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DiscussionWorried about rising CEA levels
Colorectal Cancer | Last Active: Aug 31 6:47am | Replies (91)Comment receiving replies
Replies to "Hi I was diagnosed January 2015 will stage 4 colorectal. I’ve had bumps in the road..."
hi @sallyg
How did the diagnosis go with you with regards to the investigation.
hi all
My mother has always been a healthy women who had been taking care of all the house work and been a pretty active lady. She also had a strict regime when it came to food like she has only home cooked food, stick to a fish based diet, no smoking, no alcohol. Recently my mother was diagnosed with colonorectal cancer. Dr was able to operate the same out. Her CEA before the operation was 17. After removal it was coming down and it went down to 6. Her chemo started with CEA of 6 but after 1 Chemo it went to 11. After another Chemo it was 19. We go curious and did a re-test after two days and then CEA showed 21. This has got everyone panicking. PET scan and contrast scans where all showing negative and she does not seem to show any health issues other than side effects from chemo which seems to be impacting her appetite. We just wanted to figure out what other tests we might need to do to confirm is there is really an issue or not. Will colonoscopy and endoscopy help? Or should we wait and do another PET scan. The fact that the chemo seems to be killing her appetite and in turn causing headaches/mouth sores seems concerning due to which we don't want to keep continuing with her chemo if the CEA is a false positive and she has no real issues. Having said that, please can someone guide us on what might be the best next steps to diagnose. As of now she has done 4 chemos, the Dr suggested 8 cycle regime to being with so we are planning to check the CEA and PET once again after 8 cycles and might even go for a colonoscopy post that if CEA is still elevated and PET is negative. But any other suggestions will really help. Sorry if anything I have mentioned is confusing as I am tensed about all this and still trying to wrap my head on the situation as well as trying to chain the flow of thoughts.
We just need some guidance what might be the best next steps if CEA is high and PET scan is negative. Can we stop chemo and wait and watch? Or is there something we can test to confirm.
Hi @sallyg, it is good to hear from you again, although I'm sad about the reason. You'll notice that I moved your message to an already existing discussion where members are asking similar questions concerning rising CEA levels, members like @diannechildress @bobbipost @nldan @bobbywood427 @jamesc and @revcindy.
Rising CEA levels are sure to be worrisome for you. As you probably know CEA testing is notorious for false positives, meaning that the test results may show high levels when they are actually not.
Here's more info:
– High False-Positive Rate of Elevated CEA Seen in Patients With Resected Colorectal Cancer https://www.ascopost.com/issues/august-15-2014/high-false-positive-rate-of-elevated-cea-seen-in-patients-with-resected-colorectal-cancer/
Watching and waiting is hard, but important because your team will want to track your levels over time to watch for trends. It is hard to be calm, especially in this time of COVID-19. But concentrate on the clear scans.
Was only one lymph node removed or did you have several removed and only one was metastatic?