Esophageal cancer treatment: Anyone have good experiences to share?

December 2022, my husband (80 years old) had surgery removing about 6 inches of his esophagus and top part on his stomach. It was a very long recovery; he used a feeding tube for almost a year and half. He had dilatation a few times to aid with his swallowing. It was a great disappointment; we thought that a six months recovery would be in order.
Because he was losing weight, I started him drinking Chocolate Mighty Shakes with 2-3 Tbs heavy cream added. Three (4oz) shakes a day provided more than 1000 calories a day. Still his weight did not improve by a lot. He had lots of problems with swallowing, mucus, lack of appetite, food texture and lack of taste were all issues. He felt rather sad.
By Spring 2024, we realized that at least 75% of his problems came with the tube feeding. Even if his weight was below our goal, we decided to cut tube feeding during the day, getting him freedom to move around, go outside etc. This really worked in giving him a new and much happier outlook. He was always a very active person. Soon, he was willing to try eating some food without my coaxing. By Summer, he no longer needed his tube feeding, from then on, his recovery went steadily better, from eating ½ cup of food at the time to one cup in about a month; in addition, he was still drinking his shakes to add to his calorie’s intake. Now, his diet is almost normal, his weigh stable, and most of all, he is a lot happier, he is doing projects again although his stamina is still a little low but betting better. For a while, we felt we would never this day, we are very thankful.

I’m really thankful for all of you. 🙏🏻🩷

Well said. I am also a 5 year survivor. I have experienced many of the same issues mentioned (and a few not mentioned) on this site by fellow EC patients. I am not a doctor and don’t consider myself a support person but rather someone that anyone can lean on at anytime to discuss whatever is on their mind. EC can be intimidating, especially when first diagnosed. The feeling of satisfaction one gets from being able to help others is beyond words. I feel these type of groups (whether considered support or not, that is just a word) can help play a major role in someone’s journey in dealing with EC. It has helped me for sure.

I finished my 5th round of chemo this week and finish radiation next week. I meet with the surgeon next week. Does anyone have any specific questions I should ask the surgeon? I have to admit I am very anxious about this surgery. Please share anything I should ask, confirm, prepare myself for.

Stay away from online support groups?! Really?! I'm only a 5 yr survivor... but the single biggest thing I do, on our twice-weekly Zoom calls, is help my fellow EC patients. Support group? I suppose... but I don't think of us that way. We have a variety of patient counselors... and we've done every treatment known to man, had every type of surgery, have done every immunotherapy. We have stage 1s thru stage 4s... patients from all over the world come visit us... and stick with us. Our doctors only have so much time with us patients... but we patients have all the time in the world to help others.

Vicki
Great to hear from long term EC survivor. I had chemo and radiation several years ago for EC and am still alive and kicking. At 79 I hope I still have another 10-15 years to enjoy with my wife Charlotte.
Don

I am a long term survivor of ec. I was diagnosed in April 2012 and finished treatment in October 2012. That treatment is hard is an understatement. But I’ve had an extra 12 years of life with my husband and family, grandkids, travel, a full life, and still going strong! Almost the first advice I got from my doctor was to stay away from online support groups.

I had chemo & radiation prior to my Stage 4 esophagectomy surgery. No problems at all with chemo - no hair loss etc. Radiation really burned my throat and doctor took me off of it for 2 weeks. When it healed up we finished the course.

Thank you!

You’ve got this!