Terrified of rising trend (another CEA post)

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Punky44
Posts: 497
Joined: Mon Oct 01, 2018 4:29 pm

Terrified of rising trend (another CEA post)

Postby Punky44 » Mon Mar 22, 2021 12:26 pm

Hi guys.

My mom just got her results from her 3 month CEA and it’s 3.4. We’ve gone from 2.4 to 3.0 to 3.4 in the last three tests—I am really nervous about this. It seems to be a rising trend and it’s now over the upper limit of normal. The nurse told my mom on the phone that the doctor labeled it “stable.” Should we be pushing for anything?

Just an update to add: my mom went to a different lab this time and I found they use Roche vs Beckman Coulter—would that make a difference? They have different reference ranges (this one says 0-4.7 whereas her others have all said 0-3.0).
Caregiver to my amazing mom (68 at dx)
10/1/18 DX with rectal cancer; CEA 17
T3N2M0
Total neoadjuvant therapy:
8 rounds Folfox 11/5/18 - 2/11/19
Short course radiation 3/14/19 - 3/20/19
Robotically assisted laparoscopic LAR 3/21/19
Pathology report says yT2N0M0 with 0/38 nodes
6/28/19 Reversal and port out
CEA 2.1; 1.9; 2.6; 2.8; 2.3; 2.4; 3.0; 3.4; 3.1; 3.4; 3.0; 3.1; 2.6
Latest update: 8/21/23 Clear CT with CEA 2.6!

Me: 34, first colonoscopy 11/16/18—normal! Come back in 5 years.

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ginabeewell
Posts: 565
Joined: Wed Oct 24, 2018 10:30 am

Re: Terrified of rising trend (another CEA post)

Postby ginabeewell » Mon Mar 22, 2021 3:23 pm

You'll get different results with different tests. I've been 1.1 at Northwestern and 1.7-2.3 at MSK. So it sounds to me that the higher result is just a factor of being on the different test with the higher scale - meaning nothing to worry about!
49 YO mom of twins (11) lucky stepmom of 16/19 year olds
9/17/18 DX stage 4 CRC w inoperable liver mets CEA 931
Currently NED!

Join me on a lookback of my journey via my Strive for Five on Substack here:
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https://www.weareallmadeofstars.net/col ... nt-journey

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Punky44
Posts: 497
Joined: Mon Oct 01, 2018 4:29 pm

Re: Terrified of rising trend (another CEA post)

Postby Punky44 » Mon Mar 22, 2021 6:39 pm

Thank you Gina <3

I did a search on here for Roche and found a bunch of posts about people seeing a rise/above normal number when switching to Roche. I am praying that’s all this is. My mom doesn’t seem concerned in the slightest now that she knows the methodology/scale were different. I’m still kind of shaken up but the posts I’m reading are giving me some reassurance.

We are never going to LabCorp for this test, like, ever again. Good grief.
Caregiver to my amazing mom (68 at dx)
10/1/18 DX with rectal cancer; CEA 17
T3N2M0
Total neoadjuvant therapy:
8 rounds Folfox 11/5/18 - 2/11/19
Short course radiation 3/14/19 - 3/20/19
Robotically assisted laparoscopic LAR 3/21/19
Pathology report says yT2N0M0 with 0/38 nodes
6/28/19 Reversal and port out
CEA 2.1; 1.9; 2.6; 2.8; 2.3; 2.4; 3.0; 3.4; 3.1; 3.4; 3.0; 3.1; 2.6
Latest update: 8/21/23 Clear CT with CEA 2.6!

Me: 34, first colonoscopy 11/16/18—normal! Come back in 5 years.

