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Useless CEA, nearing one year since surgery

Real Tar Heel
Posts: 36
Joined: Nov 2019

Is anyone else here have this situation where your CEA was in the normal range even with a tumor present? I didn't have the test done before surgery to remove the colon tumor. I had it after and it was 1.5, the same week they discovered the liver met. I've had three tests and it has never been higher than two, it actually went up when I started chemo (back down below 2 now). What do your medical pros think about the CEA if you're in this situation?

I'm coming up on the one year anniversary of the first surgery. Guessing it is a milestone, hopefully I'll have something to celebrate when it happens. Funny that the measurement usually begins with the diagnosis when it is likely we've been carrying a tumor or tumors for years. Maybe we can rethink it, we've been survivors longer than we realize.

SandiaBuddy's picture
SandiaBuddy
Posts: 984
Joined: Apr 2017

For some, CEA seems to be a good indicator, and for others, not.  As for me, my CEA was very low before and after surgery.  It is not a good indicator for me, and from my recollection, for many more people on this board.

Annabelle41415's picture
Annabelle41415
Posts: 6346
Joined: Feb 2009

My CEA was never a good indication even during active cancer and was always normal.  A lot of doctors don't rely on it as it is so unpredictable and very inaccurate for some patients (like me).  A scan is a much better method of diagnosis.

Kim

Real Tar Heel
Posts: 36
Joined: Nov 2019

Thanks

PamRav's picture
PamRav
Posts: 265
Joined: Jan 2017

Mine was 29 at diagnosis.  Came down to normal after three rounds of my inital chemo 

ive had two reoccurences, mets to lung.  Each time Cea remained normal. No change at all.   

Butt's picture
Butt
Posts: 345
Joined: May 2018

I started with 2200 or so. I recurred with 2.7. 

Annabelle41415's picture
Annabelle41415
Posts: 6346
Joined: Feb 2009

It seems unusual that the test was accurate for the first diagnosis, but normal under the second.  Mine was always normal so the test was useless to me.  Maybe the CEA just isn't a good indication even if it starts out to be.

Kim

zx10guy
Posts: 237
Joined: Dec 2013

Per my posts, I've come to a conclusion CEA is a horrible test.  Unfortunately, it's what we have and is what is considered a standard test for us.  While everyone talks about no change in CEA and having a recurrence, I'm on the other end.  My CEA at diagnosis before surgery was 13.9.  After surgery and chemo, it dropped to the lowest at 3.11 under the Bayer Siemens test.  When the lab I was using changed testing assays to Roche, my CEA was 4.7 and was finally in the normal range.  I changed doctors and labs and my CEA was hovering in the 5's.  It was this way for a couple of years until around when my second cancer was discovered and considered a new primary.  CEA spiked to 11 and went back down to 5.4 after surgery.  Then spiked back up again to 16.7 after 3 months from the 5.4 measurement.  My CEA then bounced from 20 to 11 for about 2 years until recently where it jumped to 26, then 28.6 (6 months later), and then 52.6 (6 months after).  The last test (earlier this month) came in at 44.4.

I've had every possible exam, scan, scope possible through out the 3 years I've been dealing with this latest CEA rollercoaster and nothing has been found.  There are some that use CA 19-9 as another blood test for a predictive test.  And there is a growing movement to add in liquid biopsies as more and more people feel liquid biopsies are a better predictive indicator of cancer activity.  I chose not to do a liquid biopsy at this point.  To me, if it does come back positive, what do I do?  My friend who is going through cancer said I would go on low dose chemo.  I don't know.  At some point, I just have to live life and not let this whole craziness with cancer be what my life is.  Right now, nothing can be found and I'm just going to go with it.

Annabelle41415's picture
Annabelle41415
Posts: 6346
Joined: Feb 2009

Scans would seen more predictable than a lab test.  There are so many lab tests that can prove to be wrong.  It's good that you are still scanning good.  Yup, live life and live with how you feel and what your doctor tells you.  Wishing you continued good scans.

Kim

zx10guy
Posts: 237
Joined: Dec 2013

Hi Kim.

Thanks for the well wishes and the same to you.  The interesting thing is my doc has said no more scans now.  Just blood work.  I find this interesting as so far my CEA results are all over the place and unpredictable.  So the next time I see him which is in June, it's just blood work.  I think he has seen enough scans over the 3 years to feel comfortable that there doesn't seem to be a cancer component to my CEA elevation.  I also think he is taking into account the number of scans I've had since my initial diagnosis.  I have a thick stack of scan reports along with a mountain of CDs.  So yeah, I've been exposed to a lot of radiation to include 4 PET scans which are the worst in terms of radiation dose.

Steelkiwi686's picture
Steelkiwi686
Posts: 63
Joined: May 2019

Real Tar Heel

Funny you should mention how long one actually may have been a survivor before being diagnosed. My oncologist recently mentioned that i probably had that mass growing for ten years!

ugh can't unknow that but it blows my mind to consider I'm already a long time survivor, haha

As for the CEA although I am tested regularly it doesn't seem to be a good indicator in my case and is rarely discussed. 

