Esophagectomy: What is life like Afterwards?

Posted by bakerwd4 @bakerwd4, Jul 28, 2024

Hello, my dad was diagnosed with esophageal cancer in March. His tumor is very small and isolated, thankfully! He has been a champ and has finished chemo and radiation. His esophagectomy is scheduled in a couple of weeks. He and the rest of my family are starting to feel the fear and reality of this procedure. My dad's not a big talker but I know he is scared. I would love to connect with others to learn about what life has been like after this surgery so I can help support my dad. I am also hoping to get him involved with some support groups with others who have experienced the surgery. It would be so beneficial for him to connect with others who have been through what he is going through. Any insight on post-surgery recovery and life would be very appreciated!

Interested in more discussions like this? Go to the Esophageal Cancer Support Group.

Profile picture for ollusam @ollusam

@leadingham1 my husband was diagnosed with (GE juncture)esophageal cancer in 2024 at the age of 75. He had 4 rounds of FLoT followed by Ivor Lewis minimally invasive eaophagectomy then did 3 more rounds of FLOT post op. He was initially diagnosed with stage 2 but after the surgery pathology showed stage 1B.
It was a rough year with chemo and surgery.he had a small anastomosis leak while in the hospital and needed a pigtail chest drainage. I am an RN so I was able to take care of him post op. It was 24 hour round the clock with tube feedings. Crushing meds and insulin coverage but today he is eating just about everything. He has lost weight but maintaining it. He is out shoveling snow and going to the ymca. Just had a follow up CT and no signs of cancer. He dodged a bullet but followed advise and is now cancer free and doing great.
I hope your dad has the same outcome. We struggled with the idea of surgery but am glad he did it. We just said we have a rough year ahead but a year from now it will be just a bad memory and that’s how it worked out

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@ollusam thank you. I pray your husband continues to do well.

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Profile picture for leadingham1 @leadingham1

@lionsfan they will be removing part of the lower esophagus and his stomach. The will stretch and connect so food can flow. It’s I believe gastric bypass surgery. Stage 2, but the risk are high of complications. My dad doesn’t want to do it. Now we are sure what to do?

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@leadingham1
It's definitely a difficult decision. For me, I was diagnosed Stage 3 actively trending to Stage 4. I was 66 and as a personal trainer, in great shape. Mayo strongly recommended the surgery as the best protocol for a cure. Each of us is different, but my recovery has been difficult. Despite that, I'd make the same decision again. Your Dad's going to have a different quality of life probably and it will take time to recover. It is a big change, but still very workable. I'd be happy to talk with you and share details if that would help. Too many details to cover in a post. Best wishes for you and your Dad.

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Profile picture for leadingham1 @leadingham1

@ollusam thank you, this is encouraging. Did they remove his stomach? I guess surgeon never gave a name if the procedure?

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@leadingham1 they removed part of his stomach and esophagus. Not the entire stomach and pulled the remaining stomach up. He is now 76 y/o will be 77 in May. He is doing remarkably well. Eats everything but in smaller portions.

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Profile picture for leadingham1 @leadingham1

@ollusam thank you, this is encouraging. Did they remove his stomach? I guess surgeon never gave a name if the procedure?

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@leadingham1 it was a Ivor-Lewis minimally invasive esophagectomy . Both the lower part of esophagus and part of stomach were removed at Memorial Sloan Kettering Hospital in NYC

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My 73-year-old father was diagnosed with esophageal squamous cell carcinoma on Jan 1st. He is currently completing initial chemoradiation (23 sessions/40 Gy). Aside from an enlarged prostate causing nocturia (frequent nighttime urination), he is otherwise healthy with no history of hypertension or diabetes.

We are weighing two paths: an esophagectomy in 4-6 weeks versus definitive chemoradiation (continuing to 50+ Gy). Given his age and current health profile, what is the typical recovery outlook for a patient like him (Age : 73), and is the surgical risk generally preferred over the definitive radiation path for squamous cell cases?

Thanks,

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Profile picture for leadingham1 @leadingham1

@lionsfan they will be removing part of the lower esophagus and his stomach. The will stretch and connect so food can flow. It’s I believe gastric bypass surgery. Stage 2, but the risk are high of complications. My dad doesn’t want to do it. Now we are sure what to do?

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@leadingham1
I'm in the same boat - expect to remove lower (most?) of esophagus, GE junction, and the stomach in May. Terrified. I'm told I'll have a feeding tube for a month and not be able to even have water during most/all of that time. I'd love to learn more about what the experience from others of what that is like, including navigating the feeding tube.

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Profile picture for manish28 @manish28

My 73-year-old father was diagnosed with esophageal squamous cell carcinoma on Jan 1st. He is currently completing initial chemoradiation (23 sessions/40 Gy). Aside from an enlarged prostate causing nocturia (frequent nighttime urination), he is otherwise healthy with no history of hypertension or diabetes.

