Neuroendocrine Cancer – let’s raise our ‘sites’

lets 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 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. The latest celebrity death, Aretha Franklin, has not helped Neuroendocrine Cancer in an awareness sense.

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 20,000 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 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!

Another interesting feature of certain types of Neuroendocrine Cancer is multiple primaries.  It’s not uncommon to have multiple primary tumours but they do tend to be in the same organ or site.  However, certain uncommon types of Neuroendocrine Cancer such as Pheochromoctyomas/Paragangliomas (including hereditary versions) there can multiple primaries at different sites. Multiple Endocrine Neoplasia (MEN) are a group of disorders (hereditary syndromes) that affect the endocrine system. The disease typically involves Neuroendocrine Tumors in multiple endocrine glands and may cause the glands to become overactive and overproduce hormones.

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

The Human Anatomy of Neuroendocrine Cancer

Carcinoid vs Neuroendocrine

Thanks for reading

Ronny

I’m also active on Facebook. Like my page for even more news. I’m also building up this site here: Ronny Allan

Disclaimer

My Diagnosis and Treatment History

Most Popular Posts

Sign up for my twitter newsletter

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

patients included

 

 

 

 

 

Author: Ronny Allan

Facebook: https://m.facebook.com/NETCancerBlog and https://m.facebook.com/RonnyAllanBlog twitter: @ronnyallan1 twitter: @netcancerblog

7 thoughts on “Neuroendocrine Cancer – let’s raise our ‘sites’”

  1. 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. https://netrf.org/study-shows-rising-rates-of-net-incidence-prevalence-and-survival/

    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

    1. great letter Judy! Sure – link away to any of my material. My one on it not being rare would be useful too.

  2. 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

    https://polldaddy.com/js/rating/rating.js

    1. 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

  3. 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.
    Grant
    Vancouver B. C.

Leave a Reply