 

 

 

Real Tar Heel
Posts: 36
Joined: Nov 2019

Yeah, the CRC surgeon says I was lucky to get the colonoscopy at the right time. It was just me being persistant with doctors who thought my anemia was no big deal over a few years. Has me thinking about the resilience of our bodies. We seem fragile, but we can really withstand a great deal.

LSU2001
Posts: 26
Joined: Dec 2017

In contrast to most others in this thread the CEA test has been a very good indicator of cancer activity.  After my radiation to the primary tumor and two liver resections, my CEA dropped from around 290 down to normal.  When it re-occurred in my liver, while on a maintenance chemo regimen it jumped up to the upper 50s and as soon as I started back on full Folfiri it took 3 treatments to get back to normal.  THis past october, I went back on Maintenance chemo with the understanding that when the CEA started going up I would start back on Folfiri.  I went 8 weeks on maintenance and the CEA crept up to about 12 from 2.3.  I started back on folfiri December 10th and I have my next treatment tomorrow 12/31/19 so I should see  some reduction in CEA. (had to wait an extra week due to low platelet count)

Hopefully, it continues to be a good indicator for me. 

Tim

BGNor's picture
BGNor
Posts: 29
Joined: Feb 2018

I never had any elevated CEA. Not with the rectal tumor or after lung metastasis. I have 15-20 lung mets. Even after 2 years with mets, I'm symptom free and with a CEA I the normal range. So, CEA is not a definitive indicator.

zx10guy
Posts: 237
Joined: Dec 2013

I wanted to add and this can be confirmed by just looking up information about the different types of cancer cells from well differentiated to poorly differentiated with regards to CEA.  Well differentiated cancer cells are said to express more CEA.  Poorly differentiated cancer cells are said to express less CEA.  Yet, well differentiated cancer cells have a better positive prognosis over poorly differentiated cancer cells.  Does anyone see the paradox here?  High CEA is bad but the very cancer cells which are deemed as a good prognosticator are well differentiated cancer cells which are said to produce more CEA.

In addition, there are other benign factors which influence CEA such as hypothyroidism, peptic ulcer, etc.  This is the reason why treatment decisions are not made on CEA alone and why CEA is never used as a way to screen for cancer.  This is why I keep saying CEA is a horrible test and something better should have been developed.  This could be the liquid biopsies I keep reading about which goes about detecting DNA in the blood similar to what Cologuard does.

Annabelle41415's picture
Annabelle41415
Posts: 6346
Joined: Feb 2009

I'm not sure how accurate that report is because CEA wasn't accurate for me and I'm here 11 years later.  It's hard with statistics as they can be so inaccurate depending on the situation.

Kim

Real Tar Heel
Posts: 36
Joined: Nov 2019

I'm in the "well differentiated" camp but my CEA is low. My latest scan didn't find any mets. I guess one reason I posted this is I have a friend who has unfortunately had a lot of experience with friends, family and herself with cancer. She always asks me about the CEA number and is always excited that my number remains low. Whenever I remind her that it was always normal even with mets she just brushes it off. She's learned something different from the doctors she's dealt with. It seems the only thing we here agree on is that CEA level doesn't mean that much.

PhillieG's picture
PhillieG
Posts: 4906
Joined: May 2005

When I was dx'd my CEA was around 1.6. My oncologist suggested that I don't dwell on the numbers because it usually isn't accurate as far as tumor activity goes. CEA can change throughout the day. In the beginning...I found that it was kind of accurate. If it jumped a full point there usually was something going on. Many years later, 65-70 is my new normal.

I prefer to use the scans as my reference point now

zx10guy
Posts: 237
Joined: Dec 2013

Are you saying you're NED with your CEA at 65 to 70?  How long has it been this way?

PhillieG's picture
PhillieG
Posts: 4906
Joined: May 2005

I've been in continuous treatment (with short breaks here and there) since Feb 2004. I don't have the original number since MSKCC's portal only goes back to 2006. At that time it was 1.6, Feb 2008 it was 4.6, Feb 2009 it went down to 1.9, Feb 2019 it was 49.7, and most recently it's at 73.1
So it's really been all over the place. I've never been in remission either. I've been told that I hold the record for the longest continuous treatment. All things being equal I'd rather be the fasted guy on my street but I had no say in the matter

Wink 

Capox Dude's picture
Capox Dude
Posts: 54
Joined: May 2019

and I had a tumor so big it took up the whole cecum.  After surgery CEA is between 2.1 and 1.4 the last 8 months, slightly falling     But as my CEA did not sky-rocket when I had my big-'ole 3Tn1 cancer, I'm not gonna get jazzed about a normal CEA now.  Too many folks have normal CEA and then reoccur.

This disease just likes to mess with us.

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