Why education and raising awareness of neuroendocrine tumors is so critical.
YES, IT’S CANCER--”Carcinoid” or “carcinoma-like” was the term used by the researcher who first discovered this class of tumors. In 2000 the World Health Organization designated “carcinoid” and other rare tumors of the hormone-producing cells as “neuroendocrine tumors” (NETs). The original term can create confusion that the tumors are benign.
HOW RARE IS IT?--Neuroendocrine cancer is considered rare, but a recent study in the U.S. showed an increase in the incidence from 1 in 100,000 in 1973 to 7 in 100,000 in 2012, possibly due to better diagnosis.
DIFFERENT IN EACH PATIENT--The cancer can arise anywhere there are endocrine or hormone-producing cells, such as the lung, small intestine, pancreas, rectum, or other sites. Some patients are asymptomatic, but other patients may have significant symptoms.
DIFFICULT TO DIAGNOSE--Patients often go 5-7 years without a correct diagnosis. Symptoms, such as diarrhea and flushing, can mimic common diseases like inflammatory bowel disease or asthma. Medical students are taught to think horses, or typical diseases, when they hear hoofbeats, rather than to think zebras, or exotic diseases.
MANAGED BUT RARELY CURED--NETs often metastasize to sites such as the liver, lungs, bone or lymph nodes. Because many are slow-growing, they can take years to show on scans. There is a risk of under-treating the disease by not recognizing its full extent and over-treating where tumors are growing slowly.
NOT ALL ARE SLOW-GROWING--Some types of neuroendocrine cancer, high-grade NETs and poorly differentiated neuroendocrine carcinomas, grow more quickly and require timely assessment and treatment.
MULTIDISCIPLINARY TEAM--Patients benefit the most from a multidisciplinary care team, ideally with a “quarterback” who has NET expertise.
NEW TREATMENTS AND DIAGNOSTIC TOOLS--In recent years the FDA has approved new diagnostic tests, medications, and therapies, which have led to better diagnosis and treatment of NET cancer.
NEW CLINICAL TRIALS--Trials are ongoing and actively recruiting patients. You can search TrialsToday.com, ancora.ai, or ClinicalTrials.gov. Talk to your physician to understand if any trials are suitable for you.
INSURANCE REIMBURSEMENT--Like anyone with a rare or chronic disease, NET patients often find themselves battling for coverage because of the newness and expense of some tools and treatments.
