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Neuroendocrine – what’s that?

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You’ve got what?


Earlier this week, I met some fellow cancer fighters and the conversation turned to what inspired us to ‘do what we do’. When it came to my turn, I was already prepared to regurgitate my usual ‘spiel’. As sometimes happens, a listener queried me with the words “Neuroendocrine – what’s that?“.    Another focussed on ‘Neuro‘ enquiring whether my nervous system had somehow become cancerous.  Deja vu – here we go again!

Two days later, I was speaking to one of my on-line friends who was having similar problems explaining this cancer to family and friends. Again ‘Neuro‘ was proving difficult with the assumption that it’s somehow related to the brain. Technically not far from the truth but context is really important given that most people look at cancer in anatomical terms.

I’ve struggled since 2010 to explain this disease in layperson terms. It’s actually one of the reasons for my ‘study’ and my blog.  It’s getting easier, particularly when answering questions. However, if Neuroendocrine Cancer knowledge was an iceberg, I’d still be at the tip!  I did write a post entitled Horrible Hormones which supports an explanation. You might like to read it – perhaps helpful to aid your overall understanding of this post.

The other difficult aspect of explaining Neuroendocrine Cancer is the extent of the Anatomy and Physiology of the Neuroendocrine system which appears in numerous parts of the body. I’ve written about this before at a time when I was fed up with newspaper reports and on-line articles implying that Neuroendocrine Cancer didn’t exist – e.g. by frequently describing Neuroendocrine Tumours of the Pancreas as Pancreatic Cancer and Neuroendocrine Tumours of the Lung as Lung Cancer. During some of my own verbal discussions, mention of the small intestine was frequently met with so you have Bowel Cancer. NO!  Good time to refresh yourself with my blog post The Human Anatomy of NET Cancer. This thinking needs to be challenged at every opportunity including while explaining to family and friends.

I’ve therefore decided to attempt a short, generic but still sufficiently detailed explanation of ‘Neuroendocrine‘ in relation to my Cancer. I suspect by the end of this blog, it will not be as short as I had wished. I do like a challenge 🙂  Here goes:

The neuroendocrine system is made up of a network of cells that are distributed throughout the body. The word neuroendocrine refers to 2 qualities of these cells: they have a similar structure to nerve cells (neurons) and produce hormones like endocrine cells. Neuroendocrine cells release hormones into the bloodstream in response to chemical signals from other cells or messages from the nervous system. Basically hormones travel in the bloodstream and makes things happen in another part of the body.

These neuroendocrine cells are scattered throughout the body performing different roles based on location, e.g.

  • Neuroendocrine cells in the digestive system regulate intestinal movements and the release of digestive enzymes
  • Neuroendocrine cells in the respiratory system are believed to play a role in the developmental stages of the respiratory organs. They also regulate respiratory function.
  • There are many others including some which control or can affect blood pressure, heart rate, blood glucose sugar levels and many other substances.

When Neuroendocrine tumours develop in these cells, they can not only then spread to other locations but they can also secrete excess amounts of hormones and substances which can cause an adverse effect on the body’s natural rhythm. A collection of these symptoms is known as a syndrome. There are several different syndromes depending on the location and type of Neuroendocrine Tumour.

The presence of the syndrome nearly always indicates the disease has metastasized (spread) and that the tumours are functional. Sometimes tumours are non-functional (i.e. they do not secrete excess hormones) – can be even more difficult to diagnose than their functional counterparts often leading to presentation at very advanced stages.

Most Neuroendocrine Tumours are slow-growing and therefore offer good prognosis if identified as early as possible and treated. Even for metastatic patients, the outlook is relatively good with the right treatment and surveillance.  However, one of the biggest challenges for Neuroendocrine Tumour patients is the maintenance of a decent quality of life which can sometimes be impacted by the effects of their syndrome and/or the treatment.

I found it very difficult to write a short and generic explanation of the word ‘Neuroendocrine‘ in relation to cancer – no wonder I seem to spend 10 minutes verbally explaining to people and…… no wonder they sometimes look at me with glazed eyes 🙂 However, this is my offer. This is as brief as I can make it to provide understanding. I’ve cut out more than I’ve left behind and feel like I’m short-changing you! However, it needs to be basic and it needs to be short.

Explanations which comprise lists of complex and unpronounceable words each with their own constraints and variable meanings leads to chaos. I could have just referred to one of the excellent publications on the web but this isn’t really practical when in an impromptu conversation with wide-eyed listeners. That said, I believe the combination of this post and (if you see light-bulbs) the other 2 linked posts within, is a good way to answer the question if someone is willing to listen (and read a short reference).  You may therefore need to follow-up the ‘verbal’ with the ‘written’.

