Living life after treatment and surgery for Esophageal Cancer.

Colleen, thanks for reaching out. Yes. The dietitians at the hospital where I had my surgery were useless. I'm not using the word lightly either. They had me drink 5 Boosts per day as a criteria for discharge. Ugh! The dietitian that works with my oncology group offers the same generic advice that the Physicians did. Eat frequent small meals. Get at least 80 grams of protein per day. Brat diet for diarrhea. Stay away from sugar and limit fat. None of these people have had an gastroesophagectomy with pylormyoectomy. And, they just don't get it. If I don't eat carbs or fat, that leaves protein and at 4 calories per gram, I would need 500 grams of protein for 2,000 calories. I'm done with the dietitians that I have consulted with in the past.

I find that a protein bar in the morning will trigger dumping syndrome. A protein bar in the afternoon or evening is fine. Drinking fluids after a meal (even a small one) will trigger. Fried foods are a no no. Rich foods with butter and cream sometimes trigger it. then of course there is quantity. Anything over a 6-8 ounce portion will be a trigger. Besides being extremely distasteful, protein shakes are a trigger. If i drink one, and have an episode, I can't eat for 3 hours, so they don't do any good towards my goal of 2000 calories per day. Also, sweets after a meal are bad, but sweets alone I do fine with. I am still very much figuring all of this out. I really do not like eating, but force myself. I also don't like losing weight every day, so I eat what I can when I can and hope for the best.

I know this is a long shot, for I am not one to go on forums. I really appreciate you sharing your story with us all. I have been having issues with swallowing and regurgitating food and medications. It gets stuck behind my throat and my middle chest. For a while now I have been having very bad chest pain behind my left breast bone in the middle of my back. I am also very weak and tired. I thought for the longest I was having heart issues and they did a big work up on my heart and the only thing abnormal that grew in size within a 3 month time was "mucosal thickening in distal esophagus". I was wondering if anyone could share what symptoms they have had in the beginning. I normally don't have heartburn but I did start taking omeprazole twice a day as a precaution. I have been also dealing with debilitating degenerative spinal disease and it has changed my life dramatically. I am looking for hope. Any insight would be greatly appreciated.

I did have a call last week. Initially going to try increasing hydration.

Hi @kimlynn, I can imagine you are worried. It sounds like you have symptoms that need professional medical attention. This does not mean that you have esophageal cancer - although that's immediately where one's mind goes, right? I recommend talking to your doctor or seeing a gastroenterologist to figure out what is going on and to rule out what it isn't.

Hi Steve-I was diagnosed in 2018 with esophageal cancer and had chemo and proton radiation at Mayo Clinic at Rochester MN and an Ivor Lewis at St Mary’s hospital. I’m 5 years cancer free!!
Eating has not been without challenges but has been trial and error and episodes of dumping syndrome in the months after surgery.
The following is a sample of foods I eat for breakfast: one slice of Dave’s killer bread buttered and topped with a hard or soft boiled egg, slice of cheese and for more protein a slice or two of turkey bacon plus a half cup of cooked veg. My noon meal would be a protein like fish, hamburger patty, baked chicken, a salad, and a portion of a sweet potato or white.
I drink at
Least 50 oz of water or non caffeinated tea per day. I can sip some liquid when I eat but after a meal, I wait at least an hour before I drink fluids again.
My between meal snacks are cheese, peanut butter with good quality multigrain crackers, raw veggies, oranges, apples, pears, basically any fruit your body can tolerate. I also grab a handful of organic mixed nuts, almonds, or pistachios for snacks between meals, which are slow to digest so eat small amounts. Also processed sugar foods are not my friend. One of my favorite treats I can tolerate are organic fudge bars(100 calorie) from Costco. If you have any questions for me, I’d be very happy to help you on your journey with your new anatomy.

To kimlynn... yes... get your butt in and have them take a look-see by endoscopy. If anything looks suspicious it will be biopsied... and these results are usually 100% definitive... no more guessing. If not cancer... then maybe something else that can be addressed. If esophageal cancer... then the sooner it is diagnosed the better!

To Steve... I know you've been on our Zoom calls... so you know my thoughts on eating and dealing with our post-op aftermath. I don't blame dieticians... they know the end results were all looking for... but they don't quite have a feel for what it is to be us... and how this crazy esophagectomy surgery just gives us all such crazy various post-op results. So we're all left to figure out what works for us... and the changes we'll see on our post-op journeys. We all may arrive at the same destination in a year or two... but how we eventually get there is beyond imagination. You saw first-hand on our calls that we have somee crazy strange cases!

Thanks Puprluvr. Those are huge portions, but If I break it up more, I'll be good. Great post for me to read as it gives me ideas to have redily available. I appreciate your response.

Thanks again Gary. very insightful. Kimlynn, Mrgvw (Gary) is correct. Have an upper endoscopy and go from there. I had trouble swallowing (food getting hung up at the junction of the esophagus and stomach) and muscled through it for 3-4 months as my tumor grew. I hope yours is not a tumor, but if it is, earlier detection is better. If it's not, big relief and if necessary they can dialite a benign stricture and get you eating better. Best of luck and let us know how it goes.

Hi @dave1958, how are you doing on proton beam therapy and chemo? What chemo regimen are you having?

Hi EC. I can imagine, I used to eat like a horse and only weighed 160 lbs. at 6 feet 1 inch tall. I've lost 20 lbs because my appetite has changed dramatically. I can't eat and I can't stand this tube feeding either, but I want to live. I also have esophageal cancer. Not looking forward to this journey, but I betcha it beats the alternative! Just started my second week of treatments. Praying for us all.