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Ronny Allan
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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.
Double Toil
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 the 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.
And Trouble
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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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.
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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Thanks for the comments
Went for 3-month PET scan w/Gallium68 last week. Onc says they hope to go to Copper64 soon. How do you feel about this change for p-NET with overexpression of somatostatin receptors
Looks OK. Couple of guys from Denmark in my group bern using it for some time. See my article
https://ronnyallan.net/2018/08/30/64cu-dotatate-a-potential-addition-to-the-somatostatin-receptor-pet-imaging-for-neuroendocrine-cancer/
Thinking about this, we have never really been educated by any doctor. I think everything was assumed. First onc doc was the person who sent my path from St Joe Hospital in ATL to MDAnderson that diagnosed me with islet cell carcinoma and not just plain cancer of the pancreas. Second doc in NEXEVAR clinical at Mayo in Jacksonville was only a reserach onc that checked my progression for remaining in compliance with the clinical parameters. Didn’t really care about NET that showed. Third onc put me actual NET clinic in New Orleans and Ochsner Hospital. Put me into Phase III clinical for Afinitor (Everolimous) that I have been on ever since. Fourth onc followed me continung clinical on Afinitor, Afinitor approved by FDA, bye bye restictions on clinical trial for Afinitor, go to perscription for Afinitor, and take out half my liver and tail of my pancreas for debulking. Fifth onc was again another reserach onc at Dana-Farber. He would answer questions with great clarity. But, if you didn’t ask, you were not going to find out a thing. Personality not much. Current onc is the same one now at Markey Cancer in Lexington, KY that I had in New Orleans. Had significant non-chemo embolization last October that put me into the U of Tennessee Med Center for month of Novermber. Nobody really found out my infectio, but sounds like my body reacted to all the dead cells going into my system from the embolization. You don’t read about really any education at all. Bascially all self taught thru Google or looking for my next clinical thru NIH, etc. I feel like I have to start from ground zero again.
You’ve been to many top NET hospitals so it’s difficult for me to understand why you’ve not been learning from them. Learning on Google is fine if you’re aware of the internet pitfalls. I still think you need to learn the answers to these questions otherwise you’re never really sure what you’re dealing with and you may be learning the wrong things https://ronnyallan.net/2017/04/25/diagnosed-with-neuroendocrine-cancer-10-questions-to-ask-your-doctor/
How can I learn more from your knowledge and discussion of NETs when I am actually a pNET guy with islet cell carcinoma? I ran into this before when I tried to join a NET support group. I don’t have the same symptoms. So I can’t talk about flushing or diarrhea. And yet my pancreatic cancer having metastasis to the liver is “the same”. My diagnosis was completely off the wall and came about literally from nowhere. I could go on and on, but how can I learn from you and your members who talk NETs? While Neuroendocrine cancers are becoming more well known and recognized, folks like us with islet cell cancer are still orphans? Only drugs or treatments directed toward other better known cancers like bowel or colon cancer have been tried on my side of the fence. It’s only been tried as a “let’s see if this works” clinical trial or treatment for some other cancer before it gets to me as an islet cell person. Very best to all.
Hi Carl – what grade is your tumour please – a ki67% number is fine
The article did include the pNET syndromes
I don’t know that we ever talked about what grade or stage. If I have Mets to the liver I am stage 4 by definition. And I have no idea what your ki67% number means. Never been anything we have ever talked about or I remember seeing on any kind of test. That’s what your site and articles have done to me. You make me feel like little Red Riding Hood wandering in the forest!
Suggest your doctors are the root cause of your wandering they should be telling you stuff
https://ronnyallan.net/2015/10/27/neuroendocrine-neoplasms-grade-and-stage-incorporating-who-2017-changes/