I have NSCLC and have been off any treatment for a year after developing scarring and interstitial complications. My lung CTs have been stable but my CEA markers keep rising. They are currently over 200 which I have read indicates massive disease. I had to ask for a PET scan and a brain CT. They showed only one bone met which was radiated. The tumor markers went down briefly and at the next CT/labs has begun to rise again to its highest level ever. My onc is only continuing to monitor because he sees no active disease, but I am very concerned. I don't know what else to ask for, do or who to see. Any insight
Reply # - June 22, 2022, 10:52 AM
Hi snickerdoodle, I'm sorry you're going through this worry. Cea levels for nsclc don't really inform treatment decisions. They sometimes forewarn the coming of progression but sometimes progression doesn't follow a rise in cea.
Since there is nothing that changes in treatment you might ask why have the test at all. Often it only adds stress. Have a conversation with your onc about testing.
Stand alone CTs remain the gold standard for following advanced nsclc to make treatment decisions. PETs add extra iv drug, time and tons of money while adding nothing to care.
I hope this is a false alarm. Let us know if we can help.
I joined GRACE as a caregiver for my husband who had a Pancoast tumor, NSCLC stage III in 2009. He had curative chemo/rads then it was believed he had a recurrence in the spine/oligometastasis that was radiated. He's 10 years out from treatment.
Reply # - June 22, 2022, 04:05 PM
I appreciate the comments. I also want to correct my mistake in CEA level- I forgot the decimal. In the past year, my level has increased from 4.7 to 28.3, NOT 200. But it is still an alarming number and while watching the CTs, I am asking to check other areas to be sure it hasn't spread. I count my blessings that nothing has been found. All we can do is ask and be aware- and enjoy every second of life in the meantime!
If anyone else has similar experience, I'd love to hear.
Thank you all for your empathy and your expertise!