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Neuroendocrine Cancer – the diarrhea jigsaw

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NETCancer Diarrhea Jigsaw

Going to the ‘toilet’ can sometimes be a taboo subject …… unless you are a Neuroendocrine Cancer patient of course 🙂


Firstly, it is a key symptom in Neuroendocrine Tumour NET Syndromes and types, in particular, Carcinoid Syndrome but also in those associated with various other NET types such as VIPoma, PPoma, Gastrinoma, Somatostatinoma, Medullary Thyroid Carcinoma.

Secondly, it can be a key consequence of the treatment for Neuroendocrine Tumours and Carcinomas, in particular following surgery where various bits of the gastrointestinal tract are excised to remove and/or debulk tumour load.

There are other reasons that might be causing or contributing, including (but not limited to) endocrine problems such as hyperthryoidism, mastocytosis or Addison’s disease (which may be secondary illnesses in those with NETs).  It’s also possible that ‘non-sydromic’ issues such as stress and diet are contributing. It could be caused by other things such as Irritable Bowel Syndrome (IBS). Yes, believe it or not, NET Patients can get normal diarrhea causing diseases too!


I want to give a general definition of diarrhea as there are many variants out there. In general, they all tend to agree that diarrhea is having more frequent, loose and watery stools. Three or more stools per day seems to be the generally accepted threshold, although some sites don’t put a figure on it.  It’s not pleasant and just about everyone on the planet will suffer it at some point in their life, perhaps with repeated episodes. Normally it’s related to some kind of bug, or something you’ve eaten and will only last a few days before it settles (acute diarrhea). Diarrhea lasting more than a couple of weeks is considered chronic and some people will require medical care to treat it.  It can also be caused by anxiety, a food allergy/intolerance or as a side effect of medicine. Pharmacists and GPs will be seeing many patients with this common ailment every single day of business.

Diarrhea induced by a Syndrome

When you consider the explanation above, it’s not really surprising that diarrhea related symptoms can delay a diagnosis of Neuroendocrine Cancer (and most likely other cancers too, e.g. pancreatic cancer, bowel cancer). For example, diarrhea is the second most common symptom of Carcinoid Syndrome (Flushing is actually the most common) and is caused mainly by the oversecretion of the hormone Serotonin from the tumours. Please note diarrhea from other types of syndromes or NETs may be caused by other hormones.

I’ve heard stories of people being told they have IBS or something similar for years before they received what is now a late diagnosis and at an advanced cancer stage. This is only one of the reasons why NETs is not an easy condition to diagnose, although it is possible that some people actually had IBS and it was masking the NET. Even after treatment to remove or reduce tumours, many people will remain syndromic and need assistance and treatment to combat diarrhea induced by a NET syndrome (see below).

Sorting out the symptoms – post diagnosis

I like to describe this as the Neuroendocrine Cancer jigsaw. It’s a really difficult one and sometimes you cannot find a piece, or the pieces won’t fit. However, metaphorically speaking, the missing piece might be a NET specialist presentation, a comment, statement or view from another patient, a link to an article from a reputable source, or even something you do to improve your lot – there might even be trial and error involved. It might even be this blog post!

How do you work out whether diarrhea is caused by a hormone producing tumour or by the side effects of treatments? There’s no easy answer to this as both might be contributing. One crude but logical way is to just accept that if you have normal hormone markers, for example 5HIAA (there could be more for other tumour/syndrome types), and you’re not really  experiencing any of the other classic symptoms, then your syndrome might be under control due to your treatment (e.g. debulking surgery and/or somatostatin analogues, or another drug). My Oncologist labels me as ‘non-syndromic’ – something which I agree with. I’m 99.999999% sure my issues are as a result of the treatment I’ve had and am receiving.

Diarrhea as a Consequence of Neuroendocrine Cancer Treatment

All cancer treatments can have consequences and Neuroendocrine Cancer is definitely no exception here. For example, if they chop out several feet of small intestine, a chunk of your large intestine, chunks (or all) of your stomach or your pancreas, your gallbladder and bits of your liver, this is going to have an effect on the efficiency of your ‘waste disposal system’. One effect is that it will now work faster! There are also knock-on effects which may create additional issues with the digestive system including but not limited to; Malabsorption and SIBO.  I recommend you read my posts on Malabsorption and SIBO.

Many non-surgical treatments can also cause diarrhea, including but not limited to; somatostatin analogues, chemotherapy, biological targeted therapy (e.g. Everolimus, Sunitinib), radiotherapy.

