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How have others found the return to eating post esophageal surgery?
Hi there- I had previously introduced myself (Dana) in response to someone else's post- so quick background :
I am 51/F- very active (daily runner/ Crossfitter) Diagnosed 7/30/25 with Stage 3 SCC- in mid esophagus, local spread only to lymph node. Did chemo and radiation (6 chemo treatments, radiations 5x week for 6 weeks). Tolerated chemo/radiation very well- was able to continue to work and exercise daily throughout. At repeat PET scan I showed a complete/ near complete clinical response (It was unclear if the remaining spot was inflamation or tumor given it's size).
On 11/3/25 did esophagectomy - pathology showed the remaining spot was still the tumor, but the were able to remove with clear margin. Because there was still tumor I imagine I'll be doing immunotherapy.
I'm wondering how others have found the return to eating post surgery- I was released with a soft food diet but am finding more and more difficulty with texture going down. And the noises that come from within me sound like I am possessed by monsters.....does this settle down?
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@deemold
Hi
Just wondering how you are getting on now? I had my surgery about a month before you. I am also younger for this cancer, 44 when diagnosed. Dont drink ir smoke and regularly excercise at the gym and swim, eat very healthily, so was absolutely shocked when it was found after 4 months of very painful chest and reduced eating as a result.
I had chemo , surgery then radiation.
Unfortunately I got an infection in my throat incision, so had to have a jj tube for feeding for 6 months post surgery.
When that healed and I tried to eat, I had a stricture! What a pain! I also got regular dilations, but they couldn't stretch enough, so got a temporary stent, which was AMAZING! Could eat most things and no regurgitation, what a dream. It couldn't stay forever, so came out, but stretched the tube well. I still get dilations every 6 weeks, as theres a bit of a kink in the tube which needs to be straightened out. But I can now eat much more, and only feel sick if I eat too much, quickly, dont chew my food enough (regurgitation) or eat sugary stuff or coffee on an empty stomach.
I hope you are doing okay or better now 😀
Leila
@leilac - I am so happy to hear you are doing well. AND- so nice to hear from another "atypical age and lifestyle" person...it was such a mind blowing thing to be dx with this. It sounds like you have been through the ringer!
I am doing better with the strictures- some tightening being noticed, but not severe enough yet for another dilation.
Bigger issue right now is/was my immunotherapy- we finally made the call to discontinue after 3 months due to the side effects being too severe (and not reversible....that was fun to learn).
The learning curve continues.
@deemold
I had a similar situation - 54 Yr old at time of surgery - 8/19/2025 - tumor at esophageal stomach junction, Folfox5 chemo no radiation due to a possible heart issue, had Ivor Lewis procedure and was in the hospital for only 6 days. returned home on liquid diet with J tube feeding... that is garbage nutrition in my opinion and I could not wait to get off of it as my diet is extremely low/no carb. swallowing sometime is still rough, but seldom and only one or two swallows. I have not had dumping issues, but I am surprised at the small volume of food I can eat compared to what I used to eat. I will be starting immunotherapy within a few weeks - Keytruda - after PET and CT scans showed no evidence of disease but the Signatera labs show an upward trend over the last two tests .53 MTM/mL to 1.97 MTM/mL ...and we will see how that goes... I know it has only been 8 months post op for me, but I am confident I will get back to "normal" whatever that is after this surgery... dilation procedures for me so far have not been discussed but I am learning about this.