November 10 is World NET Cancer Day, a day set aside to raise awareness of neuroendocrine cancer, the disease that I’ve been fighting since 2013.
Neuroendocrine (NET) tumours can arise in any organ that contains neuroendocrine cells including the stomach, intestines, lungs, liver, pancreas and appendix. While most commonly found in people over the age of 60, NET cancer can affect both men and women of any age. Though NETs is the fastest growing class of cancers worldwide, the symptoms are usually vague and similar to more common health conditions. As a result, NETs is frequently misdiagnosed as anxiety, menopause, Irritable Bowel Syndrome (IBS), asthma, or diabetes.
Compared to most cancers, NETs is slow growing. It was estimated that I’d already had the disease for ten years when it was detected. I had been experiencing many of the common symptoms which include abdominal cramps, diarrhea, flushing of the skin, pounding of the heart, and wheezing or shortness of breath off and on for at least seven or eight years . Neither I nor my family doctor had any idea why. Like many general practitioners, he had never encountered a NETs patient before.
Almost 50% of patients visit a doctor 5 or more times before receiving a correct diagnosis! A recent study found that 58% of patients have advanced stage neuroendocrine cancer by the time they are correctly diagnosed. There is currently no cure for the majority of NET cancer patients, including me. Neuroendocrine cancers are complex and unpredictable. Once diagnosed, they require an expert and experienced multidisciplinary team of health care professionals to ensure the best possible outcome. Unfortunately, many patients, even in the world’s most developed countries, have difficulty accessing that kind of care.
So what’s with the zebra? Everyone recognizes the ubiquitous pink ribbon as a symbol of breast cancer, but not all cancers are pink. Medical students are taught when hearing hoofbeats, to think of horses, not zebras, so the zebra was chosen as symbol of our lesser known disease. There are some patients and advocates who think it’s silly and would like to see us stop using it, but I think we need to take advantage of every opportunity to draw attention to our cause and if that includes zebra stripes, I’m all for it.
What can you do to help? You can help us spread awareness by simply reposting this on your blog if you have one or posting a link to it on your Facebook page. My fellow zebras and I thank you!