My carcinoid cancer journey, like most carcinoid journeys, is a long and winding one. Carcinoid tumors are neurendocrine tumors that cause flushing and diarrhea.
I've always had a bad stomach, even as a kid. As an adult, it manifested as a "nervous stomach" whenever I would travel or have to speak publicly. In 2001, I was diagnosed with IBS (which means "we have no idea what is wrong with you). In the summer of 2010, I started flushing whenever I would walk up the stairs. I just chalked it up to being out of shape. However, in February of 2011 I had a major flushing incident. My body released substances that made me turn red and hot, and caused tremendous pressure in my face, ears, and roof of my mouth.
I went to the ER, and of course, nothing was wrong with me. They chalked it up to “stress” and gave me some ativan and told me to follow up with my primary care physician. That’s when the fun really began.
This blog chronicles many of those adventures, from March to May, and the long process of testing and diagnosis. I'm lucky, in that I had a good doctor who is an amazing diagnostician. I only wish I had seen her about the flushing sooner.
Although I had surgery in August 2011 to remove my primary tumor, I still have a signigicant amount of residual disease in my abdomen and pelvis. This is called peritoneal carcinimatosis, which means my intestines have innumerable "seeds" on the outside. These tumors are small now, but will continue to grow. As they grow, they can infiltrate the lining of the intestine and cause bowel obstruction. So again, I need more treatment.
Treatment with PRRT is the next step, and will buy me several years of progression free survival, with a good quality of life. I'm hoping to be able to raise funds and get the treatment this summer.
