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Elevated CEA with clean scans

sreekanth
Posts: 61
Joined: Apr 2017

I came to this forum because I am perplexed with my CEA results. My cancer history and CEA results are shown below. My CEA has always been normal for the last four years. Suddenly last week, it was measured at 15.6 and today (after 5 days) at 17.3 ! It seems to be going up by multiple points in few days. Anyone in the same boat.?How long did CEA rise for you guys before a scan picked up some tumor?

I feel fine but I worry I have some unseen  tumor somewhere that is growing . I have a colonoscopy in a week

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3/21/17: Dx T3N0M0- distal rectal cancer, 4.5cm tumor, 2.5 cm from anal verge
4/18 to 5/22/17: chemoradiation - Xeloda 1800mg twice a day for 25 days, 200 Cgy/day
6/28/17: biopsy shows no cancer
8/09/17: MRI - no primary tumor left, starts wait and watch
8/17/17 to 12/1/17: mop-up chemo with Folfox and oxaliplatin (IV infusion), every two weeks
5/19 expanding right lung nodule, 8mm
8/19 VATS wedge
9/19, 12/19, 4/20, 7/20, 1/21- Clean CT, MRI, NED
7/17/21- Clean scans, CEA 15.6 !
7/22/21- CEA 17.3 !
Trubrit's picture
Trubrit
Posts: 5512
Joined: Jan 2013

I had a recurrence after my surgery/chemo/radiatoin. It happened on my second CT scan. My first being clear.  It was my CEA jumping by leaps and bounds, that alerted my Oncologist. I mean it went from 1 - 10 - 20 within a two week period. 

Unfortunately, feeling fine is not an indicator at all. I felt fine, right up until they found a tumour blocking my colon. And I felt great, right up until they told me there was a tumour in my liver.  That is why they call Cancer 'The silent killer'.  

I am glad you are getting a colonoscopy, and if that is clear, I hope they follow up with a PET scan. 

CEA can be very unpredictabe, and something like an infection can cause it to rise, so it isn't always an indication of Cancer, but definitely something to check out.

Nothing any of us say will alleviate the fear that will dog you, until you find out what is going on, if anything. 

I wish you all the best, and hope that it is nothing more than a hidden infection, somewhere in your body. 

Let us know how things turn out.    

TRU

 P.S.  My recurrence was SEVEN YEARS AGO and I have had clear scans ever since.  So, even if 'it is back' it is does NOT mean that the end is nigh.  

 

sreekanth
Posts: 61
Joined: Apr 2017

Thank you Trubrit for your response and very kind remarks.

If this is a recurrence, it would be my second recurrence.

Primary diagnosis was in colon- Four years ago. CEA stayed less than 0.5 before , during and after treatment.

FIrst recurrence was two years ago- solitary lung nodule. CEA was normal before and after treatment.

If the latest result is a recurrence, it might be elsewhere - hence the different behavior of CEA. Usually liver mets elevate CEA. My CT says everything looks normal in the liver, who knows when something will show up in the scan??!!!

grammadebbie's picture
grammadebbie
Posts: 471
Joined: Jun 2009

It is no fun when these things creep up on us.  I have found in my case CT scans have not picked up my cancer.  My CEA is running high for me 4.7  nor

mal runs about 3.2.  My colonoscopy and CT scans came back clear but my PET scans 2 months apart show suspicious active malignancy at a the orginal resection sight.  2 sights one the size of a peanut and one a grape.   I don't want to have exploratory surgery without knowing what it is.   I live in Nevada and they have no major cancer centers here.  I have been referred to Univ CA Irvine Cancer Center.  I have an appt  the 30th and will let you know what I find out.  Hope you can have a PET scan.  None of these tests are 100% so we need to be advocates for ourselves.  The odd thing with me is I have been NED since 2007.

Praying for no more recurrances.  Try to enjoy everyday!

