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.
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:
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.
Neither should any post or comment made by a follower or member of my private group be assumed to be medical advice, even if that person is a healthcare professional. Some content may be generated by AI which can sometimes be misinterpreted. Please check any references attached.
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.
Thanks for reading.
Blog Facebook. Like this page please.
Personal Facebook. Like this page please.
Awareness Facebook Like this page please.
Follow me on X (formerly twitter)
Check out my online presentations
Check out my WEGO Health Awards
A Global first for NET. Omni 128cm Total Body PET at the Peter MacCallum Cancer Centre in Melbourne Australia. According to Professor Michael Hofman, they
My diagnosis came with many strange words including, “carcinoid” and “neuroendocrine” ……… can you spell that please, I said to the doctor. I had a
Ronny Allan’s ‘PoNETry’ © series can be shared with poetry credit to: RonnyAllan.NET Thanks for reading Ronny I also have one about Lanreotide (or “butt
When I was diagnosed, I didn’t even feel ill. It was therefore a bit of a shock being told I had metastatic cancer, advanced enough to
I was assessing performance of the awareness period in November 2025 on Facebook and was astonished to find the size of my reach on that
Here is the monthly summary of November 2025 on RonnyAllan.NET – Every share helps someone understand or even work towards a diagnosis, discovery of the
Discover more from Ronny Allan – Living with Neuroendocrine Cancer Subscribe to get the latest posts sent to your email. Type your email… Subscribe
Bone metastases in Neuroendocrine Tumours (NET) Many of you will know that I am a stage IV small intestine NET and I have one bone
What is Radioligand Therapy? When you browse the internet, you may see the term “Radioligand Therapy (RLT)” and wondered what it was. There’s a simple
I would also mention those who contributed to my “Tea Fund” which resides on PayPal. You don’t need a PayPal account as you can select a card but don’t forget to select the number of units first (i.e. 1 = £4, 2 = £8, 3 = £12, and so on), plus further on, tick a button to NOT create a PayPal account if you don’t need one. Clearly, if you have a PayPal account, the process is much simpler
Through your generosity, I am able to keep my sites running and provide various services for you. I have some ideas for 2023 but they are not detailed enough to make announcements yet.
This screenshot is from every single post on my website and depending on which machine you are using, it will either be top right of the post or at the bottom (my posts are often long, so scroll down!)
Subscribe to get the latest posts sent to your email.
