If Something Feels Wrong, Insist on Testing
- Pain in my side causes me to push for testing
- Diagnosis: pancreatic neuroendocrine tumor
- Surgery to remove the tumor
I was 43 and in good health, but in January 2009 I started having pain in my lower left pelvic area.
I was referred to a surgeon who said my pain was a medical mystery and wanted me to go to a pain doctor. I told him that I wanted to know what was causing my pain. I asked for tests to be done, but he said he would see me in three weeks, after I saw the pain doctor. I called back several times and asked if they could run some tests, but they refused and kept insisting I should go to a pain doctor.
Doing My Own Research
I thought I might have a hernia, so I researched and found a hernia specialist. When I saw him, he said he didn’t think I had a hernia and he asked what I wanted to do. I told him I wanted to do some tests and he agreed. I had an MRI and an ultrasound, and that’s how my tumor was discovered. It was located on the neck of my pancreas near the main artery. I had pancreatic cancer.
The doctor recommended that I go to either MD Anderson or Baylor College of Medicine. He said I would be able to get seen faster at Baylor, so I made an appointment with Dr. Charles Brunicardi, head of the pancreatic center at that time (Dr. Brunicardi is now with SUNY Downstate Health Science University, Brooklyn , New York).
Surgery for a Pancreatic Neuroendocrine Tumor
My first visit with Dr. Brunicardi was in February of 2009. He told me I had a pancreatic neuroendocrine tumor. He looked at the ultrasound results and said we needed to operate. When he was leaving the room I scratched my neck. He stopped and asked me if I had been feeling itchy; I said yes. He ordered blood work and then set up time for surgery.
I had surgery on April 22, 2009; two-thirds of my pancreas was removed, along with my spleen and 14 lymph nodes. I was in surgery for about six hours and in recovery for another six hours. I spent a total of seven days in the hospital.
After recovering I followed up with Dr. Brunicardi and then with oncologist Dr. Garrett Lynch at Baylor College of Medicine (now retired). I saw Dr. Lynch every three months for blood tests and every six months for CT scans, along with octreotide nuclear scans (a special scan to look for neuroendocrine cells). This went on for the next five years. I never asked what stage my cancer was until I hit the five-year mark. That was when Dr. Lynch told me I was stage III.
Dr. Lynch retired in 2014, so Dr. Brandi Addison, my endocrinologist, took over my cancer screening from that point on. I never had chemotherapy or radiation or had to be on a special diet.
I recommend that if you feel something isn’t right with your body go get it checked and don’t be afraid to insist on testing and get a second opinion. I was very lucky to have such great doctors