For those of us who have neuroendocrine cancer, every day is NET Cancer Day, but November 10 is the one day each year that is set aside to increase awareness of our disease and to promote improved diagnostics, treatments, care, and research. Unlike most cancers, neuroendocrine cancer (NETS) is often overlooked or misdiagnosed. Some patients, myself included, endure symptoms for 5 to 10 years before receiving an accurate diagnosis. All that time, the unseen disease is quietly growing and spreading which is why at least 50% of us, again myself included, have stage 4 cancer by the time we are diagnosed. At that point, it’s treatable, but not curable.

Why is this sneaky disease so easily missed? Why does it take so long to get a correct diagnosis? NETS starts in the cells of the neuroendocrine system which are found throughout the body. Neuroendocrine tumours can hide in many locations, but most commonly originate in the lungs, pancreas, gastrointestinal tract (specifically the large intestine, small intestine, or appendix), the adrenal glands or in rare cases, the brain, breast, or prostate. Without early detection, it spreads to other locations throughout the body including the lymph nodes, liver, peritoneal cavity, and bones.

Not only can the cancer be found in so many different parts of the body, but the symptoms vary and are often non-specific. They might include abdominal pain, diarrhea, nausea and vomiting, heightened anxiety, fatigue, weight loss, skin flushing, chest pain, coughing, wheezing, shortness of breath, and/or back pain. All of these are also symptoms of more common conditions, so it’s completely understandable that doctors don’t immediately consider a little-known cancer like NETS. Many have never encountered a case and know little or nothing about it. As a result, neuroendocrine cancer is often mistaken for other conditions including gastritis, IBS, generalized anxiety disorder, or even menopause. That’s why we need an annual NET Cancer Day and why we need to advocate for increased awareness amongst doctors and patients every day of the year.  

Last year, on NET Cancer Day, I was happy to be able to report that my disease was stable. Unfortunately, this year, that’s no longer the case. Over the past year, my tumours (or at least one of them), which had essentially been dormant for several years, have been waking up and producing excess hormones again. One of the lesions on my liver has also started to grow again. Thankfully, however, NETS is usually a slow-growing cancer and we still have a number of treatment options available. The neuroendocrine cancer team at the Cross Cancer Institute meets on Tuesdays (I absolutely love the fact that they take a team approach), so they’ll be discussing my case next week and deciding where we go from here.

In the meantime, other than an ongoing headache that is probably stress-related, I have no symptoms and I’m able to live a fairly normal life. Considering that fact that I’ve had stage 4 cancer for over ten years, I feel pretty blessed. I consider every day a gift and I continue to trust that I’m not dying of NETs, but living with it! 

There will be no Fashion Friday post today, but stay tuned for a new one next week.