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

2. 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

4. 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

5. 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

6. 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

7. 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

8. 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

9. 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

10. 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 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%

11. "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

12. 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

13. 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

14. 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??

15. 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

16. 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?

17. Eating more protein
Recommended increase of % 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

18. 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

19. 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)

20. 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

21. 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

22. 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)

23. Thank you More information: kscarfe@nsccahs.health.nsw.gov.au
Unicorn Foundation (Aus)
The Carcinoid Cancer Foundation (USA)
UK & Ireland Neuroendocrine Society (UK)