My hope is that my story provides either direction or hope for someone else experiencing a similar situation. What I’ve learned is that it’s very important to advocate for yourself and trust what your body is telling you.
My journey began when I was 14 years old. I had a minor episode that started as heart palpitations and a slight headache; it felt very foreign to me. I began having these episodes every few months, and by the time I was 18 I was having them daily. At this point, they were much worse and went to excruciating migraines, throwing up, blurred vision, and an extreme “sense of doom”. Every time I had one, I thought I might die—no exaggeration. I was always a very active and healthy person, and I was hardly able to walk up a flight of steps without triggering an episode. I lived in constant fear with these episodes.
From the age 14 to 19, I had seen at least six different doctors; all said I was fine or that it was just anxiety. But, I was never an anxious person. My parents and I were losing hope that we would ever figure out what was wrong with me. By the grace of God, my father happened to stumble across the word “pheochromocytoma” in an old medical encyclopedia he had lying around. After Googling this long, strange word, we were all convinced this had to be what I had been experiencing. We met with a local endocrinologist and told him I wanted to get tested for this. However, he refused to test me and said that there is absolutely no way this is a possibility due to my age and how extremely rare these are. He finally agreed to test me, and my 24 hour urine test came back blown out of the waters. I then had an MRI that confirmed I had a 14cm mass on my left adrenal gland. Surgery was scheduled a few weeks later right before my college finals. I was 19 at this point. We were told that, due to the size of my tumor and how much adrenaline was pumping into my body, surgery would be risky and there was a good chance I might have a stroke or heart attack during the operation once the tumor was removed. However, surgery was a success, and they also removed my left adrenal gland as well.
After surgery, all my symptoms were gone, and I was told I would never have to worry about this disease again. I was ecstatic. After five years of close monitoring and yearly labs/scans, I was “released” and was able to go on with my life with this behind me.
Eight years later, when I was now 27 years old, I began having some of these same episodes, but they were mild compared to the ones I had before my surgery. I knew something was wrong, so I met back with my endocrinology team for more scans and lab work. The CT scans were clear and my labs were hardly elevated (not enough to suspect anything). At this time, my wife and I were about to start trying for children, but before we did I wanted to get genetic testing done. These results came back negative for all pheo and cancer genes. We were so relieved!
Another year went by, and I was having these episodes every now and then, specifically when my wife would massage my lower back or when I would do core strengthening exercises. In January 2021, I had a more severe episode—still mild in comparison to the ones I had formerly experienced—so we asked my doctor if there was any other type of scan we could do. At this point, I was starting to lose my mind thinking there was something in there while the scans and labs were still showing nothing. After discussing my case with the tumor board, they decided to do a PET scan with dotatate. They then found three lesions, one lesion in my left side adrenal bed (the area they removed prior) and two on my liver. While most may have felt saddened and concerned, I felt relieved to know I had been right about these recurring episodes, and I felt thankful to God for leading my doctor to perform this PET scan. Surgery was scheduled a month later.
During the five hour surgery, they found many smaller lesions on my liver (more than the original 2 that appeared on the scans). They removed a part of my liver, resected 3 lesions from my liver, and performed radio-frequency ablation on all the other lesions in/on the liver that could not be resected. They were also able to successfully resect the golfball sized tumor on my left adrenal bed—it also was larger than the scans indicated. This second surgery was completed April 21st 2021, and we are now currently awaiting the results to see if I am a candidate for MIBG/Azedra for any future needs.
My hope is that my story provides either direction or hope for someone else experiencing a similar situation. What I’ve learned is that it’s very important to advocate for yourself and trust what your body is telling you. The scans and labs don’t always show everything, so it’s imperative to push for more even if everything looks “normal.” I know my journey is not quite over yet, but I’m trusting God every step of the way as He has always provided and is continuing to work for my good!