November 10, 2011 is Worldwide NET Cancer Awareness Day

 

What is NET Cancer?
What are neuroendocrine tumors? Neuroendocrine tumors (NETs) is the umbrella term for a group of unusual, often slow-growing cancers, which develop from cells in the diffuse endocrine system. They are found most commonly in the lung or gastrointestinal system, but they can also originate in other parts of the body such as the pancreas, ovary, and testes, among other sites.

Why NET Cancer Day? Why a Worldwide NET Cancer Awareness Day?

♦ Because we constantly need to raise awareness of NET cancers among decision makers, health professionals and the general public. Information is key to improving quality of life and prognosis for NET cancer patients; raising awareness is therefore one of our primary goals

♦ Because acting simultaneously in many places and in many countries can ensure the voice of NET cancer patients is heard by more people

♦ Because early detection of NET cancers is a public health priority

♦ Because a day focused on NET cancers can bring hope and information to people living with NET cancers, their caregivers and families

♦ Because we want equity in access to care and treatment for NET cancer patients around the world

♦ Because we need an action that can bring all stakeholders of the NET cancer community together with the same goal

♦ Because we need more funds for research and care, and more research and efforts directed towards NET cancers

♦ Because we need to keep fighting for NET cancer patients

♦ Because we need to coordinate policy actions at national and international levels

Patients are treated on an average of 3-7 years for the wrong disease. Most NET patients are diagnosed when the cancer has already spread. Early diagnosis dramatically improves outcomes.

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.

The World NET Community was formed in Berlin on March 10, 2010. We are an independent group whose aim is to raise awareness about neuroendocrine tumors (NETs). Our members include charitable organizations and patient groups from Australia, Bulgaria, Canada, France, Germany, the Netherlands, Norway, Poland, Singapore, Sweden, the United Kingdom and the United States. This community is intended to expand to include new members to broaden the awareness campaign.

♦ ♦ ♦ ♦ ♦