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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 medication) research is ongoing and there are promising results in other cancer types.
Benefits of eating well for your type of tumour:
- It helps your body 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 of serotonin from neuroendocrine tumour cells. The process of making serotonin uses tryptophan (a building block of protein) which in turn is needed to make niacin (vitamin B3), therefore levels of both of these can become low.
As a result, diets should aim to provide increased amounts of dietary protein and niacin (B3) therefore it is recommended to:
- Have 4-6 small high protein meals/snacks. High protein includes: Fish, poultry, lean meat, eggs, dairy, beans, lentils, tofu, Quorn, nuts and seeds.
- You could consider taking 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.
A dietitian can help you to ensure that vital food groups are not removed from the diet to prevent any nutrient deficiencies.
Possible common triggers:
- A large meal
- High fat content
- 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
Foods moderate in amines: large dose of caffeine, chocolate, peanuts, brazil nuts, coconut, avocado, banana, raspberries, most soybean products (soy sauce, tempeh), broad beans.
Sometimes when you have a NET you may lose weight which may be due to the tumour itself or the treatments you are having. As first line you can try to increase your intake with these tips:
- Eat little and often – 3 small meals and 3 snacks a day
- Use convenience foods e.g. ready meals, tinned food, breakfast cereals
- Have protein (meat, fish, egg, dairy, beans, lentils, nuts, Quorn or tofu) at least three times a day
- Fry or add oil/butter/margarine to foods e.g. potatoes, vegetables, eggs, fish, meat
- Have full fat and full sugar foods
- Add cream/cheese/butter/margarine to vegetables, potatoes, soups.
- Try to have a pudding once or twice a day with cream/ice cream/custard
- Use fortified milk – add 3-4 tablespoons of skimmed milk powder to 1 pint of whole milk
- Have regular milky drinks e.g. hot chocolate, Horlicks, Ovaltine, Nesquik, milkshake, Complan, Build-Up
You may also need to see a dietitian for a personalised dietary plan and for a trial of nutritional supplement drinks e.g. Ensure, Fortisip, Fresubin.
- 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 terminal ileum (end of small bowel) or gall bladder have been removed, your Doctor may prescribe a bile acid binding drug e.g. Questran.
- Eat little and often.
- Try reducing insoluble fibre e.g. cook and peel fruit and vegetables and reduce bran, wholewheat, nuts, seeds, beans and lentils.
- Try reducing your intake of alcohol and caffeine from tea, coffee and fizzy drinks.
- Avoid sugar free sweets, gum, mints and drinks containing sorbitol, xylitol and mannitol
- Non dairy multi-strain probiotic containing bifidobacteriu/lactobacillus may 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 trialed, you could ask to see a Dietitian for trial of the low FODMAP diet.
- If you have had some types of gastro-intestinal surgery or been on long term antibiotics your diarrhoea may be due to small intestinal bacterial overgrowth (SIBO). There is not a reliable test to diagnose SIBO but your doctor may prescribe antibiotics to help treat it.
- See separate section on fat malabsorption treatment for pale, oily, floaty, smelly stools.
Steatorrhoea is caused by fat not being properly digested by the body and therefore it passes out in your stool which can become pale, oily, floating, frothy and/or smelly. It is due to the enzymes which normally break down our food not being available. In NET patients this can be due to somatostatin analogues (lanreotide/octreotide) or surgery where some or your entire pancreas is removed.
You will often be prescribed pancreatic enzymes to help break down your food normally. 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 be increased based on patient weight and symptoms.
- 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 so if you are having a long meal you many need to take some at the start and some part way through the meal.
- Take Proton pump inhibitors e.g. Omeprazole, before taking the enzymes as they help improve their effectiveness.
- 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 micronutrient deficiencies of vitamin A, D, E, K and B12. Taking PERT will help your body to absorb these micronutrients and any deficiencies will be treated with vitamin supplements.
How to manage nausea:
- Eat small, frequent meals throughout the day to avoid feeling full.
- Take little sips of nutritious drinks e.g.milk, milkshakes, nutritional supplement drink 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 try:
- Tart flavours: Citrus juices, sorbets and lemon curd.
- Plain biscuits, crackers or dry toast.
- Avoiding greasy or fatty foods.
- Peppermints or peppermint teas
- Ginger in food or drinks
The cause of this should be investigated by the healthcare team and possible medication discussed to help regulate bowel motions.
How to help prevent constipation:
- Drink plenty of fluids
- Increase the fibre in your diet (oats, wholegrains, fruit, vegetables, nuts, seeds, beans, lentils).
- Try drinking prune juice
- Try having one tablespoon per day of brown or golden linseeds (whole or ground)
- Take regular gentle exercise
This can be caused by the NET itself or treatments and can accompany diarrhoea and constipation.
To help prevent symptoms:
- Try avoiding gas producing foods e.g. onions, garlic, cabbage, sprouts, beans, lentils, cauliflower, broccoli, nuts and spicy foods. These can be trialled one at a time to see which cause symptoms.
- Try a low insoluble fibre diet – cook and peel fruit and vegetables and reduce bran, wholewheat, nuts, seeds , beans and lentils and reduce bran, wholewheat, nuts, seeds, beans, lentils.
- Avoid fizzy drinks and chewing/bubble gum.
- Chew your food well.
- Try eating oats e.g. porridge.
- Try including up to one tablespoon of linseeds in your diet.
- Everolimus (Afinitor) – Avoid grapefruit, seville oranges, star fruit juice or drink their juices and St John’s Wort supplement.
- Chemotherapy or Interferon – if your white blood cells become too low you should receive advice on following follow a neutropenic diet, ask your team or dietitian for more advice.
- 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 the type of surgery you have had. Whipples, blowel resection, stoma formation and and gastrectomy require greater changes in diet and individual advice will be provided by your dietitian or doctor in these circumstances. You may be asked to follow a low fibre diet – see diarrhoea section.
- Insulinoma – eat little and often and see your dietitian for a low glycaemic index diet.
- VIPoma – you may need to see your dietitian for a high potassium diet if your levels of potassium are low.
There are a lot of diets in the papers or online that can claim to cure or improve cancer. Unfortunately most of these diets are not proven to work scientifically and can even be unsafe for some people. Do not exclude anything from your diet unless your dietitian specifically tells you to. Following a dairy free, serotonin free, sugar free, alkaline or ketogenic diet is not recommended.
If there are any nutritional supplement drinks or tablets that you would like to take please discuss with you dietitian or medical team.
If you are treated by the Wessex NET team and would like to be referred to the NET dietitian, Ruth Lee, please ask your NET nurse or consultant to refer you.
Information provided by Tara Whyand M.Sc, B.Sc (Specialist Neuroendocrine Tumour and Oncology Dietitian, Royal Free, London) and Ruth Lee (Neuroendocrine Oncology Dietitian, Poole Hospital NHS Foundation Trust)
Download ‘Nutrition for NETS‘ Booklet by Tara Whyand – produced by MENETS in 2021 (Middle East Neuroendocrine Tumor Society)
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