The story of Samantha Pratt
My husband is a Zebra, not the actual animal but he has a pNET. A Pancreatic neuroendocrine tumour (pNET). In medicine, the term ‘zebra’ is used to reference a rare disease. This is because medical students are taught to assume the simplest explanation is usually the best “If you hear hoofbeats, think horse, not zebras”. He won the lottery with this diagnose, they are rare tumors that only occur in 1 in 100,000 people. It is not curable and can be fatal, just ask Steve Jobs. 60% of pNETS patients have liver tumors at the time of diagnoses. Yes, he won that one too. In the past ten years, there have been numerous advances in the treatments available but more work needs to be done. Many doctors do not know the symptoms and patients go undiagnosed. Because there is no standard treatment, it can be difficult to know what to try next. My husband had a Whipple procedure in 2003 which is a difficult complicated procedure that removed part of his pancreas, then several chemo-embolizations and a liver resection. He receives a monthly shot that may or may not control his symptoms and stop the tumors from growing. Currently, we are waiting for the FDA to approve Peptide Receptor Radionuclide Therapy (PRRT). This treatment is widely available in Europe and our best chance for a long happy life together but it is not a guarantee. More research needs to be done to determine the best methods of stopping this disease and providing quality of life to those that are affected by it. In the mean time, I research, make new friends around the world and enjoy our time together. In the words of Mr. Garth Brooks “I could have missed the pain but then I would have missed the dance”.