Categories, tissues and primary sites – the lost awareness of Neuroendocrine Cancer

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When you look at how cancer is classified and broken down, you can see why Neuroendocrine Neoplasm (the overarching term for Neuroendocrine Tumour and Neuroendocrine Carcinoma) often appears unlisted in certain websites and in certain clinical publications and press releases.  Moreover, it robs awareness and funding for Neuroendocrine Cancer organisations, particularly when celebrities are involved in incorrect labelling. 

Below, I wanted to cover why that sometimes happens but also why that is undeservedly detrimental to Neuroendocrine Cancer awareness.

Cancer Categories

From a histological standpoint, there are hundreds of different cancers, which are grouped into six major categories:

  • Carcinoma
  • Sarcoma
  • Myeloma
  • Leukemia
  • Lymphoma
  • Mixed Types

You may be like me and wondering where Neuroendocrine Tumours fit into these 6 types?  Clearly, they must be somewhere inside Carcinoma …… and that must refer back to the Oberndorfer “Carcinoma-like” term, something which is translated from “Carcinoid“.  As Carcinoid has been erased from the vast majority of WHO Cancer Classification ‘blue books’, let’s also hope they will address these classification and categorisation issues soon.

In the vast majority of cancer epidemiological papers, it’s clear that cancers are classified in two ways: by the type of tissue in which the cancer originates (histological type) and by primary site, or the location in the body where the cancer first developed.

When you look at the official cancer classification systems at World Health Organisation (WHO) level, something which all healthcare professionals should be using, you can see that there is no single area where all Neuroendocrine Neoplasms (NENs) are listed (it’s being talked about though). Instead, you will find Lung NENs in the Thoracic section, Pancreatic NENs in the Endocrine section, Gut NENs in the Digestive Systems section, Ovarian NENs in the Female Reproductive Organs; and so on.  You can now see why doctors often refer to NETs by their primary site nomenclature (e.g. a NET of pancreatic origin is sometimes called “pancreatic cancer”). 

However ……. the interpretation of the latest versions of the WHO books above is really important.  e.g in the 2019 Digestive Systems book…. “Tumors of the Pancreas” following by subsections separating out Neuroendocrine Neoplasms. 

Cancer Classification

Digestive System Tumours WHO Classification of Tumours, 5th Edition, Volume 1

In the 2017 Endocrine Organs book ….. “Neoplasms of the Neuroendocrine Pancreas” and I am posting that extract below (please note that Pancreatic Cancer comes from the ‘Exocrine’ Pancreas):

WHO Classification of Tumours of Endocrine Organs, WHO Classification of Tumours, 4th Edition, Volume 10

When you look at both the 2017 Endocrine Organs and the 2019 Digestive System version, you can see trends in definition e.g. they do not call them Pancreatic Cancer; they are called Neuroendocrine Neoplasms/Tumours/CarcinomasSo, it should prevent the wrong label but in practice this is not working. 

The lost awareness of Neuroendocrine Cancer

Almost every day I see something in my news feed about Neuroendocrine Cancer …. an article, a tweet, a blog post, a subscription, an alert of some kind.  Certain ones catch my eye and then something in the detail leads me to disappointment at the realisation I can’t share the information because of a major flaw in the content.  Sometimes it’s just the use of ancient and rather stupid awareness methods, other times it’s the incorrect use of the outdated term “Carcinoid”.  A common flaw is the failure to recognise that Neuroendocrine Neoplasms (Carcinomas and Tumors) can be found in numerous sites in the human anatomy.  The latest article I read about Steve Jobs was a good read until I noticed it was actually about Pancreatic Cancer and inferred that a pancreatic NET was a subtype of Pancreatic Cancer.  I spend a lot of time supporting Pancreatic Cancer because they really need the support, but we do too. In 2016, the death of Aretha Franklin, did not really help Neuroendocrine Cancer in an awareness sense. Although some ground was made up via my blog site and help and invention from NET Research Foundation, the sheer extent of the publicity this great lady got is now ingrained in the bowels of the online media and it’s difficult to undo.   The 2023 case of Maria Menounos is a classic example – click here

There are huge differences between Pancreatic Cancer and Neuroendocrine Cancer with a pancreatic primary – click here to read more.

Of course, there is a trend with famous NET patients being labelled with something else and I outlined this issue in my post “The Human Anatomy of Neuroendocrine Cancer” which already has over 50,000 hits. We need to keep clawing back some of that lost awareness. And we need to continue to emphasise that Neuroendocrine Cancer is NOT a type of another cancer PERIOD.  Click here and share please!

I once told a story in a post called Neuroendocrine – what’s that?“, about my own experience in communicating the details of my condition.  To cut a long story short, as soon as I mention my primary site was in the ‘intestine’, people assume I have some kind of bowel cancer. Cue – a careful explanation which doubles up as awareness.

Our situation is not helped by many ‘big hitter’ cancer organisations, who mostly tend to list cancers by anatomical site, nearly always in alphabetical order.  Many of them then add Neuroendocrine Tumors of the Pancreas, Lung, Appendix, to the description for Pancreatic, Lung and Appendiceal Cancer sections respectively, i.e. inferring that they are subtypes of those cancers.  I get the reason for the anatomical listing, but system-wide cancers also need to be included, i.e. Neuroendocrine disease should be listed as an entity under N. Which bit of the phrase “Neuroendocrine tumors can occur anywhere in the body” is not understood! It is cancer in its own right, with its own medical coding, its own classification system, its own specialists and specialist centres, its own awareness.  It’s not a type of another cancer!  Please list it under N !!!

