Your Stories

Catherine's Story

Four months ago I was diagnosed with stage 4, metastatic neuroendocrine tumors, the cancer that killed Steve Jobs. As a 28 year old who had just gotten married 3 months prior, who was busy working on her MBA at night, and who finally felt like her world was perfect, this was all unimaginable. Over 11,000 new patients are diagnosed in the U.S. each year with neuroendocrine tumors (NET), and that number is increasing by 5% each year. This slow-growing type of cancer can start in any part of the body that has neuroendocrine cells, but it is most commonly found in the gastrointestinal tract and the lungs. It has nearly always metastasized by the time it is found, giving patients little hope for a cure and a future that, even in the best cases, includes management of the disease for the rest of their lives. Since my diagnosis, I have traveled to meet specialists all over the country. They have no better idea what to do with me than I know what to do with myself. Each of the specialists has a strategy, none are the same, and all say that the other doctors' strategies are also not wrong. As terrifying as it is, I have to be my own best advocate. I have to choose the medical plan that I feel is best for me. I chose to have surgery one month ago to remove the primary tumors, and I still must determine the best plan for the 16 tumors in my liver. I am also on a monthly injection, sandostatin, which will hopefully keep tumor growth stable. I don't know how long I can live with this disease. I don't know how fast it is growing, how long I have had it, or how long I will continue to feel as good as I do. But there is one thing that gives me hope, and it is a potential cure. A potential cure for neuroendocrine cancer is sitting idle in a freezer at Sweden's Uppsala University. The biotech industry has abandoned it because it cannot be patented (ie., no profit). The thought of waking up one day and not living with cancer is something I can only dream about for now, but I hope that within my lifetime we can work together to cure this disease and many others.