Bjsj69's Journey with Esophagus (Esophageal) Cancer

Patient: Esophagus (Esophageal) Cancer

Patient Info: Currently in active treatment (initial surgery, receiving chemo rounds/radiation), Diagnosed: about 5 years ago, Female, Age: 47, Stage IV

  1. 1
    • Bjsj69
    • Experience with Esophagus (Esophageal) ...
    over 4 years ago
    Bjsj69's Avatar

    Diagnosed

    Oh No

    First, let me give you a little history:I have tolerated stomach burning with some mild pain for years. Since I self-diagnosed it as being an ulcer I also self-medicated with zantac. Last year the frequency of these little burn/pain sessions increased and at the turn of the year I started to experience a weird pain in the upper left part of my abdomen. Again, I self-diagnosed it as being a hiatal hernia, afterall I had the classic symptoms, but didn't want to see a doc. As the pain increased my tolerance decreased and I was lovingly coerced by a friend to seek medical treatment. On June 21, 2012 I saw a nurse practitioner, who basically started treatment for an ulcer but also tested me for H.pylori, the only bacteria known to survive in the stomach and the reason why ulcers develop anyway. Since I tested postive, I was put on an antibiotic regimen to erradicate the bugger and also referred to a GI specialist to make sure there was no damage to the lining of the stomach. My appt with the GI doc on August 6th was brief and left me believing that this was still just an ulcer that needed further investigation. The GI doc then did an EGD on August 15th, during which he did not find an ulcer but rather a tumor in the GE junction (which was quite the surprise to him). On to the story:On August 16, 2012 the GI doc called to tell me that the tumor found in the GE junction was an adenocarcinoma. I was quickly scheduled for a PET/CT Scan, which showed activity only in the GE junction so it was determined at that time there was no mets. Multiple docs and tests later I was eventually diagnosed with Stage IV esophageal cancer with liver metastases.

    1 Comment
  2. 2
    • Bjsj69
    • Experience with Esophagus (Esophageal) ...
    over 4 years ago
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    Placement of J-tube & exploratory Lap

    Procedure or Surgery

    This person has yet to add any details about this experience.

    Went as Expected: Neutral/NA
    Minimal Recovery: Agree
    Minimal Side Effects: Neutral/NA
    Minimal Impact to Daily Life: Disagree
    0 Comments
  3. 3
    • Bjsj69
    • Experience with Esophagus (Esophageal) ...
    over 4 years ago
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    Cancer has spread/Metastasized

    Oh No

    When my surgeon placed the J-tube he also did an exploratory lap to "take a look around". It was during his exploration that he discovered spots on my liver, which turned out to be a neuroendocrine(?) cancer.

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  4. 4
    • Bjsj69
    • Experience with Esophagus (Esophageal) ...
    over 4 years ago
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    Chemotherapy

    Drug or Chemo Therapy

    This person has yet to add any details about this experience.

    Easy to Do: Strongly Disagree
    Minimal Side Effects: Strongly Disagree
    Minimal Impact to Daily Life: Strongly Disagree
    0 Comments
  5. 5
    • Bjsj69
    • Experience with Esophagus (Esophageal) ...
    over 4 years ago
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    PET scan

    Procedure or Surgery

    This was my second PET scan, done to determine if I am responding to chemo. Unlike my first scan, this one came back negative - showing no active cancers cells anywhere, not even in the GE junction where my tumor is located.

    Went as Expected: Agree
    Minimal Recovery: Neutral/NA
    Minimal Side Effects: Neutral/NA
    Minimal Impact to Daily Life: Neutral/NA
    0 Comments
  6. 6
    • Bjsj69
    • Experience with Esophagus (Esophageal) ...
    over 4 years ago
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    EUS - Endoscopic UltraSound

    Procedure or Surgery

    Since my recent PET scan was negative, I expected the stomach biopsies to be negative too. Unfortunately, the biopsies show that there are still cancer cells in my stomach.

    Went as Expected: Disagree
    Minimal Recovery: Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Agree
    3 Comments
  7. 7
    • Bjsj69
    • Experience with Esophagus (Esophageal) ...
    over 4 years ago
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    What type of esophagectomy to have.

    Decision Point

    Even though cancer cells are still showing up at the tumor site in my GE junction, my oncologist wants me to move forward with surgery ASAP. My surgeon is referring me to Dr. Benny Weksler at the UPMC for a consult regarding the robotic lap procedure. I will be traveling to Pittsburgh on Tuesday, 2/5, and hope to gather enough info to make a decision.

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  8. 8
    • Bjsj69
    • Experience with Esophagus (Esophageal) ...
    over 4 years ago
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    Tumor in GE junction is "mixed"

    Oh No

    I recently found out that my tumor is not just adenocarcinoma but it also contains neuroendocrine carcinoma. The latter is the same cancer type that was found in my liver, so I finally got an answer to my question "why is the cancer in my liver different from the tumor if it is supposed to be metastases".

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  9. 9
    • Bjsj69
    • Experience with Esophagus (Esophageal) ...
    over 4 years ago
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    Problem with doctor

    Oh No

    My oncologist wanted me to have an esophagectomy ASAP since my PET scan is now negative, even though the biopsies from the tumor are still showing cancer. So I went to Pittsburgh to UPMC to see Dr. Weksler, one of the top docs for the robotic/lap version of this surgery. Dr. Weksler was confused, indicating that he would do the surgery if I really wanted him to do it but he did not feel that it would help me. He felt that I would be put through a lot of pain and suffering for something that would not benefit me in the long run. He also told me that my cancer is very rare and the surgery would not be a cure. Now I am disheartened and am limbo - not having chemo and not having surgery - while trying to find an oncologist who specializes in both gastrointestinal and neuroendocrine cancers.

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  10. 10
    • Bjsj69
    • Experience with Esophagus (Esophageal) ...
    over 4 years ago
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    Surgery

    Procedure or Surgery

    Dr. Weksler, at UPMC, performed my espophagectomy on May 9, 2013. I am one week post-op and "so far, so good".

    Went as Expected: Strongly Agree
    Minimal Recovery: Strongly Agree
    Minimal Side Effects: Strongly Agree
    Minimal Impact to Daily Life: Neutral/NA
    1 Comment
  11. 11
    • Bjsj69
    • Experience with Esophagus (Esophageal) ...
    about 4 years ago
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    Cancer is back/Recurred

    Oh No

    After 6 rounds of aggressive chemo, the only place they could find cancer was in the original tumor residing in the GE junction. This cleared me for surgery and I was able to have the esophagectomy in May. At that point we determined the "obvious" cancer was gone and my fight would be against the microscopic buggers floating around in my system. I had a CT scan yesterday and found out this morning that there are multiple lesions in my liver. The cancer has come back after only 3 months, and quite aggressively, according to my oncologist. With chemo, she is predicting that I have less than a year to live. Our goal...to keep me alive so I can see my youngest son graduate from high school in May 2014.

    2 Comments
  12. 12
    • Bjsj69
    • Experience with Esophagus (Esophageal) ...
    over 4 years ago
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    Nausea medicine

    Drug or Chemo Therapy

    This person has yet to add any details about this experience.

    Easy to Do: Disagree
    Minimal Side Effects: Strongly Disagree
    Minimal Impact to Daily Life: Disagree
    0 Comments