If you don’t understand the heterogeneity of Neuroendocrine Neoplasms, it’s likely you don’t really understand Neuroendocrine Neoplasms

If you read any authoritative source on this cancer, it will normally begin with “Neuroendocrine Neoplasms (NENs) are heterogeneous tumours ………….”.

“Heterogeneous” means consisting of dissimilar parts or elements, essentially meaning “mixed” or “diverse,” but I used the term “heterogeneity” to refer to the quality or state of being heterogeneous, meaning the presence of diverse components within a group or system; both terms indicate a lack of uniformity or consistency.

You will note I used the term Neuroendocrine Neoplasms here – that is in line with formal naming conventional per agreed International Agency for Research on Cancer (IARC) terms. It is an umbrella term for all types regardless of primary location, grade, differentiation, stage. Neuroendocrine Neoplasms (NENs) comprises all well differentiated Neuroendocrine Tumours (NETs) and very aggressive poorly differentiated Neuroendocrine Carcinomas (NECs), which has been described as a dichotomy (a division or contrast between two things that are or are represented as being opposed or entirely different). You will see the term “Neuroendocrine Neoplasm” and the acronym “NEN” appear more frequently in specialist papers and presentations.

Exploring NEN heterogeneity

If you drill further down into NECs and NETs, you find many examples of heterogeneity. Some examples below.

The most common primary locations of NECs and NETs can be very different.

The propensity of a primary NET to metastasise is common in some primary types but much less common in others.

NETs can vary from low stage low grade very indolent to high grade high stage very aggressive. But many low grade NETs may still metastasise over a long period, i.e. there isn’t a direct correlation between grade and stage.

If you then drill further down into NETs, you’ll find complications of ‘functional’ primary types producing hormonal syndromes. Often there are multiple possible hormonal syndromes that can be associated with a single organ, particularly the pancreas (but it would be highly unusual to have more than one hormonal syndrome simultaneously).

I once wrote a similar article called “The Heterogeneity of Neuroendocrine Neoplasms” where I outlined the issues that can be experienced in online patient forums where it is clear that many people don’t quite get how diverse this cancer types if as they submit there questions and receive misleading responses. To some extent, these issues can also surface with doctors who are unaware of the dichotomy described above.

Of course, the issues are not just confined to patient groups. Some doctors still think all NETs are called carcinoid, they all come with carcinoid syndrome and that a (say) Neuroendocrine Carcinoma of pancreatic origin is actually Pancreatic Cancer. But that’s another 3 blog posts at least!

So, there is my message to you:

Disclaimer

I am not a doctor or any form of medical professional, practitioner or counsellor. None of the information on my website, or linked to my website(s), or conveyed by me on any social media or presentation, should be interpreted as medical advice given or advised by me.

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Please also note that mention of a clinical service, trial/study or therapy does not constitute an endorsement of that service, trial/study or therapy by Ronny Allan, the information is provided for education and awareness purposes and/or related to Ronny Allan’s own patient experience. This element of the disclaimer includes any complementary medicine, non-prescription over the counter drugs and supplements such as vitamins and minerals.