On May 20, 2012, I injured myself while working as a pilot. While leaving the cockpit, I reached behind me to grab my overnight bag; however, a strap had gotten stuck and I ended up tearing a ligament in my left elbow and pulling what I thought was a stomach muscle. Three weeks later I was still experiencing pain in my stomach, which the doctor thought was a hernia. I went for a CT scan, which showed a mass in my intestines and I was advised to get a colonoscopy.
My colonoscopy resulted in a biopsy that revealed I had a neuroendocrine tumor. I underwent laproscopic surgery to have 12 inches of intestine removed. A pathology report found that three out of five lymphnodes had carcinoid. Additionally, a chest and abdomen MRI showed multiple lesions in my liver. I knew I needed to seek out a specialist.
My wife Nicole was instrumental in helping me look online for more information about my disease. We visited three different specialists in Florida; however, they all said the cancer could not be cut out because the lesions were in multiple liver nodes. One of the doctors did suggest a treatment but one of the possible side effects was diabetes and I didn’t want to do that because I would no longer be able to fly.
My wife found the Neuroendocrine Cancer Awareness Network (NCAN) on Facebook and connected with the president, and a fellow patient, Maryann Wahmann. After having visited multiple doctors, she helped point me in the direction of a specialist who was finally able to help me. I met him in February 2013 and was introduced to the entire health care team there, including the surgeon who said he could operate on me.
In March 2013 I went in for surgery. The week before, I underwent an otreoscan that used a radioactive isotope to determine where the tumors were. During the surgery, the surgeon then used a Geiger counter to see likely paths of the tumor spread and to know what needed to be removed. Although seven tumors were removed from my liver, I was able to leave the hospital after only four days.
In January 2015, I was lucky enough to be accepted into a five year study at the National Institute of Health in Bethesda, Maryland. While there, the doctors performed an investigational scan, which showed small tumors on my liver, and lymph nodes. I also had blood work done that showed high levels of calcitonin. The doctors suggested having an ultrasound of my neck which showed five nodules on my thyroid.
I think my story is unusual because I never experienced any symptoms. I was lucky to have caught it early and, although I had to visit multiple doctors, I was able to find a good specialist relatively quickly. The worst part for me is that I lost my medical certificate to be able to fly. I petitioned to get it back and was about to return to work when a routine MRI showed more small tumors. I have been a pilot for 34 years and am fighting to return to work.
My advice for other patients is to have a good support system and to never give up. My wife has been an amazing care giver and was there with me every step of the way. Together we refused to give up even when multiple doctors said there was nothing they could do for me. We sought out additional information and as many options as possible, rather than just believing a first or second opinion. There are doctors and people out there who understand what you are going through; it is just a matter of finding them. I know we have found the right team for me. Although the surgery slowed me down a little, I am still able to enjoy the activities I used to such as long distance bike rides with my friends.
© 2016 Ipsen Biopharmaceuticals, Inc. February 2016 SMD-US-000203