Neuroendocrine Tumour (NET) – don’t let it be a Crisis

Neuroendocrine Tumour (NET) – don’t let it be a Crisis

The 5 E’s (of Carcinoid Syndrome)

The 5 E’s (of Carcinoid Syndrome)

The 5 Es was a good idea but the boundary was never properly defined.  I don't believe it applies to all NETs and I don't believe it is confined to carcinoid syndrome Original Post Since my diagnosis, I seem to have been in a perpetual learning phase! What not to do, what not to eat, what not to read! However, early on in my experience, I came across a list of 'E' words (5 of them) which is a handy reminder for Carcinoid Syndrome patients, particularly those whose symptoms are not under control. When I say "carcinoid syndrome" in this article,…
Neuroendocrine Cancer – Horrible Hormones

Neuroendocrine Cancer – Horrible Hormones

Updated and reviewed 20th March 2024 Hormonal imbalances are quite common in many conditions including day to day stuff. With Neuroendocrine Cancer, it can be a real challenge both at diagnostic and maintenance phases.  In addition to the cancer angle, there's some strange stuff going on, inexplicable, frightening for the patient, an unwanted ingredient causing chaos!Until I was diagnosed with metastatic Neuroendocrine Cancer, I didn't have a clue about hormones - it's one of those things you just take for granted. However, hormones are vital to human health (male and female) and it's only when things go wrong you suddenly…
Do we need a new model for Carcinoid Crisis in NETs?

Do we need a new model for Carcinoid Crisis in NETs?

Update January 2024 Dr Rodney Pommier, a NET specialist surgeon in Oregon has been writing about the issue of carcinoid crisis for some years and has finally produced data which turns previous guidelines on their head. Clearly when it comes to (so called) carcinoid crisis, surgeons are at the sharp end of experience alongside their anaesthetist colleagues. The detail from the study sits behind a paywall but the conclusion is given and cited below. You can read the abstract here or click on the 'conclusion' section below. I again emphasise as I have done in the original publication of this…
Neuroendocrine Tumours: a spotlight on Pheochromocytoma and Paraganglioma

Neuroendocrine Tumours: a spotlight on Pheochromocytoma and Paraganglioma

Updated 19th August 2025I spend a lot of time talking about the most common forms of Neuroendocrine Tumours (NETs), but what about the less well-known types?  As part of my commitment to all types of NETs, I'd like to shine a light on two less common tumour types known as Pheochromocytomas and Paragangliomas - with an incidence rate of approximately 8 per million per year. They are normally grouped together, and the definitions below will confirm why.  If you think it's difficult to diagnose a mainstream NET, this particular sub-type is a real challenge.So, let's get definitions out of the…