Monday, November 10 is worldwide NET Cancer Day.
NET cancers, caused from rare neuroendocrine tumors or NETS, are the “zebras” of the cancer world. When doctors are in medical school, they learn when diagnosing illnesses that they should be looking for “horses,” or common disease causes, rather than “zebras,” or rare causes. NETS are rare, occurring in approximately 35 in 100,000-cancer diagnosis annually. That is why NETS are zebras, their unique stripes being a symbol of the disease.
The type of NET cancer that I have is a pancreatic neuroendocrine tumor, or commonly referred to as PNET.
Although NET cancers tend to be slow growing, neuroendocrine tumors can turn into cancers including Carcinoid, MEN-1, Medullary carcinoma, Insulinoma, Gastrinoma, Glucagonoma and many others arising from various organs including the lungs, pancreas, thyroid, stomach and intestinal tract. NETS frequently masquerade as other more common illnesses such as Irritable Bowel Syndrome (IBS), Crohn’s, Asthma and even other types of cancers.
Dave Thomas of Wendy’s restaurant fame, and Steve Jobs of Apple both died from neuroendocrine cancers. Steve Jobs had the same type of pancreatic neuroendocrine cancer that I have.
Many doctors are unaware of NET cancers or understand how to treat them. Frequently, they have never seen a NET cancer patient. As a result, patients can go years, sometimes decades, before a proper diagnosis, usually late in the disease. While NET cancers are not curable, with early detection and proper management, they are treated as a chronic condition. By bringing awareness to this rare cancer, we hope that both patients and medical professionals are able to “see stripes” earlier in the diagnosis process.
If you live in or near Minneapolis, MN, the 35W Bridge will show off its stripes today in support of NET Cancer Day. Hopefully, it will be visible through the snow storm!
For more information about neuroendocrine tumor cancers, the following two organizations have great websites. Both of these foundations support research for NETS and provide amazing patient support.
Caring For Carcinoid Foundation:
Carcinoid Cancer Foundation