My Journey with NeuroEndocrine Cancer

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  1. Camille
    Nov 11, 2014

    Amazing how researching and writing can lead us to inspiration and understanding! Putting the whole story together I’m sure has been eye opening for you. It’s helped me see the whole picture of your journey. Love and prayers from my little corner of the world. I love you!

  2. Lydia
    Nov 17, 2014

    Thank you so much for sharing your story. My tumor was in my appendix as well and although we have different stories I can definitely relate. It’s nice to hear what we eel is “normal”.
    I wish you all the best in your journey.

  3. Bridget Smith
    Nov 17, 2014

    Thank you for sharing. We have found metastasis in the liver, but no primary yet. It may be that I have the undifferentiated NET, which makes it harder to find. I am trying to get into the NIH/NCI 68GA study. Also, would like to get into University of Iowa as you did. Wish me luck.

  4. Suzanne graham
    Nov 17, 2014

    Thank you for sharing your story. I had a blockage in my intestine, had never heard of a carcinoid cancerous tumor until the pathology report. We go back to Vanderbilt for testing the first week if December. Just wanting answers, and see what happens next!!! Thanks again for helping to subside some of my fears. God’s got this!

  5. Barbara B.
    Nov 18, 2014

    I’ve never responded to a facebook story, but feel compelled to share my story with you and others. I have been living with carcinoid now for the past 24 1/2 years, which may be a record! I tell you all this to encourage you that even with bumps in the road (my first tumor was low in my intestines or rectum area, discovered by chance, followed by a tumor in the appendix, a positive lymph node, a tumor outside of my colon, necessitating a bowel resection, plus two carcinoid tumors in my ovaries, discovered by chance while having a stromal sarcoma tumor removed from my uterus.) The point of my story is that you MUST be diligent about repeat CAT scans, blood tests, octreoscans (mine are always negative!) and injections of sandostatin. The incredible part is that my first tumor was not connected to my second one, even though THAT tumor has metastasized. It was like being struck by lightning twice in your life. But I have made it through so many milestones and events in my life which I wanted to live for, and I hope my story will serve as an inspiration that it is possible to LIVE with this cancer for a long, long time, and you just need to deal with the setbacks when they occur, and they may, and then move on. But MOST important is being informed as many in the medical profession just don’t know enough about this disease, knowing your body and changes, having a doctor who believes you and following up with all required tests and treatments! GOOD LUCk TO ALL WHO READ THIS!

  6. Donna Mitchell
    Jun 30, 2015

    I was diagnosed on June 9th with neuroendocrine carcinoma. My tumor is on my vena cava. It is the size of a softball. My surgeon at Wake Forest says when they remove it they will have to remove part of my favorite intestines, part of my psoas muscle and part of my vena cava.
    All of this seems to be happening so fast.. I was in the gym working out the Friday before memorial weekend and my side was hurting really bad had been hurting off and on for a few months…but that day in the gym I was certain my appendix were going to burst any second. Left there made a doctors appointment. They could see me at 4 by 5 they were sending me to the ER for a blood transfusion and ct scan of my appendix. They found a mass. Another ct scan with dye and contrast. By 11 that night they were consulting with an oncologist. I had to spend the night in the hospital so I could receive two blood transfusions and a bag of iron. At 8am my oncologist was waking me up telling me to prepare for the worst but hope for the best. The next Wednesday I had a biopsy. Now I have found a surgeon willing to do my surgery and I’m having a MRI Wednesday. This is scary. I wish I had statistics on this surgery.



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