Worried about rising CEA levels

Hi, Sadly my Dear Mom passed away on February 3rd, 2023 from stage 4 colon cancer. She was so brave throughout the 6 year battle. In the past couple of years, the rising CEA was often a huge source of stress to her and the entire family. I think what is critical with a rising CEA is the trend or doubling of... My Mom's last CEA was at 70000 so it can really skyrocket. She had mets to her liver and lungs. For those of you that are concerned with a rising CEA with no corresponding change on a Pet or CT scan there is a blood test that checks for circulating tumor cells. Sometimes lesions cannot yet be picked up on a scan but the CEA can pick up circulating cells. Please urge your doctors to be on high alert for rising CEA levels. They will often say it is due to inflammation or an infection but if the values are doubling/increasing certainly something more sinister could be evolving. We've been through this many years with our Mom and the anxiety can wreak havoc. I wish you all the very best of health. Love to you all.

Hi @merianne42, CEA levels are a useful tool, but imperfect. I can imagine that these rising and falling numbers are freaking you out. Fellow members like @pinkygsp and @mcb1368 know about this first hand.

I moved your post to this discussion so you can easily connect with them
- Worried about rising CEA levels https://connect.mayoclinic.org/discussion/cea-levels/

The back order or drug shortage of some chemo drugs doesn't help with the rising anxiety. I get it. How are you doing today?

My CEA level is at 297.0. It began in April after my surgery to remove colon cancer. I have Stage 4 with mets to the live. At that point the CEA was 69.7. It went from that in April, 2022 to 118.5 in November, 2022. Then it jumped to 175.3 in December 6th and December 27 it took a small dive down to 167.4. This week it has jumped to 297.0. I am freaking out! I noticed in my chart that I have CT scan of chest and CT scan of abdomen and pelvic for Feb 20th. I am praying this does not mean there is more cancer. Am I freaking out for no reason? Is this normal? I am currently in chemo treatments, this week made my 18th infusion. I go back tomorrow to get the pump taken off and then three weeks later more chemo. I was getting it every two weeks, but apparently the 5FU has some sort of back order going on and I am now going in every 3 weeks. This is driving me insane!

Oh, @mcb1368, that's a gut punch. You can bump the attitude in due time. It's okay to be sad too.

Update after 2 separate biopsy’s of different spots is: metastasis in both areas. I’m not surprised but upset, of course. I’m having liver lesion ablated and then doing chemo for 3 months. Possibly/ hopefully another operation after chemo. Got to bump my attitude up a few notches!

Hi Colleen, thank you for your reply. As of now, my husband looks healthy for a 66-year-old except for the cancer diagnosis. His appetite is good, sleeps well and does his normal daily routine. He is also free of aches and pain. I'm hanging in there with him. We try to forget the upcoming CT scan. Hopefully we get some good news. I will keep you updated regarding our journey in fighting this monster of a disease. Thank you.

@pinkygsp, I'm thinking of you as you and your husband prepare for the upcoming CT scan. I'm sure you're experiencing "scaniexty".

CEA levels are a useful tool, but imperfect. As your oncologist mentioned, increasingly CEA levels can mean many things. Here’s some info from the American Association for Clinical Chemistry. https://labtestsonline.org/understanding/analytes/cea/tab/test/ which states “Increased CEA levels can indicate some non-cancer-related conditions, such as inflammation, cirrhosis, peptic ulcer, ulcerative colitis, rectal polyps, emphysema, and benign breast disease.”

I hope the upcoming CT scan gives you answers that have solutions. Are you able to focus on the other positive signs that he looks and feels well, with no other symptoms and that he is able to eat and sleep well? How are YOU doing?

My husband was diagnosed with stage 4 colon cancer with metastasis to the liver on August 2022. He underwent colon resection and started chemotherapy. His initial CEA was 25 then reduced to 10. However, it started going up every week and currently it is an alarming 80.5. My husband looks healthy, eats well and has no complaints of pain or any other symptom. His only complaint is weakness after chemo but sleep relieves this symptom. He had Pet scan and Ct scan of the abdomen and lower bowels. There was no change noted. We are extremely concerned and he is scheduled for Ct scan this last week of October. His oncologist explained the elevated CEA maybe due to an infection. Any ideas? Thank you.

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).

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.