Medicines for Carcinoid syndrome

What it is

Carcinoid syndrome is a collection of symptoms caused by certain neuroendocrine tumours (slow-growing tumours that arise from hormone-producing cells, often in the digestive system or lungs) releasing hormones and other chemicals into the bloodstream. The classic symptoms include episodes of facial flushing (a warm, red flushing of the skin), diarrhoea, and sometimes wheezing, tummy cramps, and a fast heartbeat; over time, some people can develop effects on the heart valves. The syndrome typically occurs when a neuroendocrine tumour has spread (for example to the liver), allowing the chemicals it produces to reach the general circulation. These tumours are often slow-growing, and people can live with them for a long time. Because the symptoms can be vague and mistaken for common conditions (such as menopause, allergies or irritable bowel), diagnosis can be delayed; it is confirmed with blood and urine tests measuring the chemicals, and imaging to find the tumour.

How it is treated

Treatment addresses both the tumour and the symptoms. Where possible, the tumour is treated — for example with surgery to remove it, or treatments to reduce or control tumour tissue (including in the liver) — which can improve symptoms and outlook. To control the syndrome itself, specific medicines (such as somatostatin analogues) reduce the release of the hormones and relieve flushing and diarrhoea, and other treatments manage particular symptoms. Because these tumours are often slow-growing, treatment is frequently about long-term control rather than cure, and many people do well over years. Monitoring watches the tumour and any effects on the heart. Avoiding certain triggers of flushing (such as some foods, alcohol and stress) can help. Care is coordinated by specialist neuroendocrine tumour teams. The message is that, although complex, carcinoid syndrome and its underlying tumours are treatable and often manageable over the long term.