The 6 E’s
An opinion post When I first heard of something called "The 5 Es", it struck me that I was aware of these issues and their potential effects; and I’m certain there is science to substantiate most of the content. These 5 E’s are apparently the most common ‘triggers’ for (so called) Carcinoid Syndrome. Clearly, they are not going to have the same effect on every patient e.g. I have the occasional drink of ‘Ethanol’ and I always enjoy it, I go for long exhausting walks as ‘Exercise’ and I always feel great after. I had dental treatment using ‘Epinephrine’ without any precautions before and after…
Early diagnosis of late stage cancer
Early diagnosis of late stage cancer What a strange title for a cancer blog post! However, what a strange cancer I have. Let me explain - I was really confused in 2010 as to how I could suddenly become a stage 4 Neuroendocrine Cancer patient even though I didn't feel ill enough to see a doctor. To cut a long story short, you can read about me here. "The cancer has been growing for years" One of the common stories I hear from other patients is they were told their cancer had been growing for some years, up to 10/11/12 in…
Don’t believe the hype – Neuroendocrine Cancer Myths debunked
Edited and refreshed 13th January 2026 There's a lot of inaccurate and out-of-date information out there. Some are just a lack of understanding, and some are caused by out-of-date websites. Often the problem is a result of patient forum myth spreading exacerbated by poor moderation in the groups concerned. Some can only be described as propaganda. Some of it even comes from uninformed doctors and bizarrely and disappointingly from NET advocate organisations. All the graphics below contain links to relevant blog posts. Myth 1: All Neuroendocrine Neoplasms will metastasise Simply untrue. They are a heterogeneous group of tumours. Read more…
Ronny Allan – Every picture tells a story
I always try to use graphics for a number of pictures, I admit mainly to catch people's attention but also because sometimes a picture on its own tells a story or at least provides a great introduction to one. If the picture catches your eye, clicking on will take you to the text. This post will auto update as new blogs are published. thanks for reading and sharing! Scroll, point, click, read, share! 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),…
Neuroendocrine Cancer: Diagnosing the Undiagnosed
Neuroendocrine Cancer is one of a number of "difficult to diagnose" conditions. Many types of Neuroendocrine Cancer come with an associated syndrome and these syndromes can mimic everyday illnesses. In many cases, people don't even feel ill while the tumours grow. Most types of this cancer are slow-growing but there are also aggressive versions. Although things appear to be improving in diagnostic terms, it can sometimes take years for someone to be finally diagnosed correctly and get treatment, albeit in some cases, too late for any hope of a curative scenario. It's a very sneaky type of cancer and if…
Not every illness is visible
I personally don't see myself as 'disabled' but I do have an invisible illness. I can see it and I don't necessarily care if others don't. I'm fit, can walk for miles, I even look quite healthy. However, I live with the consequences of Neuroendocrine Cancer. These consequences differ from person to person but I know that some people with this disease have even met the criteria to be officially classed as 'disabled' through government schemes. Judging by what I read, I have less debilitating issues than others, so I feel quite fortunate. That's not to say I don't have any issues at all - because I do!I…
Telotristat Ethyl (XERMELO) – an oral treatment for Carcinoid Syndrome Diarrhea not adequately controlled by Somatostatin Analogues
Republished and reformatted and reviewed 1st September 2024. Original published 31st March 2016. What is Telotristat Ethyl?Telotristat Ethyl is a significant introduction to the treatment of Carcinoid Syndrome diarrhea. It's the first addition to the standard of care in more than 16 years and the first time an oral syndrome treatment has been developed. The drug was previously known as Telotristat Etiprate but was changed to Ethyl in Oct 2016. 'Etiprate' was previously a truncation of 'ethyl hippurate'. The brand name is XERMELO® Who is the drug for?The drug may be of benefit to those whose carcinoid syndrome diarrhea is not adequately controlled by somatostatin analogues…
Serotonin – the NET effect
Background I'd never heard of Serotonin until I was diagnosed with Neuroendocrine Cancer in 2010. It is frequently discussed, often with contrasting views from the respondents. One common assumption/question is that it is responsible for many things that can go wrong with Neuroendocrine Tumour (NET) patients who have serotonin-producing tumours. To a certain extent, that's true but statement such as "it's the hormones" is an easy assumption to make; or an easy answer to give in response to a complex set of circumstances. It's difficult to get a definitive answer and the science behind the behaviour of our hormones isn't…
Neuroendocrine Cancer: Glossary of Terms
Welcome to my Neuroendocrine Cancer terms and definitions list providing a source of meanings for acronyms and medical terms, all sourced from top Neuroendocrine Cancer sites. How to use this list: 1. If your term begins with an A, see the list of As etc. Ditto for B to Z. Select your term from the list, the definition will show along with any of my blogs where that term is mentioned – this adds context. . 2. Numerical terms are also listed. Please note I’m constantly working on the repository to clean up all definitions, adding and removing links where necessary, and…
Did you hear the one about the constipated NET patient?
