Neuroendocrine Tumours: a spotlight on Pheochromocytoma and Paraganglioma

Neuroendocrine Tumours: a spotlight on Pheochromocytoma and Paraganglioma

Awareness, Patient Advocacy
I 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 way:Pheochromocytomas (Pheo for short)Pheochromocytomas are tumours of the adrenal gland that produce excess adrenaline. They arise from the central portion of the adrenal gland, which is called the adrenal medulla (the remainder of…
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Neuroendocrine – don’t let it be a Crisis

Neuroendocrine – don’t let it be a Crisis

Awareness, Living with Neuroendocrine Cancer, Patient Advocacy, Treatment
Update 15th November 2021.   A study presented at NANETS 2021 produced data to suggest the causes and treatment for carcinoid crisis have been wrong and that a new model is required.  Read the article here or by clicking on the picture.Author's notes:  This is probably a controversial conclusion in some circles and it's worth pointing out that so-called 'carcinoid crisis' isn't going away, just the need for time-consuming and expensive, and apparently ineffective according to the study, perioperative protection.  And the study also noted that medication to treat complications was still required.  I don't believe we should immediately dismiss this conclusion as one of the authors is a 'big hitter' NET Specialist surgeon (Dr Rodney Pommier) whose job is to keep patients safe on the operating table.However, it's the second…
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Neuroendocrine Cancer Nutrition Series Part 4 – Amines: Food for Thought?

Neuroendocrine Cancer Nutrition Series Part 4 – Amines: Food for Thought?

Diet and Nutrition, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship
reviewed and updated 12th Feb 2022Background.Nutrition is an important subject for many cancers, but it can be particularly important for many Neuroendocrine Cancer patients. When I started writing my nutrition series (I listed the other parts below), I said that my intention is not to tell you what to eat, even though that might be a challenge for many, and this theme continues. The issue with Nutrition and Diet, in general, is that it's very individual and what works for one may not work for another.I like to focus on why such things might have an effect - patients can then experiment and see what works for them. Sometimes very few changes are required and settling on a diet that works for you is the optimum solution. p.s. Not everyone has…
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Neuroendocrine Cancer – Horrible Hormones

Neuroendocrine Cancer – Horrible Hormones

Patient Advocacy
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 appreciate how important they are.  Hormones are involved in many conditions, not just an issue with Neuroendocrine Tumours (NETs) but the presence of over-secreting hormones (often called peptides throughout) is useful to aid a diagnosis, albeit…
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