Nutrition & NETs Kylie Scarfe Clinical Dietitian, Upper Gastrointestinal Surgery Royal North Shore Hospital

What are NETs? NET = Neuroendocrine tumours Slow growing tumours of the ‘diffuse’ endocrine system Many different types of NETs - digestive & respiratory systems, ovaries, testes and pancreas ‘Functioning’ (hormone secreting) or ‘Non-functioning’ (non-hormone secreting) Non-functioning tumours - symptoms relate to size, pressure on surrounding tissue

Why is nutrition important? High incidence of gastrointestinal involvement - small bowel, large bowel, rectum, stomach General symptoms & treatments may affect nutritional health – diarrhoea, weight loss, lethargy, gas & bloating, nausea ‘Carcinoid syndrome’ – increased intake of protein rich foods, role for limiting foods high in amines Asymptomatic tumours – general healthy eating principles to maintain health Prevention of reoccurrence of disease - general healthy eating principles for cancer prevention

Is there are ‘diet’ for people with NETs? Short answer – NO There are: General healthy eating principles – Australian Guide to Healthy Eating (AGHE), Cancer Council of Australia Specific nutritional strategies to cope with symptoms, effects of treatment. Nutritional adequacy must be individualised to be effective. No one diet fits all Some specific nutritional recommendations – carcinoid syndrome, increased intake of niacin

Australian Guide to Healthy Eating Include a variety of different foods Breads & cereals: 4-12 serves/day (½ wholegrain varieties) Vegetables: 5 serves/day Fruit: 2 serves/day Meat: 3-4 serves/week Fish: 2 serves/week Dairy: 3 serves/day ‘Extras’ – limit to maintain a healthy weight

What is a serve? Breads & cereals 2 slices of bread or 1 medium bread roll 1 cup cooked rice, pasta, noodles 1 1/3 cup of breakfast cereal ½ cup toasted muesli or 1 cup cooked porridge Vegetables ½ cup cooked vegetables ½ cup cooked dried beans, lentils 1 cup salad 1 small potato

What is a serve? Fruit: 1 medium piece of fruit (150g) e.g. apple, pear, banana 2 small pieces (150g) of fruit e.g. kiwi, manadarin 1 cup diced fruit, fruit salad 1 ½ tablespoons dried fruit ½ cup fruit juice Meat, meat alternatives: ½ mince, 2 eggs 2 slices roast meat, ½ chicken breast 2 eggs 1/3 cup lentils, chickpeas, split peas, kidney beans

What is a serve? Fish: 150gm oily fish e.g. salmon, tuna, trout, mackerel Canola oils, margarine, walnuts, walnut oil Soy based foods e.g. edamame, tofu, soy & linseed bread Green leafy vegetables Dairy: 250ml ‘lite’ or skim milk 200gm low fat yoghurt, custard 2 scoops low fat ice cream 2 slices (40gm) low fat cheese

Nutritional strategies for NETs Survey of NET patients in 1999, repeated 2005 showed similar results Carcinoid Nutrition Survey (Carcinoid Foundation 1999, 2005) n=97 62% female 38% male aged 26-81 years of age Signs and Symptoms with possible nutrition implications Fatigue & weakness 60% Diarrhoea 51% Gas & bloating 51% Flushing 45% Abdominal pain 33% Weight loss 21%

"Nutritional Concerns for the Carcinoid Patient" Presented by Monica E. Warner, M.S., R.D., C.D.N. Research Coordinator, Carcinoid Cancer Foundation, Inc., New York, New York Year 2000 with Year 2008 update

Nutritional strategies for NETs Important to seek medical advice to find out underlying cause of symptoms in the first instance Doctor may refer to a dietitian to help manage symptoms through individualised dietary advice Nutritional health, wellbeing is always the priority for nutrition therapy. Avoid unnecessary food restrictions Nutrition therapy is unlikely to resolve symptoms completely and is usually an adjunct to medical therapy e.g. diarrhoea, gas & bloating

