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

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@colleenyoung

@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?

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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.

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@nldan

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.

Jump to this post

@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?

REPLY

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.

REPLY
@gaylemol

I was treated for colon cancer (chemo) three years ago. My CEA levels have gone from 4.0 to 461.0. Ct scans and PET scans are clear, however no one can determine why my CEA level continues to rise

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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.

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@kanaazpereira

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?

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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.

REPLY

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?

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I just got PET scan results in my online med chart, but don't see the doc until April 17...he's on vacation. I'm googling, but would love some help interpreting what I'm reading. I had colon cancer with resection 5 years ago. Stage IIIb. CEA levels have been steady between .5 and 1.8 until 6 weeks ago. Then they went to 7.9, 2 weeks later 6.0, 2 weeks later 10.7. CAT scan was clear. Here's what the PET report says:

"2.2 cm soft tissue nodule just posterior to the right psoas muscle with max SUV of 3.77. This is suspicious for metastatic disease. No additional of suspicious foci identified. A physiologic uptake within the liver, spleen, kidneys, bladder and bowel.
Mild uptake in the uterine cavity is nonspecific. A focal intense uptake in the distal vaginal area is noted. The etiology is uncertain. It may represent urine contamination versus 2 vaginal lesion. Correlation with GYN examination is recommended."

Thanks for any insights you can offer. And I understand that anything you might offer is NOT a diagnosis and DOES NOT substitute for my doctors advice.

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I was treated for colon cancer (chemo) three years ago. My CEA levels have gone from 4.0 to 461.0. Ct scans and PET scans are clear, however no one can determine why my CEA level continues to rise

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@jamesc

I hope everything goes ok for your mom. My Dr says the same about the cea level now. This is frustrating as when first diagnosed he said the opposite. I have a cea now of 8 and originally it was 0 I had a pet scan this past thursday and have an E.R.C.P on this tuesday they plan to go through bile duct into liver to biopsy a hard to reach lesion. One of three new ones since November. Just very frustrated as I am sure you and your Mom are. Good luck.. James

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Just a quick update have results on both tests I have 3 liver lesions that are cancer 1 in centre and 1 on each lobe. I meat with oncologist this week coming to find out what plan is. How is your Mom

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