Just diagnosed with esophageal cancer.

Posted by knite122 @knite122, Apr 7, 2023

Hello group, I was just diagnosed with esophageal cancer a few days ago. My Gastro Dr. called me a few days after my Upper Endoscopy to say the Pathologist confirmed the cancer. For the last five years I've gone from Barretts esophagus to low grade dysplasia, to high grade dysplasia. The Dr. used Radial abrasion to burn it out twice and liquid nitrogen the third time, each time it came back. Now its cancer and I've been told to see a Thoracic Surgeon. I have no idea what to expect until I see him and was hoping someone can give me an idea. Tho good is obvious, but what will the bad be? Thanks in advance.

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@jmp1514

Not all stages or people can have surgery, my husband was one who couldn’t because of the stage.
Have you had the scans, ultrasound, etc, to stage your cancer? Depending on the stage you may need adjuvant therapy pre or post op. Your oncologist will work with your surgeon.

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So far all I’ve had is the blood test, the CT scan is May 3rd, at which time the surgeon will view the results. My Gastroenterologist never mentioned a Oncologist, when I called his office to find out about the addendum added to my chart, his medical assistant asked if I had seen an Oncologist yet, to which I said I was never told I needed to.

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@knite122

So far all I’ve had is the blood test, the CT scan is May 3rd, at which time the surgeon will view the results. My Gastroenterologist never mentioned a Oncologist, when I called his office to find out about the addendum added to my chart, his medical assistant asked if I had seen an Oncologist yet, to which I said I was never told I needed to.

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I would encourage you to make some calls. Do you have the pathology report available? My husbands was in his patient portal. With that information an oncology office should be able to help.

As an aside, I found my husband’s pathology report in his EHR. I called our treatment center of choice ( Mayo/Rochester), spoke with a screening nurse and had our flights booked, Mayo had several scans scheduled, appts with medical oncology, radiation oncology, GI and thoracic surgery. ALL before my husband’s gastroenterologist ever contacted us—actually i called them and told them about the pathology report. Some “glitch” with the lab caused the office to not be notified.

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@jmp1514

I would encourage you to make some calls. Do you have the pathology report available? My husbands was in his patient portal. With that information an oncology office should be able to help.

As an aside, I found my husband’s pathology report in his EHR. I called our treatment center of choice ( Mayo/Rochester), spoke with a screening nurse and had our flights booked, Mayo had several scans scheduled, appts with medical oncology, radiation oncology, GI and thoracic surgery. ALL before my husband’s gastroenterologist ever contacted us—actually i called them and told them about the pathology report. Some “glitch” with the lab caused the office to not be notified.

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Thanks for the advice, I’ll make some calls Monday.

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In my case, the scan results were given over to the oncologist who then developed an appropriate treatment plan specifically for my case. I received 28 radiation and 6 chemo treatments. During the later stages of treatments I chose a surgeon. 6 weeks after my last radiation treatment I had my first surgery.

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@sjw6358

In my case, the scan results were given over to the oncologist who then developed an appropriate treatment plan specifically for my case. I received 28 radiation and 6 chemo treatments. During the later stages of treatments I chose a surgeon. 6 weeks after my last radiation treatment I had my first surgery.

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I see, my scan isn’t until next week at which time the Thoracic surgeon will view the pathology report as well as the CT scan. My guess is he’ll decide if he does surgery first or chemo/radiation.

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@knite122

I see, my scan isn’t until next week at which time the Thoracic surgeon will view the pathology report as well as the CT scan. My guess is he’ll decide if he does surgery first or chemo/radiation.

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https://www.nccn.org/patients/guidelines/content/PDF/esophageal-patient.pdf

Here is a link to the National Comprehensive Cancer Network (NCCN) patient guidelines. The NCCN website also has standard of care guidelines, but even as an RN I get lost in the medical speak.

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knite122, was the Barrett's completely gone when the ablation was stopped

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@mark53

knite122, was the Barrett's completely gone when the ablation was stopped

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Yes, each time it was burned out it came back with high grade dysplasia.

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I just found out I have stage 4 esophageal cancer I am waiting to get a port out in and will start radiation treatment as soon as they can get me scheduled I also have problems with the mucus when I try to eat any ideas that help?

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Hello Group,

I am 44 yrs old new to this group and trying to find my answer as I have been going through a lot. I was diagnosed Barrett esophagus with metaplatia 4 yrs ago. After that I had cryo ablation surgery 2 times and dr . Biopsy confirmed that it has completely eradicated. But I am in constant pain last 2 yrs. And too much pain in last 1 month by the sprincter associated nausea and a bit swallowing issues. Feels like LES pushing upward causing too unpleasant, restless.

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