A few years ago, I received a request from a reader asking if I could write an article listing all the symptoms experienced by a Neuroendocrine Cancer patient and how to sort out what is and what isn’t associated with NETs.
Although I chuckled and raised an eyebrow at the request, inside I was genuinely humbled that someone thought I was capable of achieving this herculean task. I actually gave it quite a bit of thought to the point of compiling a matrix of types of NET, main symptoms, cross-referenced with the symptoms of the most common reported comorbidities/secondary illnesses. After it started to look like it might be bigger than the Empire State Building, I then quickly came to the conclusion that it’s an almost impossible task for a wee Scottish guy with a less common disease. I also started to suspect that even the world’s top NET experts would not attempt it either.
Here’s a picture of where I got to before abandoning the task:
It’s well known that NETs can present with a ‘syndrome’ i.e. a bunch of symptoms normally caused by excessive and measurable hormone secretion, some of which are particularly vague and can sometimes continue to cause issues after treatment and beyond – it’s a real witch’s brew of symptoms. However, most NETs are non-functional (i.e. non syndromic).
I have dabbled in attempts to work out my own problems over the past few years and I can give you a golden rule to follow – “Not everything is connected to NETs”. e.g. The treatment for NETs can cause non-tumour, non-syndromic side effects, some of which look very similar to syndromic issues and issues caused by tumour growth. Correlation does not imply causation.
In my article “Neuroendocrine Cancer Syndromes – early signs of a late diagnosis“, I focused on the key symptoms experienced pre-diagnosis and then discussed how you might go about sorting out the symptoms from main side effects post-treatment (another regular conundrum for most). I covered all the different syndromes related to NETs.
I emphasise the plural ‘syndromes’ here because there is more than one syndrome, and I refuse to perpetutate the myth spread by others that everything is called carcinoid and every symptom is carcinoid syndrome. I also compiled an article about the source of flushing and diarrhea along similar lines – these symptoms can often be found beyond carcinoid syndrome which is mostly related to metastatic midgut NETs, much less commonly in foregut and rarely in hindgut.
On forums where most people have a diagnosis and are undergoing treatment, there is regular discussion and Q&As about the source of symptoms, i.e. are they a result of a functioning syndrome (i.e. a consequence of cancer) or something else? For example, some people complain they still have (so-called) carcinoid syndrome diarrhea after bowel surgery………that needs some careful thought and understanding before coming to what might just be the wrong conclusion, particularly if all tumour and hormonal markers are normal. I’ve lost count of the number of times someone has asked about a symptom on a forum and got 50 different answers. One of the reasons why forums can be good at frightening rather than frighteningly good.
Personally, I never compare myself to strangers on the internet. I just hope most people are using the forums as ‘sounding boards’ and are simultaneously addressing these very complex issues with their doctors when they are genuinely concerned. I try to help people deal with these issues in my own private Facebook group, which according to my members, is frighteningly good! Join here if you’re not already there.
I really feel for anyone who is going through a difficult diagnosis or has been diagnosed and then continues to have numerous problems after initial treatment. I also admit I have a little bit of sympathy for primary and secondary care medical staff on the basis this is just one of over 200 types of cancer, many of which have wide age groupings adding to the complexity and difficulty. Moreover, many of the symptoms experienced by NET patients on analysis look very similar to everyday illnesses and other ailments. And if that wasn’t demanding enough for doctors, many patients present with already established and diagnosed comorbidities (other illnesses) which add another level of complexity. These difficulties can then continue throughout treatment. It can be a real challenge and I’m sure even Doctors can be totally flummoxed on occasion by patient presentations. In patient groups, these doctors and hospitals are not there to defend themselves. While I’m sure mistakes have been made, I also believe there is always two sides to a story.
