An awareness post from Ronny Allan. 

There are a lot of scary diseases in this world but some of them are particularly sneaky.  One such sneaky disease is the lesser-known type of cancer that infiltrated my body – Neuroendocrine Cancer. Not only is it scary and sneaky, but it’s also cunning, devious, misleading, and double-crossing. It likes nothing better than to play tricks on you. Don’t be fooled, it’s the great pretender.

It will grow in your body without you knowing.  It finds places to hide, mainly the small intestine, appendix, lungs, stomach, pancreas, rectum, and a host of other places. It can be fiendishly small to avoid being seen.  Once it’s established in the primary location (….or locations), it will try to break out via your blood and lymphatic systems.  It wants to establish other bases in your mesentery, your liver, your lymph nodes, your bones, and any other place it can get to.

It can often be uncannily quiet, not showing any symptoms. However, sometimes it wants to have fun by over-secreting certain hormones to add or introduce symptoms that mimic many other conditions such as IBS, asthma, abdominal upset, diarrhea, flushing. These are just more tricks up its sleeve, and they are very often a hormonal syndrome produced by cancer or caused by tumours pressing against important vessels or organs.

You will go to your doctor, perhaps many times, to report what looks like routine/regular symptoms. Unfortunately, it’s also really good at tricking most of your doctors. After several visits and despite your concerns, your doctors could become so frustrated that nothing serious is obvious, they might even start to think it’s all in your head. This is exactly what Neuroendocrine Cancer wants, it’s just getting started.

One particular type of NET has a wicked trick up its sleeve.  This one will over-secrete a hormone called Serotonin which can often cause fibrosis in your abdominal area, potentially causing obstructions and damage to major organs and blood vessels.  It’s not finished though; it will also try to introduce fibrosis to the right side of your heart causing more life-threatening issues. In addition to common symptoms of flushing, this type and others will also make you feel weak, fatigued, in pain, agitated, anxious, dizzy, nauseous, jaundiced, acid reflux, skin irritation, anaemic, lose weight and give you heart palpitations.

It’s a real Witch’s Brew of symptoms and living with it is often not easy but its main trick is to prevent you from being correctly diagnosed and it’s pretty good at it.

Another great hider and pretender are the catecholamine secreting group of NETs called Pheochromocytomas and Paragangliomas – this type of tumour can hide and cause symptoms for years and for some people, it may not be found until an autopsy (see Gen Eisenhower story).  You can see from the main symptoms of this type of NET, hiding and pretending are pretty simple. Symptoms include (but are not limited to) headaches, heavy sweating, a rapid heartbeat (tachycardia), high blood pressure, a pale face, feeling or being sick, feeling anxious or panicky, shakiness (tremor).

There are numerous types of Neuroendocrine Tumours, some are more dangerous than others, but they all have the potential to become dangerous. You need someone who knows what they are talking about to give you confidence about how dangerous yours is and how dangerous it could become. You need someone who knows what to look for and how to keep an eye out. 

Neuroendocrine Cancer actually wants to kill you, and if it’s left to plow its relentless path throughout your body without a risk assessor, that’s exactly what it could do, slowly but surely. 

It’s not just slow and scary, it can also be deadly. Spread the word and help save a life.

If you are suspicious that you have Neuroendocrine Cancer but not yet been formally diagnosed, you may appreciate this article.