NET Cancer Day 2021

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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.

The theme of this year’s campaign is

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. Thankfully, compared to many other cancers, NETS is slow growing, but like many of my fellow patients, I was Stage 4 at diagnosis. This means that my cancer had already spread from its origin to distant parts of my body. At this point, 8 years after diagnosis, treatment has halted it’s progress and resulted in some shrinkage, but there is no cure.

Know the symptoms. 

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Once considered rare, neuroendocrine cancer is actually the fastest growing class of cancers worldwide. Unfortunately, many health care professionals have never seen a case and know little or nothing about this complex disease. In order to achieve early, correct diagnosis for every patient, we need every primary care physician to know and recognize the symptoms. When they are presented with stomach pain, it makes sense for them to suspect gastritis (inflammation of the stomach lining), but we also need them to wonder if it could be neuroendocrine cancer. When the stomach pain is accompanied by severe diarrhea, irritable bowel syndrome is a definite possibility, but we also need the doctor to be aware that it could be NET cancer. When a woman complains of facial flushing, rather than simply assuming that it’s due to menopause, we need her doctor to ask himself if it could be NETS. Depending on the location of the primary tumour, other symptoms may include nausea and vomiting, rapid heartbeat, anxiety, skin rash, shortness of breath or wheezing, lack of appetite, unexplained weight loss and/or lack of energy.

Push for diagnosis. 

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Diagnosing neuroendocrine cancer is complex. In addition to recognizing the symptoms, we need doctors to order the correct laboratory tests and scans. It’s also important for patients to push for correct diagnosis. 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. Years before I was finally diagnosed, I remember thinking “at least it’s not cancer” but I was wrong! If I’d pushed for answers then, perhaps it would have been caught much sooner and the outcome might have been very different!

Know the symptoms.

Push for diagnosis.