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Green Tea
Posts: 445
Joined: Mon Oct 24, 2016 10:48 am

Re: Terrified of rising trend (another CEA post)

Postby Green Tea » Tue Mar 23, 2021 12:28 am

In 2013, weisssoccermom wrote:The first and most important thing to do is find out which test was used at each time you've had your levels tested. A few years back, the main test used was the Bayer/Seimens testing method (can't remember which company bought the other out....the two names are used interchangably). Then around September of 2009 (I believe), I was talking with my surgeon who brought it up that some labs had begun to change to the Roche assay method which does have totally different normal values. One of her patients had an issue because her levels had spiked from something less than 1 to 2+ and understandably this patient was totally freaked. My surgeon called the lab and it was only then that she learned that a new methodology was being utilized. I remember passing this information onto the board back then. So, check that out. The two levels are not the same and you just can't compare the two. So yes, there are different tests that use different reagents....and they register different normal levels. You are also quite right that the levels for smokers/non smokers are different...but keep in mind that you need to keep comparing apples to apples.....the same test to the same test. Neither test is more sensitive than another....just different. Either one is perfectly fine. The confusion comes in when you look at the different 'normal' levels and they're not at all close to each other.

Levels during chemo oftentimes come back as high.....it truly is nothing to be concerned about, particularly since yours came down after chemo was done. I know it can be disturbing but truthfully, it is nothing you need to be concerned about. You'll find that many on the board saw a spike in their CEA levels during the first part of their chemo cycles and then the numbers dropped again.

Yes, your doc is quite correct that, based on the first draw having a high normal of 2.4 (that would be the Bayer/Seimens method), you did register above normal. While it wasn't 'off the charts' high, it was, nevertheless above normal so it 'appears' that the CEA level might be a good indicator for you. Again, you have to remember that you just can't look at the numbers (from different testing methods) and compare them to one another. It's important that you find out which methodology is being used and keep getting your levels tested at the same lab in the future.

Hope this helps.
Jaynee

michelle c
Posts: 1929
Joined: Wed Dec 02, 2009 3:58 am

Re: Terrified of rising trend (another CEA post)

Postby michelle c » Tue Mar 23, 2021 10:32 pm

Yes, it can definitely make a difference going to a different lab where they use a different assay/testing. I always go to the same lab for this reason as I want an accurate result based on my previous results at the same lab. Consistency with labs is definitely the key to receiving an accurate picture of CEA results. Have her take her next test at the lab where she had the previous one and always go there. Best wishes. Try not to worry xx
May 25 2009 Dx with CC (sigmoid colon) 2 days after my 44th b'day
CEA prior to surgery 4.7
Jun 3 2009 LAR - Stage III 3/10 lymph nodes
Jul 6 - Dec 10 2009 - 12 cycles FOLFIRI
Genetic testing - inconclusive for Lynch
Jul 2012 port removed & hernia repair

jumpman50512
Posts: 43
Joined: Thu Jan 10, 2019 10:36 pm

Re: Terrified of rising trend (another CEA post)

Postby jumpman50512 » Thu Apr 01, 2021 10:06 pm

How does she feel? she is still in the normal range also by the way. Have her exercise that always helps. Try not to worry. Her CEA is not making huge jumps by the way which is good in my opinion...
Stage IV Survivor Currently (Diagnosed @ 29) currently 36
1 Met to the Liver
Colo-Rectal cancer surgery
12 rounds of chemo + Radiation + Oral Chemo
12/1/21 Colonoscopy Clean
2/1/21 CT scan Clean
2/1/21 CEA at 5.8
4/1/21 CEA currently at 8.8
5/27/21 CEA currently at 13
Signatera Positive :cry:
Clean CT Scan 4/15/21
It's back :cry: 6/24/21
7/10/21 - 4/10/21 = 10 rounds of folfiry
On Xeloda for a while :(
Chemo pills + chemo + Vectibix currently

NoVA21
Posts: 13
Joined: Thu Feb 25, 2021 7:15 pm

Re: Terrified of rising trend (another CEA post)

Postby NoVA21 » Sat Apr 03, 2021 3:05 pm

Different test definitely will give you different results that should be interpreted based on their own set of ranges. In addition, sometimes CEA level can be a good marker for one person but not reliable for another. When will her CT be? That will give you more assurance.

Was there a reason your mum’s doc switched lab?
Dx Jan 2015
Colon Resection Feb 2015 stage 3B
Folfox started Mar 2015
Could only finish 11 out of 12 rounds
Mar 2016 dx mets on both lungs - officially stage 4
Apr 2016 double lung resection
By the grace of God, am still clear today.


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