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    Rare cancer on the rise: Why the first signs are easily misdiagnosed

    Intermittent abdominal pain, flushing and diarrhea are commonly associated with a number of medical conditions. Yet for some Americans these symptoms could actually be the sign of a rare form of cancer called neuroendocrine tumors (NET). Given the wide range of symptoms of NET cancers, it is important to raise awareness of this often misdiagnosed disease.

    To address this need, a global network of patient advocacy groups joined together in 2010 to create Worldwide NET Cancer Awareness Day (WNCAD). Each year on November 10, WNCAD is celebrated worldwide to increase understanding of the disease, highlight inroads made in patient care and honor those affected by NET. On average it takes 5-7 years after symptoms occur to diagnose NET, which means the cancer has often already spread to other parts of the body by the time it is diagnosed.

    “Early detection of NET is crucial to help improve patient prognosis and outcomes,” said Grace Goldstein, President, International Neuroendocrine Cancer Alliance (INCA) and Chief Operating Officer, Carcinoid Cancer Foundation. “Annual awareness days like WNCAD are essential to elevating the status of the disease so people know what to look for and what questions to ask their doctor.”

    Signs and symptoms of NET can vary depending on the type, size and location of the tumor, yet it is not uncommon for people to have no symptoms. When symptoms are present, things like cramping and a warm feeling and redness in the face and neck (flushing) can be misdiagnosed as gastrointestinal issues, ulcers, irritable bowel syndrome or even menopause. In many cases, symptoms of NET can be successfully managed for years with proper treatment and medical care. Women with diabetes and people with a family history of cancer are at greater risk of developing NET.

    “As a patient advocate, I find the dramatic increase of patients being diagnosed with NET to be significant,” said Goldstein. “Over the last 30 years we’ve seen incidence rates quadruple. For every 100,000 people, five cases of NET are reported annually.”

    Luckily over the past two decades there have been major advancements in research, resources and support for people diagnosed with NET. In addition, there is increasing awareness that patients should be under the care of a multidisciplinary team of professionals that includes an oncologist, nurse, nutritionist and gastroenterologist working together to help them manage their disease.

    A great way to learn more about NET is through online patient resources, such as, which provide educational materials, patient tools and links to support services and groups. Additionally, visit to help INCA raise awareness for WNCAD, November 10.

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