Some neuroendocrine tumours (NETs) produce too much of a hormone-like substance called serotonin. This is more common in NETs of the small bowel that have spread to the liver. It can cause a collection of symptoms called carcinoid syndrome.
Symptoms of carcinoid syndrome can include:
- the skin on your face and upper chest turning pink or purple (flushing)
- wheezing which is similar to asthma
- tiredness (fatigue).
Drugs called somatostatin analogues are used to treat carcinoid syndrome. The most common ones are octreotide and lanreotide. These drugs try to control the amount of hormones produced by your liver.
Your doctor or nurse may give you advice about managing the symptoms of carcinoid syndrome. This can include:
- avoiding things that trigger flushing on your face and chest, such as large meals, spicy foods or alcohol
- having less fibre in your diet to help control diarrhoea.
It may be helpful to keep a note of anything that triggers flushing. You can see a dietitian for advice on how changes to your diet can help.
Telotristat ethyl is a medicine that can help with diarrhoea caused by carcinoid syndrome. It is not always available on the NHS. However, your doctor may still be able to apply for it.
It can be a serious condition. But your doctors will take precautions to help prevent it happening. If you have certain procedures or surgery, you may be given an infusion of octreotide to try to prevent a crisis.
Sometimes, both serotonin and another substance the NET produces (called tachykinin) can affect the heart. This can cause carcinoid heart disease. The main symptoms are:
- swollen ankles.
This mostly occurs in patients with a small bowel NET. Your doctor will monitor you for this. But if you develop symptoms, contact the hospital.
Below is a sample of the sources used in our neuroendocrine tumours (NETs) information. If you would like more information about the sources we use, please contact us at email@example.com
Esmo clinical practice guidelines: endocrine and neuroendocrine cancers. Available from: www.esmo.org/guidelines/endocrine-and-neuroendocrine-cancers (accessed May 2021).
This information has been written, revised and edited by Macmillan Cancer Support’s Cancer Information Development team. It has been reviewed by expert medical and health professionals and people living with cancer. It has been approved by Senior Medical Editor, Dr Paul Ross, Consultant Medical Oncologist.
Our cancer information has been awarded the PIF TICK. Created by the Patient Information Forum, this quality mark shows we meet PIF’s 10 criteria for trustworthy health information
This information has been written, revised and edited by Macmillan Cancer Support’s Cancer Information Development team. It has been reviewed by expert medical and health professionals and people living with cancer. It has been approved by Chief Medical Editor, Professor Tim Iveson, Consultant Medical Oncologist.
Our cancer information has been awarded the PIF TICK. Created by the Patient Information Forum, this quality mark shows we meet PIF’s 10 criteria for trustworthy health information.
How we can help
Chat online anonymously to others who understand what you are going through. Our community is available 24/7 and has dedicated forums where you can get advice and ask our experts.