The Colon Club

CEA can apparently spike for a number of non cancer related reasons. A friend of mine has been cancer free for 7 years but her CEA was always up and down. She has some lung infections due to damage from radiation, which her docs at Dana Farber think could be the cause. They have stopped monitoring her CEA because of this and instead use other bloodwork as a marker (I don’t know what tests they use).
In my experience, the only significant jump in CEA I had was immediately after radiation. With my original tumor and the new ones, my CEA remains in the normal/low normal range. It’s not a good marker for many people.

Nikan1 wrote:Hi ,

I understand your stress very well, when my mother’s CEA spiked to 40 just three months after finishing chemo, your post saved me from nervous breakdown ! Now I hope I can help you to calm down.my mom was diagnosed with stage 3b rectal cancer(recto sigmoid junction ) in July 2017.After first spike in CEA she had a full CT scan with contrast,it was clear, in two weeks her CEA jumped to 73, then to 90 !!!! A pet scan ,endoscopy and colonoscopy was ordered, nothing was found.She had all kind of possible blood works to find a reason, again nothing was found.It came down little by little during a one year period, without any treatment.for last two months it is stable at 1.9,so your significant spike can be a false positive too.

When cancer was found ,her CEA level was 1.8.Doctor said CEA is not a good marker for her, now after all that happened I don’t know what to think.

Hi Nikan1. Thank you for posting this. So far, I have not seen anyone present up any discussions about CEA behavior similar to mine until your reply. The interesting thing was my CEA at my first diagnosis before surgery was 13.9. CEA appeared to be a good indicator for me up until the recent CEA roller coaster.

radnyc wrote:The search is on for a superior testing method based on individual tumor DNA, which is the way to go. I found this quote from Dr. Axel Grothey, a well known oncologist at the Mayo Clinic:

“ Dr. Grothey says he considers CEA to be a valuable surveillance test, but that research into better tests is ongoing. “The future of ‘tumor markers' lies in the determination of circulating tumor DNA, preferably based on a mutational analysis of the resected primary tumor to follow patients with this highly sensitive technology to see if they have evidence of minimal residual disease,” he says.”

There really needs to be a better blood test to track any tumor markers than CEA. Things I've never been able to reconcile since being on this awful journey has been statements about well differentiated tumor cells producing more CEA than poorly differentiated tumor cells. But high CEA indicates poor future survivability. Which conflicts with poorly differentiated tumor cells which don't produce a lot of CEA being also an indicator of poor future survivability.

Amarie123 wrote:CEA can apparently spike for a number of non cancer related reasons. A friend of mine has been cancer free for 7 years but her CEA was always up and down. She has some lung infections due to damage from radiation, which her docs at Dana Farber think could be the cause. They have stopped monitoring her CEA because of this and instead use other bloodwork as a marker (I don’t know what tests they use).
In my experience, the only significant jump in CEA I had was immediately after radiation. With my original tumor and the new ones, my CEA remains in the normal/low normal range. It’s not a good marker for many people.

We may end up ceasing to monitor CEA. Not sure. I have another CEA test next month and I guess we'll see where things are then. Right now, no one knows why my CEA is so out of whack.

zx10guy wrote:We may end up ceasing to monitor CEA.

Although the CEA rise causes you a lot of stress, with CEA rising or accelerating, cessation of CEA monitoring could be an especially bad idea now. While I hope that your CEA mystery is one for the record books on false alarms, I wouldn't literally bet everything on CEA being totally useless and misleading either. With a satisfactory level of investigation, your apparent exception might actually "prove the rule" (model) about CEA.

CEA may have some bearing on size and potential for tissue transformation. Until now, the anomaly has been relatively benign, whether a slow moving cancer or a not-a-cancer mystery. A single lump that doesn't metastasize has more treatment possibilities. One simple model is to view the CEA reactive molecule as a carrier of multiple, different kinds of fittings (epitopes). If this fitting has a counterpart for cell docking then a cancer can spread more easily. So for my wife, this included the too commonly fatal CSLEX1-CA199 pair for CRC metastasis, where CSLEX1 reflects a particular fitting option on the CEA carrier molecule. As long as a "successful" metastatic pair doesn't develop (tumor age/size/hypoxia often matter). A lack of a CSLEX1 reactive fitting or several other fittings, on your CEA reactive tissues might be part of the answer to your mystery, or a lack of CA199 stainable tissues for docking, or both. If the source tissue is cancerous.

In my wife's case there was almost a perfect correlation between lymph node volumes and CEA jumps, clear stairsteps as apparently small lymph nodes became enlarged ones. What scared the hell out of me in 2010, was when her CA19-9 began a much faster, exponential rise after the last, largest CEA jump. Fortunately we were able to increase chemistries until the CA19-9 totally collapsed back to baseline (but CEA was still unchanged), and then get all the big nodes chopped out before a total loss of containment occurred.

I would be finding doctors with bigger toolkits. Depending on resources and affordability,
1. I would demand what secondary markers your doctors are watching and their background.
2. I would consider expanding various blood analyses tried. (especially CA199 at least once)
3. I might look for someone with a CEA related contrast that had passed its phase 1 testing for toxicity in humans. You're not looking for a diagnosis, just an anomaly's location.
4. I might consider trying benign chemistries to stop/shrink the CEA or other anomalies and improve immune surveillance.

This discussion is worthy of its own topic, as it’s of interest to so many group members, mods?

I found a very interesting article on pubmed:

https://www.ncbi.nlm.nih.gov/m/pubmed/29579327/

The premise is that CEA by itself may not be such a useful metric for recurrence surveillance. The take away:

“ CONCLUSION: Interpreting trends in CEA measurements instead of single CEA test results improves diagnostic accuracy for recurrence, but not sufficiently to warrant it being used as a single surveillance strategy to trigger further investigation. In the absence of a more accurate biomarker, monitoring trends in CEA should be combined with clinical, endoscopic and imaging surveillance for improved accuracy”

So here's an update on my situation. Had my follow up with my doc on Monday. Had blood work done and a chat with him about my situation. He still doesn't know why my CEA is so far out of whack. Again says it could be stress related. But he's not sure.

I just got my blood work results today. CEA is down. 44.4. So a drop from the previous 51.9. At least it's not going up. So I see my doc again in 6 months. He also said no more scans. Just blood work. I'm a bit shocked by this next step on my journey. So I guess I can now declare myself officially 7 years NED from my first cancer diagnosis and 3 years from my second.

That's fantastic, a nice present just in time for the holidays!

Congrats! Enjoy it and try to forget about that dammed CEA for a while!

Thank you both.

Yes, this CEA mess I'm in is has been very tiresome. It's similar to you walking a desert and you see water in sight. But every time you think you're close, the water keeps moving. My follow up scans have always been clear and you would think that would be reason for celebration. But this stupid CEA keeps putting a but......

Hi,
Do your CT/PET scans include the head ?

Yes. It said skull base on the order but it actually did include my head. It was also discussed in the scan report by the radiologist as being clear. That was the only variable of where I hadn't had a scan done. But the PET/CT has now ruled that part out.

Benign polyps AND stomach ulcers (from the Excedrin) can cause elevated CEA's as can hypothyroid and Biotin found in vitamins. I had a slightly elevated CEA with bad sinus infections and walking pneumonia.

BTW....... MRI's for abdome/ CT for lungs, etc.

Bev who died last year from diabetes had a very high CEA with no cancer. Inflammation is a cause of CEA and one study was mentioned that bad hemorrhoids might elevate CEA.