Living life after treatment and surgery for Esophageal Cancer.

I finished 25 proton treatments and 5 Carbo/Taxil Chemo treatments 2 weeks ago. Really no problems during treatment but felt "poopy" for the past 2 weeks. Just now starting to feel better. Swallowing is not a big issue, just loss of appetite. I started taking Zolof for anxiety and it has really helped me get a good nights sleep. I take two Boost High Calorie shakes a day and eat small amounts frequently during the day. Keep your hydration up. Good luck on your journey.

Thanks cbnova...I am in between surgeries, 2 so far...needless to say, but recovering from stage 3 esophageal cancer has not gone well for me...

I just started here in Knoxville, Tn. with my proton radiation and chemo treatments. I am 75 turning 76 in
September and did an awful lot of research before making a decision on the path I wanted to take, After reading numerous posts from the Mayo Clinic site(s) , the Cleveland Clinic and one notable other whose name escapes me right now I decided based on what I was told by two sets of Esophageal (Thoracic and General) surgeons that
the surgery would be any where from 4-8 hrs, followed by a week in ICU and then a4-6 month recovery period to
get back to anywhere near normal. Up until this I have been a very healthy individual so having said that if I can get another 3 years and have a decent quality of life for that period I would be fine with that,. I was lucky (I feel)
to find that they have a wonderful proton therapy center here which I am going to. I have learned that they have such a wonderful reputation here that people from many other states come here to be treated. I was originally scheduled for the standard radiation until "I" found this info. on the proton center here and signed up for that. Simple reason being it is much less invasive and the side effects are told to be less. My wife and Ihave gotten used to traveling and even going places locally. We lived in Florida(Ocala) for 16 years before moving here and were quite active. Yearly resident passholders at Disney and also saw the state in every way we could from the Panhandle to Key West! I guess what I am trying to say after all I read and was told by the "professionals" is there could be complications with the surgery and reduce my quality of life which I want to have for whatever time I have left. My stage is a 1-1/2 to 2 and nothing has moved so my radiation and chemo people feel there is a good possibility that it can be eradicated or significantly reduced so when it is all said and done I will have a few years left with a decent quality of life! Needless to say I reused to go through the surgery following radiation and chemo. I wish ALL of you the very best in going through this battle with this HORRIBLE disease.
Chip (from Tennessee)

I am facing esophagectomy July 21 2023. Is second thoughts about going through with it normal ? I've done a little research and the list I saw of what you should never eat again is extensive. I am 180lbs my ideal weight is 165. At 64 years old I had no plans on retiring. That has changed. Don't know if I'll ever be able to work again after this.

I had an esophagectomy April 17, 2023. The first 3 weeks of recovery (two in the hospital) were pretty brutal and my surgeon was extremely cautious with diet for that period. The key for me was to absolutely start moving after surgery and take advantage of walking whenever the therapists offered regardless of my energy. I am now able to eat (swallow) just about anything although some foods occasionally trigger a blood sugar imbalance. I'm 6 feet tall and weighed about 210 at surgery (down from 239 when I developed my first severe swallowing difficulties.) My weight post surgery seems to be holding around 185. Yesterday I had lunch at a Mexican restaurant including two margaritas. I was a huge craft beer fan prior to surgery but carbonation is now a little problematic and I just nurse short pours. The most annoying thing post surgery besides some lingering nerve pain is constantly burbing after eating or drinking and sleeping with my head elevated. Make sure your doctor explains clearly that this is a high risk surgery but also that there is a life, slightly adjusted, on the other side of it.

Well done! I too counsel others now constantly... and they are all over the planet. Just a way to give back... thanking those who held my hand through it all. And I agree, so many things are brutally tough on this EC journey... from J tube surgery (I got mine the week after I was diagnosed... and still 3 weeks before my first treatment)... to chemo and radiation to the esophagectomy to a year of immunotherapy. And yes, the post-op journey is the hardest by far! And it's because it is slower than slow... and can be very depressing because changes aren't seen. I counsel others that days and weeks are meaningless... maybe look back at things in 3 month chunks. And at 3 months post-op... you are just getting started. In fact, my second year post-op was waaaaayyyy better than my first year... in every regard... eating, swallowing, digestion, tummy aches, intestinal pains, ass explosions, sleeping... it all just keeps on improving... albeit very slowly. Now I'm pretty much back to normal other than eating a bit less... and much more often. I can even sleep normally now... although I never break the bedtime prep rules! I do spend the first hour in bed up at 45 degrees or so... watching TV. But when sleepy, I can now slide down and sleep on either side... rarely get a bit of reflux... and have never aspirated.

Be well... keep it up helping others! Love it!

You call me... I'll take you thru it all. I had my surgery at age 61 almost exactly 3 years ago (july 29, 2020).

Second thoughts are absolutely normal. I would talk to the pair of surgeons that do that operation and tell them to be totally honest with you with regards of what you are facing.
I talked to two different sets of surgeons and and they were impressed by my research and 3
of the 4 felt I was making the right decision. Ask a lot of questions and meet with as many professionals as you can; e.g. chemotherapy oncologists and radiation oncologists as well as surgeons. You didn't say what stage you were at and that can have a bearing on how they will advise you. I wish you all the very best and hope you can come to a decision that "you feel" is
right for you.
Chip(from Knoxville)

I was diagnosed with stage 4. Mayo thinks it's really stage 3 after 7 chemo and 28 radiation treatments.

I have been performing esophagectomy for 20 years now, and many of our patients are able to return to work. Give yourself the time you need to recover and make sure you monitor symptoms and follow the recommendations. You will eat 6 times a day instead of 3 times, but if you split each meal up in half, this becomes manageable. Protein shakes are a great way to stay hydrated and nourished. There are many ways you can set yourself up to do well, and we have a lot of resources for you.