I once met some fellow cancer advocates and the conversation turned to what inspired us to ‘do what we do’. When it came to my turn as the only Neuroendocrine Cancer patient, I was already prepared to regurgitate my usual ‘spiel’. As sometimes happens, a listener queried me with the words “Neuroendocrine – what’s that?“. Another focused on ‘Neuro‘ enquiring whether my nervous system or my brain had somehow become cancerous. Deja vu – here we go again!
Two days later, I was speaking to one of my online friends who was having similar problems explaining this cancer to family and friends. Again ‘Neuro‘ was proving difficult with the assumption that it’s somehow related to the brain. Technically not far from the truth but context is really important given that most people look at cancer in anatomical terms. As we know this can often lead to incorrect headlines for famous cancer patients.
I’ve struggled since 2010 to explain this disease in layperson terms. It’s actually one of the reasons for my ‘study’ and my blog. It’s getting easier, particularly when answering questions. However, if Neuroendocrine Cancer knowledge was an iceberg, I’d still be at the tip! I did write a post entitled Horrible Hormones which supports an explanation. You might like to read it – perhaps helpful to aid your overall understanding of this post. But here is a warning ……. it’s a long post and that is because Neuroendocrine Cancer is not just one type, it is many types, and that adds to the complexity. It also means that the answer cannot be provided succinctly enough, even in a single sentence, perhaps even in a single short paragraph. The heterogenieity of Neuroendocrine Cancer is legendary.
The other difficult aspect of explaining Neuroendocrine Cancer is the extent of the Anatomy and Physiology of the Neuroendocrine system which appears in numerous parts of the body. I’ve written about this before at a time when I was fed up with newspaper reports and on-line articles implying that Neuroendocrine Cancer didn’t exist – e.g. by frequently describing Neuroendocrine Tumours of the Pancreas as Pancreatic Cancer and Neuroendocrine Tumours of the Lung as Lung Cancer. During some of my own verbal discussions, mention of the small intestine was frequently met with “so you have Bowel Cancer“. NO, I DON’T! Good time to refresh yourself with my article “Neuroendocrine Cancer is NOT a type of another cancer“. This thinking needs to be challenged at every opportunity including while explaining to family and friends.
I’ve therefore decided to attempt a short, generic but still sufficiently detailed explanation of the word ‘Neuroendocrine‘ in relation to my Cancer. I suspect by the end of this article; it will not be as short as I had wished. I do like a challenge! Here goes:
The neuroendocrine system is made up of a network of cells that are distributed throughout the body. The word neuroendocrine refers to 2 qualities of these cells: they have a similar structure to nerve cells (neurons) and produce hormones like endocrine cells. Neuroendocrine cells release hormones into the bloodstream in response to chemical signals from other cells or messages from the nervous system. Basically, hormones travel in the bloodstream and makes things happen in another part of the body.
These neuroendocrine cells are scattered throughout the body performing different roles based on location, e.g. Neuroendocrine cells in the digestive system regulate intestinal movements and the release of digestive enzymes
When Neuroendocrine tumours develop in these cells, they can not only then spread to other locations, but they can also secrete excess amounts of hormones and substances which can cause an adverse effect on the body’s natural rhythm. A collection of these symptoms is known as a syndrome. There are several different syndromes depending on the location and type of Neuroendocrine Tumour BUT not everyone will be affected in this way. Most will only present in metastatic scenarios but others may present before the liver is affected.
The presence of the syndrome nearly always indicates the tumours are functional. However, the majority of tumours are non-functional (i.e. they do not overly secrete excess hormones or cause symptoms), these non-functional types can be even more difficult to diagnose.
They are a heterogenous grouping of cancers. While most Neuroendocrine Tumours are slow-growing and therefore offer good outlook if identified as early as possible and treated. Even for metastatic patients, the outlook is good with the right treatment and surveillance in the right hands. But some are more aggressive behaving like adenocarcinomas and need a different approach to treatment – these are referred to as Neuroendocrine Carcinomas.
I found it very difficult to write a short and generic explanation of the word ‘Neuroendocrine‘ in relation to cancer – no wonder I seem to spend 10 minutes verbally explaining to people and…… no wonder they sometimes look at me with glazed eyes. However, this is my offer. This is as brief as I can make it to provide understanding. I’ve cut out more than I’ve left behind and feel like I’m short-changing you! However, it needs to be basic, and it needs to be short.
Explanations that comprise lists of complex and unpronounceable words each with its own constraints and variable meanings can just lead to too much complexity and people will switch off. I could have just referred to one of the excellent publications on the web, but this isn’t really practical when in an impromptu conversation with wide-eyed listeners. That said, I believe the combination of this post and (if you see lightbulbs) the other linked posts within this one, is a good way to answer the question if someone is willing to listen (and read a short reference). You may therefore need to follow up the ‘verbal’ with the ‘written’.
To summarise, I intentionally made this explanation as generic as possible. Trying to explain every single type of Neuroendocrine Cancer will confuse and tire the best listener. If I was using this today, I would add my own additional comment about where my tumours were found and what treatment I’ve had – this I can do without a script! However, if you think this explanation is of use when verbally explaining Neuroendocrine in relation to your cancer, please feel free to share my blog post to aid understanding.
“Neuroendocrine” – what’s that? I didn’t have a clue …… until I was diagnosed with it!
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