Young Esophageal Cancer Patient

Hi everyone, my name is Emily, and I was diagnosed with Stage 3A Adenocarcinoma of the Esophagus at the age of 26.

I wanted to share my story with those who might find it helpful, or just insightful in the journey of someone going through this cancer treatment at this age.

In May of 2021, I ended up in the ER with upper left quadrant pain and didn’t know the cause of it. I had received the normal work up (CT, labs, UA) and almost all of my results came back okay. The only abnormal result they really received was that a lymph node in my heptogastric ligament was abnormally sized and that I should go see oncology as soon as possible. Oncology told me that they needed a biopsy due to needing more tests to get a better diagnosis of why this lymph node was abnormally sized but no signs of infection.

Fast forward to my next appointment (June of 2021) with a surgeon for a biopsy, and he was sure it wasn’t anything major due to the lymph node had shrunk in size within a time frame I don’t remember (maybe only a month or two apart), and that if I was really concerned about it that he would refer me to infectious disease to rule out any infection. Going to Infectious disease, I had no idea what to expect coming out of that appointment because no one really could figure out why I was having certain symptoms but no tests results showing infection. So the doctor ran some tests, and lo and behold it all came back normal or negative. This was super discouraging as there still wasn’t an answer.

But in July of 2021, I had gone back to my primary physician’s office complaining of more fatigue, nausea/vomiting, worsening acid reflux, and appetite changes. So my primary had referred me to a GI doctor so I could get treatment for my acid reflux, and see if there were any answers lying in there. I saw the GI NP and she had scheduled me for an Upper Endoscopy and a Colonoscopy for September of 2021.

The day came of my scopes being done, and I was a little nervous because I had never really been put under before for any procedures because I was a healthy 26 year old. I remember after the scopes were done, and when i was in the PACU, the doctor had told me that he had found a mass in my lower esophagus and that it was going to be sent out to pathology to be tested. A couple days later, I had received the results through myChart not thinking it could be anything bad, that it was just a non-malignant tumor. However, the results had shown that it was indeed Adenocarcinoma of the Esophagus, and what had confirmed this even more was getting a call from my doctors office saying that I needed to see him as soon as possible. The next day, it was a 100 percent confirmed, and I will never forget that day for the rest of my life.

I went through the standard of treatment for this cancer, which included 5 rounds of chemo, 28 rounds of radiation, an Ivor Lewis esophagectomy, and a year of immunotherapy. During this treatment, I experienced appetite changes, nausea/vomiting, pain from radiation, and weight loss. The surgery performed kept me in the hospital for roughly 8 days, and while I was there I was on a NPO diet for the first few days, and before I left the hospital I was put on a Full liquid diet to ensure that i was receiving nutrition. While at home, I had a full liquid diet, basically anything that could be liquid my doctors wanted me to eat to make sure i was getting some nutrition. Most of the time, I was drinking nutritional shakes, and anything my body could keep down, and I was sleeping almost all day for the first week home.

Today, I am still learning new things about my body, what it can and cannot tolerate in terms of food and exercise. The surgery caused me to lose roughly 52 pounds in total, with little weight gain this far. For reference I was about 178 pounds pre-treatment, and today I am roughly 126 pounds. It has been a huge life changing event for me, as this doesn’t normally occur in someone who is 26 and who presented with no risk factors besides having acid reflux.

Thank you for those who took the time to read my story, and feel free to ask any questions or give tips on how to get nutrients in because I am still learning what works and what doesn’t work.