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Nutrition in NETs

Diet is something that you can take  control of to maximise your treatment outcomes and improve your quality of day to day living. Here are some key points to know:

  • Diet is not currently used as a sole treatment, but can help with symptom control and stabilising weight.
  • Neutraceuticals  (nutrients in potent doses used as a pharmaceutical) research is ongoing and there are promising results in other cancer types.

Benefits of eating well for your type of tumour:

  • It helps you cope better with treatment.
  • It helps wounds and damaged tissues heal better. This is important after surgery, chemotherapy, radiotherapy or other medical treatment.
  • It improves your body’s immune system, its natural defence.
  • Eating well will also help you stay a healthy weight and feel better in yourself. This is important even if you are not having treatment.

Neuroendocrine tumours (NETs) can occur anywhere in the body. In some patients the NET makes hormones (chemicals) that can cause symptoms such as flushing, diarrhoea, wheezing and damage to heart valves and these will be discussed with you. These symptoms are caused by the large secretions or serotonin from neuroendocrine tumour cells. When the body makes large amounts of serotonin, tryptophan (a special chemical called an amino acid) becomes too low. When tryptophan stores are low it cannot be converted into the vitamin niacin (Vitamin B3), which may then cause deficiency in this vitamin.


As a result, diets should aim to provide increased amounts of dietary protein (contains the amino acid tryptophan) and niacin (B3) without the risk of triggering carcinoid syndrome:

  • Have 4-6 small high protein meals/snacks. High protein includes: Fish, poultry, lean meat, eggs, low fat dairy, whey protein powder/products.
  • You should take a daily niacin (B3) containing tablet such as Vitamin B Strong compound.
  • Record and avoid carcinoid ‘trigger’ foods if you notice a problem (see below).

Studies have shown that for some patients certain foods and drinks can ‘trigger’ symptoms such as abdominal pain, diarrhoea and flushing. The types of foods/drinks that cause this reaction are individual in nature and the most reliable method of identifying possible “trigger foods” is with a food and symptom diary. The diary is completed by the patient over a 2-week period including food intake, medications and then the symptoms experienced afterwards.


It is essential that a dietitian is involved in this discussion to ensure that vital food groups are not removed from the diet to prevent any nutrient deficiencies.


Possible common triggers:

  • Size of the meal
  • Fats content
  • Alcohol
  • Spice
  • Meals moderate to high in amines may also trigger symptoms in some people
  • Foods high in amines: aged cheese, alcohol, smoked/salted fish & meat, yeast, fermented-tofu, miso, sauerkraut
  • Moderate in amines: large dose of caffeine, chocolate, peanuts, brazil nuts, coconut, avocado, banana, raspberries, most soybean products (soy sauce, tempeh), broad beans.


Carcinoid patients may benefit from using low fat cooking methods.  Try MCT from coconut oil as alternative to other cooking oils as they have a different process of absorption and so are often better tolerated.
  • Diarrhoea may be a result of hormones, treatment, intolerance to foods or an infection.
  • If it is out of the ordinary and you have not just started a new treatment see your Doctor as you may have an infection.
  • If your gall bladder has been removed, your Doctor may prescribe a bile acid binding drug e.g. Questran.
  • Eat little and often.
  • Reduce insoluble fibre but increase soluble fibre in diet.
  • Cook and peel fruit and vegetables.
  • Non dairy multi-strain probiotic- bifido/lacto >2billion parts  may also help – recommended dose is >2billion parts.  To date, dietetic advice has been to avoid probiotic use during chemotherapy due to the theoretical risks posed to an immunocompromised patient. However, the actual evidence base is lacking to support this recommendation. Therefore, should you wish to take probiotics during chemotherapy, please discuss this with your medical team.
  • If suffering diarrhoea predominant IBS and all of above have been trialled, you should ask to see a Dietitian for trial of the low FODMAP diet.
  • Somatostatin analogues Chemotherapy eg FciSt including 5-Fu can lead to hypo’s, nausea, vomiting, poor appetite and diarrhoea.
  • Radiotherapy can cause site specific issues and must be discussed with your doctor.
  • Everolimus – Avoid grapefruit, seville oranges, star fruit juice or drink their juices and St John’s Wort supplement.
  • Sunitinib (chemotherapy) can cause anaemia, tiredness, voice box probs and nausea.
  • Interferon can cause neutropenia, anaemia, tiredness and throat problems.
  • Radionuclitide Therapy- Tiredness, nausea and vomiting.
  • In both radiotherapy and chemotherapy, you may want to stop taking anti oxidant supplements such as Co enzyme Q10, selenium and the vitamins A, C and E.
  • Surgery- problems will depend on site of tumours. Whipples, and stoma formation require greater changes in diet and individual advice will be provided in these circumstances.

Types of pancreatic enzyme replacement therapy (PERT): Creon®, Nutrizym®, Pancrease HL® or Pancrex®.

  • Suggested starting dose: One 25,000 units of lipase capsule with a snack/small meal. Two 25,000 units of lipase capsule with a meal.
  • The dose can then be titrated up to a maximum of 75,000 to 80,000 units of lipase per meal (this dose is under national review at time of writing).
  • Take with a cold drink before your first mouthful of fat containing food (some people need them with protein and carbohydrate, aswell as fat if they do not have any pancreas left)
  • They last ~ 30-40 minutes.
  • Take Proton pump inhibitors e.g. Omeprazole, before taking the enzymes.
  • Avoid alcohol 1 hour before and after PERT and meals.


Fat malabsorption and fat soluble vitamin deficiency: If you are not absorbing fat, it can lead to weight loss and micronutrient deficiencies of vitamin A, D, E and K.  These deficiencies will be treated with supplements.

How to manage nausea:

  • Eat small, frequent meals throughout the day to avoid feeling full.
  • Take little sips of nutritious drinks between meals rather than with them to avoid feeling full.
  • Cold food and drinks usually have less smell than hot cooked foods. Avoid cooking smells if possible.

To reduce nausea:

  • Tart flavours: Citrus juices, sorbets and lemon curd.
  • Salty and minty flavours.
  • Plain biscuits, crackers or dry toast.
  • Avoid greasy or fatty foods.
The cause of this should be investigated by the healthcare team and possible medication discussed to help regulate bowel motions.
It is important to drink plenty of fluids as dehydration can make this symptom worse.  A high fibre diet and prune juice can improve symptoms and you may also find that gentle exercise helps.

Special NET Diets

Do not exclude anything from your diet unless your Dietitian specifically tells you to as you may do more harm than good.  For example, following dairy free, serotonin free, sugar free, juice diets or vegan diets is not recommended.  You should always discuss the suitability of complementary therapies with your medical team.


Information provided by Tara Whyand M.Sc, B.Sc (Specialist Neuroendocrine Tumour and Oncology Dietitian, Royal Free, London)

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