The story of Patty
In May 2019, I went to a cardiologist for a pulsating feeling in my stomach that I thought may have been my heart. After ultrasounds and testing I was found to be fine. The pulsing however, was not going away. My cardiologist decided to send me for a CT scan. Two weeks later, I was called and asked to come to the office for results. My husband came with me but waited outside in the waiting room. I felt like it took forever for the doctor to come in to give me my results and I started to become very nervous. It was my husband who came through the door with tears in his eyes telling me that an 11.5 cm tumor was found on my adrenal gland. It was devastating news. I was sent for extensive labs and testing and finally was told that I had what was called a pheochromocytoma. I was alpha and beta blocked and put on bedrest for three months until it was safe to have my eight hour surgery to remove this tumor. I thought everything was fine but unfortunately when I had labs a couple of months after my surgery, they were still elevated. My doctor ordered a pet scan and it was then I was found to be metastatic. I had another long, hard surgery to resect all of the tumors that were found in my abdomen , unfortunately, some where too small to find. During that surgery, my spleen was damaged and my recovery was very difficult. It took a long time for me to get back to a normal life. My doctor suggested I go to the NIH to see if they could do anything for me in one of their treatment protocols. I was accepted into the protocol for PRRT. I received four rounds 2 1/2 years ago and have remained stable up until now. Seems like things are starting up again, and some of my tumors are waking up.I am now awaiting another round of treatment. I don’t know what lies ahead,but,all I can do is live my best life and try to stay as positive as I can. I was really scared when I got diagnosed and I thought I was going to die but guess what ??? I’m still here!!!