In my neck of the woods, "did you hear the one about the ........." is normally a precursor to a witty comment, or a joke. However, constipation for NET patients is not actually funny - read on. Certain types of Neuroendocrine Cancer are very heavily associated with diarrhea, either as a symptom of one of the NET Syndromes (yes there is more than one .....); or as a result of surgery or certain other treatments. Occasionally, these symptoms and side effects can all combine to make it quite a nasty and worrying side effect. I must admit to being surprised to…
“What are you doing this afternoon”
On 8th July 2010, I was sat in front of a secondary care consultant. I asked specifically for this consultant for two reasons, firstly, he carried out a colonoscopy some 20 months previously which turned out to be negative. Secondly, my GP had referred me to the iron deficiency anaemia clinic, and they wanted to do ….. a colonoscopy. I changed that plan because this "non-issue" was dragging on; quite frankly I wanted it to be resolved quickly, and I wanted it to be resolved in my favour - after all, in my head, I wasn't actually ill..... two months…
Please flush after use!
In the past couple of years, I've read so many stories about the quite natural act of using a toilet (.....some more repeatable than others). I think if there were a 'Bachelor of Science degree in Toiletry', I might pass with First Class Honours.I jest clearly but it's strange that such a routine activity for most can actually become quite scientific in the world of Neuroendocrine Cancer and other ailments which might be described in some scenarios as invisible illnesses.I also found myself smiling at the fact that flushing is connected with the toilet and a type of red warm feeling…
Pancreatic NET with carcinoid syndrome – not as common as you think
Why do I need to write about this? I've been watching confusion surrounding symptomatic pancreatic NETs for years and it never ceases to amaze me that people automatically think "carcinoid syndrome". Despite the fact that pancreatic NETs were never included in the category of "carcinoid tumours"; and despite the fact that there are at least 6 or 7 known pancreatic NET hormonal syndromes, this myth persists. Don't misunderstand me though, a serotonin secreting pancreatic NET is possible, it's just not nearly as common as it's made out in patient groups and on some websites. It's a highly unusual scenario. Why…
Ignore this post about Neuroendocrine Cancer
Actually, you must share it widely, people out there will have this disease and need a diagnosis. People already out there with a diagnosis and want more awareness - so go on, ignore the post title and share it! When I was diagnosed, I wasn't feeling ill. In hindsight, I now know some of the signs were there, I just put up with them. Neuroendocrine Cancer had laid a trap for me, and I fell right into it. You see, Neuroendocrine Cancer can be very quiet and unobtrusive. It also plays the 'long game' and will sometimes take years before it's finally…
Neuroendocrine Cancer Nutrition Series Article 3 – Gut Health
In this article, I'm discussing the use of probiotics to combat several issues including the general health of the 'gut' including IBS like symptoms, and the potential issue of small intestine bacterial overgrowth (SIBO), all of which may be related in some way to Neuroendocrine Tumours. That said, these issue may be regular conditions, nothing to do with NET. Nutritional issues are one of the biggest challenges affecting most Neuroendocrine Cancer patients and nutrition and gut health can become more important issues. It is also a key factor in maintaining a decent quality of life and for most countries without…
Neuroendocrine Cancer: Beware But Be Aware
An awareness post from Ronny Allan BEWAREThere are a lot of scary diseases in this world. Take the lesser-known type of cancer that infiltrated my body for example - Neuroendocrine Cancer. Not only is it scary but it's also cunning, devious, misleading, and double-crossing. It likes nothing better than to play tricks on you.It will grow in your body without you knowing. It finds places to hide, mainly the small intestine, appendix, lungs, stomach, pancreas, rectum, and a host of other places. It can be fiendishly small to avoid being seen. Once it's established in the primary location (....or locations),…
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…
A Spotlight on NET Syndromes – Carcinoid Syndrome
What is Carcinoid Syndrome?Carcinoid syndrome (CS) is the most frequent hormonal complication accompanying neuroendocrine neoplasms (NENs) and is defined by chronic diarrhoea and/or flushing in the presence of systemic elevated levels of serotonin or its metabolite 5-hydroxyindolacetic acid (5-HIAA). Importantly, other causes of these symptoms should be considered and investigated depending on the clinical presentation. CS is predominantly encountered in patients with well-differentiated NENs (neuroendocrine tumours, NETs) of intestinal origin, followed by lung NETs, and only in a minority of patients with pancreatic, ovarian, thymic, or unknown origin NETs. The main symptoms defining CS are skin flushing, secretory diarrhoea, bronchospasm, or abdominal…
