Anxiety around CEA

Annabelle41415 said:

CEA

It's hard to judge a CEA test.  Mine was always normal even though having a tumor and cancer.  Sometimes peoples numbers rise for different reasons.  If you've had all those tests, I'd rely on those more than a CEA number.  Most doctor's won't even do a CEA due to the inaccurate results associated with it and that includes my doctor, but I've always pushed for it.

Kim

Hi Kim,

I understand what you're saying about CEA and how it can vary by person.  For me, it appears to be a good indicator as when I was diagnosed initially back in 2012, my pre surgery CEA was 13.9.  After surgery, my CEA number trended down as predicted through chemo to ultimately get to its lowest at 3.11 with the Bayer/Siemens test and 4.7 for the Roche test.  After 3.5 years of just routine checkups, last summer, I had a spike in my CEA number from 5.6 to 9.7.  Doc thought it was a lab error and did a retest.  11.  Ok.  So not a lab error.  PET/CT was ordered.  Radiologist said nothing found.  I look at the scan images myself and see a bright glowing hot spot in my right lower quandrant of my ab.  I was puzzled how the radiologist declared me all clear when there's an obvious area of metabolic activity.  I used the software included with the scan images to determine the SUV of that area.  6.7.  Hardly a benign situation.

My next course of action was a colonoscopy which I was due for anyways.  During that procedure where I was wide awake, we happened to find by chance a polyp in my appendicial opening.  Not good.  Biopsies taken show high grade dysplasia.  Regardless I have to have surgery to take out at least my appendix.  Consulted with my surgeon who thought a cecectomy was enough to address this until I told him about my elevated CEA numbers along with what I felt was a trigger in my PET scan.  He had the scan images re-reviewed with his radiologist and they think it is a concentration of radioactive tracer in my ureter making its way to my bladder.  I still find it interesting that the hot spot almost lined up with where the polyp was.  So the course of action is to have a right hemicolectomy.  Pathology comes back.  Stage 0 appendicial cancer.  Cancer cells found on the surface of the polyp in situ.  So the biopsy from the colonoscopy didn't paint an accurate picture.

Most of my medical team feels the cancerous polyp triggered the CEA spike.  My oncologist stil holds to the notion that the polyp didn't cause the CEA spike.  And why after all the tests I've gone through he feels it's just one of those situations for me that I have these unexplained spikes.  The plan going forward is to still test CEA to see where the trend is going.

I did have another CEA done ordered by my primary care physician last year just before my right hemicolectomy surgery.  Wanted to see where the number was...if it was still trending up or going down.  The number came back at 9.7.  So it sort of went down but I looked at it as being still the same.  This time, the trending I do believe as there's been months between the first and last test I've had and the number has dipped well below the original test showing the spike.  I guess we'll see where things are in September when I go back for another checkup.

jri_in_wnc said:

Hi zx10

I've experienced big jumps & dips since being diagnosed Stage IV 10/14. Initial CEA was 182. After 3 chemo tx, it dropped to 124 I believe, then to 22. After that it dropped incrementally to it's lowest at 3 something. This year has been rough for various reasons & I've not been able to be consistent with chemo. It climbed to 100, then to 154 in April, most recent 257. I'm scheduled to resume chemo in 2 weeks, with a scan the day before. At no time ever have I bee declared NED and honestly don't expect to be athough it would be nice. I do expect the CT scan to show more growth, especially in the liver as I've been having more discomfort there. While I'm aware of different labs having different results, I honestly don't know which method is used by my local onc vs my team at Duke. Thought I'd throw my 2 cents in, since you said you hadn't seen anyone talk of huge jumps in CEA. ☺

Hi.

Sorry you're still dealing with your Stage 4 diagnosis.  A quick and dirty way to determine if you're being evaluated under the Bayer/Siemens test versus the Roche test is the upper limit for normal.  Under the Bayer/Siemens test, normal was declared for a nonsmoker as 0 to 3.  Under the Roche test it's from 0 to the upper 4s and this can vary depending on the lab.  The lab should be reporting what their normal range is.

Not to discount your reply.  The intent of my thread is for those that are NED and are just in the monitoring phase.  All I see are posts talking about CEA changes of only a few tenths to a point or two.  I haven't run across any threads where there has been a significant jump like mine and any outcomes.  That's why I posted my thread to put out there a situation which for now looks like it's a benign situation for the 10+ point jump I had.

I also asked my oncologist about how common it is to see CEA jumps this high and it turn out to be nothing.  He said with his patients, he's seen some go as high as 20 and it turn out to be nothing.  I asked how many of his patients have exhibited this type of behavior and he said roughly 1 out of 4 of his patients with CEA being tracked.  This isn't a small number and not something that can be considered uncommon....if I am to believe his estimate.

Figured I would bring this back to the top and provide an update.

Had another scan today and got the report a few hours later.  Still NED.  It will be interesting to see where my CEA is since it's been 6 months since my last CEA test.  Going in on the 14th to see my oncologist and get the blood draw.