Supportive care for neuroendocrine tumours (NETs)

Supportive care helps people meet the physical, practical, emotional and spiritual challenges of neuroendocrine tumours (NETs). It is an important part of cancer care. There are programs and services available to help meet the needs and improve the quality of life of people living with cancer and their loved ones, especially after treatment has ended.

Recovering from NETs and adjusting to life after treatment is different for each person, depending on where the cancer is in your body, the type of treatment and many other factors. The end of cancer treatment may bring mixed emotions. Even though treatment has ended, there may be other issues to deal with, such as coping with long-term side effects. A person who has been treated for NETs may have the following concerns.

Carcinoid syndrome is a group of symptoms caused by gastrointestinal (GI) or lung NETs releasing large amounts of serotonin and other substances into the blood. Only about 10% of people with a GI or lung NET will develop carcinoid syndrome. It usually happens with NETs of the small intestine or appendix that have spread to the liver (liver metastases). Most people with carcinoid syndrome will have flushing of the skin and diarrhea. Other symptoms include wheezing and difficulty breathing, a fast or irregular heartbeat, low blood pressure and heart damage.

The main treatment to manage the symptoms of carcinoid syndrome is octreotide (Sandostatin). It is a drug called a somatostatin analogue that lowers the amount of hormones and other substances made and released by the NET. Octreotide is available in fast-acting and long-acting forms and given by injection.

Additional drugs may be used to manage specific symptoms. For example, loperamide (Imodium) or cholestyramine can be used to control diarrhea. Find out more about managing diarrhea.

Eating certain foods that contain high levels of amines can trigger the symptoms of carcinoid syndrome. Amines, such as tyramine and histamine, are substances found naturally in foods as they ripen or ferment. Along with getting octreotide injections, it can also be helpful to avoid or limit the following foods and drinks with amines that may make symptoms worse:

• aged cheeses, such as blue cheese
• alcohol, especially wine
• cured, smoked or processed meats, such as sausage
• smoked or pickled fish
• tofu and soy sauce
• sauerkraut
• chocolate
• yeast extracts and brewer’s yeast
• avocados
• bananas

Other things that may trigger flushing and other symptoms of carcinoid syndrome include:

• some drugs for allergies, cold and flu, and depression that contain epinephrine (adrenaline)
• eating large meals
• stress, anger or embarrassment
• vigorous exercise

Talk to your doctor about what to avoid or limit to help control the symptoms of carcinoid syndrome.

A colostomy is a surgical procedure that creates an artificial opening (stoma) from the colon to the outside of the body through the abdominal wall. An ileostomy creates a stoma from the last part of the small intestine (ileum) to the outside of the body through the abdominal wall. A colostomy or ileostomy can be temporary or permanent.

Some people with GI or pancreatic NETs may need a colostomy or ileostomy depending on the type of surgery done to remove the tumour. It can be frightening for those who do need it. But you can adapt to having a colostomy or ileostomy and live normally.

It takes time and patience to learn how to live with a colostomy or ileostomy and care for the stoma. Specially trained healthcare professionals called enterostomal therapists will teach you what you need to know. Local or national ostomy groups and associations can also give you support and information.

Find out more about a colostomy and ileostomy.

To make the decisions that are right for you, ask your healthcare team questions about supportive care.