Once again, today is Worldwide NET Cancer Day, a day set aside to increase awareness of neuroendocrine (NET) cancers and to promote improved diagnostics, treatments, information, care and research. As a patient who has been living with this cancer for the past nine years, this is, of course, very close to my heart.

Once again this year, we are urging people to

Know the symptoms.

Push for diagnosis. 

Less than 30% of neuroendocrine cancer patients receive a correct diagnosis the first time they reach out for help. In fact, it often takes five to ten years from onset of symptoms to correct diagnosis. During that time, of course, the cancer quietly spreads.

Here are some facts about neuroendocrine cancer:

• NETs are a unique group of cancers that arise from neuroendocrine cells and can be found in many organs of the body.
• NETs generally affect people over the age of 50, but not always.
• Symptoms of NETs vary and are often non-specific due to their ability to secrete an excess of different hormones.
• Symptoms depend on the organ where the tumour is located and may include abdominal pain, diarrhea, nausea and vomiting, weight loss, skin flushing, chest pain, coughing, wheezing, shortness of breath, and/or back pain. 
• As a distinct class of tumours, NETs require specialized tests and treatments.
• NETs are often found unexpectedly during unrelated medical procedures or imaging tests.
• NETs are the second most common cancer of the digestive tract.
• Gastrointestinal NETs are often found in the appendix, colon, and rectum, but can also affect the stomach and small intestine.
• Lung NETs comprise 20 to 25% of all invasive lung tumours.
• The incidence and prevalence of pancreatic NETs (the form of neuroendocrine cancer that claimed the lives of Steve Jobs and Aretha Franklin) have been steadily increasing over time and now comprise about 7% of all pancreatic cancers.
• Merkel Cell Carcinoma, a rare skin cancer, is a form of neuroendocrine cancer.

One of the most important things I’ve learned since my diagnosis is how important it is to advocate for yourself. Know your body. Know what’s normal for you. Pay attention when something feels off. Take note of unusual symptoms and talk to your doctor as soon as possible. If you don’t get the answers you’re looking for, PUSH! Don’t give up.

Thankfully, at this point, my cancer is stable. Constant surveillance is important though, so I’ll be having CT scans and other tests again next month. In the meantime, since hubby’s diagnosis with prostate cancer this summer, my health has temporarily taken a back seat. Now that his name is on the five to six month waiting list for robotic prostate surgery, we’re breathing a sigh of relief and getting on with life. Though there is no cure for me, I continue to trust that I’m not dying of NETs, I’m living with it!