Pulmonary Carcinoid Tumors

Kawkadyle
Kawkadyle Member Posts: 2 *
in Lung Cancer #1

Hi! I'm looking for anyone else who has been diagnosed with Lung Carcinoid Tumors. I was just diagnosed about a month ago, Stage IV, and I'm really struggling to face this thing head on. Because it is so rare, my oncologist doesn't have experience with this cancer and can only look up ideas on how to treat it. I want to at least have a sliver of hope in fighting this.

Comments

  • yanots
    yanots Member Posts: 1 *
    #2

    Hi Kawkadyle, I had the same diagnoses and am recovering from a right upper lobectomy . Don't know your location but there are cancer treatment centers which your doctor should refer you too. Mine was the Wilmont Cancer treatment center at Strong memorial Hospital in Rochester.New York. Lung Carcinoid tumor are rare and surgical removal(thorasic surgeon) is the way to go as my treatment team explained to me that chemo and radiation doesn't work on these tumors. You will want to go to a treatment center because they have medical,surgical,and radiation oncologist. I didn't know S**t about cancer but you become an expert like I am. There are lymph nodes involved with these tumors so those can be treated with chem ,radiation, hormones. My friend your in for the fight of your life as we all are. Cry, scream,kick the cat but don't give up without a fight.God Bless your chances are good!

  • Kawkadyle
    Kawkadyle Member Posts: 2 *
    #3
    https://csn.cancer.org/discussion/comment/1707842#Comment_1707842

    Hi Yanots! Thank you so much for writing back. I was told that surgery is no option for me, since I have 5 tumors in my right lung and 4 in my left. I'm Stage 4. No symptoms. I feel like nothing is wrong. I even ran seven miles Friday morning. Did you have multiple tumors and were they in both lungs? I'm completely freaked out right now. I have a wonderful husband and two daughters 10 and 12. I can not fathom that this is the end for me. I am currently trying to get a referral for a cancer treatment center. I hate to think my life is literally in the hands of bureaucrats. But, hey, if they did preventative screenings like mammograms and Pap smears, I may not be in this mess. Thank you for encouragement. Any other thoughts and advices are welcome.

    "I will not go gentle into that good night" - Dylan Thomas.

  • dennycee
    dennycee Member Posts: 857 Member
    #4

    If you haven’t already found a second opinion, use one of these;

    https://www.nccn.org/home/member-institutions

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