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.

@lisa1teacher

I am having esophagectomy surgery on Feb 17. I have cancer only in the esophagus thank goodness. I know the surgery and feeding tube for 2 months after is going to be hard. I know it can take up to 2 years to be able to eat normally again. My cousin is 10 months post surgery and still has little appetite and it's hard to eat still. I know it will be a hard road. Then more chemo after recovery.

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Each of us has some similarities and differences in how we respond to post surgical recovery. I am 90 days out and doing pretty darn good. The surgery, hospital stay and recovery was tough, but gets easier every day. It seems like it was a long time ago. Frankly, the tube feeding process was harder on my wife than it was for me. I didn't feel much, except some pain at the incision point. Otherwise, I was sleeping during most feedings. I transitioned to solid foods after 3 weeks and eat small meals frequently. Watch your portions, chew alot and take your time. Finish eating based on portion size, not your perceived fullness level. The brain takes 20 minutes after eating to assess your feelings of fullness. After 90 days, I'm still 20 lbs less than before surgery, but I work out 2.5 hours a day (I'm a personal trainer) and gaining muscle and strength back quickly. Eating a high percentage of protein is key. I'm currently going through immunotherapy for one year total. It's early, but no side effects so far. I had a stage 4, locally advanced diagnosis, went through chemo/radiation and esophagectomy. The cancer was removed, margins clear and my oncologist says I'm a cancer survivor. I'll wait a few years before I say that, but I am very optimistic. Take it day by day, but look forward to better days ahead. Like I said, everyone's case is different, but a positive point of helps everyone. Best of luck to you!

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@lisa1teacher

I am having esophagectomy surgery on Feb 17. I have cancer only in the esophagus thank goodness. I know the surgery and feeding tube for 2 months after is going to be hard. I know it can take up to 2 years to be able to eat normally again. My cousin is 10 months post surgery and still has little appetite and it's hard to eat still. I know it will be a hard road. Then more chemo after recovery.

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Praying for your quick recovery. My husband is post op eating small meals still has j tube but hopefully to be removed next week. Will start post op FLOT chemo soon. He is out shoveling snow now. So keep positive.

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@lionsfan

Each of us has some similarities and differences in how we respond to post surgical recovery. I am 90 days out and doing pretty darn good. The surgery, hospital stay and recovery was tough, but gets easier every day. It seems like it was a long time ago. Frankly, the tube feeding process was harder on my wife than it was for me. I didn't feel much, except some pain at the incision point. Otherwise, I was sleeping during most feedings. I transitioned to solid foods after 3 weeks and eat small meals frequently. Watch your portions, chew alot and take your time. Finish eating based on portion size, not your perceived fullness level. The brain takes 20 minutes after eating to assess your feelings of fullness. After 90 days, I'm still 20 lbs less than before surgery, but I work out 2.5 hours a day (I'm a personal trainer) and gaining muscle and strength back quickly. Eating a high percentage of protein is key. I'm currently going through immunotherapy for one year total. It's early, but no side effects so far. I had a stage 4, locally advanced diagnosis, went through chemo/radiation and esophagectomy. The cancer was removed, margins clear and my oncologist says I'm a cancer survivor. I'll wait a few years before I say that, but I am very optimistic. Take it day by day, but look forward to better days ahead. Like I said, everyone's case is different, but a positive point of helps everyone. Best of luck to you!

