“[This is] quite a difficult subject to talk about – because what works for one person might not work for another – we’re all very individual…”
Opinions expressed in the videos are purely individual, personal opinions of the patient, and by no means constitute treatment advice or guidance. Every patient should follow instructions from their treating physician as well as make their own informed choices.
The dietary advice that qualified health professionals who specialise in NETs give will vary depending upon a person’s symptoms, diagnosis, treatment (including previous treatment) and any other medical conditions.
If you have been given specific dietary advice by a qualified healthcare professional (such as a dietician, specialist nurse, or doctor) then follow that advice as it will be tailored to you. You can always discuss information on this page further where it is relevant.
Seek advice from a qualified healthcare professional specialising in NETs if you are losing weight or are severely restricting your diet.
If you do not have symptoms and are maintaining your weight then follow healthy eating advice for the general population as shown in the example opposite.
Source: Public Health England in association with the Welsh Government, Food Standards Scotland and the Food Standards Agency in Northern Ireland
This general advice does not suit everyone, If you are experiencing specific symptoms or losing weight then the following advice might be helpful. Discuss your symptoms with your NET team.
Diarrhoea is a symptom that often occurs in association with several types of NETs either because of the tumours or the effects of their treatment.
There are different causes of diarrhoea that need to be established and then your NET team can help to manage.
It is important to speak to your doctor or specialist nurse about any diarrhoea you experience. Chronic diarrhoea can cause dehydration and weight loss. Always ask them before you take any medications for diarrhoea since these may interact with some NET treatments.
The aim is to keep hydrated and avoid any fluids that might worsen diarrhoea.
The aim is to slow down how fast foods pass through your bowel.
The aim is to avoid foods that stimulate the bowel or have a laxative effect.
The following should be avoided:
“I don’t eat meat anymore, so I am vegetarian, and drink very less alcohol – food is more important for me than before.”
Opinions expressed in the videos are purely individual, personal opinions of the patient, and by no means constitute treatment advice or guidance. Every patient should follow instructions from their treating physician as well as make their own informed choices.
“I decided I would cut out alcohol very early on… it’s one of the things NET patients are told to avoid.”
Opinions expressed in the videos are purely individual, personal opinions of the patient, and by no means constitute treatment advice or guidance. Every patient should follow instructions from their treating physician as well as make their own informed choices.
“Trial and error – you’ll find out what upsets you doesn’t upset anybody else – a lot of other patients can have lots of chocolate, I can’t…”
Opinions expressed in the videos are purely individual, personal opinions of the patient, and by no means constitute treatment advice or guidance. Every patient should follow instructions from their treating physician as well as make their own informed choices.
As someone living with NETs, you may lose your appetite if you are feeling unwell due to various symptoms and treatment side effects. This can also lead to weight loss.
Although you may not feel like eating, remember that getting good nutrition and avoiding losing large amounts of weight are an important part of your treatment. Eating well can also help you to cope better physically and emotionally with the effects of NETs cancer and cancer treatment.
Ask your doctor for advice about ways to relieve other gastrointestinal symptoms you may have, such as nausea, vomiting, constipation or stomach pain.
Most of us get the vitamins and minerals we need from our diet, including from foods that have been fortified with specific vitamins and minerals. However, some people are at a higher risk of certain deficiencies due to medications, treatments, surgeries, or if experiencing diarrhoea or carcinoid syndrome.
Speak to a member of your NET team about whether or not you should be on any specific vitamin or mineral supplements.
Vitamins A, D, E, and K are fat soluble vitamins, meaning that they are generally absorbed with fat via the digestive system into the bloodstream.
If you are unable to absorb fat normally (which is usually seen in the form of steatorrhea) you are at a higher risk of deficiencies in fat soluble vitamins and may require supplementation.
Vitamin D is also made in the body with sunlight. If you do not have much exposure to the sun, or you experience steatorrhea you might be at an increased risk of vitamin D deficiency. Vitamin D levels can be checked by a blood test. Many countries recommend supplementing vitamin D. Contact your doctor or specialist nurse to discuss whether or not you need to take a vitamin D supplement.
If you have carcinoid syndrome you are at higher risk of niacin deficiency. This is because the amino acid tryptophan, which is normally used to produce niacin in the body, is used up to produce serotonin instead (a hormone that produces carcinoid syndrome symptoms).
Increasing your intake of tryptophan by ensuring you eat a good source of protein with each meal can help.
Good sources of protein include beans and pulses, soy products, nuts, seeds, eggs, milk, cheese, yoghurt, meat, fish, and poultry.
Your NET team can also discuss with you whether you need to take a niacin supplement.
Please talk to your NET care team about any specific concerns you may have about diet and nutrition.
Probiotics include supplements, foods and drinks that contain live bacteria and yeasts that are good for your gastrointestinal (digestive) system.
Some people living with NETs may find these helpful to take, especially if you have suffered with diarrhoea for a long time, or if you have taken (or are still on) antibiotics. Some people who experience bloating, wind (flatulence) or constipation have found probiotics helpful.
You can find probiotic supplements available for sale in most supermarkets and include capsules, yoghurts, yoghurt drinks and kefir that contain the ‘good’ bacteria lactobacillus or bifidobacterium.
Please talk to your NET care team about any specific concerns you may have about diet and nutrition.
Patient support groups for NETs can often provide social and emotional support.
Learn about the different types of NETs, symptoms of NETs, their diagnosis and treatment.
View a list of specialist NET clinics and hospital units in Europe.