Esophagectomy: What is life like Afterwards?

how do i join the zoom calls?

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'm surprised that stage 4 esophageal cancer is considered non-operatable & incurable. I was diagnosed with stage 4 EC just before Christmas 2019. I started chemo & radiation soon after at the new Leonard Cancer Institute here in So. California. Surgery was 10+ hours. Cancer had destroyed part of the esophagus and stomach was detached and moved up higher in my chest. Surgery went well from all reports till I slipped into a deep coma that lasted 2 months. At that point, doctor's held out no hope of my coming out of the coma and had my death certificate ready to sign but needed approval from my health advocate. Thankfully, she knew my health background and the serious issues I'd already overcome so she refused to authorize the death certificate. I came out of the coma about 2 weeks later. From there it was a series of 4 re-habs with J Tube, very little rehab at any of the facilities, and because the head of the bed was raised to keep gerd down, my neck is permanently unable to return to it's original position. It leans forward which throws off one's balance. I'm 4 yrs out from surgery and still need esophageal stretchings at the hospital from time to time. Very limited what I can eat. But despite all the issues, I survived & though it's not the life I was used to prior to this cancer, I am alive, just living life differently than I expected. I've found it rewarding to talk with a few people who have dealt this cancer as it seems no 2 people have had the exact same problems before & post surgery.

The brutal path you endured is difficult to hear and imagine going through- you’re obviously an immensely strong individual. I hope things continue to improve to a quality of life that you deserve and gives you joy , better comfort and purpose.
Best of luck to you