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I love to hear these positive comments and outcomes!! Thank you

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@lionsfan

Each of us has some similarities and differences in how we respond to post surgical recovery. I am 90 days out and doing pretty darn good. The surgery, hospital stay and recovery was tough, but gets easier every day. It seems like it was a long time ago. Frankly, the tube feeding process was harder on my wife than it was for me. I didn't feel much, except some pain at the incision point. Otherwise, I was sleeping during most feedings. I transitioned to solid foods after 3 weeks and eat small meals frequently. Watch your portions, chew alot and take your time. Finish eating based on portion size, not your perceived fullness level. The brain takes 20 minutes after eating to assess your feelings of fullness. After 90 days, I'm still 20 lbs less than before surgery, but I work out 2.5 hours a day (I'm a personal trainer) and gaining muscle and strength back quickly. Eating a high percentage of protein is key. I'm currently going through immunotherapy for one year total. It's early, but no side effects so far. I had a stage 4, locally advanced diagnosis, went through chemo/radiation and esophagectomy. The cancer was removed, margins clear and my oncologist says I'm a cancer survivor. I'll wait a few years before I say that, but I am very optimistic. Take it day by day, but look forward to better days ahead. Like I said, everyone's case is different, but a positive point of helps everyone. Best of luck to you!

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Lisa, I'm 1 year post op esophagogastrectomy. I then had mets to the liver and am now 2 weeks post op from liver resection. now NED (No Evidence of Disease). I am down 53 pounds (190 to 147). I have a lot of muscle mass loss and in 2 weeks I can start working out again. I want professional help for this, but don't know who to turn to. Certainly not your average gym trainer. How would I go about finding appropriate rehab in Jacksonville, Fl? I don't just want to isolate major muscle groups. I need a comprehensive program to hit all muscles including back, accessory, and core.

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@stever1

Lisa, I'm 1 year post op esophagogastrectomy. I then had mets to the liver and am now 2 weeks post op from liver resection. now NED (No Evidence of Disease). I am down 53 pounds (190 to 147). I have a lot of muscle mass loss and in 2 weeks I can start working out again. I want professional help for this, but don't know who to turn to. Certainly not your average gym trainer. How would I go about finding appropriate rehab in Jacksonville, Fl? I don't just want to isolate major muscle groups. I need a comprehensive program to hit all muscles including back, accessory, and core.

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I would suggest you get a referral for physical therapy from your cancer care team. They will be able to carefully get you moving again and stronger overall. Once you're stronger, don't underestimate working with a personal trainer, particularly one with rehab experience. You want to make sure you work with a trainer who is certified as well. Some specialize in rehab, nutrition, functional and other areas. They also could be a nutrition specialist too. I'll admit I'm biased though since I'm a personal trainer up here in Wisconsin.:)

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@stever1

Lisa, I'm 1 year post op esophagogastrectomy. I then had mets to the liver and am now 2 weeks post op from liver resection. now NED (No Evidence of Disease). I am down 53 pounds (190 to 147). I have a lot of muscle mass loss and in 2 weeks I can start working out again. I want professional help for this, but don't know who to turn to. Certainly not your average gym trainer. How would I go about finding appropriate rehab in Jacksonville, Fl? I don't just want to isolate major muscle groups. I need a comprehensive program to hit all muscles including back, accessory, and core.

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I don't know. I live in Tennessee

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@lisa1teacher

I am having esophagectomy surgery on Feb 17. I have cancer only in the esophagus thank goodness. I know the surgery and feeding tube for 2 months after is going to be hard. I know it can take up to 2 years to be able to eat normally again. My cousin is 10 months post surgery and still has little appetite and it's hard to eat still. I know it will be a hard road. Then more chemo after recovery.

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Hi @lisa1teacher, thinking of you as you recovery from surgery. I look forward to hearing from you when you’re willing and able.

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@stever1

Lisa, I'm 1 year post op esophagogastrectomy. I then had mets to the liver and am now 2 weeks post op from liver resection. now NED (No Evidence of Disease). I am down 53 pounds (190 to 147). I have a lot of muscle mass loss and in 2 weeks I can start working out again. I want professional help for this, but don't know who to turn to. Certainly not your average gym trainer. How would I go about finding appropriate rehab in Jacksonville, Fl? I don't just want to isolate major muscle groups. I need a comprehensive program to hit all muscles including back, accessory, and core.

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Consult with the rehab people at the Mayo Clinic!!! Absolutely the best place for you to get a consultation and recommendations. See my epistle for the Barrett's comments.

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