SnapDragon2's picture
SnapDragon2
Posts: 582
Joined: Nov 2019

Maybe a liver MRI.  I have read about liver MRI's showing mets when CT scan can't pick it up.

sreekanth
Posts: 61
Joined: Apr 2017

Thanks SnapDraon for responding.  I also think it is likely a liver met. My CT and MRI taken on same day as CEA shows nothing. I will ask my doc when he thinks we should image it again...perhaps I can have the same images reinterpreted by another radiologist

Trubrit's picture
Trubrit
Posts: 5512
Joined: Jan 2013

Insurances hate to pay up for them, but it is worth the fight.

Tru

SnapDragon2's picture
SnapDragon2
Posts: 582
Joined: Nov 2019

As Tru said maybe PET is the other option to find out where it is.

CEA climbs like that is def an alert to something.  Be your best advocate.  No one cares about you more than YOU.

Have you looked into ctDNA testing?  I have read so much about it.  It has sensitivity of 90 something percent whereas CEA is only 40-60 something %.  It can detect reoccurence up to 8 months before anything shows up on a scan.  To me that means not missing the surgery boat.

Are your other blood panels looking good?

sreekanth
Posts: 61
Joined: Apr 2017

In preparation for the colonoscopy on 8/2, I had two test results- Comprehensive Metabolic Panel and CBC with platelets and differential. THis was done Friday 7/30/21. For both tests, all values were in normal range

darcher's picture
darcher
Posts: 304
Joined: Jun 2017

   I also had very low CEA numbers before, during, and after treatment. Without actually seeing the tumor and based on everything else, blood tests etc, there was nothing wrong. I had colrectal cancer and a large brain tumor. Go figure, lol.I have to wonder, is it specific to certain locations of cancer or does it depend more on the person's makeup as to what the numbers mean. Hang in there. More than likely it's nothing but the usual oscilations of what ever it is. 

sreekanth
Posts: 61
Joined: Apr 2017

Yes, I have read some material that says that CEA is highly sensitive to liver and bone lesions. (compared to lung). Your story about brain tumor worries me. I hope you are okay. Thank you for responding darcher

Annabelle41415's picture
Annabelle41415
Posts: 6722
Joined: Feb 2009

CEA can be unreliable in a lot of people, just like you said the first time it was completely normal and now it is rising without showing anything.  I'm glad that you are getting a colonoscopy just to rule out any hidden polyps that might be growing and not showing on scans.  Is your doctor concerned regarding the results?  You might ask them what they think.  I'm wishing you the best outcome for your scope next week.  Please keep us informed.

Kim

sreekanth
Posts: 61
Joined: Apr 2017

Thank you Annabelle for respondinfg. My oncologist is definitely concerned. One step at a time.  Colonoscopy in a week

sreekanth
Posts: 61
Joined: Apr 2017

I had my colonoscopy today and no tumor or polyp was found. The doc said that the insides were 'pristine'. Now what?
Maybe my oncologist will return from vacation and order a PET

Trubrit's picture
Trubrit
Posts: 5512
Joined: Jan 2013

Pristine colon. How wonderful! Who would have guessed that one could get so excited about hearing those words. 

Definitely mention a PET scan to your Oncologist. Then be prepared for a fight with the insurance.  OK, I guess everyone doesn't get the push back from them, but often times they think they know better than the Oncs. 

I'm sure he will check your CEA again. Maybe this time is will go down. 

Wishing you the best. 

Tru

sreekanth
Posts: 61
Joined: Apr 2017

Thank you for your advice TrueBrit

sreekanth
Posts: 61
Joined: Apr 2017

The PET scan found a hypermetabolic lymph node in the pelvis measuring 1.6cmx1.2 cm (near obturator chain in pelvic region) that was ruled 'recurrence' unless proven otherwise. I am so bummed. Has this kind of met been treated for any of you? If yes, please share details. I have not met with my oncologist yet.

The PET did not find any other lesions or lymph mets

abita's picture
abita
Posts: 1072
Joined: Dec 2017

sorry to hear that

sreekanth
Posts: 61
Joined: Apr 2017

Thank you Abita

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