Northwoods NETS is pleased to announce that Senator Mark Dayton has proclaimed Friday, November 10th, NET Cancer Awareness Day in the state of Minnesota. We thank Governor Dayton for his continued recognition of this unusual cancer. It is estimated that approximately 300 Minnesotans are diagnosed with each year with this poorly understood disease.
NETS, also known as neuroendocrine tumors, are considered rare tumors that have either benign or malignant behaviors. NETS develop in the hormone-producing cells of the body’s neuroendocrine system. These cells are found throughout the body in organs, such as the stomach, intestines, pancreas, lungs, endocrine glands and other locations throughout the body.
In the past, doctors considered these tumors as benign, or cancer-“like,” thereby originally calling it “carcinoid.” This classification did more harm than good to patients who struggled with symptoms for years trying to get properly diagnosed and treated.
Symptoms may be nonspecific but can include diarrhea, flushing or intermittent abdominal pain. Neuroendocrine tumors frequently masquerade as other more common illnesses such as irritable bowel syndrome (IBS), Crohn’s, asthma and even other types of cancers.
Neuroendocrine tumors affect 5.76 of 100,000 individuals, according to Dr. Thor Halfdanarson, a medical oncologist at the Mayo Clinic in Rochester who specializes in treating neuroendocrine tumors.
“It’s very common to see a delay in diagnosis,” Dr. Halfdanarson says. “A lot of patients have symptoms for years and may have tests, but it just doesn’t show up. A lot of times it shows up, sadly, in a lot of patients when they are having problems with metastatic disease,” he says.
Formed in 1999, Northwoods NETS is one of the oldest patient-support groups in the United States for those living with neuroendocrine tumors. We are committed to helping spread awareness about this lesser-known cancer. We provide a safe, patient-centered support group to help those living with neuroendocrine tumors and their families a place to find accurate, up-to-date information about their illness.