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 (amongst other alleged awareness topics). 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. 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 25,000 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! Please list it under N !!!
This issue causes us to lose awareness, read a story here about an outstanding awareness campaign featuring a Neuroendocrine Carcinoma patient.
The misnomer term ‘Carcinoid’ is often 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.
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.
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 (sites is not a spelling error!) My name is Ronny Allan and I have a Neuroendocrine Cancer with a Small Intestinal Primary. I do not have Bowel Cancer!
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