Neuroendocrine Cancer is a complex and difficult disease to diagnose, many people struggle with symptoms for some time before they are formally diagnosed. Some continue to struggle after diagnosis. There are many facets that can confound a physician – at diagnosis and beyond.
If it’s not enough just to have tumours growing inside your body, this cancer can also be uncannily quiet delaying diagnosis. At the same time, the tumours can still be ‘functional’ and over-secrete certain hormones to add or introduce symptoms which mimic many other diseases or conditions, such as Irritable Bowel Syndrome, Menopause, Heart disease and Asthma – also delaying diagnosis. In addition to common symptoms of flushing and diarrhea, others include generally feeling weak, fatigued, pain, agitated, anxious, dizzy, nauseous, acid reflux, skin irritation, anaemic, lose weight, gain weight, low blood sugar, high blood sugar, heart palpitations, headaches, sweating, high blood pressure. Its main trick is to prevent you from being correctly diagnosed and it’s pretty good at it.
One or more of the NET syndromes can be a weird concoction of strange, powerful or terrifying ingredients, designed to make you very ill; and doctors will be confused.
Carcinoid Syndrome is one of the most powerful and dangerous ‘witches brews’.
The classic carcinoid syndrome includes flushing (80%), diarrhea (70%), abdominal pain (40%), valvular heart disease (40% to 45% but reduced to 20% since the introduction of somatostatin analogues), telangiectasia (25%), wheezing (15%), and pellagra-like skin lesions (5%). Dr. William Bean gave the following colorful description of carcinoid syndrome:
“This witch’s brew of unlikely signs and symptoms, intriguing to the most fastidious connoisseur of clinical esoterica—the skin underwent rapid and extreme changes resembling in clinical miniature the fecal phantasmagoria of the aurora borealis.”
Other components of the carcinoid syndrome are diarrhea, probably caused by the increased serotonin, which greatly increases peristalsis, leaving less time for fluid absorption. In the extreme it can cause a pellagra-like syndrome, probably due to the diversion of large amounts of tryptophan from synthesis of the vitamin B3 (Niacin), which is needed for NAD production (oxidized form of B3).
It also causes fibrotic lesions of the endocardium, particularly on the right side of the heart resulting in insufficiency of the tricuspid valve and, less frequently, the pulmonary valve and, uncommonly, bronchoconstriction. Other fibrosis spells include mesenteric and retroperitoneal desmoplasia which have the potential to dangerously obstruct important vessels and cause general discomfort at best.
But it’s not all about so called Carcinoid Syndrome
Other witch’s brews include the group of NET syndromes associated with over-secretions of Insulin, Glucagon, Gastrin, Vasoactive Intestinal Peptide (VIP), Pancreatic Polypeptide (PP) and Somatostatin, these are all types of pancreatic NETs. One of the most scary witch’s brews is the group of symptoms associated with one of the most uncommon types of NET, the catecholamine and metanephrine (adrenaline and noradrenaline) secreting tumours known as Pheochromocytoma and Paraganglioma. These tumours are likely to cause a barrage of symptoms such as High blood pressure, Heavy sweating, Headache, Rapid heartbeat (tachycardia), Tremors, Paleness in the face (pallor) and Shortness of breath (dyspnea). Some tumours are non-functional which sounds good but they remain quiet and can therefore be more difficult to diagnose and see visible signs of progression after diagnosis – surveillance becomes even more important in these scenarios.
All of the above is a diagnostic nightmare for those who have the symptoms and remain undiagnosed – it’s no fun for the doctors either – this why we need so much more awareness and education – one of the key aims of all my social media sites. Another aim of my sites is to support those who are diagnosed as these symptoms can continue following diagnosis and treatment. This is a very spooky disease, it will slowly grow without you knowing, it will mess with your body and mind, and if left alone to plot its devious and destructive course, it can kill. Some are faster growing but they have the same traits – they just kill faster.
Help is at hand …..
It’s really important to find a specialist who understands this condition and who can answer a set of questions about your diagnosis and what is likely to happen beyond it. Find one here, and find the questions there too.
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