Neuroendocrine Cancer – were you irritated by your misdiagnosis?
Look on any site about Neuroendocrine Tumours (NETs) and you'll find the term IBS (irritable bowel syndrome) frequently mentioned. That's because it's a common misdiagnosis for many before being formally diagnosed with NETs. I see it mentioned on my site a lot, often by people who are quite irritated (pun intended) by a previous diagnosis which perhaps should have led to their actual diagnosis of NET. But what exactly is IBS, why is it such a common misdiagnosis for many NET patients and how can these misdiagnoses be prevented or reduced in future? In preparation for writing this blog post, I…
Low FODMAPs – The NET Effect
Background Many people with NET have had issues prior to diagnosis and then continue to have similar issues after. For some it will be either one, i.e. no issues before but issues after or vice versa. However, it's even possible that some people have will have different issues after diagnosis than they had before, e.g. the side effects of the treatment will produce new problems for those people. In the early days, I once said to my Oncologist "I was never misdiagnosed with irritable bowel syndrome (IBS) but I sometimes feel like I have it now". IBS is said to…
Fructose intolerance – the NET Effect
Background When I cast my mind back to my very first surgery, I remember all sorts of 'plumbing' issues but was told it would take a while for my adjusted plumbing to repair and do its work once more. It's not gone fully back to normal, but I accept minor side effects of getting rid of cancer (metastatic with small intestine NET primary). My diet is slightly different nowadays as I endeavour to return to that normality, and I have a good handle on what makes me move faster AND slower. Constipation is not good either, so I try to find a…
Neuroendocrine Cancer Diarrhea- building the jigsaw: Bile Acid Malabsorption
Before progressing, I wanted to emphasise this is not necessarily the same type of malabsorption caused by exocrine pancreatic insufficiency (EPI) which can potentially lead to something known as steatorrhea (amongst other things) but it can produce the same effect. Steatorrhea is different from bile acid issues and is more related to fatty acids. But it's another piece of the diarrhea jigsaw. Bile Acid Malabsorption (BAM) and Bile Acid Diarrhea (BAD) Post-surgical diarrhea is probably something to expect in the early days and after time, adjustments can be made to cater for these side effects. With NETs, particularly where there…
Clinical Trial: Treatment of IBS with diarrhoea – titrated ondansetron (TRITON)
I was never diagnosed with Irritable Bowel Syndrome (IBS) but sometimes I feel like I now have it. I know many others feel the same way. But when I look at the alternatives, I can't help thinking it's a small price to pay given that one of them might be a slow degrading quality of life until shuffling off this mortal coil. If I had the choice again, I would still take the surgery. Before the article continues, let me be clear - I'm not suggesting this is a potential treatment for NET patients with post abdominal surgery side effects…