Just diagnosed with gastroesophageal adenocarcinoma. Very scared

Posted by skwwatkins @skwwatkins, Aug 5, 2021

My husband was just diagnosed with gastroesophageal adenocarcinoma. We are very scared. Second opinion. And has anyone had this.

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I. TRIED IMMUNOTHERAPY IT WASNT HELPING AND CAUSING MORE ISSUES AND COME TO FIND OUT WHAT THEY WERE GIVING ME WAS ONLY 10/15 PERCENT EFFECTIVE @ A COST OF $18,000 A TREATMENT …

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@lori57216

No John, mine was the opposite. I had to have assistance for constipation due to the pain meds.
Sounds like you have a mildcase of what they refer to as "dumping syndrome".

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I have been dealing with "instant onset diarrhea" as I call it ever since my 10 hour long Stage 4 esophageal cancer surgery July 2020. Never had the problem prior to that. I've tried changes to my diet (trail mix seemed to slow it down) but not much else. I eat the same thing most of the time as swallowing is also a problem at times, so the events aren't caused by any particular food. Hoped a colonoscopy would tell if there was a problem but results were just fine as was my PT scan. Have met with 3 gastro doctors and no solution. Latest recommendation is Visbiome (a pro-biotic) for 4-6 weeks. If no changes, doctor recommended XiFaxan 550mg which is quite expensive.

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@ShandaBlackmonMD

I am sure you are in good hands. The teams here at Mayo are incredible. Please let us know if you need the esophagectomy education video, handout, or want to take the esophagectomy class.

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Hi Shanda
I have ec and didn’t get them esophagectomy yet. My surgeon is said no at this time doe to dime size spot on liver. I’m currently on folfox treatment. I’ve had 4 infusions.. I would like the education video on esophagectomy procedure
Than you
Linda Casey

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@bea4me

I have been dealing with "instant onset diarrhea" as I call it ever since my 10 hour long Stage 4 esophageal cancer surgery July 2020. Never had the problem prior to that. I've tried changes to my diet (trail mix seemed to slow it down) but not much else. I eat the same thing most of the time as swallowing is also a problem at times, so the events aren't caused by any particular food. Hoped a colonoscopy would tell if there was a problem but results were just fine as was my PT scan. Have met with 3 gastro doctors and no solution. Latest recommendation is Visbiome (a pro-biotic) for 4-6 weeks. If no changes, doctor recommended XiFaxan 550mg which is quite expensive.

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I had some issues,but not for 3 years nor would I let it go that long , i was given a prescription to Perdizone 5mg stopped within a day …

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@johnstawicki

I had some issues,but not for 3 years nor would I let it go that long , i was given a prescription to Perdizone 5mg stopped within a day …

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Unfortunately a great deal of the 3 yr. period I was in the hospital following my Stage 4 esophageal cancer surgery + a 2 mo. long coma post surgery where I was near death. From there moved to 4 different rehabs none of which seemed the least bit interested in helping me with the diarrhea problem. No doctors ever visited & no tests ordered either. When I finally got back home I began the search for ways to fix the problem. Was always told to just try pro-biotics but none of them ever helped at all. The most success I had was with trail mix. It really helped. I now have occasional episodes and my recent colonoscopy & stool sample tests came back 100% OK. Still no diagnosis. Thanks for the info. on Perdizone 5mg. Will discuss with my gastro doctor who just prescribed Visbiome for 60 day trial.

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I was diagnosed in 2020 and had proton beam radiation and chemo followed by surgery and 1 year of immunotherapy with opdivo. The surgeon was Shanda Blackmon and she is one of the best in the world. I was plenty scared, but not afraid of dying, just the process of dying. I have been cancer free since my surgery in 2020. I return for another scan in early February and expect a good report. I began going to the gym 2 or 3 times per week and walk 3 miles per day. I am in better shape now than I was before the diagnosis and weigh the same as I did prior to surgery. One article really helped put my diagnosis in perspective. Google “Don’t Waste Your Cancer” by John Piper and take it to heart. They actually cure people of cancer now, not just put it in remission.

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Yes I was and went through 6 weeks of proton radiation therapy as well as chemotherapy and my pet scan showed
that it was gone. I caught it early and it hadn't moved to the lymph nodes. I am 76 and wasn't about to have surgery as it is quite debilitating and recovery is quite long(if you recover) I wanted some quality of life left so I
could still do things and travel. If you have the opportunity to get "proton" radiation treatments by all means do it!
Best wishes as you move forward.

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What are the symptoms of esophageal cancer?. I was diagnosed with a hiatal hernia but continue to have symptoms ?? of "stuck in my throat" feeling when swallowing
and don't want to ignore my questioning. Thank you so much for any input. I guess we all know how
vulnerable "being human" feels. 💕
Carey Anne

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@caan

What are the symptoms of esophageal cancer?. I was diagnosed with a hiatal hernia but continue to have symptoms ?? of "stuck in my throat" feeling when swallowing
and don't want to ignore my questioning. Thank you so much for any input. I guess we all know how
vulnerable "being human" feels. 💕
Carey Anne

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Carey Anne
Last year I started out with difficulty swallowing and coughing. I had an endoscopy expecting to stretch esophagus but instead found tumor in lower esophagus which turned out to be cancer. The docs did not want to do surgery so I ended up with chemo and raidation. After first 3 treatments, the tumor shrunk 30% and now the esophageal cancer is gone, and I can swallow just fine. A CT scan might tell if there is any cancer. I'd be happy to answer questions about my experience. What are your docs planning to do next?

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Thank you so much. The doctors did not suggest any action, but my intuition told me to reach out. You were there. I will now get CAT scan or whatever diagnostic test might provide best diagnosis. If course, I hope I'm wrong , but your input might have saved my life. 💕

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