It’s not surprising that this disease has escaped the attention of even the medical community at large until now. Many family practitioners will never see a case. My doctor has been practicing medicine for about 20 years and I’m his first NETS patient. A locum filling in at our local hospital last spring went so far as to debate with me whether I even have cancer! He was completely unaware that neuroendocrine tumours can be malignant as most are not.
Is NET cancer really that rare? Here in Canada, specific numbers are not even reported separately, but my estimate, based on US statistics, is that there are approximately 890 new cases per year across the country with only about 106 of those residing here in the province of Alberta. In comparison, 2100 Albertan women are diagnosed with breast cancer each year and 2500 men with prostate cancer. Is it any wonder that those cancers have a much higher profile?
Since it falls upon those of us with the disease to do what we can to raise awareness, there are several key messages that we would like to highlight today. First of all, as with other cancers, early diagnosis is important. Sadly, it doesn’t happen often. If the initial tumour is found before any secondary growths occur, it can often be removed surgically and the patient is considered cured. Once it has spread, however, the disease is incurable. I had 5 tumours at diagnosis and many patients have more. I have been told that I may have had this cancer for as long as 10 years before it was detected quite by accident! Fortunately, it’s usually very slow-growing.
Awareness of symptoms is key to early diagnosis. Unfortunately, however, misdiagnosis is extremely common. On average, patients see 6 healthcare professionals at more than 12 clinical visits before receiving a correct diagnosis because symptoms of NET cancer are often very similar to more common conditions including Irritable Bowel Syndrome, asthma, diabetes, stomach ulcers and lactose intolerance. Depending on where the tumours are located, typical symptoms include abdominal pain and cramping, diarrhea, joint pain, wheezing, fatigue, and flushing of the skin. In very severe cases, there can be heart damage causing shortness of breath.
I endured stomach pain and diarrhea off and on for at least 7 or 8 years before my tumours were finally detected. At one point, a medication used to treat acid-related stomach problems was prescribed, but it had little effect. Another time, I tried a dairy free diet for an entire month to see if that would help, but it didn’t.
NET cancer can arise in any organ that contains neuroendocrine cells including the stomach, intestines, lungs, liver, pancreas and appendix. My primary tumour is located in my colon, but I also have three growths on my liver and one in a lymph node. Though it can occur at any age, the usual age of diagnosis is somewhere between 40 and 60.
So what are some of the goals of NET Cancer Day?
- to raise awareness among decision makers, health professionals and the general public
- to promote research aimed at improving quality of life and prognosis for NET cancer patients
- to advocate for equity in access to care and treatment for NET cancer patients around the world
- to bring hope and information to people living with NET cancers, their caregivers and their families
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. Thank you!