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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 dietitian.

Heart disease

Carcinoid syndrome can make the valves around your heart get thicker. So they aren't able to work as well as they should. You may have regular heart tests (echocardiograms) to check your heart valves.

Carcinoid crisis

This is very rare. You have severe flushing, shortness of breath, your blood pressure drops and you may get confused. It can happen for no obvious reason. Or in some people, an anaesthetic or treatment such as surgery or chemotherapy can set it off. Before treatment, you may have the drug octreotide through a drip to try to prevent carcinoid crisis.

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
  • Skin flushing
  • A faster heart rate
  • Shortness of breath
 

Treatment for carcinoid syndrome

If you have carcinoid syndrome, treatment for your carcinoid (neuroendocrine tumour) will help to reduce and control it. 

Read more about treating carcinoid

You may also have treatments to control particular symptoms. For example, you may have tablets to help control diarrhoea. 

 

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. Your doctor may advise you to take a vitamin supplement. You can speak to a dietitian about your diet.

Read more about coping with diarrhoea.

 

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 recommend that people who have a carcinoid tumour in either the small bowel, appendix or first part of the large bowel, or have carcinoid syndrome at diagnosis will have a heart test called an echocardiogram. You may 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 skin 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 treatment such as surgery 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: 30 June 2016