To summarise, I intentionally made this explanation as generic as possible. Trying to explain every single type of Neuroendocrine Cancer will confuse and tire the best listener. If I was using this today, I would add my own additional comment about where my tumours were found and what treatment I’ve had – this I can do without a script! However, if you think this explanation is of use when verbally explaining Neuroendocrine in relation to your cancer, please feel free to share my blog post to aid understanding.

Neuroendocrine – what’s that?  I didn’t have a clue …… until I was diagnosed with it!

p.s. the little suckers get everywhere!

p.p.s. the anatomy of Neuroendocrine Cancer is a key awareness message – so Lets keep raising our ‘sites’ !

Thanks for reading

Ronny Allan

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



  1. Eileen Smith says:

    This is great, Ronny. Thanks so much for responding to my question!


    Liked by 1 person

  2. Merrilee says:

    Friend had surgery after pet scan was hot. They removed his spleen walnut size mass and 3 inches of pancreas. Said tissue pancreas cancerous. Told him he had invasive neuroendocrine cancer. Didn’t say the took out lymph nodes. Said the will get with Anderson and Barnes to decide what to do. His next appt . Isn’t until Jan 15 to find out what they decide to do. When they use the word invasive what are they saying. Should he go to different hospital for help. Small town hospital 40 thousand population. He’s asking me what to do. Wish they would have explained more to him. I’m a lung cancer survivor of 18 year . Thank for your help. What a journey you have been on.

    Liked by 1 person

    • Ronny Allan says:

      I have no idea, perhaps it’s something simple like it was invading the surrounding tissue, i.e. a synonym for ‘cancerous’. Did your friend get a Ki-67 score or ‘Grade’ ? Any sign of metastasis? (normally given as a ‘Stage’). There are many wonderful doctors out there but generally speaking it’s always better to see a Neuroendocrine Specialist. The fact that they have worked out that it is Neuroendocrine is a good sign though. You can find the links to all the specialists in USA within this article – the questions may also be useful for your friend as I believe they cover the whole spectrum of what someone needs to know about the disease (including the doctors who treat it!) https://ronnyallan.com/2017/04/25/diagnosed-with-neuroendocrine-cancer-10-questions-to-ask-your-doctor/


  3. Evelyn says:

    My partner has a tumour in the pancreas. Initially he had cancer markers in the blood but those have gone now. He has had several procedures carried out over the past few months but so far the doctors do not appear to have come up with a diagnosis. Do you think it is possible this is a carcinoid tumour?


    • ronnyallan says:

      Eveyln, of course anything is just about possible with cancer. I suspect you meant to say a Neuroendocrine Tumour. Carcinoid is one type of Neuroendocrine Tumour and whilst it is possible to get a carcinoid tumour in the pancreas, it is an unusual place for a primary.

      Which cancer markers are you referring to? Does he have any particular symptoms? Presumably you know there is a tumour because they scanned it?


      • Evelyn says:

        Thank you for your response to my post. I accept that I should have referred to neuroendocrine tumour rather than carcinoid. I tend to use the two terms interchangeably! My partner has been unwell for several months. Initially he was nauseous, jaundiced and his skin was extremely itchy. The consultant thought his symptoms were probably due to gallstones. However, no stones were found in the scans they carried out. He has now had several internal scans by endoscope. A stent has been fitted in the bile duct and a tumour has been discovered in the pancreas. He was back in hospital earlier this week when biopsies were taken from the pancreas, the liver and the lymph nodes. I wondered about the possibility of the tumour in the pancreas being a neuroendocrine tumour when the consultant told us that there had been cancer markers in earlier blood tests but those markers were no longer there. The reason I wondered about this was because my sister died last year after she was diagnosed with a carcinoid tumour in the small intestine. The doctors had not taken her symptoms seriously because their initial tests had ruled out bowel cancer and it was only when her condition seriously deteriorated that they carried out further tests. Sadly she only lived for two weeks after they finally diagnosed her condition. I hesitate to question the doctors about my partner’s condition as I have no medical training myself and my concerns are based solely on what happened to my sister. However, if my concerns are reasonable then I would raise them with the doctors.


      • ronnyallan says:

        I think you’re right to be cautious as any type of pancreatic cancer is difficult to diagnose. If they have done a biopsy, the biopsy result should confirm the type of tumour and how aggressive or indolent is is? You mentioned the liver and lymph nodes too – are you saying they have also found tumours in those areas?


      • Evelyn says:

        This is the second time they have taken biopsies of the pancreas and lymph nodes. It is the first time they have taken biopsies of the liver. We hope to get the results next week. So I don’t know if they have found tumours in any area other than the pancreas. I think they are exploring because so far they have not been able to determine the cause of his symptoms.

        Liked by 1 person

      • ronnyallan says:

        OK. I hope everything turns out well. It does sound like they are being thorough. Can I ask which country you are in and which hospital?


