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Neuroendocrine Cancer – shh! Can you hear it?

sshh - can you hear it?

shh! – can you hear it? I didn’t.

The sooner any cancer can be correctly diagnosed, the better chances of a complete cure for the person concerned.  However, some cancers are in the ‘difficult to diagnose’ category.  Neuroendocrine Tumours (NETs) is in this category due to the vague symptoms which may be mistaken for other diseases and routine illnesses. This is one of the reasons there have been many lengthy diagnostic delays.  In many cases, it can be very quiet leading to diagnosis at very advanced stages.

In some cases it can be a little bit noisy. For example, the most common misdiagnosis appears to be Irritable Bowel Syndrome (IBS), asthma, or menopause.  Patients complain of abdominal pain, wheezing, shortness of breath, diarrhea, flushing, palpitations and a whole host of other minor issues.  There are even extreme cases where patients have been told they may have a mental illness following constant visits to their local doctors. These cases can lead to months or even years of delay from the onset of symptoms, with around half of patients diagnosed at an advanced stage of disease and metastases at initial presentation.

I’m not totally up to speed on what happens overseas, but in the UK, you normally only have 10 minutes (5 in some scenarios) to see a doctor (although my own experience is that many ignore that rule and if they sense a big issue).  No matter how hard we push, this can sometimes be insufficient to diagnose or even suspect NET cancer (or indeed many other cancers).  A NET Cancer diagnosis is more likely to be as a result of a number of visits where a picture can emerge and even then, a referral to a ‘symptom’ specialist may not necessary lead to an immediate discovery of a NET cancer.

There is no harm in targeting GP/PCP but they are more likely to be following instincts by referring due to symptoms rather than in the game of diagnosing obscure cancers which look like other things. I’m a big believer in primary care being the trigger for ‘something‘ which will hopefully be figured out at secondary care where you are more likely to get access to scans etc. In fact there is data to suggest that ‘symptom specialist’ frequently refer patients back to primary care, indicating the education at secondary care level may be a better focus for NET cancer awareness.

NET Cancer is dangerous despite it’s normally indolent course.  It has a propensity to metastasize meaning that the chance of a curative scenario is vastly decreased.  There is new data confirming the incidence of NET Cancer is on the increase and it’s no longer rare – I’m certain this is due to increased awareness, more efficient diagnostic tools and better reporting methods, e.g. Lung and Pancreatic NETs now being properly reported as NETs rather than Lung and Pancreatic Cancer respectively, particularly at Grade 3.

However, it’s probably true to say the term ‘silent cancer’ or ‘quiet cancer’ is apt even in those who are fortunate to be diagnosed at an early stage.  I mean, how do you detect something that is silent?  Anyone who is diagnosed with NET Cancer on the first visit to any medical professional is extremely lucky!  I suspect this is the same for many ‘difficult to diagnose’ cancers.  

Neuroendocrine Cancer – shh! can you hear it? 

By the way, Neuroendocrine Cancer hates awareness so share share share!

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Awareness, Awareness, Awareness


When Tony Blair swept to power in 1997, he said:  “Ask me my three main priorities for government and I tell you education, education, and education”.  His approach of repeated word emphasis has been copied and recycled by many others replacing the words with something to suit their own message.  I’m now guilty of similar plagiarism!

NET Cancer is rare and as a consequence has a small community of sufferers and specialists. It does not get the same levels of publicity, funding and research that the bigger patient population and more common cancers receive.  It therefore needs ‘team work’ to send a bigger and more powerful awareness message.  Thus why the World NET Community formed in Berlin in March 2010.  This is a group of NET cancer patient organisations from countries as far-flung as North America, Australia/Far East and Europe.  Their common aim is to raise awareness of NET cancers.  Efforts are  focussed around World NET Cancer Awareness Day, which is held on 10th November.  Check out this link for more info: http://www.netcancerday.org


10th November

One of the key aims of my blog is to spread awareness of NET Cancer and I’m very pleased to be part of the ‘worldwide team’ doing my bit to help. I started blogging in Apr this year mainly to support a sponsored walk but it has turned into something more permanent.  I start to twitch if I haven’t blogged for more than a week 🙂  I’m now fast approaching my first 10,000 hits which is beyond all my expectations.  My blog statistics package also lets me know my posts have been read in 56 countries indicating NET Cancer is truly an international disease.  Check out the long list below to see how your country is doing!

