Neuroendocrine Cancer: oh yes, it’s the great pretender

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.

It was 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 common 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. This serotonin secreting NET is 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/or 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).

Help is out there, hopefully more help is coming

Thankfully, due to increased awareness, better imaging techniques, and more education within the healthcare profession, things are improving with signs of earlier stage diagnoses but there is still so much more to do.  We need more secondary care knowledge, primary care would be useful too, but the former should remain the focus.

Our advocate organisations need to focus on epidemiology in the 2020s rather than being stuck with 1980s ideology, recently identified as a barrier to more research.  Our awareness must be up to date rather than cult-like.

We need more specialists – click here for a list of lists (but local knowledge is also useful)

If you are suspicious that you have Neuroendocrine Cancer but not yet been formally diagnosed, you may appreciate this article.  If you are finally diagnosed on the back of this post, I want to hear from you, I want to tell your story.

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

Disclaimer

I am not a doctor or any form of medical professional, practitioner or counsellor. None of the information on my website, or linked to my website(s), or conveyed by me on any social media or presentation, should be interpreted as medical advice given or advised by me. Neither should any post or comment made by a follower or member of my private group be assumed to be medical advice, even if that person is a healthcare professional. Some content may be generated by AI which can sometimes be misinterpreted.  Please check any references attached. Please also note that mention of a clinical service, trial/study or therapy does not constitute an endorsement of that service, trial/study or therapy by Ronny Allan, the information is provided for education and awareness purposes and/or related to Ronny Allan’s own patient experience. This element of the disclaimer includes any complementary medicine, non-prescription over the counter drugs and supplements such as vitamins and minerals.

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