• Nueroendocrine Carcinoma

    Asked by dawntildusk70 on Wednesday, December 13, 2017

    Nueroendocrine Carcinoma

    Who has it? Where does it go from here..after chemo??

    6 Answers from the Community

    6 answers
    • CancerChicky's Avatar
      CancerChicky

      I found a great tool on the site when I was searching for information on my diagnosis. I looked on the diagnosis page, and typed in the name of my cancer, and I got a screen with everyone on the site with my type of cancer. Here is the same thing for your cancer. https://www.whatnext.com/conditions/cancer/cancer-of-unknown-primary/neuroendocrine-carcinoma-unknown-primary

      almost 4 years ago
    • Paperpusher's Avatar
      Paperpusher

      Hi! My husband also has small cell Neuroendocrine carcinoma in his right lung. It was his primary site as far as we know. As you probably know, it is more common in the digestive system but he's not had any of his scans light up there. His cancer was found because he was participating in a study for long term smokers at a local hospital. They watched it grow from a couple of mm to 1 cm which was the tipping point for surgery. He had the RLL removed. The tumor board opted for no treatment at that time. (Dumb move in my opinion) The cancer came back in his RUL and he had chemo and radiation. He's 2 1/2 years post treatment completion and is stable. If you're on Facebook, there are several groups that deal exclusively with neuroendocrine cancer. I've found them helpful but not all types apply to my husband The groups refer to this type of cancer as a zebra because it might look like a horse but it isn't.

      almost 4 years ago
    • Whitey61's Avatar
      Whitey61

      Dawn, I am a neuroendocrine cancer patient, MPC, treated with Immunotherapy pembriluzmab, not standard treatment for prostate cancer, this is considered a hormonal cancer, in my case it could go to liver, lungs and brain, organs checked closely with 3 month scans, all look fine after scans 12/9.

      over 3 years ago
    • dawntildusk70's Avatar
      dawntildusk70

      I was diagnosed in October 2015. The cancer started in my pancreas and moved to my liver. I went through a year of chemo and the Sandostatin shot. I am stable and still on the shot. I guess I just don't have definitive answers on how long a person survives.

      over 3 years ago
    • Whitey61's Avatar
      Whitey61

      Dawn, none of us has the answers on survival?, Not your Doctor's, only God has that answer, keep plugging away, enjoy life to it's fullest, day at a time, nobody is guaranteed a tomorrow cancer or otherwise, that thought gets me thru every blessed day..it will you as well...have a wonderful holiday and enjoy life.

      over 3 years ago
    • dawntildusk70's Avatar
      dawntildusk70

      I have been enjoying everyday and my faith has always been strong, but there are statistics out there and someone has answers. Or at least a somewhat of a survival rate.

      over 3 years ago

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