I’m also helping to spread awareness through my associations with PLANETS Charity: http://www.planetscharity.org and NET Patient Foundation: http://www.netpatientfoundation.org  In fact, I’ll be representing the latter at the NET Patient Foundation event on Tuesday 4th November in the UK Parliament.  This event aims to increase awareness amongst parliamentarians about NET cancers and the challenges to timely diagnoses – in short we are taking our fight for greater awareness directly to the heart of the UK government!

I’m also a ‘tweeter’ which is such a fantastic tool for spreading awareness if used properly.  I run my own personal site and also administer the PLANETS Charity account.  If you want to follow both of these accounts please link here:



Please also follow my colleagues in NET Patient Foundation: https://twitter.com/netpatientfound

If you want to help spread awareness of Neuroendocrine Cancer, please follow my blog and share across your own social media systems.  If you want to receive an email when a new post is published, click on the follow button (this is a system generated message and your email will not be used by me for any other purpose).  In addition to WordPress (the blog tool), I also post on Facebook, Twitter, Google+ and StumbleUpon.

Finally, please look at the list of blog hits by country:



Country Views
United Kingdom FlagUnited Kingdom 5,103
United States FlagUnited States 2,595
Canada FlagCanada 290
Australia FlagAustralia 222
Netherlands FlagNetherlands 136
Spain FlagSpain 66
Ireland FlagIreland 49
United Arab Emirates FlagUnited Arab Emirates 43
Italy FlagItaly 39
Russian Federation FlagRussian Federation 27
France FlagFrance 20
Sweden FlagSweden 20
Portugal FlagPortugal 18
Belgium FlagBelgium 17
South Africa FlagSouth Africa 16
New Zealand FlagNew Zealand 14
Switzerland FlagSwitzerland 14
India FlagIndia 14
Turkey FlagTurkey 12
Philippines FlagPhilippines 11
Norway FlagNorway 11
Denmark FlagDenmark 11
Kuwait FlagKuwait 10
Hong Kong FlagHong Kong 10
Belize FlagBelize 9
Germany FlagGermany 9
Barbados FlagBarbados 9
Qatar FlagQatar 7
Austria FlagAustria 6
Czech Republic FlagCzech Republic 5
Singapore FlagSingapore 5
Japan FlagJapan 4
Bahrain FlagBahrain 4
Brazil FlagBrazil 4
Malaysia FlagMalaysia 4
Lebanon FlagLebanon 3
Cyprus FlagCyprus 3
Croatia FlagCroatia 2
Romania FlagRomania 2
Korea, Republic of FlagRepublic of Korea 2
Israel FlagIsrael 2
Finland FlagFinland 1
Taiwan FlagTaiwan 1
Viet Nam FlagViet Nam 1
Greece FlagGreece 1
Luxembourg FlagLuxembourg 1
Algeria FlagAlgeria 1
Nepal FlagNepal 1
Hungary FlagHungary 1
Isle of Man FlagIsle of Man 1
Mexico FlagMexico 1
Kazakhstan FlagKazakhstan 1
Colombia FlagColombia 1
Nigeria FlagNigeria 1
Vanuatu FlagVanuatu 1
Kenya FlagKenya 1

Horrible Hormones


Up until 4 years ago, 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 suddenly appreciate how important they are ……..like a lot of other things in life I suppose!   My interest started when I was diagnosed with metastatic Neuroendocrine Tumours (NETs) in 2010.