Somatostatin analogues are an interesting one as they are designed to inhibit secretion of particular hormones and peptides by binding to the receptors found on Neuroendocrine tumour cells. This has the knock-on effect of inhibiting digestive enzymes which are necessary to break down the fat in our foods leading to Malabsorption of important nutrients. This may also lead to diarrhea symptoms.  For example, a meal with high levels of fat may cause issues as the compromised digestive system fails to cope. This is not ‘syndrome induced’ diarrhea, this is not a syndrome problem. To further complicate this problem, the gastointestinal malabsorption associated with Neuroendocrine Cancer can also lead to something known as steatorrhea. This isn’t really diarrhea and patients will recognise it in their stools which may be floating, foul-smelling and greasy (oily) and frothy looking.

Clearly, I cannot offer any professional medical advice on coping with diarrhea, I can only discuss my own situation and what I found worked for me. Don’t forget, like many diseases, what works for one, might not work for another. However, I did tackle my problems following the advice of an experienced dietitian who specialises in NET Cancer. That said, I was ‘sleep walking’ for over 2 years thinking my issues were just part of the way things were after my treatment.  I was wrong about that!

Treatment for Diarrhea and other related side effects

This disease is so individual and there are many factors involved including the type of syndrome/NET, patient comorbidities and secondary illnesses, consequences of the surgery or treatments performed, side effects of drugs – all of which is intermingled with suspicion and coincidence – it’s that jigsaw again!  I always like to look in more detail to understand why certain things might be better than others, I always challenge the ‘status quo’ looking to find a better ‘normal’.  I really do think there are different strategies for syndrome induced diarrhea and that which is a result of treatment or a side effect of treatment.  There’s also different prices, with inhibitors costing thousands, whilst classic anti-diarrhea treatments are just a few pennies.  Adjustments to diets are free!

When I was discharged from hospital after the removal of my small intestinal primary, I was in the toilet A LOT (I was actually in the toilet a lot before I was discharged – check out my primary surgery blogs here) .  My surgeon did say it would take months to get back to ‘normal’ – he was right and it did eventually settle – although my new ‘toilet normal’ was soft and loose and several times daily.  My previously elevated CgA and 5HIAA were eventually back to normal and my flushing had disappeared.  I didn’t have too many issues with diarrhea before diagnosis.  Deduction:  my issues are most likely not syndrome induced.

I read that many people find basic ‘Loperamide’ (Imodium) helps and I tend to agree with that if you are non syndromic and just need that little bit of help.  I decided long time ago I would not become ‘hooked’ and only really take it for two purposes:  1) if I have a bad patch and 2) if I’m going on a long journey (i.e. on a plane perhaps).  I estimate I’ve used 2 packets in as many years.  Loperamide decreases the activity which causes intestinal motility (peristalsis). This has the effect of increasing the time material stays in the intestine therefore allowing more water to be absorbed from the fecal matter.  Ideal for those with a shorter bowel due to surgery and advice from a medical professional is always advisable.    To reduce the risk of malabsorption induced diarrhea and steatorrhoea, both of which can lead to loss of valuable nutrients, the use of Pancreatic Enzyme Replacement Therapy (PERT) might need to be introduced as required by your NET specialist.

As for my own strategy, I filtered out the advice from a NET specialist dietitian and have managed to make quite a difference to my Quality of Life (QoL) without resorting to really expensive drugs (which come with their own side effects).  Here’s things that helped:

  • made some changes to diet (they were not huge changes),
  • included supplementation where necessary,
  • reduced stress as far as is practical to do,
  • exercise,
  • maintained a diary to help with monitoring progress or setbacks,
  • hydration is also important (….still working on that one).
  • started taking PERT (Creon) on 23 Dec 2017 (still assessing as at 23 Jan 2018) but looks positive so far.

With no fancy and expensive drugs, I’ve gone from 6-8 visits to 1-2 visits (as a daily average, it’s actually 1.6).  This didn’t happen overnight though, it took a lot of time and patience.  All of this doesn’t mean to say I don’t have issues from time to time …… because I do!

Treatment for Syndrome Induced Diarrhea 

Like many other NET patients, I’m on a 28 day injection of somatostatin analogues (in my case Lanreotide).  Both Octreotide and Lanreotide are designed to reduce the effects of NET syndromes and therefore can make a difference to syndrome induced diarrhea. These drugs also have anti-tumour effect and so even if you are not syndromic or they do not halt or adequately control syndrome induced diarrhea, they are still a valuable contribution to NET treatment.

