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Coping with carcinoid syndrome

It isn’t easy to cope with carcinoid syndrome. You may have ongoing symptoms and treatment that other people don’t understand. Give yourself time. Adjusting to major changes in your life takes a while. You need to find the best way for you.

As well as the treatments your doctor recommends, you can do other things to help with symptoms of carcinoid syndrome

Skin flushing

You may find it helps to keep a record of your flushes to see if anything in particular makes them worse. For example, some people find that stress can trigger them. Other common triggers for flushing include eating large meals or drinking alcohol.

Diarrhoea

You lose a lot of fluid when you have diarrhoea. It is important to replace the fluid to prevent dehydration. Drink little and often and try to drink at least 2 to 3 litres a day. A diet high in fibre can make diarrhoea worse. So can fatty, greasy foods. You may be referred to a dietician.

Help and support

Your hospital can support you – ask your nurse or doctor about the help that is available. Your nurse will be able to tell you about support groups in your area. Or you could contact one of the carcinoid organisations.
 

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What carcinoid syndrome is

Carcinoid syndrome is what doctors call the collection of symptoms you get when carcinoid tumours release hormones into the bloodstream. Carcinoids can produce hormones at any stage. But it is more common if your carcinoid has spread to the liver. The symptoms include

  • Diarrhoea
  • Flushing
  • A faster heart rate
  • Shortness of breath
 

Treatment for carcinoid syndrome

If you have carcinoid syndrome, treatment for your carcinoid will help to reduce and control it. There is brief information below about this. And you can find out more in our section about treating carcinoid. You may also have treatments to control particular symptoms. For example, you may have tablets to help control diarrhoea. 

The main treatment for carcinoid tumour is surgery. If surgery isn’t possible, you may have one of these treatments

Somatostatin analogues

There are several different somatostatin analogues – including octreotide, Sandostatin and lanreotide. They reduce the amount of hormones in your body that cause carcinoid syndrome. So they control the symptoms too.

You have this type of drug as an injection just under the skin (subcutaneously). Usually you have this injection once a month, given by a district nurse. Some people need to have more frequent injections, up to 3 times a day. You can learn to give the injections yourself. You can find out more about somatostatin analogues in our treating carcinoid section.

Chemotherapy

Chemotherapy uses anti cancer (cytotoxic) drugs to destroy cancer cells. They work by disrupting the growth of cancer cells. You usually have a combination of chemotherapy drugs. You can find out more about chemotherapy in our treating carcinoid section.

Hepatic artery embolisation

Sometimes if you have a large spot of carcinoid on your liver, you can have embolisation treatment. This treatment stops the blood supply to the tumour, making the carcinoid cells die. Starving the tumour of a blood supply can stop it releasing hormones into the bloodstream. This reduces the symptoms of carcinoid syndrome and can shrink the tumour. You can find out more about hepatic artery embolisation in our treating carcinoid section.

Radiofrequency ablation

Radiofrequency ablation is only for some small tumours in the liver. Your doctor guides a special heated needle or probe into the tumour. The heat from the needle or probe destroys the carcinoid cells. So it cuts down the amount of hormones released by the carcinoid. You can find out more about radiofrequency ablation in the treating carcinoid section.

 

Helping yourself

As well as the treatments your doctor recommends, you can do other things to help with symptoms of carcinoid syndrome, such as

Skin flushing

You may find it helps to keep a record of your flushes to see if anything in particular makes them worse. For example, some people find that stress can trigger them. Other common triggers for flushing include eating large meals or drinking alcohol.

Diarrhoea

You lose a lot of fluid when you have diarrhoea. It is important to replace the fluid to prevent dehydration. Drink little and often and try to drink at least 2 to 3 litres a day. Although it is usually healthier to eat a diet high in fibre, this can make diarrhoea worse. Fatty, greasy foods can also make it worse, so it might help to avoid these. If the diarrhoea goes on for a long time , it may lower the levels of vitamins in your body. In particular the level of vitamin B3 (niacin) may drop which can cause a condition called pellagra. You may be advised to take a vitamin supplement. 

You can find out more about tips on coping with diarrhoea in our section about coping physically with cancer. You can ask your doctor or nurse if you can speak to a dietician about your diet.

 

Complications of carcinoid syndrome

Rarely, people with carcinoid syndrome may develop other complications such as heart disease or carcinoid crisis. Your doctor will regularly check for these.

Heart disease

Carcinoid syndrome can make the valves around your heart get thicker. So they aren’t able to work as they should. You may feel breathless and more tired than usual. Doctors now recommend that people who have a carcinoid in either the small bowel, the appendix, the first part of the large bowel or have carcinoid syndrome at diagnosis will have a heart test called an echocardiogram. You will then continue to have checks every few years to check your heart valves. If you have any changes in your heart, you will see a doctor who specialises in heart problems. You may need to take tablets to help. Some people may need to have surgery to the heart valves.

Carcinoid crisis

Carcinoid crisis is very rare. You have severe flushing, get breathless, your blood pressure drops and you may get confused. A carcinoid crisis can happen for no obvious reason. In some people, an anaesthetic or chemotherapy can set it off. Before you have any treatment you may need to have octreotide through a drip to prevent carcinoid crisis.

 

Coping with carcinoid syndrome

It isn’t easy to cope with carcinoid syndrome. People often think they have an idea of what having cancer is like, but carcinoid is different from other tumours.

Carcinoid is often slow growing. You may have ongoing symptoms and treatment that other people don’t understand. You may find that you have to explain to people what it all means.

It is important to give yourself time. Adjusting to major changes in your life is never easy, and can take a while. There isn’t a right or wrong way to cope with carcinoid syndrome. You need to find the best way for you. It can be helpful to share your feelings with someone – even if you aren’t sure how you feel. Talking about it may help you to find out more about your own feelings.

Your hospital can support you too – ask your nurse or doctor about the help that is available. Your nurse will be able to tell you about support groups in your area, where you can discuss your feelings and fears with other people who have more idea about what you are going through. When you have a rare cancer like carcinoid, it may not be possible to meet someone else who has it. But it can still be helpful to talk to other people who have been through a cancer diagnosis. You could use Cancer Chat, our online forum for people with cancer. You may be able to make contact with other people who have carcinoid.

You can have a look at our carcinoid tumour organisations page for organisations that can help you and give you further information.

You can also contact our cancer information nurses. They would be happy to help.

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Updated: 12 February 2014