Esophagectomy: What is life like Afterwards?

Everyone is different. My husband had an esophagectomy in June 2023—also small and isolated cancer—and he didn't need chemo or radiation. In the 14-months since surgery he has suffered non-stop with nausea and/or vomiting. He was on a j-tube for an entire year but in that time he was unable to tolerate any of the enteral formulas that we tried. So the j-tube was removed and he is now on TPN (IV nutrition). He's had pneumonia four times and is currently hospitalized again with pneumonia. Food no longer tastes the same to him and he's lost a total of about 85 lbs. He's always weak and tired and his quality of life sucks.

On the other hand, he speaks with another man who had the same surgery a few months before hubby and that guy is 100% back to normal. So, as I said, everyone is different. Hopefully your dad will have an easy time of it but it's likely that he'll at least have some issues.

I’m one year out from surgery, doing well. Hasn’t been easy, but not awful either.

He will handle it well, I bet.

I’m happy to talk if you want to do that. I try to help where I can.

My first thought was that this question has to be from my daughter! My husband’s esophagectomy is scheduled for August 14, after several delays because of cardio/ vascular procedures. He did have 5 weeks of chemo/radiation treatments, and has lost so much weight already that I can’t imagine him losing any more. We know very little about what might come next. How long he’ll be hospitalized, what recovery might look like, or long term expectations. I will be following this post. Thanks for posting, and my prayers go out to your dad.

I had my procedure in April of 2023. It is a tough surgery but with a good team (I had a great one!) very survivable. Released from the hospital to home after about 12 days and by aggressively working with the Physical Therapist in the hospital I was able to get around the house with the help of my wife, slowly, from Day 1. If anything, we overprepared for my release by purchasing a walker and putting rails around a toilet that I didn't really need. A week of shuffling around the house, then eventually the driveway and withing a few weeks very slow walks around the block. Transitioned from broth to very soft scrambled eggs and soup within 10 days of release.
The surgery does change your body drastically. For me it was continued weight loss. I was 67 at the time of surgery, 6 ft. tall and weighed a tubby 230 lbs. before I started having swallowing difficulties and probably about 215 at surgery. Post release from the hospital probably 185 and this morning 155 lbs. and still slowly losing weight. Appetite is suppressed and my stomach of course is much smaller. A few months post surgery I developed Dumping Syndrome which is common. Now my blood sugar is all over the map after every snack, spiking very high and dropping quickly to dangerous lows. I wear a Libre 3 in arm glucose monitor and keep glucose gel and tablets near me at all times to react to the lows. An enormous pain in the ass but manageable. I used to love craft breweries and good Scotch but my body no longer tolerates alcohol. Not the worst thing in the world but not how I pictured retirement. I've learned to sleep with my head elevated on an adjustable bed.
The positives: more years of life with my beautiful wife and my grandchildren. I walk my dog every day, ride my bike every morning. No more chemo port messing up the lines of my t-shirt.
I've posted in this forum before my two firm rules going into the surgery: Express your gratitude every minute to every staff member at the hospital. There will be lots of blood draws and bandage changes and blood pressure checks. Those people are saving your life and I was astounded overhearing patients screaming at them in other rooms. I made sure they knew I appreciated every finger-prick. Most importantly take advantage of every opportunity they give you to walk around after surgery. You absolutely won't want to get out of bed. No exception, move and build strength. ASK night nurses to let you walk. It really pays off.
You've got this.

Hello , my experience with the surgery has been up and down but mostly up.
I was diagnosed on Thanksgiving Day 2023.
Started radiation & chemotherapy just after Christmas.
Finished up in early February.
Ivor Lewis surgery took place April 9. The procedure took 12+ hours.
I spent about 3 days in ICU but felt pretty good considering and was up walking with a walker within a day after surgery. My total hospital stay was 11 days. I was discharged with a J tube which they expected would be for about 6 weeks.
Within a week of being discharged my new rebuilt esophagus developed a leak causing pneumonia & a blood infection requiring another surgery. The doctors were able to get the infections under control with a battery of antibiotics and I was discharged after another 11 days .
It is now the end of July and I’m off most medications and feeding tube and started back to work 7/29.
Occasionally I have swallowing issues but it’s all about learning to eat the right way with my new plumbing.
My care team has been outstanding as well as my family /friends support team!

