET centres of excellence. This is backed up by another document referred below (Reference 1).
It’s known that serotonin can be elevated but not sufficiently to cause symptoms or carcinoid syndrome, which is true of many hormonal issues with most NETs. It’s also known that many cases of carcinoid syndrome do not manifest until there are liver metastases (or less common scenarios as described below).
According to Reference 1, Carcinoid syndrome occurs when biologically active amines and peptides enter the systemic circulation escaping the first-pass metabolism of the liver. Normally, these bioactive products are inactivated by the liver. However, in cases of neuroendocrine tumours with liver metastasis, either these bioactive products are directly released into the systemic circulation, or they escape inactivation due to deranged liver function. Less commonly, carcinoid syndrome can occur without liver metastasis in conditions like a primary gut tumour with extensive retroperitoneal nodal metastases, a bronchial or ovarian NET, where it’s possible for bioactive amines to be released directly into the systemic circulation.
According to Reference 2 below, elevated serotonin is possible in pancreatic NETs (7.8%) but only 0.8% were also diagnosed with carcinoid syndrome.
Further Reading
- Biochemical Testing in Neuroendocrine Tumors – Endocrinol Metab Clin North Am. 2017 Sep; 46(3): 669–677. Published online 2017 Jun 12. doi: 10.1016/j.ecl.2017.04.004 Vidya Aluri, MD, MS and Joseph S. Dillon, MB, BCh
- Incidence and prognostic value of serotonin secretion in pancreatic neuroendocrine tumours. Wouter T. Zandee, Roxanne C. van Adrichem, Kimberly Kamp, Richard A. Feelders, Marie-Louise F. van Velthuysen, Wouter W. de Herder First published: 02 May 2017 https://doi.org/10.1111/cen.13364
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.
Subscribe to Blog via Email
Top 10 Posts & Pages in the last 48 hours (auto updates) (Click the titles to read them)
Thanks for reading.
Personal Facebook. Like this page please.
Blog Facebook. Like this page please.
Awareness Facebook Like this page please.
Sign up for my newsletters – Click Here
My Diagnosis and Treatment History
Check out my online presentations
Check out my WEGO Health Awards
Check out my Glossary of Terms – click here
Please Share this post for Neuroendocrine Cancer awareness and to help another patient

A Spotlight on Neuroendocrine Cancer Syndromes – Carcinoid Syndrome
What is Carcinoid Syndrome? Carcinoid syndrome (CS) is the most frequent hormonal complication accompanying neuroendocrine neoplasms (NENs) and is defined by chronic diarrhoea and/or flushing in the

Somatostatin Receptor Positive Advanced Bronchial Neuroendocrine Tumors – PRRT vs Everolimus
I was delighted to see this clinical trial which looks at the efficacy of PRRT (Lu177) vs the efficacy of Everolimus (Afinitor). The latter is

Opinion: Let’s attack Cancer metaphors
Since I started blogging, I’ve read dozens of articles on the subject of ‘cancer metaphors’ and in particular their use in describing cancer experiences with

A review of November 2023 on RonnyAllan.NET – Living with Neuroendocrine Cancer
November is always busier as I help spread awareness for 10th Nov (remembering that every day is 10th Nov on my site!). I also managed

European Neuroendocrine Tumor Society (ENETS) 2023 guidance paper for Digestive Neuroendocrine Carcinoma
This ENETS guidance paper, developed by a multidisciplinary working group, provides up-to-date and practical advice on the diagnosis and management of digestive neuroendocrine carcinoma, based

Neuroendocrine Cancer – Clinical Esoterica
One of the key awareness messages for Neuroendocrine Cancer is the hormonal syndromes that can often accompany the diagnosis for many people. As it’s a

Neuroendocrine Cancer – The F Words
When I first created my blog in April 2014, I had to find some material to lead up to my 84 mile walk (at the

Laughter is the best medicine
Laughter is important. This is a remastered version of one of my early blog posts. It centred on a ‘get-well’ card I received recuperating in

European Neuroendocrine Tumor Society (ENETS) 2023 guidance paper for gastric neuroendocrine tumours (NETs) G1–G3
The ENETS 2023 guideline for gNETs are combined with the guidelines for Duodenal NET (dNET) due to their close relationship in anatomical terms. Gastric neuroendocrine