|Contact: Dawn Marie Peterson
GOVERNOR MARK DAYTON PROCLAIMS NOVEMBER 10, 2015 AS NET CANCER DAY
Just a year after a Burnsville woman lost her mother to pancreatic neuroendocrine cancer—the cancer that took the life of entrepreneur Steve Jobs—her youngest son was diagnosed with the same type of tumors in his pancreas. The following year, another teenage son was also diagnosed with this disease.
Today, new research, more education and additional therapies to diagnosis and treat neuroendocrine tumors give hope to individuals like Nancy Marian for her sons and those who suffer with this chronic condition.
Governor Mark Dayton has signed a proclamation naming Tuesday, November 10, 2015, as NET Cancer Day (http://www.sos.state.mn.us/index.aspx?page=9&recordid=7544). Additionally, the I-35W St. Anthony Falls Bridge (http://www.dot.state.mn.us/i35wbridge/bridgelighting.html) will be lit beginning 30 minutes before sunset on Nov. 10 to raise awareness for this rare, complex and frequently misdiagnosed form of cancer.
Neuroendocrine tumors or NETs are tumors that arise in the neuroendocrine cells of various organs including the lungs, pancreas, thyroid, stomach and intestinal tract.
Neuroendocrine tumors affect 5.76 of 100,000 individuals, according to Dr. Thor Halfdanarson (Halfdanarson.Thorvardur@mayo.edu), a medical oncologist at the Mayo Clinic in Rochester who specializes in treating neuroendocrine tumors. He estimates that there are around 300 new cases a year in Minnesota.
“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.”
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.
“A lot of times it shows up, sadly, in a lot of patients when they are having problems with metastatic disease,” he says.
Nancy Marian’s experience with her mother helped her sons receive an early diagnosis. They learned that they suffer from the genetic disorder Multiple Endocrine Neoplasia Type 1 (MEN-1). Although they have not had surgery to remove their small, slow-growing tumors—a common treatment for many with NETs–they are regularly monitored with scans and blood tests.
Despite the difficulties in diagnosis, new research brings treatment options closer to patients.
Researchers at University of Iowa’s Holden Comprehensive Cancer Center have received a $10.67 million Specialized Programs of Research Excellence (SPORE) grant—the first and only SPORE grant ever awarded to fund research on neuroendocrine tumors.
This fall, two separate Phase III studies announced positive results for progression-free survival for NETs patients. The first studied patients who received Peptide Receptor Radionuclide Therapy (PRRT) (http://www.adacap.com/netter-1/). The second was for patients with gastrointestinal and lung NET’s that took the prescription drug Everolimus. (also known by the brand name Afinitor). (http://www.mdanderson.org/newsroom/news-releases/2015/everolimus-improves-survival-nonfunctional-neuroendocrine-tumors.html)
“Finally, real progress and hope for those of us affected,” Nancy Marian says.
Formed in 1999, Northwoods NETS is a patient support and advocacy group for those living with neuroendocrine tumor cancers including Carcinoid, Islet Cell, and MEN-1. While based in the Twin Cities, Northwoods NETS provides support, information, and awareness for patients and caregivers all over Minnesota, North and South Dakota and western Wisconsin.
Learn more about Northwoods NETS at: http://www.northwoodsnets.org
Follow our Twitter Feed at: https://twitter.com/NorthwoodsNETS
Learn more about Neuroendocrine Cancers: http://www.carcinoid.org
Learn more NET Cancer Awareness Day at: http://www.netcancerday.org