When I was diagnosed, I didn’t even feel ill. It was therefore a bit of a shock being told I had metastatic cancer, advanced enough to kill me without treatment.

Hiding

But it did make me think back to some minor irritants, or to be accurate what I thought were minor irritants, things that I could not explain, things that I did not think were serious enough to speak to a doctor.  And what would this doctor have said at the time?

I was never misdiagnosed because I was never diagnosed with anything that wasn’t already there and documented. But despite my late stage and advanced diagnosis, some people were not as fortunate as me, an observant and efficient nurse sent me for blood tests, one thing or another led to a CT scan and boom! I’m finally diagnosed with Neuroendocrine Cancer.

It’s very often a silent cancer that 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 get noisy by over-secreting certain hormones to add or introduce symptoms that mimic (pretend to be) 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.

It’s not only great at hiding, but also at pretending to be something else

You will go to your doctor, perhaps many times, to report what looks like routine/regular symptoms. Unfortunately, it’s also really good at fooling your doctors and masking the NET via existing illnesses. 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, and another form of fibrosis can also present in the mesentery and retroperitoneal cavity. In addition to common symptoms of flushing and diarrhea, this type will also make you feel weak, fatigued, give you abdominal discomfort, signs of anaemia, lose weight and may even give you heart palpitations and wheezing.  It’s a real Witches’ 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.

Other pretenders include the functional Pancreatic NETs with tumour types of Insulinoma, Glucagonoma, Gastrinoma, Somatostatinoma and VIPoma, a wide grouping of symptoms perhaps masquerading as diabetes, IBS, chronic diarrhea, GERD (acid reflux) and more. 

Even non-functional tumours in any area can pretend to be something else, for example tumours pressing on important blood vessels or other organs, causing unexplainable symptoms happily recognised as day-to-day problems such as asthma or diarrhea. 

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 pretence 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).