Worried about rising CEA levels

Posted by Dianne @diannechildress, May 31, 2017

I was diagnosed with colon cancer in 2009. At that time they removed 1/3 of my colon. We did blood screening through the Mayo clinic and they came back that I had a predisposition for polyposis. The cancer had not gotten out of the colon area. Over the next 7 years I was having regular colonoscopies and the doctor removed polyps every time. He recommended that I have the reminder of my colon removed and attache the small intestine to the rectum. That surgery was done January 2016. Up until this surgery was done my CEA levels were in the 3-4 range. This past April I was in to my oncologist for my check-up and my level has increased to 6.1. We redid the test again in 6 weeks which was yesterday and they have increased by 0.3 to 6.4. I was wondering if anyone else has had this problem? I have had my mammogram done and it is clear, I don't have any more colon so it can't be colon cancer, I had a hysterectomy when I was in my 20's so that rules out ovarian cancer. Any help with this would be greatly appreciated. Thanks in advance.

Interested in more discussions like this? Go to the Colorectal Cancer Support Group.

@colleenyoung

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?

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Hi Colleen
Several were removed
Only 1 was metastatic
Pathology did show it was colorectal cancer

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I was diagnosed with Invasive lobular carcinoma invasive lobular carcinoma( breast cancer) in June 2018. Since I have had a bilateral mastectomy and 28 radiation treatments. I have recently been watching my CEA levels which twice now has been just out of range. I had labs done July 2020 CEA level was 2.6 dr did a recheck on labs August 2020 CEA level was 2.2 and then just had them done again yesterday November 2020 and they are 2.7. Should I be concerned? From what I am reading my levels are .2 out of range. I suffer from very bad anxiety and am so nervous right now. 😞

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@denise777

I was diagnosed with Invasive lobular carcinoma invasive lobular carcinoma( breast cancer) in June 2018. Since I have had a bilateral mastectomy and 28 radiation treatments. I have recently been watching my CEA levels which twice now has been just out of range. I had labs done July 2020 CEA level was 2.6 dr did a recheck on labs August 2020 CEA level was 2.2 and then just had them done again yesterday November 2020 and they are 2.7. Should I be concerned? From what I am reading my levels are .2 out of range. I suffer from very bad anxiety and am so nervous right now. 😞

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Hi @denise777, welcome to Mayo Clinic Connect. I can understand that you're concerned about fluctuating CEA levels. As posted above, The CEA testing is notorious for false positives, meaning that the test results may show high levels when they are actually not. That's probably why your doctor ordered several tests.

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/

I know it's really hard not to be anxious, but as they say "don't put the cart before the horse." The CEA levels are a simple test that may indicate the need for further testing to investigate IF there is a change. When will you be able to have an appointment to talk with your oncologist about next steps?

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@colleenyoung

Hi @denise777, welcome to Mayo Clinic Connect. I can understand that you're concerned about fluctuating CEA levels. As posted above, The CEA testing is notorious for false positives, meaning that the test results may show high levels when they are actually not. That's probably why your doctor ordered several tests.

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/

I know it's really hard not to be anxious, but as they say "don't put the cart before the horse." The CEA levels are a simple test that may indicate the need for further testing to investigate IF there is a change. When will you be able to have an appointment to talk with your oncologist about next steps?

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Thank you so much for your reply! I am actually going to be seeing my oncologist tomorrow 🙏🏼 Last time the were just out of range she waited a month and redid them. I have been fighting a bit of a sinus infection and am wondering if that’s why they could have been just out of range. Last time they were out of range my oncologist told me that she wasn’t concerned there could be multiple reasons that would have them to elevate. She said she would be concerned if the numbers jumped a lot higher. I am trying not to stress my self out over this but it is so much easier said than done 😞

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Met with my oncologist today! She said for me not to worry it is barely considered an elevation. She said that it could be caused by any infection or inflammation that I have going on. And I am fighting this sinus infection. She doesn’t need to see me or need for me to don my labs till February 🙏🏼♥️

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@denise777

Met with my oncologist today! She said for me not to worry it is barely considered an elevation. She said that it could be caused by any infection or inflammation that I have going on. And I am fighting this sinus infection. She doesn’t need to see me or need for me to don my labs till February 🙏🏼♥️

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@denise777 that is great news. I'm glad that you got an expert answer so quickly from your oncologist who knows you. I hope you feel more settled.
On another note, have you ever used a Neti pot for sinus infections? I used to get them like clockwork every spring. Now I use the Neti pot if I feel an infection starting and I'm usually able to prevent a full blown infection and avoid taking antibiotics.

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I was treated for stage 3a colon cancer with operation followed by 6 mos chemo in 2020. CEA levels were normal after chemo but in the next couple of years rose to 6.3, then 11.4 and now 18. I had another colonoscopy after the first rise and then a catscan, petscan and another catscan. Scans continue to show no problems. I read a research paper that said rise in CEA can proceed detection of recurrence. Any thoughts?
Thank you

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@mcb1368

I was treated for stage 3a colon cancer with operation followed by 6 mos chemo in 2020. CEA levels were normal after chemo but in the next couple of years rose to 6.3, then 11.4 and now 18. I had another colonoscopy after the first rise and then a catscan, petscan and another catscan. Scans continue to show no problems. I read a research paper that said rise in CEA can proceed detection of recurrence. Any thoughts?
Thank you

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@mcb1368, as you probably already know, CEA levels can mean many things. "Studies suggest that falsely elevated levels may occur in up to 50% of colon cancer patients post treatment leading to unnecessary anxiety and testing." You can read more in this helpful article:
- Understanding The CEA Test in Colon and Gastric Cancer https://news.cancerconnect.com/colon-cancer/understanding-the-cea-test-in-colon-cancer

It looks like your cancer team is being very thorough by not relying on the CEA test alone, but also cheking things with a colonscopy, CT scans and a PET scan. With CEA tests, it can be helpful to watch the trend over time. When do you go for your next follow-up?

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@colleenyoung

@mcb1368, as you probably already know, CEA levels can mean many things. "Studies suggest that falsely elevated levels may occur in up to 50% of colon cancer patients post treatment leading to unnecessary anxiety and testing." You can read more in this helpful article:
- Understanding The CEA Test in Colon and Gastric Cancer https://news.cancerconnect.com/colon-cancer/understanding-the-cea-test-in-colon-cancer

It looks like your cancer team is being very thorough by not relying on the CEA test alone, but also cheking things with a colonscopy, CT scans and a PET scan. With CEA tests, it can be helpful to watch the trend over time. When do you go for your next follow-up?

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CEA levels can mean many things but when it keeps rising there is probably a problem. Only you truly know your own body. It turns out that my “team” believes it has metastasized to my liver and nodules also appeared (previously undetected bc they were in a difficult to see area?) in the lining of my colon. My liver biopsy is on Tuesday.

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@mcb1368

CEA levels can mean many things but when it keeps rising there is probably a problem. Only you truly know your own body. It turns out that my “team” believes it has metastasized to my liver and nodules also appeared (previously undetected bc they were in a difficult to see area?) in the lining of my colon. My liver biopsy is on Tuesday.

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You're right. The trend over time is a key factor to take into consideration. Thank goodness your physicians are so thorough. All the best for Tuesday. I'll look for your update (should you choose to share it).

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