We are weighing two paths: an esophagectomy in 4-6 weeks versus definitive chemoradiation (continuing to 50+ Gy). Given his age and current health profile, what is the typical recovery outlook for a patient like him (Age : 73), and is the surgical risk generally preferred over the definitive radiation path for squamous cell cases?

Thanks,

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@manish28, welcome. I'm tagging a few members like @bakerwd4 @dkoehne @jayb1123 @dave640 who may be able to share their experiences with surgery after chemoradiation.

At the moment, it sounds like your dad has options. Since your dad is just beginning chemoradiation, might you be able to see how he does in treatment before having to make a decision?

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Profile picture for manuelo @manuelo

Hi, I am 66 and had surgery in October 2024. They removed most of my esophagus and part of my stomach . I was in decent physical shape but slightly overweight prior to surgery. I had every complication there is after surgery (leak, strictures, infection) but I was out after two weeks and snow skiing five months afterwards. Recovery in hospital can be uncomfortable at times but it is bearable and you eventually get better. My only issue was dealing with strictures for months after surgery but I did my own dilations at home and got well a few months ago so I am 100% healthy now. Make sure you get a good surgeon and hospital and your dad should be ok. Tell him not to worry. He is going to be ok. I can talk if it will help. I know it helped me speak to someone prior to. Feel free to reach back to me. My name is Manuel

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@manuelo
hello manuelo. my brother had his surgery feb 3, 2026. He was discharged feb. 10 , 2026 everything was going well until yesterday. His lung collapsed and there's an infection. he's in ICU now. he has a stent, feeding tube was put in and another tube draining his lung (i.e. infection fluids)... it seems now we're sitting here with the worst complications possible, and he didnt loose alot of his esophagus or stomach, it was stage 2 but now this has happened. your post gave me hope 🙏

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Profile picture for manish28 @manish28

My 73-year-old father was diagnosed with esophageal squamous cell carcinoma on Jan 1st. He is currently completing initial chemoradiation (23 sessions/40 Gy). Aside from an enlarged prostate causing nocturia (frequent nighttime urination), he is otherwise healthy with no history of hypertension or diabetes.

We are weighing two paths: an esophagectomy in 4-6 weeks versus definitive chemoradiation (continuing to 50+ Gy). Given his age and current health profile, what is the typical recovery outlook for a patient like him (Age : 73), and is the surgical risk generally preferred over the definitive radiation path for squamous cell cases?

Thanks,

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@manish28
Hi, from being with my wife through chemo radiation followed by Esophagectomy, I could make a a few suggestions based strictly on her experience:
1. Oncologists seem to know how much chemo radiation a patient can withstand. Don’t push beyond that.
2. Get your J-tube early (don’t wait until surgery) so that you can use it, as needed, to maintain strength and weight during chemo radiation. Also because, in case there’s a complication with the J-tube, you’ll be able to get that sorted out before surgery and not during surgical recovery.
3. Don’t get the surgery unless you’re going to get it at a high-volume hospital for Esophagectomy, such as Mayo/Richester. Others will do the operation but don’t have enough experience with the surgery or with the recovery.
4. The last two weeks of radiation and, especially, the two weeks following completion of radiation will probably be your 4 hardest weeks. Much harder, probably, than the operation or recovery from the operation. - You may be able to avoid this worst part by getting your J-tube early.
5. Everything after the operation has been manageable. - Many people live actively and happily afterwards although with some adjustments.

Wishing you and your father well,
Dave

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My wife and children were terrified when I went in for the surgery in April of 2023, so my three-year anniversary is approaching. My surgeon was up front with me that this is a difficult operation, and it does change your life. It also saves it. I was in ICU for 9 days I think, then two more in a focused room before release. If your dad can apply himself to the physical therapy which started Day 2 and get his legs working the post op care at home seems manageable. A recliner was my home for a month but I was able to shuffle to the bathroom on my own the first day home, shower on my own the third day, and as I recall within a week was taking slow laps around the driveway. Food, of course, was another journey. Staying on clear broth for a week, graduating to very soft scrambled eggs was heaven. Then learning my way around difficult foods like bread, eating small portions of protein several times a day instead of big meals. I went into surgery a tubby 230 lbs. and post-surgery my weight dropped as low as 145lbs. because of the (now) smaller stomach and eating restrictions. Now I'm about 165 lbs. and can eat most of my favorite meals. I've had 5 EGD dilations of my throat to stretch the scar tissue (and scope for reoccurrence of the cancer) but those are basically an outpatient procedure that improves swallowing. This month my oncologist put me on annual follow-ups! The largest change since the surgery for me has been developing blood sugar issues, dumping syndrome, and I now wear a CGM (Continuous Glucose Monitor) in my arm and struggle with severe blood sugar drops if I don't pay attention to my diet. Frustrating but manageable. I had the surgery at age 67 and I'm now 70, walk at least 5 miles every day , ride a bike in the summer. The surgery did save my life. Happy to talk with you or your dad just like people did with me when I was anticipating the operation.

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