Neuroendocrine Cancer

In this page I’m going to give some information about Neuroendocrine Cancer. I will provide links so you can read further. This is a cancer that many people know nothing about. It affects my daily life tremendously and those around me due to the symptoms and now life limiting circumstances I live in.

However, despite feeling pretty rubbish on a lot of days, having very little energy and having to make major adjustments I’m still hear to tell the tale of net cancer – my travels, fun on our harley-davidson®, writing, photography, etc. I won’t get any better, and what I have is incurable so for now I’m making the most of what I’ve got. And enjoying it. I’m ever thankful to the wonderful staff at the NHS for their tireless putting up with me. Wonderful nurses coming in to the house giving injections, changing my dressing, servicing my gastostomy tube, etc.

Let’s get on with Net Cancer

What is a neuroendocrine tumour?

Neuroendocrine tumours (NETs) are a very diverse group of tumours that originate from specialised hormone cells in many different organs including the bowel, pancreas and lung. The small bowel is the most common site affected and sometimes these tumours are called ‘Carcinoids’.

How do NETs Present

NETs can present in a whole variety of different ways and often individuals have had symptoms for many years before the diagnosis is finally made. NETs arising in the bowel most commonly present with tummy pain, and occasionally these tumours can cause an actual obstruction or blockage in the bowel. Pain can occur if the tumours have spread to other parts of the body, such as the bones or the liver. NETs can produced a wide variety of different hormones and these can also cause specific symptoms and problems. Carcinoid syndrome can result from primary bowel tumours that have spread to liver or the lungs and NETs arising in the pancreas can produce a wide variety of different hormones.


Carcinoid syndrome is a group of symptoms that can occur in patients with carcinoid tumours. Not all patients with carcinoid tumours will have carcinoid syndrome. The syndrome occurs when carcinoid tumours overproduce hormones such as serotonin that normally circulate throughout your body.

Common symptoms include flushing, diarrhoea, heart valvular lesions, telangiectasia, wheezing, cyanosis and pellagra.


Carcinoid tumours often do not produce noticeable symptoms until they spread to the liver. That’s because most of the blood circulation from the gastrointestinal tract must pass through the liver before it reaches the rest of the body. The liver has strong enzymes that break down and neutralize most of the excess serotonin and other substances produced by the carcinoid tumours, preventing them from reaching tissues where they can cause symptoms. When carcinoid tumours spread to the liver, the substances they overproduce can more easily reach your bloodstream, and reach tissues where they can cause symptoms.



Over 90% of people with carcinoid syndrome experience flushing. Flushing resembles an intense blush, a deep red or purple hue that appears suddenly on the face or neck—although the flush may appear on the upper back or legs as well. The flush can be triggered by emotions, by eating, or by drinking alcohol or hot liquids. When it occurs, you may feel warm or unpleasant sensations in the affected areas, and be aware of having a rapid heartbeat. The flush is caused by dilation of the blood vessels in the affected area of skin. It can last from a few minutes to hours, and in some cases may even be constant. The stage of carcinoid syndrome you are in can determine how long flushing lasts. In more severe cases, facial skin sometimes thickens and discolors. Flushing in carcinoid syndrome is more likely to be “dry” flushing (flushing that is not accompanied by sweating) rather than “wet” flushing (flushing that is accompanied by sweating).

Heart Valvular Lesions

One of the more serious symptoms of carcinoid syndrome is heart valvule lesions, a condition in which excess serotonin causes injury to the valves of the heart. This leads to a unique set of problems with the way your heart functions, called carcinoid heart disease. Cardiac disease develops in 11% to 66% of carcinoid patients.

Peripheral oedema, a swelling of the ankles, legs, hands and arms, or neck and face, may also occur in people with carcinoid syndrome. This symptom may be a sign of heart problems, and you should see your doctor if you notice it.


Pellagra is a rare nutritional deficiency that causes symptoms such as skin rash because of the lack of niacin.


About 78% of people with carcinoid syndrome experience diarrhoea, which can occur with flushing or by itself. Stools are watery and the diarrhoea can be mild or severe. Episodes can occur several times a day and can interfere with daily life. Patients with severe cases of diarrhoea often have trouble leaving their homes for work, social functions, or activities that require being away from home and on the move for a long time. In addition, diarrhoea can drain your body of water, causing dehydration and electrolyte loss. Without enough water and electrolytes, proper digestion cannot occur, and your body cannot get the nutrients it needs. This can worsen the weight loss, weakness, and fatigue that may have already have been caused by the loss of fluids and electrolytes. The diarrhoea that results from carcinoid syndrome may also occur at night (nocturnal diarrhoea).


People with carcinoid syndrome sometimes develop telangiectasia -reddish spots or veins that appear most often on the face, chest or arms. These are caused by prolonged flushing.


Exposure of lung tissues to abnormally high levels of certain substances can cause the blood vessels to constrict, and narrow the airway passages, making it difficult to breathe. This wheezing can be mistaken for asthma.


Cyanosis refers to characteristic bluish skin spots that can develop in people with carcinoid syndrome. The spots may appear after flushing, and are produced by a lack of oxygenated blood circulation in the affected areas.

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