This issue causes us to lose awareness everywhere we look.  Read a story about an outstanding awareness campaign featuring a Neuroendocrine Carcinoma patient – click here.

A Neuroendocrine Tumour is NOT
Click to read more

My name is Ronny Allan and I have a Neuroendocrine Cancer with a Small Intestinal Primary. I do not have Bowel Cancer!

You may also be interested in the following posts:

The little suckers get everywhere (click here)

The Human Anatomy of Neuroendocrine Cancer (click here)

Carcinoid vs Neuroendocrine (click here

Pancreatic Cancer vs Neuroendocrine Tumours of the Pancreas (click here)

click on the picture to read

In fact, many things degrade awareness of Neuroendocrine Cancer, I write about these things frequently – here is a list of blogs tagged with the category of “Awareness“. 

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7 thoughts on “Categories, tissues and primary sites – the lost awareness of Neuroendocrine Cancer

  • Like I commented on your Facebook page, my answer to this is to direct my frustration into action. I sent this to Australia’s NEW health minister. It doesn’t show here but hope it was OK to link to your blog re: Steve Jobs and use info you posted about “increased attention to NETs”, which I found particularly interesting.

    Please help to raise awareness of the rising rate of NETs
    Myself and 10,000 other people in Australia need your help to raise awareness of the rising rate of Neuroendocrine Tumours (NETs).

    Specifically this issue needs to be taken up by your department to be the first country in the world to take NETs off the “rare” or “uncommon” cancer list so that it can be researched and a cure found.

    You may be unaware that both Steve Jobs and Aretha Franklin died of NETs.

    I was diagnosed two years ago. Treatment post surgery is “wait and see” or as my oncologist stated in a letter to my GP “we have explained to Judy the natural course of this disease (70% recurrence rate). That is not good enough. If your loved one was diagnosed with this cancer would you be happy if little was done?

    In an except from a US study, this statement particularly resonates:

    Making the case for increased attention to NETs

    “I think the most important thing this paper does is help us articulate the size and scale of the NET problem to help us position and articulate how important this is on a population level,” said co-author Dan Halperin, MD, MD Anderson Cancer Center, who is also a NETRF-funded researcher.

    Further there are NO programs out there for people diagnosed with NETs. After my surgery to remove the tumour(s), I was sent on my way with no dietary or exercise advice. If I had contracted breast or bowel cancer, I would been provided support. It is a disgrace for ANY cancer patient to be treated in this way.

    There are few NETs specialist hospitals, but if you don’t get seen by one of them from the get-go (because you live in a different region, state or rural area) you are not advised of such centres exisiting.

    It took me six months post surgery to discover the hospital across the harbour should have been where I was sent. In fact, the statistics show that the average GP NEVER sees a NETs patient in their working lifetime. Specialists see very few and yet this cancer is on the rise!

    There is ONE organisation in Australia supporting this cancer: The Unicorn Foundation, which states there are 1800 new cases diagnosed each year. In Australia there are 10,000 known cases and more than $300,000 is needed for urgent funding.

    As a Health Care Ambassador for Health Storylines, I feel it is my duty to raise awareness for this hideous disease that gains little recognition or understanding.

    I am considering starting a global movement where signatures are gathered to showcase just how many lives around the world have been affected by Neuroendocrine Tumours.

    What would your department need to get behind NETs to ensure there is a centre of excellence into research, awareness and support for people facing this condition?

    Kind regards
    Judy Wilkinson

  • Greg Scollan

    Hi, Really appreciate your efforts and blogs.

    I had a MANEC tumour – (Mixed adenoneuroendocrine carcinoma)

    The first time my oncologist used that term I thought he was being a bit unprofessional! What do you mean I have a manic tumour?

    I rarely see any stories or articles on this except technical stuff in medical journals. Would appreciate if you could cast your beady eye on this topic and put up any relevant links.

    Keep up the good work..


    • Greg, i have a post planned on high grade tumors and will be including MANEC, which incidentally is now called MiNEN, mixed non-Neuroendocrine / Neuroendocrine neoplasms. This was necessary to cover all scenarios, i.e. to include well differentiated mixed types. I try to explain things in patient speak by decoding medical documents

  • You bring pleasure to my day when i read your story of the week. Its hope really. Its the hope that with the most excellent and wonderfully written truths and patient experience you illuminate reality to the uninformed. THANKYOU.
    I’m the only NET patient my gp has so he does not truely understand how my diabetes that appeared post primary finding and surgery has an impact on the diabetic condition. I understand as a gp he cannot possibly have the expertise of every kind of specialist of every kind of illness. This again is why it is so important for each of us to self advocate, become educated as much as possible about our disease and share that with anyone willing to listen and learn.
    So this is why what you are doing Ronny is so vital, so magnificent and so totally appreciated!!! The whole world over !!!

    You are loved and appreciated beyond words.
    Vancouver B. C.

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