BarbaraAdele's Journey:

Patient: Head & Neck/Throat Cancer

Patient Info: Prefer not to answer/not applicable/unsure, Diagnosed: almost 8 years ago, Female, Age: 77, Stage IV

  1. 1
    about 5 years ago
    BarbaraAdele's Avatar

    Surgery

    Procedure or Surgery

    First surgery of three at three different top hospitals. This surgeon did not get wide margins in parotidectomy and he ignored my statements that I felt and had large painful lymph nodes which I felt were also aciinic cell carcinoma. He did not excise. Lymph nodes were cancer, ainic cell, in later biopsy. He did not even test even though I requested it. Ordered wrong radiation. I told him I researched and found fast neutron was best, but he ignored it. He never once sat down with me, mostly just with resident or fellow, before or after surgery. First visit he stood in doorwary only for a few minutes and totally indifferent.

    Went as Expected: Strongly Disagree
    Minimal Recovery: Strongly Disagree
    Minimal Side Effects: Strongly Disagree
    Minimal Impact to Daily Life: Strongly Disagree
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  2. 2
    about 5 years ago
    BarbaraAdele's Avatar

    External radiation

    Radiation

    IMRT Radiation was wrong for Acinic Cell Caracinoma. I told surgeon I researched and found fast neutron was best, but he ignored me. It should have done instead of IMRT as it was ineffective. He also ignored my statement that I also had painful neck lymph nodes that I felt were also Acinic Cell ca., he ignored me. Did not excise them (which were ACC by later biopsy_ and did NOT get wide margins in parotidectomy.

    Painless Experience: Strongly Disagree
    Minimal Side Effects: Strongly Disagree
    Minimal Impact to Daily Life: Strongly Disagree
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  3. 3
    about 5 years ago
    BarbaraAdele's Avatar

    Thinking problems

    Side Effects

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

    0 Comments
  4. 4
    about 5 years ago
    BarbaraAdele's Avatar

    Lymphadema therapy for three head/neck surgeries and radiation

    Other Care

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

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  5. 5
    about 5 years ago
    BarbaraAdele's Avatar

    Other

    Decision Point

    I had three acinic cell ca. surgeries to head/neck. Two failed - surgeon incompetence, did not excise or even locate lymph nodes prior to surgery, just operated and did wide neck dissections and totally missed parotid cancer and neck lymph node cancers. Third surgery was very very difficult as there is so much scar tissue from wrong radiation and three surgeries. One lymph node excised. Having regular US to try to locate, but future surgery seems too risky and they cannot locate tumors with thick scar tissue now. NO CHEMO for this cancer, NO cinical trials, and I cannot have radiation that is needed as I had too much and wrong kind after first surgery. I was also diagnosed with breast cancer same day and this diagnosis, had second mastectomy and that surgeon did not want to do mastectomy and left three cancerous nodes in, he knew it, but did not tell me. I found out months later from radiaologist who told me at moment of being wheeled into OR to get off table and go home and find another surgeon,.but did not tell me he intentionally was leving cancer in me. He was elderly and mental health issues. After this radiologist called me when she quit because of thiis imcompetent surgeon and told me, another surgeon operated, found the cancer, and did mastectomy, but it was months later. I want to communicate with anyone who had acinic cell carcinoma, please

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  6. 6
    about 5 years ago
    BarbaraAdele's Avatar

    Procedure or Surgery

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

    Went as Expected: Not Specified
    Minimal Recovery: Not Specified
    Minimal Side Effects: Not Specified
    Minimal Impact to Daily Life: Not Specified
    0 Comments