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…
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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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Chemotherapy for Neuroendocrine Neoplasms

Chemotherapy for Neuroendocrine Neoplasms

By Ronny Allan – Living with Neuroendocrine Cancer Chemotherapy has a long and complicated history in the management of Neuroendocrine Neoplasms (NENs) (an umbrella term for both Neuroendocrine Tumours (NET) and Neuroendocrine Carcinomas (NEC)).  Unlike many other cancers, most well‑differentiated NETs are relatively resistant to traditional cytotoxic chemotherapy. However, chemotherapy remains an important option for specific subtypes, particularly higher‑grade disease, and certain anatomical sites.  There's a myth that circulates the NET patient groups along the lines of "chemotherapy does not work for NETs". That's not entirely true or at best totally out of context.  However, it's true to say that…
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