Nutrition for People with Neuroendocrine (Carcinoid) Tumors

Author: Marisa Healy, BSN, RN
Content Contributor: Doris Piccinin, MS, RDN, CSO, CDES
Last Reviewed: August 18, 2022

What should I eat with Neuroendocrine (Carcinoid) Tumor?

According to the Neuroendocrine Tumor (NET) Research Foundation, 58% of patients have to change their normal diet to improve symptoms of their disease. Because each person's experience with NET is different, the nutritional recommendations vary.

The most common nutrition-related symptoms related to certain foods are:

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

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

How do I decide when and if I need to see a dietitian?

The most common reasons to seek the advice of 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 depending on their disease process. Because of this, each patient needs nutrition information based on their unique issues. Listed below is information about possible side effects and ways that nutrition can improve these symptoms. For more information specific to your situation, please request a consult with a registered dietitian nutritionist.

Carcinoid Syndrome and 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 once daily to track which food causes your symptoms.

High Amine Foods

(Avoid with flushing)

Moderate Amine Foods

(Caution)

Low Amine Foods

(Safe to eat)

Aged cheeses (extra sharp)

Caffeine, cola

Non-aged cheeses (low fat cottage cheese, mozzarella, ricotta, cream cheese)

Low-fat yogurt or kefir

Low-fat lactose-free milk if diarrhea.

Alcohol-all types

Dark or milk chocolate, cocoa powder

Smoked, salted, pickled fish and meats (lox, canned meats such as ham, spam, corn beef hash, etc.)

Peanuts, brazil nuts, coconut

Yeast extracts (nutritional yeast)

Avocado, banana, raspberries

Hydrolyzed proteins

Soy foods, tempeh, fava beans

Fermented foods (tofu, sauerkraut, miso, shrimp paste, fish or soy sauce)

Certain vegetarian meat substitutes (if they contain hydrolyzed proteins)

Table Adapted from Oncology Nutrition Dietetic Practice Group

Preventing Weight Loss

Excess diarrhea, gas, bloating, and loss of appetite can lead to weight loss if you have neuroendocrine cancer. Your goal should be to meet calorie and protein needs. Your health care team will give you specific recommendations, but a good start to meeting needs can be found below. If you have kidney disease you may need to limit protein.

  • Build a food plan with protein-containing foods.
    • 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!
    • Complete proteins such as egg, dairy, fish, poultry, meat, and soy foods 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, beans, lentils, and grain combinations can meet protein needs.
  • Layer on calories with healthy fats and starches.
    • If you select 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, 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 the neuroendocrine cancer, gas, bloating and diarrhea may be common. 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 vitamin 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 for a dietician. They will be able to help educate and guide you through healthy nutrition choices.

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