This is a really complex area and to understand the hormone problems associated with Neuroendocrine Cancer, you need to have a basic knowledge of the endocrine and neuroendocrine systems.  I’ve no intention of explaining that (!) – other than the following high level summary:

  • Glands in the endocrine system use the bloodstream to monitor the body’s internal environment and to communicate with each other through substances called hormones, which are released into the bloodstream.  Endocrine glands include; Pituitary, Hypothalmus, Thymus, Pineal, Testes, Ovaries Thyroid, Adrenal, Parathyroid, Pancreas.
  • A Hormone is a chemical that is made by specialist cells, usually within an endocrine gland, and it is released into the bloodstream to send a message to another part of the body. It is often referred to as a ‘chemical messenger’. In the human body, hormones are used for two types of communication. The first is for communication between two endocrine glands, where one gland releases a hormone which stimulates another target gland to change the levels of hormones that it is releasing. The second is between an endocrine gland and a target organ, for example when the pancreas releases insulin which causes muscle and fat cells to take up glucose from the bloodstream. Hormones affect many physiological activities including growth, metabolism, appetite, puberty and fertility.
  • The Endocrine system. The complex interplay between the glands, hormones and other target organs is referred to as the endocrine system.
  • The Neuroendocrine System. The diffuse neuroendocrine system is made up of neuroendocrine cells scattered throughout the body.  These cells receive neuronal input and, as a consequence of this input, release hormones to the blood. In this way they bring about an integration between the nervous system and the endocrine system (i.e. Neuroendocrine).  A complex area but one example of what this means is the adrenal gland releasing adrenaline to the blood when the body prepares for the ‘fight or flight’ response in times of stress, ie, for vigorous and/or sudden action.

If you want a reasonably short explanation of the word ‘Neuroendocrine’ in the context of Neuroendocrine Cancer, check out my blog entitled “Neuroendocrine – what’s that?

So are hormones ‘horrible’ as my title indicates? Absolutely not, they are essential to the normal function of the human body.  For example if you didn’t have any of the hormone Serotonin in your system, you would become extremely ill.  On the other hand, if your glands start secreting too much of certain hormones, your body could become dysfunctional and in some scenarios, this situation could become life threatening.  So hormones are good as long as the balance is correct. However, they really get a bad press in the NET Cancer community!

I used the example of Serotonin above because it is the most cited problem with most common variant of NET Cancer (a sub-type currently known as Carcinoid).  Serotonin is a monoamine neurotransmitter synthesized from Tryptophan, one of the eight essential amino acids (defined as those that cannot be made in the body and therefore must be obtained from food or supplements). About 90% of serotonin produced in the body is found in the enterochromaffin cells of the gastrointestinal (GI) tract where it is used mainly to regulate intestinal movements. The remainder is synthesized in the central nervous system where it mainly regulates mood, appetite, and sleep. There is no transfer of serotonin across the blood-brain barrier.

Other Neuroendocrine Cancer related hormones include (but not limited to); Neurokinin A (NKA), Substance P, Vasoactive Intestinal Peptide (VIP), Somatostatin, Chromogranin A (CgA), Gastrin, Insulin, Histamine, Glucagon, Calcitonin Gene-Related Peptide (CGRP), Pancreatic Polypeptide (PP).  At least one or more of these hormones will be involved at various sites and even within certain syndromes, the dominant and offending hormone may differ between anatomical tumour sites.

Sometimes the cause of the excessive hormone secretion is due to malignant cancer cells and my type of cancer falls into this category.  NETs of the small intestine, lung or appendix (and obe or two other places) may overproduce serotonin and other hormones which can cause a characteristic collection of symptoms currently called carcinoid syndrome.   The key symptoms are flushing, diarrhea and general abdominal pain, loss of appetite, fast heart rate and shortness of breath and wheezing. The main symptom for me was facial flushing and this was instrumental in my eventual diagnosis. The fact that I was syndromic at the point of diagnosis made it easier to discover, albeit the trigger for the investigation was a fairly innocuous event!

Excessive secretions or high levels of hormones and other substances can be measured in a number of ways but the main ones for the most common types of NET are Chromogranin A (CgA) blood test and 5-Hydroxyindoleacetic Acid (5-HIAA) 24 hour urine test (although this differs globally based on availability and specialist preferences). Others may be used at the diagnostic phase or during surveillance.  By measuring the level of 5-HIAA in the urine, healthcare providers can calculate the amount of serotonin in the body (5-HIAA is a by-product of serotonin).  5-HIAA test is the most common biochemical test for carcinoid syndrome or the degree of how ‘functional’ carcinoid tumours are.  If you’ve understood the text above, you can now see why there are dietary and drug restrictions in place prior to the test. CgA is a blood test which measures a protein found in carcinoid tumour cells. This test is normally associated with tumour mass rather than tumour activity/functionality.

