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

You might lose weight because you don't feel like eating. Or 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. 

People close to you might keep encouraging you to eat, and comment on your weight loss. This can be difficult to cope with if you don't feel like eating. Tell the people around you how you feel.

Your healthcare team should refer you to a dietician. They can tell you about 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

• eat from a smaller side plate so the portion size looks less overwhelming

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

Feeling or being sick

Talk to your healthcare team if you are feeling or being sick. They might prescribe anti sickness drugs to help. 

To help with sickness, you can also 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)

You might pass pale, offensive smelling stools (poo) that float. This is called steatorrhea (fatty poo). It is excess fat in your poo.

You have this because of problems either digesting or absorbing fat. This might be because of surgery to remove your neuroendocrine cancer, or because of the treatment you are having. 

Symptoms of steatorrhea include having poo (stool) that:

• floats

• is difficult to flush

• has a bad smell

• leaves an oily film in the toilet

Talk to your doctor or specialist nurse if you have this. They can give you medicines called pancreatic enzymes that make it easier for you to absorb fat.

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 to try to cure or control their cancer. But there are no alternative diets that have been proven to help with neuroendocrine cancer. Unproven alternative diets may not be safe and may make things worse.

This page is due for review. We will update this as soon as possible.