I was only 34 years old when I was diagnosed with a gastrointestinal neuroendocrine tumor. Two years before my diagnosis, I began experiencing stomach problems that my doctor attributed to irritable bowel syndrome (IBS). When the flushing started, and blood work tests showed fluctuations in my blood pressure, my doctor assumed that this was due to my hormones being a little off kilter. As a result, I was given hormone treatments.
In January of 2006, I started a nursing program and struggled to fight through continuing stomach discomfort. When my blood pressure began fluctuating and hit 220/122, I knew something serious was wrong and went to the emergency room. Once again, my doctor said that the symptoms were the result of my hormones. Without a clear answer in sight, I made the decision to leave the nursing program and focus on my health.
My symptoms quickly became more severe. At one point, I didn’t eat for two days because everything would go straight through me. Then, one day I noticed that my stool was all blood. I was rushed to the hospital and it was discovered that a tumor had ruptured.
I was told I was lucky to be alive. The surgeons removed six inches of my small intestines, but I also had metastases in my liver. At the hospital, I was visited by several surgeons who told me that I was a rare case— gastrointestinal neuroendocrine tumors usually affect people between the ages of 55 to 60. They also said that I suffered from textbook symptoms; however, my doctors never thought I had NET because I was “too young.” How did it take so long for me to be diagnosed when I had textbook symptoms?
I went through five rounds of chemotherapy and participated in multiple drug trials, finding very little relief. Finally, I was able to find a treatment that makes me feel the best I have felt since before my diagnosis. I finished my nursing degree and worked as a nurse for five years. Now, I work full-time as a safety manager for an engineering and construction company.
Through my journey, I have learned that if you know in your heart that there is something wrong, pursue it. I battled with doctors believing that I couldn’t have carcinoid because of my age. It is important to have confidence in what you feel and find the right doctor who will be willing to listen to your concerns and work with you to find a solution.
© 2016 Ipsen Biopharmaceuticals, Inc. February 2016 SMD-US-000202