      • Evelyn says:

        We live in England. My partner is attending St James’ Hospital in Leeds. I will let you know the outcome of the recent tests. Thanks for your help.


      • ronnyallan says:

        Good luck. Incidentally Dr Alan Anthoney is the head Neuroendocrine guy there but you may be seeing someone in Upper GI as they are not sure of the problem.


      • Evelyn says:

        Thanks. It’s always good to have a named person in case you need it. As you thought, he is being seen in Upper GI at the moment. From our ‘conversation’ I will ask about the possibility of it being an neuroendocrine tumour if the recent investigations don’t reveal anything conclusive.

        Liked by 1 person

  4. Another great blog, a a good explanation to get people started. It also made me giggle a bit, as it’s a bit like trying to explain my job too, it’s just not straightforward!!

    Liked by 1 person

  5. […] was my first port of call for information and support, closely followed by the blogs of the lovely Ronny Allen and his Facebook page , who is also on this journey and has been very informative and supportive […]


  6. Ed says:

    Hey, that was a great post. It’s so complicated. When I first found out that I had Neuroendocrine cancer I started eating tons of garlic because it is supposed to be beneficial to those with brain cancer. I’m not sure if it helps US but I thought that it made sense. I will tell you one thing, it is NOT beneficial to your love life! <> Any how, thanks for the info. I will re-blog this. 🙂

    Liked by 1 person

    • ronnyallan says:

      I hate garlic Ed (the smell gets my back up every time). Tough choice. Thanks


      • Ed says:

        Yeah, you know…I was swallowing them like pills. I would cut them up and down them with water. I’m not doing that right now.

        Currently, I am just staying focused on eating healthy, mostly vegetables and trying to eat from the list I put together. Brassica Family, Allium Family, Mushrooms, Spinach, Berries…..small amounts of meat.

        I would like to get back to juicing but, hospital visits, scans, mouth sores from chemo and all that are keeping me too busy.

        One thing I’ve done is incorporate an “anti-cancer smoothie” into my family’s diet. It’s 1 pack of frozen organic strawberries, almond milk, a banana and a blender. Whiz it up and you’re done. 🙂

        Liked by 2 people

      • Christine Craig says:

        Interesting insight to your diet it shows how different we all are. I cannot look at the brassica family without getting severe wind and very painful bowel cramps. I do take a garlic pill everyday and it reduced the amount of sinus infections I was suffering from. Been in them 20 years now and truly believe that they help prevent infection. I have come off them for brief periods and the sinus problems returned with a vengence. I have assorted berry smoothies milk shakes every day as well.

        Liked by 2 people

      • Ed says:

        I was actually juicing raw broccoli, broccoli sprouts and oranges together…..kind of like Chinese food. I was doing it mostly to cleanse my liver but they are a good cancer fighter too as I understand it. http://www.carcinoid-cancer.com/broccoli-sprouts-pack-big-anticancer-punch/

        I went through this video made by a doctor and made a list of every vegetable that he named as a cancer fight for every cancer. So, if garlic was named for breast, colon and brain cancer then I put it in my list. It’s my master list….keeps things from getting boring. Here it is if you are interested. http://www.carcinoid-cancer.com/master-list-cancer-fighting-veggies/ Do you have a blog? 🙂

        Liked by 1 person

  7. zebrakat says:

    Excellent again but still hard to explain to people. 😀

    Liked by 1 person

  8. Holly says:

    Excellent, excellent, excellent! I can’t say any more. I am sending this to my family.

    Liked by 1 person

  9. Reblogged this on lovehopeandcourage and commented:
    Another great post by NET Cancer patient Ronny Allan -Neuroendocrine- what’s that?

    Liked by 1 person

  10. Christine Craig says:

    For any one out there who hasn’t been referred already there are NET centres all over the country. I go to Freeman hospital Newcastle and people come from a 100 mile radius to attend. They have specalist clinic With Dr Perros and a specalist Nurse Sister Angie Williamson with her own clinic. You can ring and ask to speak to her when you have a problem. I understand these clinics are now all over the country and you can find your nearest centre on the Net Foundation Web site under the Research page. It seems a lot of doctors do not know they are out there. They are all associated with multidisciplinary teams. I strongly advise evrryone out there to demand referral to their nearest clinic as they have all the latest knowledge and treatment at their fingertips. I know there are centers at Royal London and Birmingham any other areas you need to look up on the list. Good luck everyone I thought everyone knew about this

    Liked by 1 person

  11. Christine Craig says:

    great again thanks Ronny

    Liked by 1 person

  12. jleigh says:

    Very good information. Simply stated and easy to remember. Thanks.

    Liked by 1 person

  13. Brigitte says:

    excellent explanation, probably one of the best and easiest one to share with family members.

    Liked by 1 person

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