One of the key treatment breakthroughs for NET cancer patients, particularly those who have shown symptoms of carcinoid syndrome, is ‘Somatostatin Analogues’, branded as Octreotide or Lanreotide (mainly). Patients will normally be prescribed these drugs if they are displaying these symptoms but some people may be more avid to the drug than others and this may influence future use and dosages. This is another complex area but I’ll try to describe the importance here in basic terms. Somatostatin is a naturally occurring protein in the human body. It is an inhibitor of various hormones secreted from the endocrine system and it binds with high affinity to the five somatostatin receptors found on secretory endocrine cells. Carcinoid tumors have membranes covered with receptors for somatostatin. However, the naturally occurring Somatostatin has limited clinical use due to its short half-life (<3 min). Therefore, specific somatostatin analogues (synthetic versions) have been developed that bind to tumours and block hormone release. Thus why Octreotide and Lanreotide do a good job of slowing down hormone production, including many of the gut hormones controlling emptying of the stomach and bowel.  It also slows down the release of hormones made by the pancreas, including insulin and digestive enzymes  (so there can be side effects including fat malabsorption). It’s also why Octreotide is used in radioactive scans as the mix of radioactivity and octreotide binds to the tumours making them ‘light up’ and show on the gamma camera pictures.  Prior to my initial surgery, daily Octreotide reduced my symptoms and the tumours identified on my CT scans all lit up (and some more!) on my initial and subsequent Octreotide Scans.

Other types of NETs are also affected by the overproduction of hormones including Insulinomas, Gastrinomas, Glucagonomas,VIPomas and Somatostatinomas.  If you want to read more detail I suggest the “5th edition handbook, Neuroendocrine Tumors: A Comprehensive Guide to Diagnosis and Management” which is available for download or a hard copy by post – contact ISI at requests@interscienceinstitute.com (they will even post to UK – it worked for me!). Table 1.1 on page 5 is a good starting point.

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A Commitment to Fight Cancer

Steve Davis and the Author

Steve Davis and the Author

I was a spectator at the Bournemouth marathon on Sunday 5 Oct 2014.  I was there to shout for my old army friend, Steve Davis, who was running 26.2 miles for PLANETS Charity.  When Steve found out I was living with Neuroendocrine Cancer, he immediately volunteered his services to help raise funds. Steve is a runner but when you are ’50 something’, running a marathon is no easy feat – not easy on your feet either 🙂

I had seen excerpts of marathons on television but this was my first time as a spectator at a live event.  One thing that struck me was the sheer number of people who were running for good causes. The usual big names were there (Cancer Research, Macmillan, etc) but there were dozens of smaller charities also represented including PLANETS ( http://www.planetscharity.org )  Sure, there were many ‘professionals’ and the ‘fitness types’ who were there because they run marathons as a sport/pastime – but they were vastly outnumbered by people who were running to make a statement and to raise money for their chosen charities.

The ‘statement makers’ were big, small, tall, short, long hair, short hair and some with no hair.  To me some of them did not look like they would be able to run 26.2 miles.  However, their presence there meant they had made the commitment.  If you want to witness the meaning of pride, determination, relief and happiness all bundled into one, simply go and look at the faces of people as they cross the finish point of a marathon. If you also want to be moved, go to a live marathon.  I saw a blind man running who was attached to a ‘guide’ and I saw ladies who had clearly just undergone (or were undergoing) chemotherapy.  Many people had the names of family and friends emblazoned on their running tops and the one which made me frantically ‘blink’ was a lady who had clearly lost a child through some illness.

I think all cancer patients and those who have been touched by this terrible disease will join me in thanking everybody who steps up and commits their time and effort to make money for charities all over the world.  It is really very much appreciated.

I found the whole day quite humbling and my emotions were certainly tweaked.



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