Some syndromic patients find they still have diarrhea despite somatostatin analogues and they end up having ‘rescue shots’ or pumps for relief (both of these methods tend to be Octreotide based).  Some have more frequent injections of the long acting versions of somatostatin analogues which has the effect of increasing the dosage.  There’s a new drug available for those whose carcinoid syndrome induced diarrhea is not adequately controlled or they are unable to have somatostatin analogues as a treatment. Telotristat Ethyl works by inhibiting tryptophan hydroxylase (TPH), a chemical reactor involved in the manufacture of serotonin, which is the main cause of syndrome induced diarrhea.  It was approved by the US FDA in February 2017, EU areas in September 2017, and is on the way to being approved elsewhere.  Read about this drug here.

In summary, I think it’s important that people be sure what is actually causing their diarrhea after diagnosis so that the right advice and the right treatment can be given.

Listen to Dr Wolin talking about this particular jigsaw puzzle – click here

Also see a nice article that come out of NANETS 2017 – click here

Of course, some people sometimes have the opposite effect but that’s in another blog here – Constipation

You may be interested in this development

Toilet cards are available from NET Patient Foundation – email nurses@netpatientfoundation.org


You can also obtain a toilet card from Macmillan – see here

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!




  1. Deanna Vickery, Mrs says:

    Interesting to read about symptoms relating to post-surgery. I developed asthma and thyroid-inufficiency following removal of pituitary adenoma, and I’ve only had diarrhea/gas probs following intestinal surgery to remove mid-gut carcinoid.
    thank you Ronny


    Liked by 1 person

    • Ronny Allan says:

      Hope you’re doing OK? I get the thyroid side effect following pituitary, never thought about asthma, need to study it


      • Deanna Vickery, Mrs says:

        Thanks for your reply Ronny. Think I’ve read somewhere a link re NET/asthma but be good if you also come across any material. Like you I’m on monthly lanreotide since 2014 (mid-gut surgery and diagnosis was 2011). My biggest prob is the gut/toilet + gas thing, particularly bad in the evenings. A very isolating disease.

        Liked by 1 person

      • Ronny Allan says:

        The Gut/toilet/gas thing is so individual, probably best handled by an experienced NET dietition. However, understanding the source of the issues can be very helpful. Below, i had assumed the asthma was as a result of pituarity ademo removal and that is way beyond my knowledge. Asthma can indeed be a symptom of carcinoid syndrome, particularly foregut/ bronchial NETs. The way I see it is if your hormone marker tests are normal and you’ve had/having treatment, then you need to assess the symptoms as potential treatment side effects. I have worked and worked myself from an average of 5-6 visits to the bathroom down to 1.5 average per day (i.e. pretty normal) and gas is reduced. I havent changed my diet in any radical sense, i just understand why certain things affect me. For example, if you’ve had small intestinal surgery (e.g. right hemicolectomy), you will have a shorter bowel and therefore a speedier system. You need to work on slowing that down. Additionally, you may have other potential problem sources such as bile acid malabsorption and bacterial imbalance or overgrowth. Somatostatin analogues will exacerbate these issues by inhibiting digestive enzymes creating malabsorption issues such as steatorrhea which some people confuse with diarrhea. Again, there are things you can do to reduce this. Add diet to the issue and gas can become a problem. It’s not an exact science. I think all SI NET patients and certain pNETs need to assume they have IBS and work to reduce these effects and not simply assume they have syndromes. Not easy. Have you read my nutrition series of posts?


  2. Steph shepherd says:

    Ronny , my sister is raising g funds for PLANETS by having a lunch do at 8 Stafford Road Swanage on Friday tomorrow from 1-5 . Can you get there ? Hope to see you there Steph xx

    Liked by 1 person

  3. Steph shepherd says:

    Dear Ronny , interested to read that the lanreotide can help with managing diarrhoea . I actually find the four weekly injections actually give me days of diarrhoea ! Usually kicks in about 24 hours after the injection . I get the same old steatorrhoea type faeces . This means I’m going to the loo upwards of 15-17 times a day !! I’m now looking at a low histamine diet as I reacted badly to aubergine and my son asked me if I had looked at histamine as a possible cause . My son had a client, he is a personal trainer ,who had pursued this after suffering for years with IBS . She rnddd up in Switzerland and sent me details of screalkh interesting site . histaminintoleranz.ch . The site gives a full list not only if food but also of drugs . I fog X this really useful as both codeine and ibuprofen were giving me diarrhoea of epic proportions ! I then discovered a really good app. This allows me to look at most foods and through a traffic light system lets me know quickly the foods histamine levels .. German gebhardt. Might be worth a look . On answering feed back I was told ibuprofen was a very good histamine inhibitor but it’s important to get pure ibuprofen as the additives used to make tyectsblets can affect anyone with histamine issues . This is all he’s fif me but really does appear to help with my diarrhoea . Very interestingly watercress and pea shoots are a reall goid natural histamine inhibitor so I try to have those at every meal . Ok I’m still at above ten levels a day if going to the loo but if I’m strict about following the diet I do have some relief . I met you Ronny at the Southampton PLANETS meeting back in July . Be good to meet up again at the next ? Steph xx

