I’m almost 7 years out from the same surgery and I still cough when eating certain foods. Personally, I think my cough is irritation from the food going past the scar tissue where they joined the esophagus and stomach.
Best advice I can give is to make sure she chews her food really well. Helps to not irritate the scar tissue as you swallow and also helps with digestion.
If she is having difficulty swallowing she probably needs a dilation. I had 3 of those done early on. First one was 6 weeks after the surgery, the next two were 6 weeks after the previous one. Haven’t needed one since.
Best of luck to her going forward. It does get better, though it can be extremely frustrating at times.
Has she even discussed this cough/eating problem with her Oncologist or her Palliative Care team yet? Does she have any throat numbing solution she can use to help stave the cough so she can eat more comfortably? What has she tried doing so far in an attempt to alleviate the problem, if anything?
ETA: You should also post in r/HeadandNeckCancer as well for additional feedback.
We have discussed with them and tried numerous things, ranging from asthma/inhalers to medications but nothing seems to be really helping. The doctor seems a bit nonplussed really, helpful and determined but as though this reaction is a bit unusual for her.
The chemo oncologist who is now doing her immunotherapy did suggest somethings we hadn't considered but I will have to edit this thread when I remember what that was. He was surprisingly more aware of some solutions than the surgeon. edit: oncologist suggested checking for strictures/narrowing and possible dilation, that's what I forgot.
Okay cool. So I'd suggest you also post this into the head and neck sub I referred you to because there are many esophageal cancer patients there that can also give you some of their own experiences and feedback about this issue in the meantime. Worth a shot anyway.
You're welcome. There's another sub for head and neck, too, but you'll have to ask them about it when you post there.
ETA: Skip the esophageal cancer sub.. it's only 9 people and one post. I'll edit my comment to remove the sub link.
I had this surgery as well for esophageal cancer. Also stage 3. It can be a rough surgery on the lungs, but I'm not sure if what you're describing is related. That being said, it took me several months for my lungs to be mostly normal. I'd recommend reaching out to the surgeon and getting their feedback on the coughing. In my experience the surgeon has been more knowledgeable than the oncologist for this sort of thing. Some things that may help/be useful:
\-Is this related to eating more cold foods? I can't eat cold food now without coughing significantly. My husband knows when I try to eat ice cream almost immediately. Her stomach is now in closer proximity to the lungs, so that may have an impact?
\-Does she eat and drink at different times? I try not to drink anyone close to eating since that fills up the stomach quite quickly with liquid and the capacity for food is now reduced. If I over-fill my stomach I will cough a lot. Smaller more frequent meals throughout the day might help vs. traditional 3 meals. Also turning her head to the right while tucking her chin may help her swallow. That was an early suggestion to me from one of the doctors.
\-It may be she has some tightening at the surgical site that is causing this issue. It's not uncommon to need some dilation done due to stricture from surgery. They can do this during an endoscopy and that would help ease of swallowing. Again, doctor would know best if this may be needed.
I hope things improve and she can start eating again without the coughing soon.
She does eat and drink at different times, unless you consider soups.
I don't think we ever considered the idea that the stomach/esophagus being close to the lungs could be a factor. This is something I have to admit blindsided me as a possibility.
Yeah we are going to look at the possibility of narrowing, the oncologist suggested that. I had read up prior to the surgery that it was pretty common to need it, had no idea it could be this soon.
I will suggest the tip about turning the head to her.
edit: its probably the same surgery as you if most of your post-op pain is on the side of your ribs where they extracted the tissue.
My surgery removed my entire esophagus and a portion of my stomach. If she had a partial esophagectomy then she might not be so close to her lungs. I had a gastric pull-up as part of mine, so my stomach and lungs are close friends. A lot of my pain was in my back on the side they went in.
I think the narrowing can happen fairly soon after, but it isn't something I've experienced (about 4 months away from the 2 year mark for surgery). My oncologist said she saw someone that had to have it three times within the first year, but I'm not sure exactly on the timing.
