Neuroendocrine Cancer – let’s raise our sites

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’d not be able to share the information because of a major flaw.  A common flaw is the failure to recognise that Neuroendocrine Neoplasms (Carcinomas and Tumors) can be found in numerous places 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.

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 10,000 hits. We need to keep clawing back some of that lost awareness.

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 the word ‘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 location, 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 be included, i.e. Neuroendocrine disease should be listed as an entity under N. Which bit of “Neuroendocrine tumors can occur anywhere in the body” is not understood! It is a cancer in its own right, with its own medical coding, its own classification system, its own specialists and specialist centres.  It’s not a type of another cancer!  That said, you can often find  the misnomer term ‘Carcinoid’ listed under ‘C‘ and that is part of the image and awareness problem that results when the correct nomenclature is not used, or, as is the case with many organisations, their sites are not kept up to date.

I once wrote a blog using a title inspired by a patient comment – “The little suckers get everywhere”.  This was an early attempt by me to define all the locations I had gathered in from patient comments on my Facebook site.  Did I miss any?  Please let me know!

Clearly we need to ‘raise our sites’ and shout louder!




Thanks for reading


You may also be interested in the following posts:

The little suckers get everywhere

The Human Anatomy of Neuroendocrine Cancer

Carcinoid vs Neuroendocrine

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Remember ….. in the war on Neuroendocrine Cancer, let’s not forget to win the battle for better quality of life!








5 thoughts on “Neuroendocrine Cancer – let’s raise our sites

  1. Greg Scollan September 12, 2017 / 15:02

    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..


    Liked by 1 person

    • Ronny Allan September 12, 2017 / 16:09

      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


  2. grantsviews September 11, 2017 / 21:11

    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.

    Liked by 1 person

  3. Deanna Vickery, Mrs September 11, 2017 / 18:57

    I share your frustrations. Nowadays I always start – as you state above – by saying I have ‘neuroendocrine disease’ then follow the questions which arise in order to bring ‘awareness’.

    Liked by 1 person

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