Living life after treatment and surgery for Esophageal Cancer.

Posted by cbnova @cbnova, Feb 26, 2023

In December of 2020 I was diagnosed with stage 3 Esophageal Cancer. After chemo and radiation in February and March of 2021, I had surgery to remove the cancer in May of 2021. For me the surgery and recovery were probably the toughest part of the process. Not to say the chemo and radiation were easy, they were not but the changes the surgical part of treatments have changed my life from here on. Life after I got home from the hospital at first would not have been possible without a lot of help. Little things you take for granted such as showering or even walking about your home couldn't be accomplished without help. Those things got easier over time but it was a challenge. Getting use to having to sleep at a 30° angle because laying flat means anything in you new redesigned stomach comes up while you sleep(very uncomfortable and dangerous for your lungs). With the new design of your stomach food is also a bit of a challenge. They give you a list of foods you will probably be able to eat and a list of foods you probably should stay away from. With me I found after time that you have to try different foods and your body tells you quickly if you can or can not eat that again. You will also find portions you can tolerate will be much less than you were use to. This means you eat many more times per day. In the end it has been worth it for me because I have been cancer free on my 6 month scans so far . Another scan in a month which will be 2 years since surgery, I pray they continue to show me cancer free. If anyone has any questions on my journey so far please reach out. I have a friend who mentored me in my journey which helped tremendously for me. As I have said and believe since my journey started we are all" STRONGER TOGETHER "

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

@sclnz

What time do you eat? Do you eat anything after eating? Do you drink water? What time do you go to bed? I am curious about your routine in detail and would like to try it. Maybe we have a lot to learn from you. Our reflux is not acid, it is food coming from the stomach.

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Question: What do you mean by "Our reflux" is not acid?

Food coming from the stomach is not being digested properly.. You have hydrocloric acid and bile. Here is a description of Bile.
Bile is composed of ingredients designed to digest fat. While it isn't an acidic formula, it's⁠ harsh on the sensitive linings of your stomach and esophagus. Chronic bile reflux can erode these protective linings, causing painful inflammation and, eventually, tissue damage (esophagitis)
This comes from the Cleveland Clinic: What are the possible complications of bile reflux?
Chronic inflammation of your stomach lining (gastritis) can lead to stomach ulcers and is associated with a higher risk of stomach cancer. Inflammation of your esophagus (esophagitis) can cause ulcers, scarring and cellular changes to your lining (Barrett’s Esophagus), which is occasionally a precursor to esophageal cancer. These risks are also associated with chronic gastroesophageal acid reflux (GERD), but studies show that bile reflux multiplies the risk.
Cleveland Clinic as a great discussion/education on this. Hopefully now the powers to be will let me post this.
How can I tell if I have acid reflux or bile reflux?
Symptoms of acid reflux and bile reflux in your esophagus are virtually the same. If your symptoms include vomit, check the color. Bile has a tell-tale yellow tint. If you also have symptoms of bile reflux in your stomach, such as abdominal pain and indigestion, that might be an important clue.

In general, acid reflux is considered more common and more likely than bile reflux. But if medications to treat acid reflux don’t relieve your symptoms, let your healthcare provider know. They can test the reflux fluid in your esophagus to detect the presence of bile.
This is a great article on the mechanics of this non acidic bile, as it still causes harm.
Hope this helps someone.
12 year vet. of esophagial cancer. Keep on fighting.. bless all.

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How can I tell if I have acid reflux or bile reflux?
Symptoms of acid reflux and bile reflux in your esophagus are virtually the same. If your symptoms include vomit, check the color. Bile has a tell-tale yellow tint. If you also have symptoms of bile reflux in your stomach, such as abdominal pain and indigestion, that might be an important clue.

In general, acid reflux is considered more common and more likely than bile reflux. But if medications to treat acid reflux don’t relieve your symptoms, let your healthcare provider know. They can test the reflux fluid in your esophagus to detect the presence of bile.