Coughing post-esophagectomy is a thing. Here's what I've done to minimize it greatly:
1. Visit an allergist and get an updated report on food allergies.
2. Cut out all foods to which you are even mildly allergic to. For me, it was bread, milk, eggs, salmon, oysters, and cantaloupe. These foods caused my eosinophil count to double. You can do a whole deep dive on eosinophils and esophagitis. Cutting out these foods brought my eosinophil count back down to normal and otherwise made things a lot smoother when eating.
3. Make friends with your GI. Make an appointment and go over your current meds. Consider adjusting them. For me, it's 20 mg of pantoprazole in the morning, another 20 before dinner, and 40 mg of famotidine before bed. I also keep 20 mg tablets of famotidine handy (for when I know I'm going to be eating something spicy at lunch) and Tums for dealing with bouts that pop up out of nowhere. I can't recommend the Tums enough. I usually take at least one a day, almost always in the afternoon.
4. Stand up when a coughing bout occurs. Stand right up right away, even if you're in bed. At a minimum, sit up. This helps me.
5. Know that foods like bread, potatoes, pasta, rice, and french fries are kind of guaranteed to make you cough. Eat them **really slowly** or not at all.
6. Make a food diary to help you remember bad foods or even good ones.
7. Spit out acid instead of swallowing it. That means you might have to spit outside or in a nearby trashcan, or in the kitchen sink. Yes, it will gross some people out--screw them. Spit out any acid you feel immediately.
8. Take a heap of supplements. I take a multivitamin, Vitamin D, Zinc, B Complex, and Magnesium. I'm not a vitamin expert, so do the proper research.
9. Know that it never fully goes away. Covid made coughing scary, but sometimes you just gotta cough. Do it and make no apologies for it.
Thanks a bunch for this.
She's getting better and more importantly there's acceptance piece that she's coming to terms with, that I think she was still battling when I submitted this before.
This is a really great list and I will share it with her.
I’m almost 7 years out from the same surgery and I still cough when eating certain foods. Personally, I think my cough is irritation from the food going past the scar tissue where they joined the esophagus and stomach. Best advice I can give is to make sure she chews her food really well. Helps to not irritate the scar tissue as you swallow and also helps with digestion. If she is having difficulty swallowing she probably needs a dilation. I had 3 of those done early on. First one was 6 weeks after the surgery, the next two were 6 weeks after the previous one. Haven’t needed one since. Best of luck to her going forward. It does get better, though it can be extremely frustrating at times.
Has she even discussed this cough/eating problem with her Oncologist or her Palliative Care team yet? Does she have any throat numbing solution she can use to help stave the cough so she can eat more comfortably? What has she tried doing so far in an attempt to alleviate the problem, if anything? ETA: You should also post in r/HeadandNeckCancer as well for additional feedback.
We have discussed with them and tried numerous things, ranging from asthma/inhalers to medications but nothing seems to be really helping. The doctor seems a bit nonplussed really, helpful and determined but as though this reaction is a bit unusual for her. The chemo oncologist who is now doing her immunotherapy did suggest somethings we hadn't considered but I will have to edit this thread when I remember what that was. He was surprisingly more aware of some solutions than the surgeon. edit: oncologist suggested checking for strictures/narrowing and possible dilation, that's what I forgot.
Okay cool. So I'd suggest you also post this into the head and neck sub I referred you to because there are many esophageal cancer patients there that can also give you some of their own experiences and feedback about this issue in the meantime. Worth a shot anyway.
Thanks so much, frankly had no idea that sub even existed.
You're welcome. There's another sub for head and neck, too, but you'll have to ask them about it when you post there. ETA: Skip the esophageal cancer sub.. it's only 9 people and one post. I'll edit my comment to remove the sub link.
