Living life after treatment and surgery for Esophageal Cancer.

My partner is five years out from an Ivor Lewis procedure. He frequently aspirates (2-10 x/month) and therefore suffers from the related complications. This includes pneumonia and a huge emotional toll. Does anyone know if there are treatments available? This is hugely impacting his quality of life.

Hi all. I'm new to the group. I have stage 4 Adenocarcinoma of stomach and esophagus. I went through 3 months of Chemo and an Esophageal-gastrectomy in January 2024. I'm losing weight and muscle mass. I get very generic advice from my care team. Eat frequent small meals. High calorie, high fat (good fat), don't mix food and drink, etc. I really need advice from someone who has lived through this process. someone who gets it. I like eating, but hate the feeling after I am done. Even small meals. I get hot, then weak, then diarrhea for 1/2 day to 2 days. I have to rest for 1-2 hours after I eat. It's like food sucks the energy right out of me. I call these "episodes". They don't happen every time, but today, it was 3 times after each attempted meal. I had a 20 gram protein bar for breakfast. episode. Felt like eating again at noon. I had some chicken and some mac and cheese. (small portion). episode. for dinner at 5, I had 1/2 of a side salad because my wife wanted to go out to eat. On the way home, episode. So frustrating. I'm down 30 pounds and have lost a lot of muscle mass. I'm 61 years old and feel like I'm 80 at times. I would love to know if my episodes sound familiar to anyone and how you avoid them. Thanks in advance. Steve R.

this is scarry reading this. So sorry for your troubles. I'm 3 1/2 months post op and this exact scenario is starting to happen with me. I wake up coughing and if I wait to long to get up, I start to puke. Now when I start coughing, I get up and sit in a lazy boy. It helps a lot.

I had my surgery in April of 2023. Developed Dumping Syndrome/Hypoglycemia probably 3 months later. At first just on occasion after certain meals, getting warm then profoundly sweating and soaking through my clothes. Lightheaded. Then about four months ago episodes so severe I would become disoriented and even hallucinate. At the advice of my thoracic surgeon I started keeping a food diary but there didn't seem to be a pattern. My GP prescribed an in arm glucose monitor, Libre 3, which sends blood sugar levels to my phone and Apple Watch once every minute and that has an enormous help in getting in front of highs and drops. I still need a nutrionist to help me address the actual triggers but at least I am able to mitigate the symptoms. The sensor is by prescription and has to be changed every 14 days but it is simple to apply and absolutely painless. I'm also experiencing weight loss, was 235 prior to surgery and weighed 160 this morning down from about 180 when I came home from the hospital last May, so a slow loss but steady despite trying to eat frequent small meals.

Please let us know if you figure anything out on the cause/mitigation of the “lightheadedness”. Thanks

I too have this syndrome. Lightheaded, fast heart rate, no energy, abdominal pain, diarrhea. Researching Dumping Syndrome, I find that these are classic symptoms and they an occur immediately or within 1 hour or be delayed and have an onset of 1-3 hours after eating. Common triggers are rich foods, high sugar foods, large portions of food, and having food and drink together.

I'm more susceptible to this because they did a pyloric myotomy during my gastroesophagectomy to prevent delayed gastric emptying.

Does anyone have this surgery with success? Sounds like it's best not to have it

Yes... many do have "success"... but then again, it depends what you mean by success. If being alive is success... ok, I suppose that is one thing. Never seeing your cancer again, that is another. QoLife... that is another. A long slow recovery... yup, it does take awhile... so... does that factor in to your consideration of success? The problem is, you don't get to take a few different roads at the same time....and see which one is the best way to go.

I'll contact you privately, and we can really discuss the EC post-op journey... patient to patient. Us patients talk differently to each other than our doctors talk to us. But I don't fault our many doctors... they simply haven't lived it.

Gary

I'll contact you privately

@mrgvw, I appreciate your contacting people privately. However, I’d like to underline the benefit of sharing in the group discussions. By posting in the discussions in the Esophageal Cancer support group many members, including people who do not post, benefit from from your knowledge and experience and others can chime in as well.

You're so right that patients who have lived it know a lot and can help people prepare for what to expect. Thank you for your willingness to share.

Hi and welcome, @stever1. Your trials and tribulations with finding the right foods, when to eat and how much sound exhausting and frustrating. Eating out
can be higher stakes, too. Since this is all relatively new for sure, I'm confident that fellow members like @sjw6358 @dave640 @katoosh @naomicanada @lori57216 @pellaw @survivorsuz @puprluvr @dsh33782 @ajfromchicago @socalkelly and others will have tips to offer.

Steve, have you consulted with an oncology dietitian? Have you noticed specific foods that trigger an "episode"?