The story of Laura Aguiar
They say that having a Pancreatic Neuroendocrine Tumor (PNET) makes me a Zebra in medical terms. As I began to do research, I came to understand that the reason why I am considered a Zebra is because of how misdiagnosed my condition is. And sadly, I can use my own story as an example of how this happens.
When I was in middle school, I started to suffer from stomach pain. It was so severe that one day I passed out. My parents took me to the doctor, and I was told I had acid reflex. Over the years, my symptoms got worse. In college, I started to have chest pains, my heartbeat was over 100 beats per minute every day. It was exhausting. For this, I was prescribed Atenolol and told I was just to stressed. Then, I began to have severe diarrhea, bloating, and gas. It was hard to eat anything because my body would reject it moments after I ate it. Over the next 5 years, I had a series of test done regularly (blood work and stool samples), I was tested for everything my doctor could think of, but all the test would come back normal. Finally, one day, my doctor told me it was time we talked about a bigger issue she felt was going on in my life. She told me that she believed I was depressed and that depression can manifest itself in many ways and my body had decided that my stomach issues were my bodies way of telling me it was time to deal with my depression. I started to see a therapist regularly and take 2 antidepressant medications. But still, the stomach issues persisted. In fact, they got worse.
In January of this year (2018), my stomach issues got so bad that I had to go to the emergency room. It was here that a doctor finally decided to go beyond the blood work because once again, all the test they ran came back normal, and do a CT scan. After a 45-minute wait, the doctor came back with a somber expression and I knew that what they had found on the CT scan was not good. They had found a mass on the tail of my pancreas and several on my liver and that I was going to be admitted to the hospital right away. I could see the sadness and pity on the doctor’s face because she believed that I had a far more aggressive form of Pancreatic Cancer that had spread to my liver, because of how rare PNETs are, I don’t think it ever occurred to her that it was a Neuroendocrine Tumor.
The hardest thing I have ever had to do in my life was look my spouse in the eyes that night as she cried and told her that everything was going to be okay, that I was going to be okay. My second day in the hospital, an Oncologist came in and asked me questions, before he left, he said “I don’t think you have pancreatic cancer, I think what you have is a neuroendocrine tumor. Those are rare, but they have a better prognosis and everything in your chart and what we have talked about, lead me to believe that this is what you have. We will just wait for the biopsy to confirm it”.
Five days later, it did and since my diagnosis, I have been receiving Sandostatin LAR shots every 28 days, this has controlled ALL my stomach issues. Next month, I will have a 3-day full body scan done to see if the tumors on my liver and pancreas have grown, to also see if any more tumors have developed anywhere else in my body, and to find my primary tumor so that it could be surgically removed. This should prolong my life expectancy by many years.
But what I have learned in the couple of months, is that my cancer is incurable, but treatable. Doctors refer to it as “the good looking cancer” because I will not need chemo until it becomes aggressive. And until that day comes, I have promised myself that I am going to “live” more. Go visit the places that I have always wanted to, do the work that I love, and create memories and moments with my spouse. Eat a small dessert every day if I want.
This disease isn’t going to hold me back, in fact, I think it has propelled me forward!