I have stage 4 which is considered inoperable and incurable. Much time was wasted in ruling out cardiac causes for my pain, and the swallowing difficulties did not manifest until early spring. By the time I saw my gastroenterologist i was unable to eat and sometimes unable to drink. I got my diagnosis- stage 4, spread to spine and that evening went to the ER due to extreme pain and dehydration. They admitted me and 2 Days later got a G tube so I could get nutrients. I’m 5 “ 7” My regular weight is around 135 and I bottomed out at 115 lbs about a week after being discharged. I had 10 radiation treatments ( to address the spinal pain) and while it had no effect on the pain, it caused esophagitis that was quite miserable and is only now really improving. I just finished my 3rd round of chemo
( 3 to go) which now included 2 mutation -targeting immunotherapy's drugs that might have life-saving effects.
Thus, the past few weeks have been the worst because of the esophagitis, continued severe pain, and chemo side effects. I’ve started to gain weight again albeit slowly, and am now able to slowly drink fluids. There are a few days following each chemo cycle where the side effects really wipe me out, but I’m now able to work 4 hour days a few times a week. I’m hoping each day for signs of improvement which I would judge by a decrease in pain, and a possibility of swallowing
“ cream of “ soups and then sautéed foods ( such as wet mashed potatoes with gravy) Having not eaten by mouth since late May, I am building quite a food wish-list.
I want to experience an improvement that shows real tumor shrinking ,
considering the fact that chemo and immunotherapy are all I’ve got - surgery being off the table.

I don’t expect any new pet-scans or another endoscopy until the 6th and final chemo is done.

Best of luck to those on this thread who are suffering with EC . Keep strong in faith

I probably don't have much to say other than hang in there. My husband was diagnosed with Stage 2 in March. He finished chemo and radiation about 5 weeks ago. He has a J tube. He has adjusted to that. One week ago he started eating small amounts of soft foods. Since he is very frail and had lots of problems with chemo disrupting his other medical conditions, the surgeon does not feel surgery would be safe for him. So anyway-PET scan this week. Cancer sucks. Immunotherapy in near future.

I had surgery the 31st of October 2023, 10 days in the hospital. Sent home with the j tube that was supposed to be five or six weeks I had had it in for about 4 months. Had a few endoscopies to stretch my esophagus so I could eat solid foods better.
Everyone's different and I've learned you have to be patient because things don't just change overnight and get better. It's definitely scary but a person can get through it and lead a pretty normal life. Wish you and your family well.

@bakerwd4, I hope you have seen all the helpful posts from members about life after and esophagectomy. As you and your father and family prepare for surgery and beyond, you might also want to check out these related discussions:
- Going for pre-ops for esophagectomy
https://connect.mayoclinic.org/discussion/going-for-pre-ops-for-esophagectomy/
- Esophagectomy surgery: Want to know what to expect
https://connect.mayoclinic.org/discussion/esophagectomy-surgery/
- Transhiatal esophagectomy surgery: What is recovery like?
https://connect.mayoclinic.org/discussion/esophagectomy-transhiatal-surgery/
- My husband is having an Esophagectomy: What does recovery look like?
https://connect.mayoclinic.org/discussion/my-husband-is-having-an-esophagectomy-in-two-weeks/
@bakerwd4, how are you doing as the surgery date approaches? Any further questions come up in the meantime?

I have esophageal cancer went through chemotherapy and radiation. I just had my surgery 9 days ago. I was in ICU for 1 day hospital for 6 more. I am home now. I have a feeding tube but I can also drink liquids. I go for walks 3x a day. There is pain associated with the incision but I am tolerating it. It is a life changing surgery but definitely worth it. I was also scared but since surgery I see a future.