I woke up on World Neuroendocrine Cancer Day
1 year after 2 x surgery 5 years after 3 surgeries 10 years after surgery 15 years after first surgery It was 10th November 2010 just after midnight. I gradually woke up after a marathon 9-hour surgery - the first of what was to be several visits to an operating theatre. The last thing I remembered before going 'under' was the voices of the surgical staff. When I woke up, I remember it being dark and I appeared to be constrained and pinned down by the dozen or so tubes going in and out of my weak and battered body. …
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…
Lactose intolerance – the NET Effect
Background When I cast my mind back to my very first surgery, I remember asking my Oncologist what I could do to put on weight. He said to drink full-fat milk. I was compliant in those days without reverting to Dr Google. Anyway, I did put on weight but perhaps the milk played a small part in that, and I eventually returned to semi-skimmed which I continue to use today (12 years on). My breakfast regime in the last 12 years since that surgery contains regular semi-skimmed milk and my many cups of tea have the same milk added. …
Cancer-related fatigue (CRF) – The NET Effect
In my patient support group of almost 10,000+, fatigue is very commonly discussed, and it certainly gets bags of empathy from the readers. I remember being really tired in the first few years after my diagnosis and in the years preceding it. As I was very focused on my work in those days, I was putting it down to the rigours of my working practices, commuting, overnighting, and working far too many hours in a day. In 2010, my diagnosis was triggered by symptoms of iron deficiency anaemia which was almost certainly connected to my cancer and feelings of fatigue for…
Let’s Talk About NETs (#LetsTalkAboutNETs)
I do a lot of writing about NETs but I guess I've also done some talking too. Some of these talks to patient groups and healthcare professionals were recorded and I have access to those recordings. Others were not recorded but where possible and I am authorised to do so, I will attach the presentation slides. Please note videos, presentation slides, and any Podcasts are in English. I'll list some of them below for your perusal. I will keep adding them so they're all in one place. Published TalksAnn Edgar Trust - 31st August 2022I was invited by Gordon Mackay who runs…
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…
Neuroendocrine Cancer Clinical Trial: Advanced Oncology Formula enterade®
Diarrhea is a huge subject for NET patients, whether it's caused by the tumour itself (i.e. a syndrome), due to treatment, knock on effects of treatment, or some other reason, it can dramatically limit qualify of life. Working out the root cause can be problematic even for medical teams. I wrote about these issues before in my article Neuroendocrine Cancer - the diarrhea jigsaw. So when I saw the data from a trial of something called enterade®, I was immediately drawn to investigate. I don't normally write articles on over the counter commercial products but this one is an exception…
Update: Management of Neuroendocrine Tumors
This is an excellent and positive video based overview of where we are with the Management of NETs. This is a presentation from a NET Specialist (who some of you may know) presenting to a "GI Malignancies" conference. This is therefore not only awareness of NETs, it's also some good education for non NET GI experts who may only know the very basics. Useful for patients too! I met Dr Strosberg in Barcelona (ENETS 2017) and thanked him for his presentational and scientific paper output which I often use in my articles. The classification picture is good as it explains…
Round up of NANETS 2017 – Let’s talk about NETs #NANETS2017
NANETS (North American Neuroendocrine Tumor Society) is one of the biggest NET conferences, bringing together NET Specialists from around the world to discuss state-of-the-art treatment modalities, new therapies, and ongoing controversies in the field of Neuroendocrine Neoplasms (Tumors and Carcinomas). This is fairly complex stuff but much of it will be familiar to many. I’ve filtered out several outputs from the conference which I think are both relevant and topical to patients. The list is below allowing you to easily peruse and read further via linkages if you need to read more. Remember, some of these are extracts so do not…
Neuroendocrine Cancer – Exciting Times Ahead!
In the last 12-24 months, there seems to have been announcement after announcement of new and/or upgraded/enhanced diagnostics and treatment types for Neuroendocrine Cancer. Scans, radionuclide therapies, combination therapies, somatostatin analogues, biological therapies, etc. Some of the announcements are just expansions of existing therapies having been approved in new (but significant) regions. Compared to some other cancers, even those which hit the headlines often, we appear to be doing not too badly. However, the pressure needs to stay on, all patients need access to the best diagnostics and treatments for them; and at the requisite time. There's even more in the pipeline and I'm hoping…