Neuroendocrine Neoplasms:  A riddle wrapped in a mystery inside an enigma

Neuroendocrine Neoplasms: A riddle wrapped in a mystery inside an enigma

The riddle.For many years, I've been reading and blogging about Neuroendocrine Neoplasms, NENs for short.  NEN is a relatively new term which came after my diagnosis.  Nomenclature is still evolving and there is always something to learn. It's also true to say the term 'Neuroendocrine Neoplasms' is the same as saying 'Neuroendocrine Cancer'. These neoplasms are cancers that begin in specialised cells called 'neuroendocrine cells'. Neuroendocrine cells have traits similar to those of nerve cells and hormone-producing cells, particularly the latter.  In face one NET specialist said "While the name “neuroendocrine” implies that these tumors involve both nerve cells and…
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A spotlight on Grade 3 (High grade) Neuroendocrine Neoplasms

A spotlight on Grade 3 (High grade) Neuroendocrine Neoplasms

Reviewed and updated 3rd Jan 2025 High Grade Neuroendocrine Neoplasms - the forgotten patient group? When reading articles in the mainstream media, found in medical publications; and even listening to doctors speak about my disease, it's clear that the focus is on the term "Neuroendocrine Tumours" or NET for short.  Many websites of advocate foundation organisations and specialist scientific organisations, all still use the term "NET" in their naming.  I too am guilty of having a large Facebook site falling into this category.  It's little wonder that those with high grade disease can often feel like the forgotten patient group. …
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The Classification, Grading and Staging of Neuroendocrine Neoplasms (incorporating WHO 2026 classification changes)

The Classification, Grading and Staging of Neuroendocrine Neoplasms (incorporating WHO 2026 classification changes)

Updated 1st April 2026 This section of my website has been published since 2015 but the most recent update to the World Health Organisation (WHO) Classification of for Digestive Systems is about to be published.  You may see these important publications called 'Blue Books'. The main changes worth mentioning here is the addition of two new types of Gastric NETs -  Types IV and V, a genetic mutation and PPI related respectively.   A larger update will be added when the publication is available online.   The WHO Classification of Endocrine and Neuroendocrine Tumours Words are very important in NENs To enable…
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