Living life after treatment and surgery for Esophageal Cancer.

Welcome @cbnova, this is a great topic to have started. I can see that you benefited from the mentorship of a fellow esophageal cancer survivor and now you'd like to pay that forward. What better place to do that but here where many members can share their tips and experiences and support.

I'm tagging a few members like @afterthetreatment @sjw6358 @dave640 @katoosh @naomicanada @lori57216 @pellaw @survivorsuz @puprluvr @sjw6358 @ajfromchicago @kissingrhino @esop @socalkelly to join in.

What top tip would you share with someone new to esophageal cancer or in treatment or in recovery? What do you wish you had known?

I believe that my surgeon was intentionally vague on the side effects of surgery prior to surgery. At first I was upset with him but now understanding why he did that. Everyone's experience is unique to their own body so you have to learn how your body reacts to your own surgery.I am now almost two years post treatments and on most days have a pretty good handle on my diet challenges. Over the last two years I have lost approximately 80 lbs but have stabilize in the past few months. I was overweight to begin with but now maintain a much more healthy weight.

I had surgery two years ago. I lost all my muscle and lost about 65 lbs. I weighed 85 lbs. yesterday. I eat fattening foods but to no avail. It's impossible to gain any weight. Hopefully things will change.

My wife recently came home from the hospital after her esophagectomy. Due to a complication with her J tube, she is already eating a wide range of foods, basically anything she wants. But she does get full, and she has some appetite, but not a lot of appetite, so we are concerned about her losing weight. She is already at the lowest weight that she would want to be at.
Could you say more about why you think you lost so much weight and have so much difficulty adding weight? That would be helpful. Thank you.

I was way overweight to begin with. My surgeon actually had some trouble with surgery because of my weight. As far as losing 80 lbs I am actually healthier now than before surgery. I guess that makes me lucky. I have reached a weight that I don't want to lose more so my diet is very important to maintain. With the reconstructed stomach my system is easily upset with the foods it allows both in type and quantity. What I have done is found the foods my system allows and even though it may be boring I force myself to eat these foods more often. By doing this I am able to keep weight on. A couple of foods that work for me is peanut butter and instant breakfast.

@cbnova , thank you. Sounds like you’ve got a pretty good handle on this. Best wishes.

Hi. Before cancer I was healthy, active, tom boy, muscular for a woman and proud of it. Losing all this weight and not being active is really difficult for me. My surgeon didn't really have an answer for me as to why I couldn't gain weight. I researched it and found an article in a British paper about my issue. Turns out there are lots of cancer patients suffering my problem. It seems that stomachs which have been stretched due to the esophagus being removed is the reason (they think). I will just have to read for updates and hope there is a cure.

@doglover888, would you say that your appetite has been significantly less ever since your operation? Or do you have a good appetite but not the ability to digest enough food during the course of a day?
Or do you eat plenty to maintain or gain weight, yet you lose weight nonetheless?
Whichever might be the case, I know it’s been hard. Thank you for sharing your experience with us.

I’m a year out since going through the whole treatment including surgery . I have become quite the soup inventor. I was 205 before, got down as low as 128 now I stay around 130 but I have been up to 135. I eat a lot of vegetables, mainly mashed potatoes and roast beef blending them together with AuJus, Mayo ,and salsa, olive oil. I try to add 2 tablespoons of olive oil 3 meals a day. Seems to be helping. I feel like I’m getting heavier even though the scale doesn’t agree. I am able to eat a lot of Chinese vegetables dishes I prepare myself. Just wish I could eat meat items without getting stuck. But I eat a lots and lots of bean dishes. Good luck out there and with everyone’s help we will get through this!! 👍👍👍

I found that Boost Very High Calorie Drink, in a blender with either whole milk, ice cream or full fat yogurt plus some frozen fruit make a palatable shake for my husband, and best of all- each shake has 600+ calories! It gets tiresome drinking your calories, but I give him 2 of these skakes per day (that's a lot of calories) plus make sure that every bite of food he eats has a lot of fat and calories to it. He is nowhere near his goal weight, but I'm hoping we're on the right track. This is definitely going to be a challenge going forward (Esophegectomy Jan 17, 2023)