A quick primer on the word ‘CARCINOID‘.  It originates from the term ‘Carcinoma-like’.  ‘CARCIN’ is a truncation of Carcinoma (by definition cancerous or malignant tumour). ‘OID’ is a suffix meaning ‘resembling’ or ‘like’.  This infers that Carcinoid cannot be a truly malignant tumour – thus the confusion (….. and anger!). The most worrying connotation of the use of the word ‘Carcinoid’ is the belief that they all have benign clinical and biological behaviour.  That is dangerous thinking which could end up killing people.

There is now widespread use of the term Neuroendocrine Tumours (NETs) and this is based on the latest classification scheme pushed out by the World Health Organisation (WHO) in 2010 subsequently updated by WHO 2017.  The correct term for all types is actually Neuroendocrine Neoplasm (NEN) which is an umbralla term for all well differentiated tumours (NETs) and poorly differentiated carcinomas (NEC).  I’ll use NET going forward as that is where the confusion lies.

However, ‘Carcinoid’ seems to prevail in many parts of social media, advocate organisations, patients, even doctors are out of date. As a blogger and social media geek, I still use it as it’s a popular search phrase (although I’m always careful with context and in the correct ‘scenario’).  However and unfortunately, some still use it as a synonym for all NETs which is clearly incorrect. So called Carcinoid was ever only one type of NET albeit covering more than one location. I’m therefore baffled by the continued and frequent use of phrases such as “Carcinoid and Neuroendocrine Tumours” which misleadingly infers they are different cancers. Not helpful.

To prevent confusion, the use of the term NETs frequently needs to be expanded to distinguish between the different types. However, there does not appear to be any agreement on the naming conventions and I suspect this is probably one of the reasons why many people (including NET Specialists and advocate organisations) continue to use the term Carcinoid. I’ve seen sporadic use of the term SINET (small intestinal NET) and SB NET (small bowel NET) and we already have pNET (notice the syntax difference …..) and more recently I’ve seen ‘PanNET’.  I believe use of the anatomy has potential as a way forward but we need consistency.  Check out my article below entitled Carcinoid vs Neuroendocrine for advice on the correct terminology to use.

The primary NET is really important for context and understanding, thus why many patient advocate organsiation and cancer sites will still classify and list ‘Carcinoid’ as a single NET type rather than the long list of anatomical locations which can no longer be grouped under the heading of the Carcinoid type.  There are also many other factors involved and no solution seems to be perfect up to this point.  As for syndromes, there are several. So patients confused by the ‘instruction’ on the use of ‘Carcinoid’ will just say “I have the syndrome”. Just which one are they talking about? We also need to consider Carcinoid Heart Disease and Carcinoid Crisis and I have excellent suggestions for renaming both.

Another term I regularly see is ‘Noid’ – a truncation of Carcinoid.  Whilst I suspect that might have been popular and convenient 20 years ago, clearly it is not helpful when you consider the issues above.  Personally speaking, I find myself annoyed by being described as a Noid! Particularly when the ‘oid‘ part is what is causing the angst described above.  And while we’re at it, I’m also annoyed by being described as a zebra, that is another thing holding up our 21st century awareness campaigns.  Let’s move out of the 1980s please!

Some might say all of the above is just semantics and it’s nothing to get too excited about.  However, I believe we need more coordinated awareness and more coordinated clout for Neuroendocrine disease.  We should at least be consistent with the nomenclature messages (amongst other things).

You’ll find updated thinking in my other post “Carcinoid vs Neuroendocrine”

Fortunately the big NET specialist organisations are slowly getting rid of the word ‘Carcinoid’ and this is long overdue.  It will take a while and patients can set the example for the doctors and medical writers.