Adding another jigsaw piece to the issues with cancer and side effects – common comorbidities (many of an endocrine nature) can arise simultaneously. Is it connected with NETs being just another illness to manage alongside? All of these factors can make it really difficult to determine the source of the symptoms. I’m always conscious that the majority of NET patients are in their 5th decade onward and at an age where things start to go wrong quite naturally due to ‘time’ and ‘wear and tear’. I am one of them, I know many of the problems I have are related to this wear and tear and have nothing to do with my NET.
Here’s one classic example of this problem, I can see many people on patients forums also have diabetes (an endocrine disease). In the United States alone, nearly 7 million people have undiagnosed diabetes, according to the American Diabetes Association. I can also see from the news in UK, that this is becoming a much bigger deal too – a report published in Feb 2018 claims that diagnoses have doubled in 20 years.
I used the diabetes link as an example, there will be many other very common factors at play, e.g. hypothyroidism which is an age and gender related issue – it’s in the top 10 of the most consumed prescription medications – i.e. it’s very common whether you have NET or not. The number of people I see in my group with acid reflux is another area of concern given the crossover with certain types of NETs which have this presentation (although the NET potential is much much much less than regular acid reflux disease). Proton Pump Inhibitors are another top 10 most consumed prescription meds i.e. acid reflux is very common whether you have NET or not.
Side effects of treatment may be the cause of your symptoms. Some examples include the side effects of somatostatin analogoues, chemotherapy, target therapies, PRRT. These all need to be correlated before coming to the assumption that you have tumours growing or your NETs have become functional.
It is certainly possible that many of the problems people face might just be an as yet undiagnosed/underlying condition, unconnected with NETs. To quote the great Dr Eric Liu, “even NET Patients get regular illnesses”. Working it out is rather difficult though. Sometimes pragmatism and patient detective work is required. My group can help with most things.
In the beginning of my journey, I found online patient groups to be a bid odd. I quickly spotted that people were always trying to help but I frequenty found that help was potentially way off beam. I found that online patient groups were part of this jigsaw, in that they helped to perpetuate many myths about NETs.
There are people in patient groups who will try to convince you that you have NET even if all your markers and scans say nothing is present, your tumours will soon grow, they just can’t see them yet, that you have carcinoid syndrome if you have a bout of diarrhea, if your heart skips a beat they will tell you that you have carcinod heart disease, it won’t be long before the metasases kicks in, etc etc etc. ……this happened to me or someone I know, so it must be the same for you.
……… heterogeneity isn’t in their dictionary…. and that’s dangerous.
…… i.e. they can be frightening places. Of course well moderated groups with a good set of rules, can make them frightenly good places to be. Thus why my own group has been developed to combat some of these issues.
It’s extremely difficult to to write a ‘one-page’ summary of how to “sort out the symptoms” when faced with multiple locations/tumour sub-types, different stages/grades, different syndromes, multiple treatments causing multiple side effects, multiple side effects causing multiple symptoms, multiple comorbidities with symptoms similar to NET syndromes, and treatment side effects (and vice versa). This disease can be very individual and what happens to one might not happen to another. It’s a very heterogenous collection of tumours and symptoms. Read about this by clicking here or on the picture below.
Although we hope doctors generally take a holistic view when treating NET patients, I have a view that sometimes focusing in on a particular symptom might occasionally be a more effective route (the bottom-up approach – pun not intended!). When eating an elephant, take one bite at a time! It’s useful to know about the range of tumour markers and hormone markers – read more here.
One thing I have learned ……educate yourself to the best of your abilities. This will help you to better advocate for yourself. Improvements are possible.
Neuroendocrine Cancer is a very difficult jigsaw and you sometimes need to look very hard for the missing piece! The ‘missing piece’ can be variable and very individual, i.e. a NET specialist, access to a particular treatment, or even just more support or access to support information that works.
Try my group (see green button below).
For those of you still looking for a diagnosis, please read this article.
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. Some content may be generated by AI which can sometimes be misinterpreted. Please check any references attached.
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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