Worried about rising CEA levels

Hello @revcindy,

I moved your message and combined it with this existing discussion so that fellow members can share their thoughts and insights with you. Simply click VIEW & REPLY in your email notification to find your post.

How are you doing? Are you comfortable sharing what you learned when you saw your doctor after the PET Scan?

Thanks for this!

I had surgery on May 30 to remove the tumor. However, there were cells in the margins. Am currently undergoing SBRT....5 high-dose radiation treatments with a follow up PET scan in 3 months. Between the radiation and the scan, there may also be oral chemo. The team is split on whether or not it will be effective for this kind of cancer. Apparently the location and timing of my recurrence is unusual enough that the research just isn't there. Side effects so far are fatigue and insomnia, not much else.

My biggest concern right now is the ability to return to my job. I've been out on medical leave since May 17. I'm a hospice chaplain so this recurrence is really messing with my head.

gaylemol, if I may ask, have you received any feedback on this? We have a friend with the same issue; very high CEA levels (doubling with each test) but there is no longer any evidence of cancer anywhere. (Her treatment ended successfully in May of 2018.) Thank you.

We have a friend who had colon cancer. Her treatment ended successfully in May of last year. In all her follow-ups there's been no evidence of cancer anywhere in her body. However, her CEA levels continue to rise, doubling between each follow-up visit. Doctors cannot find anything that they'd expect to cause this. She does say that her stomach just doesn't feel normal, but in various scans, they see nothing. After a team consultation, they've decided to open her stomach to see if there is something the scans cannot detect. I would guess that the stomach issue might only be nervousness or anxiety, but that's just my thought or, not doctors. Has anyone experienced or heard something like this? Even just an increasing CEA level after successful treatment? Thank you in advance for any feedback.

@nldan, I can imagine that doubling CEA levels is worrisome for you and your friend. I'm glad that her care team is continuing to investigate. I did a bit of searching around because I was curious about this. 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. That's why a single CEA is never enough information, they track levels over time to watch for trends.

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 also found this case study, where a patient had successful treatment for colon cancer and elevated CEA levels were caused by a second cancer of the thyroid.
- High CEA levels in a case of resected colorectal cancer: delayed diagnosis of metachronous medullary thyroid cancer https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5747095/

@gaylemol, I too wonder if you were ever able to discover the reason for your rising CEA levels.
@revcindy, how are you doing? Have you returned to work?

Thank you, Colleen. I have shared this with our friend and will follow the link you sent. If I come up with something that may be of interest to you or important info on her condition, I will reply again.

My husband has had colon cancer that has metastasized to his lung. His CEA level is 120.4. What does that tell me

Hello @bobbipost,
I’m so sorry to learn about your husband’s cancer–I can only imagine how worried and discouraged you must feel! I’m bringing @lah @brenz @bond007 @soul @sallyg @starrlight @sportsmom9433 into this discussion.

@bobbipost, while we wait for other members to join in, I want you to know that you’re not alone; I’m sure you have a million questions racing through your mind!
Are you able to share more details about your husband? When was he diagnosed? How has he been managing the cancer? I sincerely look forward to hearing back from you.

Hi
I was diagnosed January 2015 will stage 4 colorectal.
I’ve had bumps in the road over the road but up until recently they have been detected early.
In February 2020 my Cea started to rise after removal of a metastatic lymph node removal from the AP window which was preformed robotically. My CEA is now at 64.5.
I’ve had a pet scan as well as 2 ct chest scans, 1 abdomen and 1 pelvis and nothing shows. My oncologist says we need to wait which is stressful especially with this covid thing.
Has anyone else had an unexplained rising cea and what was the outcome. I do understand cea is a sign of inflammation in the body and not always cancer .
Any input would be appreciated
Thanks
Sally

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?