Looking for others' experiences with Esophageal Cancer treatments

Posted by zzonner @zzonner, May 24, 2023

I am looking for folks that have been through this process, particularly in Phoenix. Any recommendations? I am in week 3 of Chemo and Proton Beam here in Phoenix and things are going well. Stage 2B or 3, with no Mets, yet. 3 more weeks to go then 6-8 weeks of healing prior to surgery. Trying to stay focused on getting through the chemo and radiation, then deal with the surgery. I am near 70, in good health and holding my weight. What support mechanisms do you recommend? I am talking to the Social Workers, Dieticians, and my doctors, Sio, Ahn and Beamer. Do you have any experience with any of them? I live 10 minutes from the hospital, which is nice. To this point, I can't say enough about the care and professionalism. Mayo is simply the best. To say I am nervous about the surgery would be an understatement. I am very active, built like a linebacker, and worried about the future. I looking for someone to bounce things off of as I move down this challenging road. My wife is my hero and keeps me focused, as do my 5 children and 5 grandkids. I have everything to live for. Thanks for listening.

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

@frankieboy1017

Hey zzoner. Just thinking about you and hoping you continue to improve each day. Any idea how long they want you in hospital? Everyone is different, of course, but I was in for two full weeks. Hang in there and when you are up to it let me know how you are doing.

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Recovery is going well. Walking the halls 40 minutes a day. Had the leak test today and initial results were good, no leaks, No official results. Haven't eaten since Monday at 6 pm, 7 days. PA says I should not be hungry as I am on 65ml per hour of feeding tube but I say BS. I need some flavor on my lips. Pisses me off. Thinking discharge Tuesday or Wednesday but who knows. They are not in any hurry here. Pooping has been fun.

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@dsd1939

To you folks coping with EC and the great volunteers, I want to express my appeciation to all who post their experiences and wishes for a return to good health. I cared for my 86 year old wife for the year following her diagnosis before she passed. 12 weeks of chemo and radiation, shrank the tumor, but the cancer spread to the liver, kidneys, and lungs.
While it wasn't Mayo Clinc, the Comprehensive Cancer Center here in Vegas worked valiantly to save her. Healthy all her life, she had no indication until she was unable to swallow. I tell all who will listen to get regular checkups, especially if you're using acid reflux medicine.

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Condolences to you on the passing of your wife

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@gardenlady1116

Condolences to you on the passing of your wife

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Thank you so much, but it's been tough.....
Church grief support has been helpful, but family is not close.
A very slow process.....

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@zzonner

Recovery is going well. Walking the halls 40 minutes a day. Had the leak test today and initial results were good, no leaks, No official results. Haven't eaten since Monday at 6 pm, 7 days. PA says I should not be hungry as I am on 65ml per hour of feeding tube but I say BS. I need some flavor on my lips. Pisses me off. Thinking discharge Tuesday or Wednesday but who knows. They are not in any hurry here. Pooping has been fun.

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I am not meaning to evade your privacy. If you are willing to share, what type of Esophageal cancer were you diagnosed with? I was diagnosed with Barrett's Esophagus without dysplasia three years ago. It is important to me to learn from others and build community.

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@dsd1939

Thank you so much, but it's been tough.....
Church grief support has been helpful, but family is not close.
A very slow process.....

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God and Jesus are available to you 24/7

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Absolutely. I am being discharged tomorrow so intend to open another feed on Mayo Connect explaining everything that can go right with this procedure and answer everyone’s questions. Probably midweek next week.

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@dsd1939

Thank you so much, but it's been tough.....
Church grief support has been helpful, but family is not close.
A very slow process.....

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@dsd1939, you may also wish to join this support group on Mayo Clinic Connect:
- Loss & Grief https://connect.mayoclinic.org/group/loss-grief/

Grief is a slow process with highs and lows. You're not alone.

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@colleenyoung

@dsd1939, you may also wish to join this support group on Mayo Clinic Connect:
- Loss & Grief https://connect.mayoclinic.org/group/loss-grief/

Grief is a slow process with highs and lows. You're not alone.

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I'll consider it, I'm finding out how slow it is.... Thank you for reaching out, I suppose my testimony was my way of reaching out.

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@kevinwillms

I am not meaning to evade your privacy. If you are willing to share, what type of Esophageal cancer were you diagnosed with? I was diagnosed with Barrett's Esophagus without dysplasia three years ago. It is important to me to learn from others and build community.

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Hi @kevinwilliams, you might also be interested in this related discussion:
- Barrett's esophagus to Esophageal cancer
https://connect.mayoclinic.org/discussion/barretts-esophagus-to-esophageal-cancer/

What type of monitoring does your doctor do to keep an eye on your Barrett's esophagus?

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My husband was diagnosed with stage-1 cancer in the lower esophagus and cardia area of the stomach. The small mass was removed but there were remaining cells in the surrounding area and so he was scheduled for an esophagectomy, which included the lowermost portion of the esophagus and about one-quarter of the stomach. Surgery went well but he had to remain hospitalized for about five additional days because of a suspected leak. When he arrived home (with a j-tube, “just in case”), he ate many foods, mostly on the softer side and, other than constant diarrhea, things went well for about one week. What concerned me more than anything else, however, was that he wasn’t able to tell when he was hungry or full. . . as if he didn’t get the message from his brain. After that first week he began to experience constant nausea and/or vomiting no matter what he ate and even if he didn’t eat anything at all. Right off the bat I wondered about the vagus nerve. After several more days of not keeping anything down, he was re-admitted to the hospital. A scan revealed a small hiatal hernia plus inflammation of both the esophagus and stomach. He was put back on enteral feeding and remained in the hospital for three additional weeks, with unabated nausea and/or vomiting. He was released with no changes to vomiting and nausea, in spite of trying various medications to remedy it. My next concern was delayed gastric emptying—4-½ hours after eating, vomitus revealed food in “pristine” condition—all earmarks of gastroparesis. I asked several times if the vagus nerve had been damaged but of the people whom I asked (all hospital personnel), nobody knew. I finally asked the surgeon himself who indicated that the vagus nerve had indeed been cut, that it is standard procedure in this type of surgery, and that the nerve would not regenerate.

Has anyone else had similar problems after esophagectomy? Did your body adjust to its new self? Why is there gastric juices in the stomach when it’s empty? He’s on PPIs; isn’t that supposed to keep the stomach acid down? The doctor did not mention whether the nerve was accidentally cut or if it had been sacrificed deliberately. If it were cut deliberately, would the entire portion of the branch be removed?

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