Nutritional strategies for NETs Fatigue and weakness/weight loss Cause? low body weight, poor appetite/nausea resulting in poor food intake, poor dietary quality Small frequent meals High calorie, high fat, high protein meals if tolerated High calorie, high protein liquids often tolerated better than solids High calorie, high protein nutritional supplements (doctor, nurse, dietitian) No weight loss? Assess dietary quality against AGHE

Nutritional strategies for NETs Diarrhoea Cause? Increased secretion of serotonin from tumour, small bowel resection, chemotherapy, response to some medications Very individualised - everyone has eats different food, reacts differently to food, severity of diarrhoea, cause of diarrhoea Small frequent meals Reduce foods very high in fibre Reduce lactose intake (component of dairy foods) Lower fat meals Reduce intake of alcohol, spice, caffeinated drinks, other foods? Nutmeg – 3 teaspoons a day??

Nutritional strategies for NETs Gas and bloating/abdominal pain Very individualised Small frequent meals Reduction in gas forming foods e.g. cabbage, cauliflower, broccoli, bok choy (Chinese broccoli), onion, leaks other foods? Reduce fibre, spice, alcohol, high fat meals, caffeine Carbonated drinks

Nutritional strategies for NETs Flushing Symptom of ‘carcinoid syndrome’, occurs in only 10% of people with NETs Increased requirement for Niacin Increased requirement for protein 1-1.5gm/kg May be a role for limiting foods high in amines - (precursors for catecholamines e.g. adrenaline) Reduce large meals, alcohol, spices, other foods?

Eating more protein Recommended increase of 50-100% of recommended intake of protein foods Most people with good appetites eat this amount anyway 100gm steak = 20-25gm, 2 eggs = 7gm, 1 glass milk – 10gm Include protein foods at all meals and snacks Eat more protein = increase niacin intake

Multivitamins Only recommended for patients with one or more symptoms of ‘carcinoid syndrome’ – flushing, diarrhoea, weight loss, poor intake of food Supplements not needed if you are following a balanced and varied diet Recommended dose - multivitamin 2 x dose daily

Niacin Increased serotonin production increases need for niacin – 60% of tryptophan is used in serotonin production, usual is 1% Symptoms – ‘pellagra’ skin lesions, scaly skin, dermatitis dementia, diarrhoea, depression, death Criteria for Niacin supplementation: Elevated serotonin levels, flushing, weight loss, poor appetite/poor intake of food Increase protein intake (1-1.5g/kg) - meat, poultry, fish, wholegrain cereals, eggs, dairy 25-50mg daily x 2 doses (more can worsen symptoms)

Niacin supplementation Complex B vitamin (100mg niacin) – ½ - 1 tablet twice daily Multivitamin (18mg niacin) 1 tablet twice daily = 36mg Complex B vitamin (50mg niacin) ½ - 1 tablet twice daily

Foods high in amines Aged, fermented and spoiled protein foods Product of protein breakdown Levels increase with ‘age’ or mature Reducing the ‘load’ of amines in the diet may help with symptoms Not necessary to avoid all foods that contain amines Aged cheeses, smoked, salted or pickled fish or meat, prawns, some nuts, vegemite, alcoholic beverages, miso soup, soy sauce, chocolate (in large amounts), coffee (in large amounts), banana, avocado

Foods high in serotonin There is no need to avoid foods high in serotonin to control symptoms of carcinoid syndrome Foods high in serotonin DO NOT cause high levels of serotonin in the blood Butternuts, black walnuts, English walnut, pecans, Pineapple, banana, kiwifruit, tomatoes, plums (also high in amines) Avocado, olives, eggplant (also high in amines)

Thank you More information: kscarfe@nsccahs.health.nsw.gov.au Unicorn Foundation (Aus) http://www.unicornfoundation.org.au/ The Carcinoid Cancer Foundation (USA) http://www.carcinoid.org/ UK & Ireland Neuroendocrine Society (UK) http://www.ukinets.org.uk/