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Good evening fellow survivors took a while to do this but my name is Gene I'm 6 yrs out of surgery i was 200-210 pre surgery and now weigh 145 post surgery steady now for a couple years now thought I could gain it back like people do after I guess kinda similar to gastric bypass lol but unable too. like most of you here was caught off guard with some things the doc didn't tell me understandable like some have said Everyone is different . Still haven't been able to lay flat sleeping tried but we all know what happens when we lay flat to long not enjoyable unlike some i can eat really what I want just smash small portions except milkshakes and chocolate to filling I guess I have learned not to overeat bec that means prob getting sick a not so enjoyable event. Really miss enjoying a good meal but food for me now I really don't get excited it's just blah anyone else encounter this . Going out to eat is ok but prepare to take most of it home just a couple questions for my fellow survivors
Anyone find a way to intake enough calories for working out and not dropping any more weight if so how do you prepare for the gym
Also has food lost that omg it's so good bec it really has for me sometimes I eat just to eat I think just wondering if anyone found a way to get back to loving the taste and enjoying it thanks for any replies and congrats to everyone on the recoveries

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@gft72

Good evening fellow survivors took a while to do this but my name is Gene I'm 6 yrs out of surgery i was 200-210 pre surgery and now weigh 145 post surgery steady now for a couple years now thought I could gain it back like people do after I guess kinda similar to gastric bypass lol but unable too. like most of you here was caught off guard with some things the doc didn't tell me understandable like some have said Everyone is different . Still haven't been able to lay flat sleeping tried but we all know what happens when we lay flat to long not enjoyable unlike some i can eat really what I want just smash small portions except milkshakes and chocolate to filling I guess I have learned not to overeat bec that means prob getting sick a not so enjoyable event. Really miss enjoying a good meal but food for me now I really don't get excited it's just blah anyone else encounter this . Going out to eat is ok but prepare to take most of it home just a couple questions for my fellow survivors
Anyone find a way to intake enough calories for working out and not dropping any more weight if so how do you prepare for the gym
Also has food lost that omg it's so good bec it really has for me sometimes I eat just to eat I think just wondering if anyone found a way to get back to loving the taste and enjoying it thanks for any replies and congrats to everyone on the recoveries

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gft72
It's been over 4 years since I had chemo and radiation for EC which cleared it up. I did have a feeding tube for a while and could not eat normally. I lost 15 pounds and have kept it off but I'm back to enjoying food again. I hope you reach the same point. Let us know?
Don

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@slonhurvivor11years

How can I tell if I have acid reflux or bile reflux?
Symptoms of acid reflux and bile reflux in your esophagus are virtually the same. If your symptoms include vomit, check the color. Bile has a tell-tale yellow tint. If you also have symptoms of bile reflux in your stomach, such as abdominal pain and indigestion, that might be an important clue.

In general, acid reflux is considered more common and more likely than bile reflux. But if medications to treat acid reflux don’t relieve your symptoms, let your healthcare provider know. They can test the reflux fluid in your esophagus to detect the presence of bile.

Jump to this post

benim anlatmak istediğim asit reflü veya safra reflü değil. mideniz dolu hissettiğinizde ve yattığınızda ağzınıza doğru gelen besinler oluyor mu? yattıktan sonraki saat içinde. midesinde hala yemek olduğu için ve artık sfinkter olmadığı için öğütülmüş yemek yani kimus boğazına geliyor. örneğin gündüz öne eğildiğinde, örneğin sola doğru yattığında (midesinin sağda olduğu sölediler) ağzına yemek geliyor. tabiki sindirilmiş bir yemek ama kesinlikle safra veya mide asidi değil. bunu yaşayan var mı?

Google autotranslated from Turkish to English
What I mean is not acid reflux or bile reflux. When you feel your stomach is full and you lie down, do you have food coming up to your mouth? Within the hour after you lie down. Since there is still food in your stomach and there is no sphincter anymore, the ground food, or chyme, comes up to your throat. For example, when you bend forward during the day, for example, when you lie down on your left (they said your stomach is on the right), food comes up to your mouth. Of course it is digested food, but it is definitely not bile or stomach acid. Has anyone experienced this?

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Two years post-Ivor Lewis and my weight has leveled out at about 155lbs (from 230 at surgery) and able to eat decent portions of almost everything. Biggest challenge has been extreme blood sugar issues post-surgery that were never an issue prior. My blood glucose spikes after meals then drops dangerously low originally to a point where I would break out in drenching sweats and become disoriented/hallucinate. Self-medicated for a while with candy and fruit juice when I suspected a drop. Finally prescribed a continuous glucose monitor (Libre 3) in my arm which lets me stay in front of daily episodes with glucose tablets and liquid glucose shots. Have been treated by a reputable endocrinologist who did her best but finally said she was out of ideas. Have not seen this issue discussed in any of the posts. On the plus side having a two year CT Scan Thursday and fingers crossed for an all clear.

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