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    Other Care (Other): Pet scan complete it is very confusing see oncologist tomorrow any one know what questions I need to ask

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    papamelx5 asked a questionCancer of Unknown Primary

    Have been diagnosed with poorly differentiated carcinoma of deep cervical lymph node with unknown primary. Pet scan on Monday what is next

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      Carriet102

      I have poorly differentiated high grade neuroendocrine carcinoma. It started out in two lymph nodes in my armpit. I went through, chemo, radiation and then surgery to remove what was left of tumor. Was cancer free for five months. Just found out in feb that it is back in one lymph node below my kidney. My dr sent my tumor tissue to Foundation One for genetic testing. I have five genetic mutations. Two of the mutations have the same recommended chemo treatment. I started afinitor one month ago with minimal side effects so far. If the afinitor doesnt stop the spread of this nasty cancer, i am looking at clinical trials. Does anyone know of any relevant clinical trials for this type of cancer? I feel like i am the only person in the world battling my specific kind of cancer! Noone responds to posts i post on various cancer websites.... I am 47, i have a six year old son and i am terrified! Its so hard to believe that with only one lymph node, that my situation would be so grim (in the words of my doctor).
      I have the following mutations:
      -PIK3cg
      -pten
      -tp53
      -notch1

      about 5 years ago
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      Carriet102

      Have you dr send your tumor tissue to "foundation one" they will genotype it and tell you which chemos will be most effective against your kind of cancer.... Doing this may save your life....

      Carrie

      about 5 years ago
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    papamelx5 shared an experience

    Oh No (Cancer has spread/Metastasized): Have been diagnosed with poorly differentiated carcinoma of deep cervical lymph node with unknown primary. Pet scan on Monday what is next

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