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Carcinoid – What’s in a name?

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In my blog Carcinoid – Misnomer or Misunderstood, I outlined the history of the word and why some members of the NET community are trying to move away from its use. It might be worth reviewing this article before reading further, particularly if you’re not familiar with the debate.  If you’re pushed for time, 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.  However, ‘Carcinoid’ seems to prevail in many parts. 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’). I therefore understand why others still use it and I don’t have an issue as long as they too are accurate in their intended meaning. Unfortunately, some still use it as a synonym for all NETs which is clearly incorrect. So called Carcinoid is a just one type of NET.  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 (and to emphasise once again, so called Carcinoid is just one type of NET). However, there does not appear to be any agreement on the naming conventions and 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’.  This is what happens when the community has no widely accepted reference model.  I believe use of the anatomy has potential as a way forward but we need consistency.

Without a replacement term, the disaggregation of defined biological groupings has become more difficult i.e. what was Carcinoid of the ‘lung’, ‘appendix’, ‘small intestine’, ‘stomach’, ‘rectum’, ‘thymic’; and many other locations, we’re told is now just ‘NETs’.  This hasn’t really worked because the location of 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.

Another term I regularly see is ‘Noid’ – a truncation of Carcinoid.  Whilst I suspect that might have been popular and convenient many 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.

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).

Telling people on forums not to use the ‘C word’ is laudable but unless you provide alternatives to aid communication and understanding around NET types and syndrome types, then it may cause even more confusion.

Thanks for reading

Ronny Allan

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4 Comments

  1. Ronny Allan says:

    Exactly Jennifer, we get it. However many in our community don’t. So it must be difficult for those outside to get it!

    Like

  2. Jennifer Pettit says:

    Perfect, Ronnie. Thank you for enlightening us. For those Carcinoid/NET specialists who have been treating patients with these tumors for decades, they view carcinoid tumors as malignancies and do not really dwell on the terminology debate; rather, the Dr’s are more focused upon the diagnosis, treatment, underlying mechanisms, and new developments in the field. “Carcinoid Heart Disease”. If one wanted to change this, consideration might be given to calling it, “Serotonin-related Heart Disease”. In my personal case, NET might be politically correct; however, if someone referred to it as a Carcinoid, I would have no objection, so long as the focus is on all aspects of my diagnosis and care. This is what I have been taught.

    Liked by 1 person

  3. Mary Anne Edwards says:

    Excellent blog as usual, Ronny! I agree the issue is not just a matter of semantics. The use of the term “carcinoid” seems to lessen the significance of having this illness, as if it is some kind of lesser second-class illness. We do need to work together to achieve full recognition of the life-altering impact of the neuroendocrine disease.

    Liked by 1 person

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