• Poorly differentiated neuroendocrine cancer

    Asked by BigSister on Saturday, March 9, 2013

    Poorly differentiated neuroendocrine cancer

    Looking for anyone with this diagnosis or is family member/caregiver to someone who has it. Need to connect!

    7 Answers from the Community

    7 answers
    • jan_h's Avatar
      jan_h

      I have neuroendocrine paranasal sinus cancer. However I do not know if it is poorly differentiated. I see my oncologist next week and will try to find out.

      over 4 years ago
    • jan_h's Avatar
      jan_h

      I saw my oncologist, and she said that what I have is small cell, undifferentiated neuroendocrine cancer. So it looks like what I have is not exactly the same but close. I did an Internet search and found that both undifferentiated and poorly differentiated cancers tend to be aggressive. So far, mine has only been aggressive locally; it has not metasticized or spread to the lymph nodes. I just had my first treatment last week - chemo. After another round of chemo, they will take an MRI to determine whether the tumor has shrunk enough and is far enough away from vital structures to do surgery. If I am able to have surgery, it will be followed by a combination of chemo and radiation for 6 weeks. If I am not able to have surgery, I will have chemo and a higher dose of radiation for 7 weeks.

      over 4 years ago
    • BigSister's Avatar
      BigSister

      Yes, that is very close. His treatment is actually treated like small cell, even though it isn't. I'm glad yours hasn't metastasized yet, although I have to say that what you are going through sounds awful. What chemo drugs are you on? I do hope it shrinks so you can get the surgery. We got a call yesterday from NIH and have an appointment tomorrow morning to discuss a potential clinical trial--should be an interesting day!

      over 4 years ago
    • Dal's Avatar
      Dal

      Two great organizations may be of help: http://www.carcinoid.org/ which is the Carcinoid Cancer Foundation and www.carcinoidawareness.org which is the carcinoid cancer awareness network. There are also some yahoo groups and a few groups on Facebook. I would HIGHLY recommend you seek out a oncologist that has specialized in this rather rare cancer. There is no substitute for experience here. Both those organizations listed above have Physician Directories that have extensive experience in treating and managing this.

      over 4 years ago
    • Dal's Avatar
      Dal

      Novartis Oncology also has an informative website called NET Alliance that is all about NET cancer. http://www.thenetalliance.com/

      over 4 years ago
    • BigSister's Avatar
      BigSister

      Thanks, Dal. I agree with the needing specialized care for sure--very difficult to find, however, as I understand it carcinoid is not treated the same as small cell so not certain these sites will help. I'm going to check them out though!

      over 4 years ago
    • mfranke's Avatar
      mfranke

      my mother was just diagnosed with this. St. Louis MO

      over 4 years ago

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