Supportive care for neuroendocrine cancer

Supportive care helps with the physical, practical, emotional and spiritual challenges of cancer. This important part of cancer care focuses on improving the quality of life of people with cancer and their loved ones, especially after treatment has ended.

Adjusting to life after treatment is different for everyone. Your recovery will depend on many different factors, such as where the cancer was in your body, the stage of the cancer, the organs and tissues removed during surgery, the type of treatment and side effects.

If you have been treated for neuroendocrine cancer, you may have the following concerns.

Self-esteem is how you feel about yourself. Body image is how you see your own body. They are often closely linked. Neuroendocrine cancer and its treatments can affect your self-esteem and body image. Often this is because cancer or cancer treatments change your body in different ways, such as:

• scars
• hair loss
• skin problems
• weight gain
• weight loss
• having an ostomy

Some of these changes can be temporary. Others can last for a long time or be permanent.

But treatment can affect your self-esteem or body image even if it doesn’t affect how you look. Other people may not be able to see changes to your body, but you may still worry about how they now see you. This may affect your self-esteem, making you feel angry or upset, afraid to go out or worried that others will reject you.

Find out more about coping with body image and self-esteem worries.

Carcinoid syndrome is a group of symptoms that occurs when a neuroendocrine tumour (NET) releases a large amount of hormones (such as serotonin) and other chemicals into the blood. Carcinoid syndrome may happen with any type of NET, but it most commonly occurs with NETs of the small intestine that have spread to the liver (liver metastases).

Somatostatin analogues are drugs that lower the number of hormones made and released by NETs. The main treatment to manage the symptoms of carcinoid syndrome is a type of somatostatin analogue called octreotide (Sandostatin). Octreotide is available in fast-acting and long-acting forms. It is given by injection.

You may be offered other drugs to manage specific symptoms of carcinoid syndrome. For example, telotristat ethyl (Xermelo) is used, along with a somatostatin analogue, to treat carcinoid syndrome diarrhea in people whose diarrhea is not controlled by somatostatin analogues alone. It helps reduce the amount of serotonin produced. Loperamide (Imodium) or cholestyramine can also be used to control diarrhea. Telotristat ethyl, loperamide and cholestyramine are taken orally (by mouth).

Taking pancreatic enzyme supplements with meals can also help with diarrhea, cramps and nutrient absorption issues. 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, some people may find it helpful to avoid or limit the following foods and drinks with amines:

• 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
• walnuts

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 need a colostomy or ileostomy after surgery to remove gastrointestinal (GI) or pancreatic neuroendocrine cancer. It depends on the type of surgery done to remove the tumour.

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.