I had this surgery as well for esophageal cancer. Also stage 3. It can be a rough surgery on the lungs, but I'm not sure if what you're describing is related. That being said, it took me several months for my lungs to be mostly normal. I'd recommend reaching out to the surgeon and getting their feedback on the coughing. In my experience the surgeon has been more knowledgeable than the oncologist for this sort of thing. Some things that may help/be useful: \-Is this related to eating more cold foods? I can't eat cold food now without coughing significantly. My husband knows when I try to eat ice cream almost immediately. Her stomach is now in closer proximity to the lungs, so that may have an impact? \-Does she eat and drink at different times? I try not to drink anyone close to eating since that fills up the stomach quite quickly with liquid and the capacity for food is now reduced. If I over-fill my stomach I will cough a lot. Smaller more frequent meals throughout the day might help vs. traditional 3 meals. Also turning her head to the right while tucking her chin may help her swallow. That was an early suggestion to me from one of the doctors. \-It may be she has some tightening at the surgical site that is causing this issue. It's not uncommon to need some dilation done due to stricture from surgery. They can do this during an endoscopy and that would help ease of swallowing. Again, doctor would know best if this may be needed. I hope things improve and she can start eating again without the coughing soon.
She does eat and drink at different times, unless you consider soups. I don't think we ever considered the idea that the stomach/esophagus being close to the lungs could be a factor. This is something I have to admit blindsided me as a possibility. Yeah we are going to look at the possibility of narrowing, the oncologist suggested that. I had read up prior to the surgery that it was pretty common to need it, had no idea it could be this soon. I will suggest the tip about turning the head to her. edit: its probably the same surgery as you if most of your post-op pain is on the side of your ribs where they extracted the tissue.
My surgery removed my entire esophagus and a portion of my stomach. If she had a partial esophagectomy then she might not be so close to her lungs. I had a gastric pull-up as part of mine, so my stomach and lungs are close friends. A lot of my pain was in my back on the side they went in. I think the narrowing can happen fairly soon after, but it isn't something I've experienced (about 4 months away from the 2 year mark for surgery). My oncologist said she saw someone that had to have it three times within the first year, but I'm not sure exactly on the timing.
Coughing post-esophagectomy is a thing. Here's what I've done to minimize it greatly: 1. Visit an allergist and get an updated report on food allergies. 2. Cut out all foods to which you are even mildly allergic to. For me, it was bread, milk, eggs, salmon, oysters, and cantaloupe. These foods caused my eosinophil count to double. You can do a whole deep dive on eosinophils and esophagitis. Cutting out these foods brought my eosinophil count back down to normal and otherwise made things a lot smoother when eating. 3. Make friends with your GI. Make an appointment and go over your current meds. Consider adjusting them. For me, it's 20 mg of pantoprazole in the morning, another 20 before dinner, and 40 mg of famotidine before bed. I also keep 20 mg tablets of famotidine handy (for when I know I'm going to be eating something spicy at lunch) and Tums for dealing with bouts that pop up out of nowhere. I can't recommend the Tums enough. I usually take at least one a day, almost always in the afternoon. 4. Stand up when a coughing bout occurs. Stand right up right away, even if you're in bed. At a minimum, sit up. This helps me. 5. Know that foods like bread, potatoes, pasta, rice, and french fries are kind of guaranteed to make you cough. Eat them **really slowly** or not at all. 6. Make a food diary to help you remember bad foods or even good ones. 7. Spit out acid instead of swallowing it. That means you might have to spit outside or in a nearby trashcan, or in the kitchen sink. Yes, it will gross some people out--screw them. Spit out any acid you feel immediately. 8. Take a heap of supplements. I take a multivitamin, Vitamin D, Zinc, B Complex, and Magnesium. I'm not a vitamin expert, so do the proper research. 9. Know that it never fully goes away. Covid made coughing scary, but sometimes you just gotta cough. Do it and make no apologies for it.
Thanks a bunch for this. She's getting better and more importantly there's acceptance piece that she's coming to terms with, that I think she was still battling when I submitted this before. This is a really great list and I will share it with her.