Five of six brothers living with Barrett’s Esophagus, four of which have been diagnosed with Esophageal Cancer, and the limited quality of life that comes with this debilitating diagnosis.
At the age of 29, I was backpacking with friends and stopped to take a break and eat. During that break, I began to choke on everything I tried to digest. The food was coming right back up when I would try to swallow. I had always suffered from reflux issues, but nothing like this before.
After the trip, I made an appointment with my doctor, who immediately ordered a barium swallow-imaging test, also known as an esophagography,to take a closer look at what was causing the regurgitation. I was quickly diagnosed with Barrett’s Esophagus, and given medication to treat my discomfort and alleviate flare-ups. My doctor also ordered an endoscopy every six months to monitor any changes or abnormalities in my esophagus. Because Barrett’s Esophagus has a strong association with Esophageal Cancer, a particularly lethal cancer, I did not take this diagnosis lightly.
Unfortunately, I was no stranger to Barrett’s or Esophageal Cancer. I am one of six boys and three out of my five brothers are currently living with Esophageal Cancer. My fourth brother actually passed away at the age of 65 from the disease. Additionally, both my mother and grandmother had passed away from cancer, though neither ever had confirmed Esophageal Cancer. I do, however, vividly remember my grandmother having choking fits at the dinner table when I was growing up, often excusing herself to regurgitate the food she was trying to swallow.
My three brothers currently living with Esophageal Cancer have all received an Esophagectomy, a procedure commonly performed in the early stages of the disease to prevent the cancer from spreading. During this procedure, some or most of the esophagus is removed, as well as a small part of the stomach, and the upper part of the esophagus is connected to the remaining part of the stomach. Part of the stomach is then pulled up into the chest or neck to become the new esophagus. How much of the esophagus is removed depends on the stage of the tumor and where it is located.
I have witnessed first-hand the limited quality of life my brothers have experienced as a result of their cancer and this surgery. I have supported them through their weak and fragile states and as they’ve suffered from lack of sleep, issues with food aspiration and even “dump syndrome,” a condition that is caused by food moving too quickly to the small intestine, causing cramping, nausea and diarrhea. I have even watched one brother lose more than 60% of his body weight due to his inability to properly nourish himself.
Each year, when I go in for my routine endoscopy, I wait with great fear that I will join my brothers in their battle with this horrific disease. While I remain cancer-free to this day, I still need to make sure I never rush to eat. Unfortunately, I still have issues keeping food down. My medicine helps the reflux issues, but feeling comfortable after eating continues to be a daily struggle.
The reality is that this is how my family and my own quality of life will remain. For people like me, living with Barrett’s means I will also live in fear of Esophageal Cancer, a direct result of the uncertainty that is associated with the treatment of Barrett’s. This fear is also related to the fact that I know my doctors have a very limited view of my condition, without the actionable information I need be treated appropriately.
Fortunately, I also live in hope that through advancements in research and technology, a new era of diagnosis for Barrett’s and other conditions that are indicators of lethal cancers are on the horizon. The ability to sit down and enjoy a meal is something that should not be taken for granted. It is my hope that this breakthrough technology will be available for my son, who currently suffers from esophagitis, to eliminate the likelihood that his quality of life is also compromised.