Minnesota Carcinoid and Neuroendocrine Cancer Support
Contact: Dawn Marie Peterson
For Immediate Release
November 7, 2016
GOVERNOR MARK DAYTON PROCLAIMS NOVEMBER 10, 2016 AS NET CANCER AWARENESS DAY
This NET Cancer Day is a very special one for survivor Dawn Marie Peterson, co-founder of the newly-formed Minnesota non-profit Northwoods NETS, an organization whose mission is to support a high quality of life for rare neuroendocrine tumor survivors and their caregivers. As a nine-year survivor of a malignant neuroendocrine tumor, and recent recipient of a life-saving treatment that she traveled to Switzerland to receive, the future is much brighter thanks to cutting edge technology that is not quite available in the United States.
Today, new research, awareness amongst medical professionals and patients, and additional therapies to diagnosis and treat neuroendocrine tumors give hope to individuals like Dawn Marie Peterson and others who suffer with this chronic condition. Ms. Peterson shares the same disease that ultimately killed Apple CEO and Founder Steve Jobs in 2011.
Governor Mark Dayton has signed a proclamation naming Thursday, November 10, 2016, as NET Cancer Day (https://mn.gov/governor/assets/2016_11_10_Net_Cancer_Awareness_Day_tcm1055-260624.pdf).
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.
NETs are rare noncancerous (benign) or cancerous (malignant) tumors that 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 and other locations.
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.
Dawn Marie’s diagnosis in 2007, although considered early, has helped her overall survival, despite having random and sporadic symptoms for almost two decades prior to diagnosis. She’s undergone numerous grueling and painful treatments such as invasive surgeries, toxic chemotherapies, and most recently, PRRT, a systemic radiation treatment used in Europe for over twenty years, to help control her disease. At times, it’s been a difficult road for Dawn Marie, who is encouraged by the new research, including positive results obtained in U.S. trials for the same treatment she journeyed to Switzerland to receive.
In the last year, the NET Cancer community has seen two significant movements towards real progress in the diagnosis and treatment of neuroendocrine tumors. Positive results from the first studied patients who received Peptide Receptor Radionuclide Therapy (PRRT) (http://www.adacap.com/netter-1/), the same treatment that has been widely available in Europe, was released last fall. There is hope this treatment will see FDA approval either later this year or in early 2017. The second was the FDA approval for a new diagnostic tool called Ga-68 dotatate injection, a radioactive diagnostic agent for positron emission tomography (PET) imaging to help doctors be able to detect neuroendocrine tumors earlier in the course of patient’s disease. (http://www.fda.gov/NewsEvents/Newsroom/PressAnnouncements/ucm504524.htm) This research is unique to neuroendocrine cancer as NETs have receptors for somatostatin, a hormone that regulates the endocrine system. Ga-68 dotatate as well as PRRT both bind to the somatostatin receptors.
“There is finally significant progress happening towards the diagnosis and treatment of neuroendocrine tumors, making a brighter future for both patients and their caregivers,” Dawn Marie Peterson says.
Formed in 1999, Northwoods NETS began as 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. In 2015, Northwoods NETS received their 501(c)3 non-profit status, so they can continue their outreach and life-saving work through advocacy and support.
Learn more about Northwoods NETS at: http://www.northwoodsnets.org
Follow our Twitter Feed at: https://twitter.com/NorthwoodsNETS
Follow Dawn Marie’s blog on PRRT treatment: http://www.northwoodsnets.org/category/patient-profiles/prrt-me/
Learn more about Neuroendocrine Cancers: http://www.carcinoid.org
Learn more NET Cancer Awareness Day at: http://www.netcancerday.org