Neuroendocrine Cancer Nutrition Series Part 4 – Food for Thought?

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Nutrition is an important subject for many cancers but it is particularly important for Neuroendocrine Cancer. In the previous parts of this series I focused on the following:

Article 1 – Vitamin and Mineral Challenges. This was co-authored by Tara Whyand, UK’s most experienced NET Specialist Dietitian. This blog provides a list of vitamins and minerals which NET Cancer patients are at risk for deficiencies, together with some of the symptoms which might be displayed in a deficiency scenario.

Article 2 – Malabsorption. Overlapping slightly into Part 1, this covers the main side effects of certain NET surgical procedures and other mainstream treatments. Input from Tara Whyand.

Article 3 – ‘Gut Health’. This followed on from the first two blogs looking specifically at the issues caused by small intestine bacterial overgrowth (SIBO) as a consequence of cancer treatment. Also discusses probiotics. Input from Tara Whyand.

Article 5 – ‘Pancreatic Enzyme Replacement Therapy’. The role of PERT (Creon etc) in helping NET Patients. Input from Tara Whyand

Article 6 –‘Tara Whyand Video Series’. A number of fantastic short video covering a wide range of diet and nutrition issues experienced by NET patients. click here

I said in Article 1 that my intention is not to tell you what to eat, even though that might be a challenge for many and this theme continues. The issue with Nutrition and Diet in general, is that it’s very individual and what works for one may not work for another. Rather I’d like to focus in on why such things might have an effect – patients can then experiment and see what works for them. NET patients may have multiple problems and issues (including the effects of eating) which people may be relating to their cancer or the effects of a particular syndrome or treatment (working that out can be difficult!). Even if I link you to an authoritative site, it will most likely only show GENERAL GUIDELINES, since patients with NETs should really be assessed on a case-by-case basis. However, I can say that from personal experience, these guidelines are a good base to start in understanding the issue. You should always seek professional advice from a reliable ‘NETs aware’ dietitian who will be able to help you determine what your nutritional needs tailored for your particular situation. Be wary of the internet on diet and nutrition, there is much ‘quackery’ out there and normally they want to sell something regardless of whether it’s good for you or not. Fake healthcare news is big business unfortunately. You may also enjoy article 2 and article 3 of this series in internet dangers.

In this article, I want to cover the ‘knotty’ problem of what is in food that might be provoking a reaction and why. The other thing I would emphasise is that the cause of ‘provocation’ might not just be from what you have eaten, but how much. Moreover, whether the cause is syndromic, due to treatment; or from a co-morbidity. For example, if you’ve had classic small intestinal NET surgery, you’re likely to be missing a few feet of small intestine and potentially your ascending colon and all that goes with that (i.e. you’ve had a right hemicolectomy). It follows that your food might transit quicker than normal on its journey from mouth to toilet. There are no doubt other issues which might cause you to ‘move quickly’ and most of these issues will have been covered in Series Articles 1, 2 and 3. For those with Carcinoid Syndrome, you may also find my post on the 5 E’s useful.

A high level of serotonin is something people might be looking to avoid due to its relationship with midgut NETs and in particular those with Carcinoid Syndrome. One thing I noticed is that experienced dietitians are not saying you must totally avoid foods associated with serotonin. I say “associated” because serotonin is not found in foods (another NET myth), it is manufactured from amines in food. The only time dietitians would recommend staying totally away from these foods is before and during a 5HIAA urine test (5HIAA is a by-product of serotonin) as this could skew the results. Experienced NET dietitians will also tell you that amines in foods containing the precursor to Serotonin will not affect tumour growth.

It’s not just a serotonin problem – it is actually a much wider issue with something ‘vasoactive amines’ (or pressor amines). They are precursors for catecholamines such as adrenaline, which trigger some NETs to secrete vasoactive substances, which cause symptoms or in extreme cases, hormonal crisis. Tyramine is the most active of these amines. Other strongly active vasoactive amines found in food include histamine that can cause strong dilation of capillaries, and also cause hypertensive crisis. Reported reactions from these vasoactive amines are acute hypertension, headache, palpitations, tachycardia, flushing and unconsciousness. As a general rule, Tyramine and other pressor amines are usually only present in aged, fermented, spoiled protein products, but quite often, it’s food containing a precursor amine that is what you are looking for (for example Tryptophan is a precursor to Serotonin).

