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.

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.

REPLY
@pinkygsp

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.

Jump to this post

@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?

REPLY
@colleenyoung

@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?

Jump to this post

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.

REPLY
@colleenyoung

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).

Jump to this post

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!

REPLY
@mcb1368

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!

Jump to this post

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

REPLY

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!

REPLY
@merianne42

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!

Jump to this post

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?

REPLY

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.

REPLY

My CEA levels have also been jumping around. The Drs. don't get excited about it, but I sure do. I have colon cancer with a lot of mets in my liver.(25) I have been getting chemo for 9 months. (No surgery. There's too much cancer). I started with CEA levels of 323. At first they went down steadily and got as low as 5. In November I got my 4th Covid shot and had a fever, body aches etc.. and the next CEA level jumped up to 19. It's gotten as high as 24 and my liver tumors have stopped shrinking. Have any of you seen your CEA levels rise with a Covid vaccine? Or maybe with any fever? The Drs say not to take the CEA levels too seriously but it's pretty hard not to, especially when the tumors have stopped shrinking and are maybe growing. It has occured to me that maybe the vaccine was not only responsible for rising CEA levels, maybe it did something to my immune system that caused the chemo to stop being as effective? I'm not an antivaxer by any stretch. I've gotten every shot and booster. But I can't help but wonder if I shouldn't get anymore Covid vaccines while I'm trying to fight this disease. Any thoughts? Anybody have a similar experience?

REPLY

I personally would not introduce any vaccines or medications (that are otherwise taken by patient choice) while receiving cancer drugs. Also during times of blood testing and having Scans.
It would be further advised to review everything that you eat and drink. I have eliminated everything that has any detriment to gastrointestinal health. It's a long list.

REPLY
Please sign in or register to post a reply.