Nutrition for People with Neuroendocrine (Carcinoid) Tumors

What should I eat if I have a Neuroendocrine (Carcinoid) Tumor?

According to the Neuroendocrine Tumor (NET) Research Foundation, 58 out of 100 patients with this type of cancer have to change their normal diet to help with symptoms of their disease. Each person's experience with NET is different, so the nutritional needs vary. 

The most common nutrition-related symptoms are: 

• Loss of appetite (not feeling hungry).
• Digestive issues, such as diarrhea.
• Stomach pain or discomfort.
• Flushing (redness) of the face.

A registered dietitian nutritionist (RDN) can help you make changes to your diet to help with these symptoms. You may need a referral from your provider.

When should I see a dietitian?

The most common reasons to see a dietitian are: 

• Weight loss, especially if you are eating a healthy and balanced diet.
• Loss of appetite.
• Food allergies.
• Digestive issues or flushing with some types of foods.

NET patients have diet issues based on their disease process. Each patient needs personalized nutrition information based on their own issues. Listed below is information about possible side effects and ways that nutrition can help with these symptoms. To find out more information about your situation, please ask your provider about seeing a registered dietitian nutritionist. 

Flushing

Foods high in amines may cause flushing. Flushing is a redness of the face that may be linked with severe diarrhea. Amines are mostly found in fermented foods or in heavily processed meats. Each person will react differently. If severe flushing doesn’t go away, use a diet diary to track your symptoms. Start with the low amine food list and try one food from the moderate list one time a day to track which food causes your symptoms. 

Weight Loss

Excess diarrhea, gas, bloating, and loss of appetite can lead to weight loss if you have NET. Your goal should be to meet your calorie and protein needs. If you have kidney disease you may need to limit protein, and you can talk with your healthcare team about this. Your healthcare team will give you recommendations based on your needs, but some things to keep in mind:

• Build a food plan with foods high in protein.
  • Carcinoid syndrome with diarrhea can lead to loss of protein. If you have healthy kidneys, use the following Oncolink guide to add protein to your diet.
  • Try to meet protein needs from diet FIRST (not supplements)!
  • Eat complete proteins like egg, dairy, fish, poultry, meat, and soy foods. These contain all essential amino acids. 
  • Vegan sources of complete protein contain some specialty formulated pea proteins and hemp hearts. If you have excess diarrhea or cannot tolerate these types of protein, you may need to switch to a whey or egg white protein powder.
  • If diarrhea is not an issue, combining beans, lentils, and grains can meet protein needs. 
• Layer on calories with healthy fats and starches.
  • If you eat protein without added calories from fats and starches, your body will break down protein. 
  • Choose higher fat versions of lactose-free dairy, yogurts, ice cream or puddings.
  • Add gravies and lactose-free cream sauces to pastas, rice, meats, and poultry.
  • Use avocado, smooth (not crunchy) nut butters, or full fat coconut milk in shakes or smoothies.

Digestive Issues

Depending on the site of your NET, you may have gas, bloating, and diarrhea. You may need to follow a low fiber diet. Your healthcare team may also check if you have exocrine pancreatic insufficiency (EPI). Please refer to the use of pancreatic enzymes handout for more information on this topic. Even if you do not have NET of the pancreas, NET of the small bowel or surgeries involving the stomach and small intestines can cause digestion issues. Although digestive enzymes are made, they are not getting to where they need to at the right time. This can lead to excessive gas, bloating, diarrhea, and weight loss. If diarrhea persists, long term malabsorption (your body can’t absorb nutrients) can lead to low levels of vitamins and minerals. These can be addressed on a case-by-case basis with a registered dietitian. 

If you are having any issues related to your diet, ask your provider for a referral to see a dietician. They will be able to help educate and guide you through healthy nutritional choices.