Young Esophageal Cancer Patient

eaborak

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.

jwkelly

Really should have done everything but the esophagus surgery until or if you had no choice. I was diagnosed with stage 3b EC after losing 85 pounds after 10 months of dysphagia. When I was 95 pounds then a G tube was put in my stomach .Still have it and regained 40 pounds.I stopped the poisons and live with my cancer. Not easy but more enjoyable than surgeries, stretchings,stents,plus chemo, radiation poison and side effects.

jwkelly

As far as nutrition goes I use Jevity 1.5 from Abbott and its great. Ensure and others are filled with sugar and not good for those with cancer,cancer history and such.

billbennett

I've gone from 250lbs to 180lbs. On 3rd round of chemo. One more to go. Then, if the beast is shrunk, it's slice and dice time. Tumor is at bottom of the esophagus and top of stomach. 5cm. Fatigue is the problem on this round. I eat like a pig, everything I can get my hands on. Sometimes I puke a bit, but hell, I'll just settle down and eat again. I'm hoping the puking gives me abs of steel...lol. The pre-chem drugs raise my blood glucose dramatically but my diabetic specialist is working on this. I've had a life of challenges as I've lived on the outer fringes and beat many hard knocks. I can honestly say I'm one tough customer and my riding brothers can vouch for this. Thing is this fight is like no other I've encountered. I WONT LOSE THIS FIGHT. My heart and soul send love and positive vibes to all who are traversing this road. Stay strong!

jwkelly

https://csn.cancer.org/discussion/comment/1710069#Comment_1710069

Puking can eat away at your esophagus. Abs don't last last as the cancer strips you of muscle. It takes your fat,water, muscle,energy, life.I had had 6 pack abs from cancer weight loss for 3-4 months as I went. from 180 plus-95 pounds.

billbennett

I'm holding st 180 now. Trying to gain more. Packing in calories constantly. Pumping wieghts to try and regain muscle mass. Not easy as my strength has diminish led. Still, I won't quit. No cardio as I do not want wiegt loss. If I eat slowly and often puking is not an issue. As a guy, eating slowly has never been part of the equation. Learning new things I guess. I plan to make cancer my ****. Beat it, get back to riding with the club. That's me in the middle.

jwkelly

Overweight and cancer go hand in hand. Cancer loves fat .