90% of NET cancer misdiagnosed

The World NET Community has held its first Worldwide NET Cancer Awareness Day on 10 November 2010, to raise awareness about cancers called neuroendocrine tumours (NETs) and the need for timely detection and diagnosis.

Neuroendocrine tumours (NETS) are cancers of the interface between the endocrine (hormonal) system and the nervous system. They are slow-growing tumours that occur mostly in the gastrointestinal system and lungs but which can also develop in other parts of the body such as the pancreas and rectum.

Among the types of neuroendocrine tumours are carcinoid, glucagonoma, and pheochromocytoma.

More than 90% of all NET patients are incorrectly diagnosed and initially treated for the wrong disease. Misdiagnoses or delayed diagnoses mean that NET patients are treated on average five to seven years for the wrong disease; often the correct diagnosis is not made until the disease has spread and advanced.

Steve Jobs, CEO of Apple, is one of the best known members of the carcinoid and neuroendocrine tumour community. He was diagnosed with an islet cell pancreatic neuroendocrine tumor (NET) in 2004 for which he had surgery, followed by a liver transplant in April 2009.

IBS and Crohn's disease

Many physicians still believe that NETs are benign, slow-growing, and do not spread to other parts of the body. NETs that are malignant often metastasize to the liver, lungs, or pancreas. More than half of all NETs are cancerous. NETs that metastasize spread to the lymph nodes, liver, bones, and lungs, as well as other less common sites such as the brain, kidneys, and spleen.

Irritable Bowel Syndrome (IBS) and Crohn’s disease are the two most common misdiagnosed conditions for patients with gastrointestinal carcinoid.

Given the prevalence and potential severity of the disease, NET patient groups and organisations around the world joined forces in March 2010 to form the World NET Community. Together they are working to raise awareness about NET cancers on a global level.

With increased awareness both in the healthcare and patient communities, it is hoped there will be an improvement in the availability and quality of diagnosis, treatment and care for NET cancer patients throughout the world.


The most common symptoms of NETs and carcinoid syndrome are abdominal pain, flushing, diarrhoea, wheezing, chronic cough, recurrent lung infections, bloating, heart palpitations, skin rash, heartburn, and weight changes.

Sign the NET proclamation

Participate in NET Cancer Awareness Day by visiting the interactive website www.netcancerday.org and signing the worldwide NET Cancer Awareness Day Proclamation online to show your support. Share the proclamation with your friends via email, follow the campaign on Twitter and become a fan on Facebook.
Visit www.netcancerday.org for more info

 - (NET cancer day press release, and Birgit Ottermann, Health24, November 2010)

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