What are the trigger foods for those with ‘carcinoid syndrome’:

Most frequently reported trigger foods or habits include:

  • Eating larger meals
  • Eating high fat meals
  • Drinking alcohol
  • Eating very spicy foods
  • Eating raw tomatoes
  • Eating foods with a high or moderate amount of amines (see table).  But let’s be clear on this, even people without NETs can have issues consuming these things, it isn’t always about the NET or one of the NET syndromes.
Foods High in AminesFoods Moderate in Amines
  • Aged cheeses—cheddar, stilton, camembert, etc.
  • Alcohol—all types
  • Smoked, salted, or pickled fish and meats
  • Yeast extracts and “hydrolyzed” proteins–like marmite/vegemite, or used for flavoring processed foods, brewer’s yeast, nutritional yeast
  • Fermented foods—tofu, miso, sauerkraut, shrimp paste, fish sauce, soy sauce
  • Caffeine—coffee, cola
  • Dark chocolate, milk chocolate, cocoa powder
  • Peanuts, brazil nuts, coconut
  • Avocado, banana, raspberries
  • Soyfoods—tempeh
  • Fava beans
  • Certain vegetarian meat substitutes—check the label for ingredients

General Nutrition Tips for Symptomatic Carcinoid Syndrome:

  • Eat 4 to 6 smaller meals, instead of 3 larger meals
  • Choose a diet higher in protein
    • Best choices include: fresh fish, chicken, turkey, lean beef; beans and lentils; eggs; low fat dairy like milk, yogurt, cottage cheese – watch a 10 minute video from world renowned NET dietitian Tara Whyand talking about the importance of protein for NET patients – click here.
  • Reduce your fat intake
    • Choose the healthiest fats, including: extra virgin olive oil, nuts, seeds
  • Cook vegetables for improved digestibility
  • To minimize exacerbating diarrhea, limit or avoid wheat bran and foods made with wheat bran, prunes, dried fruits, and popcorn
  • Experiment with foods that are lower in amines (see table)
Foods Lower in Amines
  • Fresh lean meats, fresh poultry, fresh fish
  • Most vegetables—but cooked may be better tolerated than raw
  • Fruits in moderate amounts—but not banana, avocado, raspberries
  • Grain foods, starchy foods—lower fiber or soft cooked grains may be most tolerated
  • Un-aged cheeses and dairy—low fat cottage cheese, ricotta cheese, mozzarella cheese; low fat yogurt or kefir; low fat cream cheese; low fat milk or low fat lactose-free milk
  • Fresh soyfoods—soymilk, edamame

Keeping a food and symptom diary may be helpful. Record your daily food and drink consumption and any symptoms that you experience. You may start to notice a pattern.

For a more comprehensive list of amines, check out this leaflet built by NET Patient Pamela PoulsonClick here.

One thing I would say to people is that the amines issue is quite relevant if you have an over-secreting NET where certain amines including vasoactive and pressor kind might cause reactions. In actual fact these reactions to these types of foods are not limited to NETs, anyone can have this type of reaction if eating too much.

The issue can be exacerbated in NET patients who have highly elevated levels of (say) serotonin with carcinoid syndrome, and with certain other hormonal syndromes such as catecholamine secreting Pheochromocytoma/ Paraganglioma. As Pamela emphasises in her excellent sheet above, everyone is different, e.g. I happily and regularly eat bananas and wholemeal cereal with no issues whatsoever!

For those who are experiencing digestive issues and who are non-syndromic but who have had surgery and /or other therapies, amines might be less of an issue (other than when being tested for 5HIAA) and you may need more focus on other dietary guidance, e.g. if you have had bowel surgery, low and high ‘residue’ foodstuffs (essentially easy to digest, normal correlates to low and high fibre) may be something to prescribed but they are normally only a temporary solution allowing the bowel to heal gently.

My own experience

Personally I cannot think of a single food which causes me to have a ‘reaction’ other than if I eat too much or eat something with a high fat content. Basically for someone who has had abdominal surgery, the system cannot cope for one reason or more – see Series Article 2. It’s important to distinguish this type of reaction which is actually something caused by the consequences of cancer treatment rather than one of the ‘syndrome’ effects. The answer might simply be to reduce or adjust food intake rather than cut foods out, particularly foods that you may need for nutrition and energy. And of course, foods you enjoy which don’t cause issues, are related to quality of life.

What I do know from masses of experimentation and running a diary, is that large meals can give me issues. However, as hinted above, I put that down to surgery – NOT syndrome. I also reduced consumption of fatty foods but that was mainly to combat malabsorption caused by my surgery and exacerbated by Somatostatin Analogues. Again NOT syndrome. I reduced alcohol but mainly because I was concerned about my compromised liver after surgery.

Other useful links which have an association to this blog:

{a} Read a Gut Surgery Diet Booklet authored by Tara – CLICK HERE

{b} Follow Tara on Twitter – CLICK HERE

(c) Her Facebook page is here

Thanks for reading.


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4 thoughts on “Neuroendocrine Cancer Nutrition Series Part 4 – Food for Thought?

  • Sue

    Having read your blogs on nutrition Ronny I would like to ask a question, as I cannot find an answer in your blogs – I have Type 1, Grade1 Gastric NETs on a background of pernicious anaemia (inc’ loss of parietal cells causing an inability to make intrinsic factor), and chronic atrophic gastritis, accompanied by hypergastrinemia, low volume acid and high chromogranin levels. I have not had any resection and am on yearly to 18 monthly endoscopy surveillance – I have not had any scans, I am not assigned to a MDT, nor do I have a point of contact to ask any questions of. So, my question here is:-
    as it is highly likely that my stomach has impaired functionality, do you have any advice/information/research guidance etc that might help me to improve my gut health and function.
    Thanks for all the interesting and informative articles and the work you do.

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