    Liked by 1 person

    • Ronny Allan says:

      Steph, everyone is so different! I have heard of people getting worsening diarreah after Lanreotide, for some it’s a short term issue. I personally find it odd as the drug should show things down! The drug inhibits digestive enzymes this why you see some steatorrhea. The steatorrhea can be caused by surgery (which can cause a decrease in digestive enzymes) and the Lanreotide can make it worse due to its inhibiting function. It also inhibits other stuff which is good but we need to manage certain side effects. Now ….. I don’t class steatorrhea as diarreah which is an effect rather part of the digestive process. Steatorrhea only effects me after a eating certain things plus I tend to see a worsening 24 hours after Lanreotide but it’s short lasting, perhaps 1 or 2 days,

      Have you been tested for histamine? I’ve read that foregut tumours release more histamine than midgut. Personally I would be concerned at taking long term ibuprofen. It does sound like you need NET dietician specialist advice from someone like Tara Whyand. Why don’t you give Mark Southern a call? (He’s our specialist Nurse based in Poole).


  4. Steph shepherd says:

    Hi again Ronny , interesting read but fur me I get even worse diarrhoea the first ten days of Lancreotide injection . A chance comment has led me to low histamine diet . That’s seems definitely part of the problem and hopefully the solution . Not than its getting better .. It’s just when I follow low histamine diet I don’t get the ’20 odd goes to the loo days’ .. More about 11 times . Why does this always start at 4 in the morning though ?
    I’m about to have a liver biopsy, in two days time, to see how aggressive the tumours are in my liver with the thoughts of doing chemo after those results are in . For me it’s the diarrhoea that causes the most disruption to my life not the cancer !! I’m totally convinced ( most days) that the cancer can be sorted but the diarrhoea is overwhelming . I daren’t eat at night . Just have a good breakfast .. Porridge made with almond milk and then low histamine lunch . Might have a small snack .. two white pieces of toast( seem to be able to tolerate that amount of bread ) with two egg yolks for very early supper . Getting to grips with all this is difficult as I am allergic to Immodium AND Codiene ( Codiene high histamine ) so actually gives me diarrhoea . Any tips ? I’m reading about DAO. Is that something you’ve looked at ? At present I’m in thyroxine fur low thyroid .. Creon whenever I eat .. Ipramazole once in morning . Today I’m picking up VSL#3 . Think that’s once or twice a day .

    Liked by 1 person

  5. Always a delicate subject Ronny, but glad you have put it out there as it can be such a big part of this illness, and have massive impact on QoL. Creon has been a major help for me too.

    Liked by 1 person

    • Ronny Allan says:

      Yes, been ‘umming and ahhing’ about this one, very variable and complicated. And of course, you can get 1000 variations of the theme on forums. Lost count of people saying they still have “Carcinoid Syndrome” immediately after intestinal surgery……..erm. I did cover PERT in my malabsorption blog which I feel it’s more related to. Steatorrhea isn’t really diarrhoea but there is clearly an overlap and possible to have both simultaneously.

      Liked by 1 person

      • I think by encouraging conversation people will be more comfortable discussing, and in turn better understand what is syndrome and what isn’t. I suppose some of it comes down to that stiff upper lip you talked about😉

        I have no problem discussing it, mind you I was brought up in a family full of nurses (didn’t inherit the gene though!!).

        Liked by 1 person

      • WordNoid says:

        I found this post interesting for a number of reasons — I’m a relatively recently diagnosed NET patient (small intestine) and one reason everybody thought I had inflammatory bowel disease for over a year was that a first-degree relative DOES have inflammatory bowel disease (which, for the record, is not IBS and is clinically much more serious). I was not at all surprised that the doctors were misled because, knowing my own relative’s symptoms, I had *almost* all the same ones.

        But anyway — inflammatory bowel disease (IBD) patients also learn very fast to communicate about topics, and use words, that healthy people might find off-color. If a person living with epilepsy can refer casually to a seizure, and a person living with diabetes can speak casually of their ‘levels’, why should we not be able to refer to our own clinical histories to explain what is going on? Many commonalities here and in both cases education of those healthy people is part of our Grand Challenge. Keep up the good work, Mr Allan.

        Liked by 1 person

      • Ronny Allan says:

        Great comment, thanks. I hope you’re doing OK


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