Raising awareness of neuroendocrine cancers around the world

Theme for 2011

NET cancers are difficult to detect

NET cancers are usually slow-growing tumors that are derived from the diffuse neuroendocrine system. They are found most commonly in the gastrointestinal system and lung, but they can also originate in other parts of the body such as the pancreas, ovary, and testes, among other sites.

People with NET cancers are often misdiagnosed

NET cancers can manifest myriad clinical symptoms, many of which are nonspecific and vague. For example, many carcinoid patients may initially present with nonspecific abdominal symptoms which may lead to an initial diagnosis of Irritable Bowel Syndrome or Crohn’s disease. These difficulties, combined with a lack of knowledge and awareness among the medical profession, mean that NET cancers are often misdiagnosed.

Diagnosis of NET cancers often takes many years

The onset of symptoms takes an average of 3 – 7 years. Patients commonly have to wait months or even several years after presenting with symptoms before a correct diagnosis is achieved. These very long delays in diagnosis can be improved.

Many people are living with undiagnosed NET cancers

Many cases of NET cancers are discovered incidentally during routine operations, like an appendectomy, or from endoscopies and abdominal CAT scans.

NET cancers are increasingly common, yet poorly understood

The incidence of NET cancers appears to be rising worldwide. Each year in the UK alone, more than 2,000 people are diagnosed with a NET cancer. In the US, around 11,000 people are diagnosed each year. This means that NETs are now twice as common as pancreatic cancer. Despite this, many medical professionals have little or no experience with NET cancers.

Early diagnosis improves the NET patient’s outcome and prognosis

Surgery is the only therapy that can cure NET cancers. However, the typical delay in diagnosis, giving the tumor the opportunity to metastasize, makes most NET cancers incurable. NET cancers commonly give rise to secondary cancers, usually in the liver, lymph nodes or bones. A patient with these secondary cancers is more difficult to treat than a patient with only a primary cancer.  The 5-year survival of patients with neuroendocrine tumors and liver metastases is 40% compared with 75-99% in those free of liver metastases. Early detection is therefore crucial to the patient’s quality of life and prognosis.

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