Carcinoid syndrome and carcinoid tumours

Carcinoid syndrome and carcinoid tumours | NHS inform Home Illnesses and conditions Symptoms and self-help Tests and treatments Healthy living Care, support and rights Scotlands Service Directory 0 Home Illnesses and conditions Cancer Cancer types in adults Carcinoid syndrome and carcinoid tumours Carcinoid syndrome and carcinoid tumours A carcinoid tumour is a rare cancer of the neuroendocrine system  the body system that produces hormones. The tumourusually growsin the bowels or appendix, but it can also be found in the stomach, pancreas, lung, breast, kidney, ovaries or testicles. It tends to grow very slowly. Carcinoid syndrome is the collection of symptoms some people get when a carcinoid tumour  usually one that has spread to the liver  releases hormones such as serotonin into the bloodstream. Signs and symptoms In the early stages of having a carcinoid tumour, you may not have any symptoms. You may also not have symptoms if the tumour is just in your digestive system, as any hormones it produces will be broken down by your liver. If symptomsdo develop, they tend to be fairly general and can be easily mistaken for signs of other illnesses. Symptoms may result from both the tumour itself and from any hormones it releases into the bloodstream. Symptoms caused by the tumour Symptoms will dependon where in the body the tumour develops: abowel carcinoid tumour may causetummy pain, a blocked bowel ( diarrhoea , constipation , feeling or being sick) andbleeding from the bottom (rectal bleeding) alung carcinoid tumour may cause a cough , which may make you cough up blood, and cause wheezing, breathlessness , chest pain and tiredness astomach carcinoid tumour may cause pain, weight loss, tiredness and weakness Some tumours may not cause any symptoms and are discovered by chance. For example,an appendix carcinoid tumour may only befound when the appendix is being removed for another reason. Symptoms caused by the hormones (carcinoid syndrome) Typical symptoms of carcinoid syndrome include: diarrhoea,tummy pain and loss of appetite flushingof the skin, particularly the face fast heart rate breathlessness and wheezing These symptoms may come on unexpectedly, as the hormones can be produced by the tumour at any time. Some people may also developcarcinoid heart disease, wherethe heart valves thicken andstop working properly. There is also a risk of developing a rare but serious reaction calleda carcinoid crisis, which involves severe flushing, breathlessness and a drop in blood pressure. What causes carcinoid tumours? Itsnotknown exactlywhy carcinoid tumours develop, but its thought that mostoccur by chance. Your chances of developing a carcinoid tumour may be increased if you have: a rare family syndrome called multiple endocrine neoplasia type 1 (MEN1) parents or siblings with a carcinoid tumour parents with squamous cell skin cancer , non-Hodgkins lymphoma , or cancer of the brain, breast, liver, womb, bladder or kidney conditions calledneurofibromatosisor tuberous sclerosis Diagnosing carcinoid tumours Acarcinoid tumour may be found incidentally  for example, as a surgeon is removing an appendix. In this case, the tumour will often be caught early and removed along with the appendix, causing no further problems. Otherwise, people usually speak to their GP after they have developed symptoms. A carcinoid tumour may be diagnosed after carrying out a series of scans and tests, which may include measuring theamount ofserotoninin your urine and having an endoscopy . Treating carcinoid tumours and carcinoid syndrome If the tumour is caught early, it may be possible to completely remove it and cure the cancer altogether. Otherwise, surgeons will remove as much of the tumour as possible (debulking). You can read more about thesurgery for carcinoid tumourson theCancer Research UK website. If the tumour cannot be removed, but its not growing or causing symptoms, you may not need treatment straight away  it might just be carefully monitored. If its causing symptoms, you may be offered one of thefollowing treatments: injections of medicines called somatostatin analogues, such as octreotide and lanreotide, which can slow down the growth of the tumour radiotherapy to kill some of the cancer cells a procedure to block the blood supply tothetumour (for tumours in the liver), known ashepatic artery embolisation a procedure that uses a heated probe to kill cancer cells (for tumours in the liver), calledradiofrequency ablation chemotherapy to shrink the tumour and control your symptoms Symptoms of carcinoid syndrome canbe treated with injections of octreotide and lanreotide.You may also be givenmedication to widen your airways (to relieve wheezing and breathlessness) and anti-diarrhoea medication. What can I do to help myself? There are things you can do yourself to manage some of the symptoms of carcinoid syndrome. Generally, you should avoid triggers of flushing, such as: alcohol large meals spicy foods foods containing the substance tyramine, such as aged cheese and salted or pickled meats stress Some medications, such as selective serotonin reuptake inhibitor (SSRI) antidepressants , may make symptoms worse by further increasing your levels of serotonin  but never stop taking medication without seeking medical advice. If you have diarrhoea, its important to keep drinking little and often to avoid dehydration . Outlook If the whole tumour can be removed, this may cure the cancer and symptoms altogether. But even if surgeons cannot remove the entire tumour, it usually grows slowly and can be controlled with medication. Overall,people with carcinoid tumourshave a good life expectancy compared to many other cancers. Many people remain relatively well and lead active lives, with only occasional symptoms. Butas the tumourgrows or spreads, it will produce more and more hormones, and it may eventually be difficult to completely control symptoms with medication. You may need further surgery or other treatments. Unfortunately, life expectancy is not as good for cancer that has spread to other parts of your body, because it wont usually be possible to remove all of it. However, treatment can still control your symptoms and slow down the spread of cancer. Information about you If you have carcinoid syndrome, your clinical team will pass information about you on to the National Congenital Anomaly and Rare Diseases Registration Service (NCARDRS). This helps scientists look for better ways to prevent and treat this condition. You can opt out of the register at any time. Find out more about the register Source: NHS 24 - Opens in new browser window Last updated: 13 November 2023 How can we improve this page? 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