Caroline's Breast Cancer Blog

     In the past, you've heard me blabbing about how grateful I am for cancer researchers who, not only discovered the ROS1 tumor mutation that is causing my cancer, but who also found a drug, a pill, that manages to work around the mutation allowing the gene to function properly. Thus my tumors shrank and have remained stable for over 30 months.        I recently realized that I've barely mentioned my LC community.  This group is made up of other lung cancer patients, the people that love us, and in some cases, our doctors.  I'm connected to them through the internet by way of several online resources: CancerGRACE.org, Inspire.com, and SmartPatients.com.  Additionally, I'm Facebook friends with many, and am in a couple FaceBook groups.  One of my FaceBook groups is 'closed', open to only ROS1 mutation patients and our caregivers.  I've met some of my friends in person at lung cancer meetings, but most I have not...

     Since the beginning, and for about two years, I had my blood drawn every month to check the level of my tumor markers.  Tumor markers  give me an indirect indication about the activity of my tumors...low   levels indicate low or no growth, while elevated and/or rising values raise the concern that my tumors are growing. Additionally, every three months, I had CT scans to visualize my tumors and assess if they were growing, shrinking, or staying the same, (aka "being stable".)        I've always been bothered by having too many CT scans.  Certainly, it has been reassuring to know that each time I've had scans, so far, I've been told that my tumors are either shrinking, or are stable.  However, CT scans expose me to radiation, and although I've read that the increased risk of radiation induced fatal cancer is low, I never want to increase MY risk for more cancer...I already have plenty. Last year I negotiated with ...