Diet and neuroendocrine cancer

Eating a balanced diet is important. A balanced diet means eating foods from all the food groups that your body needs. But for many people with neuroendocrine cancer, eating and drinking can be a struggle. 

Talk to your dietitian, doctor or specialist nurse about any diet problems you have. They can discuss ways to support you with eating and drinking. And they can give you tips about things you can do to help yourself.

Common diet problems for people with neuroendocrine cancer

There are many different types of neuroendocrine cancer. Each type may affect your diet differently. Below are some common problems for people with neuroendocrine cancer:

Diarrhoea

Diarrhoea can be severe for some people with neuroendocrine cancer.

Diarrhoea means you have changes to:

• the consistency of your poo (stool) - for example it is more watery than usual
• how often you are going - for example over 24 hours you might have 2 or more loose bowel movements than usual
• how much you are passing (the volume) when you have your bowels open

There are different causes of diarrhoea including:

• abnormal production of hormones
• surgery to the bowel or pancreas
• treatment side effects - for example somatostatin analogues
• foods that trigger carcinoid syndrome

It is important that your healthcare team try and understand the cause of bowel problems. And also assess whether it is a short or long term problem. This helps them find the best treatments. And it helps them advise you about any changes you can make to help you manage. 

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.  

Try to eat small meals and snacks regularly.

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.

Pancreatic enzyme replacement therapy (PERT)

Digestive enzymes help your body to break down and absorb fats and proteins. You might need to take enzyme supplements if:

•  your pancreas is not working properly due to the cancer
• you've had surgery to remove all or part of your pancreas 

There are several different brands of enzyme supplements available. The most common is Creon. You usually take the supplements with main meals, snacks or with a milky drink.

Carcinoid syndrome trigger foods

Carcinoid syndrome is a group of symptoms that can happen when neuroendocrine tumours (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. 

Your specialist nurse and doctor will talk to you about your diet. You might find it helpful to keep a record of what you are eating, and avoid certain foods if you think they make symptoms worse.

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.

Further information

Neuroendocrine Cancer UK have a booklet about nutrition and neuroendocrine cancer. This has detailed information about diet problems and neuroendocrine cancer.

You can also read about some specific diet problems linked to the following types of NET:

• insulinomas
• gastrinomas
• gucagonomas
• vIPomas
• somatostatinomas