Neuroendocrine Cancer – a difficult jigsaw

Book of NETS
A book listing all the possible symptoms of NETs

A couple of months ago, I received a request from a reader asking if I would blog about all the symptoms experienced by a Neuroendocrine Cancer (NET Cancer) patient and how to sort out what is and what isn’t associated with NET Cancer.

Although I chuckled and raised eyebrows 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. After it started to look like it might be bigger than the Empire State Building, I came to the conclusion that it’s an almost impossible task for a wee Scottish guy with less common disease 🙂

I have, however, dabbled in attempts to work out my own problems over the past few years. NET Cancer can present with its own ‘syndrome’ – a bunch of symptoms normally caused by excessive hormone secretion, some of which are particularly vague and can sometimes continue to cause issues after treatment and beyond. In my blog “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).  On a similar subject, you might want to check out my 5 E’s blog.

Adding to the issues with cancer and side effects, common comorbidities (many of an endocrine nature) can arise simultaneously and many patients are also (coincidentally) at an age where the body naturally starts to go faulty. All of these factors can make it really difficult to determine the source of the symptoms.

Here’s another classic example of this problem, I can see many people on 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’ve used the diabetes link as an example, there will be many other factors at play, e.g. hypothyroidism.  It is certainly possible that many of the problems people face might just be an as yet undiagnosed condition unconnected with NET Cancer. To quote the great Dr Eric Liu, “even NET Patients get regular illnesses”.

In fact, 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 the 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 markers are normal.  I have 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 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 have a little bit of sympathy for primary 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 Cancer 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 flummoxed on occasion by patient presentations.

It is extremely difficult to “sort out the symptoms” when faced with multiple locations/tumour sub-types, multiple treatments causing multiple side effects, multiple side effects causing multiple symptoms, multiple comorbidities with symptoms similar to cancer syndromes and treatment side effects (and vice versa).  This disease can be very individual and what happens to one might not happen to another. Although we hope doctors generally take a holistic view when treating NET patients, I have a view that sometimes focussing 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 tumor markers and hormone markers – read more here.

NET Cancer Jigsaw

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.

What was your missing piece?

see also the Diarrhea Jigsaw

Thanks for reading


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Remember ….. in the war on Neuroendocrine Cancer, let’s not forget to win the battle for better quality of life!


Author: Ronny Allan

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8 thoughts on “Neuroendocrine Cancer – a difficult jigsaw”

  1. I had NET tumours removed twice, 5 years ago then in March of this year. My symptoms were extreme pain and projectile vomiting, for several years before the 1st tumour was found. It was found during a laparotomy, it never showed up on any scans including an octreotide scan. I suffered for over 2 years. Then 2nd time round nobody paid much attention when the pains returned, same symptoms, same results on scans, nothing showed. Eventually after a lot of discussion the surgeon agreed to operate, result another tumour. It was again removed. No follow up, really no explanation of what a NET is, no referral to a specialist, nothing. I am as much in the dark now as ever

    1. This sounds very similar to my own experiences after my NET was “discovered” during routine surgery over two years ago, after experiencing for more than a decade, chronic roaming pain and diverse neurological problems.
      After finding my NET, no explanation or discussion was offered by my gastroenterologist, regarding exactly what my tumour was, its effect on my body or what to expect for the future. – In fact, I just received a one paragraph letter in the post informing me that a NET had been discovered and that I would be hearing from them shortly (in NHS terms, that turned out to be some two months of sheer anguish later).
      I remain, to a certain extent, very much in the dark after various tests and scans continue to reveal “nothing untoward”. (Although nowadays, I’m not as much in the dark regarding NETs as, it would seem, the vast majority of doctors here in NE UK).
      Finally, in sheer frustration at the apparent lack of knowledge and information provided by my consultant and my GP – I contacted the NET Patient Helpline, who kindly put me in touch with a NET specialist in the North East, (who’s care I am thankfully now under).
      Thank goodness for Ronny Allan and organisations like the NET Patients Foundation, from whom I learn so much about this rare disease, and perhaps more importantly, that I am not alone in terms of the lengthy road of diagnosis.
      So – My advice to anybody in a similar situation is to find out where their closest NET Specialist is and request a consultation. At least you can then be confident that you will be in the hands of somebody who knows and understands how to best manage and treat your NET and who can explain things clearly to you.

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