Treebugaz Posted December 2, 2018 Share Posted December 2, 2018 Hi, All. I’m new to the posting although I’ve referenced the group’s info many times. My story is stage 1A NSCLC. Surgery only 9/2016. I’ve been screened with chest CTs every six months by my pulmonologist and blood work every 3 months by a naturopathic oncologist I connected with on my own. For the past four months I’ve been feeling pretty poorly, really tired and abnormal headaches. Two months ago started an on and off pain in my left rib cage. In mid October, Oncologist ordered blood work and Circulating Tumor Cell test. Blood work was normal, but CTC came back positive = 2. (One year ago my CTC test was negative = 0) My CEA has consistently been dropping over the last year. Last CEA test in May 2018 was .6–as of last week it has risen to 1.0. Last week, I also had a CT with contrast of the chest, abdomen, and pelvis which came back negative. I’m looking for feedback and insight from anyone with similar experiences with rising CEA (not associated to treatment) or with a positive CTC test. Needless to say, I’m concerned. I have two small children (2yrs and 6yrs) and a husband, all of whom I’d like to live for a long time for. More insight, I lost my grandfather (42yr), father (59), and sister (34) to this disease. I wish we were all meeting each other under different circumstances, but here we are. Thanks, in advance, for your responses. Link to comment Share on other sites More sharing options...
BridgetO Posted December 3, 2018 Share Posted December 3, 2018 HI Trebugaz and welcome. I can see why you're concerned, not feeling welll and these two test results. Unfortunately, i don't have any experience with these tests. I wonder if you're looking at possible causes of your symtoms that aren't cancer related.. Bridget O Link to comment Share on other sites More sharing options...
Tom Galli Posted December 3, 2018 Share Posted December 3, 2018 Treebugaz, I'm aware that Circulating Tumor Cell (CTC) testing is used for types of breast, colorectal, and prostate cancer but did not realize this testing is effective for NSCLC. I have no experience CEA testing so I can't offer any assistance. A clean CT scan ought to be worthy of celebration. Stay the course. Tom Link to comment Share on other sites More sharing options...
hope16 Posted December 3, 2018 Share Posted December 3, 2018 Hi treebugaz What prompted me to reply your post is the similarity between our situations. I also have two kids of the same age as yours but its my husband who is suffering from this disease and recently had lobectomy and chemotherapy. So I understand what you must be going through. I really want my husband to see his kids growing up, their marriages kids etc. I will keep you in my prayers. But I do agree with Tom that a clean CT worths celebrating. So go enjoy and don't believe that something is wrong with you until told otherwise. I am sorry for not being helpful. Link to comment Share on other sites More sharing options...
Treebugaz Posted December 3, 2018 Author Share Posted December 3, 2018 On 12/2/2018 at 3:29 PM, Treebugaz said: Hi, All. I’m new to the posting although I’ve referenced the group’s info many times. My story is stage 1A NSCLC. Surgery only 9/2016. I’ve been screened with chest CTs every six months by my pulmonologist and blood work every 3 months by a naturopathic oncologist I connected with on my own. For the past four months I’ve been feeling pretty poorly, really tired and abnormal headaches. Two months ago started an on and off pain in my left rib cage. In mid October, Oncologist ordered blood work and Circulating Tumor Cell test. Blood work was normal, but CTC came back positive = 2. (One year ago my CTC test was negative = 0) My CEA has consistently been dropping over the last year. Last CEA test in May 2018 was .6–as of last week it has risen to 1.0. Last week, I also had a CT with contrast of the chest, abdomen, and pelvis which came back negative. I’m looking for feedback and insight from anyone with similar experiences with rising CEA (not associated to treatment) or with a positive CTC test. Needless to say, I’m concerned. I have two small children (2yrs and 6yrs) and a husband, all of whom I’d like to live for a long time for. More insight, I lost my grandfather (42yr), father (59), and sister (34) to this disease. I wish we were all meeting each other under different circumstances, but here we are. Thanks, in advance, for your responses. Thanks, everyone, for thoughtfully responding. The “wait and see” is a difficult place to be. I want to believe the blood tests and pain are not cancer. Tom, I’ve read many of your posts and comments. Thank you for replying to me. Hope, I’m sorry your family is going through this, especially with those little ones. I’ve prayed for your husband and will continue to do so. Bridget, thank you for empathizing. I’m hoping it’s benign reasons as well! Thanks! Link to comment Share on other sites More sharing options...
Wifey Posted May 31, 2019 Share Posted May 31, 2019 On 12/2/2018 at 9:53 PM, Tom Galli said: Treebugaz, I'm aware that Circulating Tumor Cell (CTC) testing is used for types of breast, colorectal, and prostate cancer but did not realize this testing is effective for NSCLC. I have no experience CEA testing so I can't offer any assistance. A clean CT scan ought to be worthy of celebration. Stay the course. Tom Tom you are the most positive person I've ever encountered and MUCH needed on this forum. "Stay the course." Link to comment Share on other sites More sharing options...
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