Diet and NETs

Eating a balanced diet is important. But neuroendocrine tumours (NETs) and its treatment can cause diet problems. 

Talk to your dietitian, doctor or specialist nurse about any diet problems you have. They can give you medicines and tips to help you cope.

Common diet problems

There are many different types of NETs, and each type may affect your diet differently.

Diarrhoea

Diarrhoea means having more than 3 watery or liquid poos (stools) in a 24 hour period. This can be severe, especially if you have carcinoid syndrome. Carcinoid syndrome is a group of symptoms that happen when a NET makes large amounts of hormones. 

You lose a lot of fluid when you have diarrhoea. It is important to drink little and often and try to drink at least 2 or 3 litres a day. 

Although it is usually healthier to eat a diet high in fibre, this can make diarrhoea worse. Instead, try other types of food such as:

• white rice
• white pasta
• well cooked eggs
• white bread

Weight loss and loss of appetite

Losing weight is often associated with loss of appetite. But this is not the only cause. You may be eating normally but still losing weight. Your body may not be absorbing the fat, proteins and carbohydrates from the food you eat. Or it may be burning calories faster than normal. 

There are different things you can do to help you put on weight, such as:

• eat regular, smaller meals and snacks every 2 hours or so
• choose foods that contain proteins such as meat or meat alternatives (tofu and soya), eggs, beans and other pulses or legumes
• use full fat milk and butter
• drink nourishing drinks such as full fat milk drinks and smoothies

Your dietitian may suggest high energy supplement drinks to have between meals.

Feeling or being sick

To help with sickness, you can try:

• eating several small meals and snacks during the day instead of having 3 large meals
• eating light and bland foods such as plain toast and crackers
• avoiding greasy, fatty and salty foods

Difficulty absorbing fat (fat malabsorption)

Carcinoid syndrome trigger foods

Carcinoid syndrome is a group of symptoms that can happen when NETs make large amounts of hormones. The most common symptoms are flushing of the skin, diarrhoea and tummy (abdominal) pain.

For some people, certain foods and drinks can trigger the symptoms of carcinoid syndrome. Some of the common triggers are having a large meal and eating fatty or spicy foods. 

Foods and drinks that contain high levels of substances called amines can also trigger diarrhoea and flushing of the skin. These include:

• aged cheese
• alcohol and fermented drinks such as beer
• vinegar
• smoked and salted fish and meats such as sausages and corned beef
• yeast
• soybean products such as tofu and soy sauce

Alternative cancer diets

Some people try alternative diets to help with diet problems or even to try to cure the NET. But there are no alternative diets that have been proven to help with NETs. Unproven alternative diets may not be safe and may make things worse.