Neuroendocrine Cancer: At least 50 shades of grey

Neuroendocrine Cancer: At least 50 shades of grey

Awareness, Patient Advocacy
If you read any authoritative source on this cancer, it will normally begin with "Neuroendocrine Neoplasms (NENs) are heterogeneous tumours .............".  The term heterogeneous means diverse in character or content; or a structure with dissimilar components or elements.  This is not surprising as these tumours are found in Neuroendocrine cells throughout the vast majority of the human anatomy. And yet, when you look at many hospital/healthcare sites, advocate organisation sites, and cancer information sources not maintained by Neuroendocrine Cancer scientists or specialists, you might start to think there is just one big type of NET and only one syndrome. Once again, this is partly related to the lingering use of the term Carcinoid. Even within the community, so many people make blanket statements about Neuroendocrine Cancer which are misleading, e.g."they're all…
Read More
The Heterogeneity of Grade 3 (High grade) Neuroendocrine Neoplasms

The Heterogeneity of Grade 3 (High grade) Neuroendocrine Neoplasms

Awareness, Patient Advocacy
Reviewed and updated 14th March 2022High Grade - 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.  Clearly all the aforementioned organisations support all patients regardless of grade, but it's true to say that the naming and general use of terminology continues to fall behind. It's also true that the term…
Read More
Grading and Staging – Neuroendocrine Neoplasms (incorporating WHO 2021 changes)

Grading and Staging – Neuroendocrine Neoplasms (incorporating WHO 2021 changes)

Patient Advocacy
One of the most discussed and sometimes confusing subjects on forums is the staging and grading of Neuroendocrine Neoplasms (NENs). Mixing them up is a common error and so it's important to understand the difference despite the apparent complexity. If I was to make a list of questions for my specialist/Oncologist at diagnosis, it would include "What is the stage, grade and differentiation of my cancer". To enable me to synchronise with the documented guidance, I'm going to use the following WHO 2019 approved terms in this post and then provide an update of the key WHO 2019 changes below.Neuroendocrine Neoplasm (NEN) - all types of Neuroendocrine tumour of whatever grade (please note Neoplasm is another word for tumour)Neuroendocrine Tumour (NET) - all well-differentiated tumours, Grade 1,2 or 3 (an…
Read More