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CEA Levels

jaybel
Posts: 11
Joined: Apr 2017

Hi everyone. I am new to these discussion boards, and was diagnosed with stage 1 colon cancer in September 2016. I had 23 lymph nodes removed and all of them were clear, and I also had a CT scan that was good. 

My concern is regarding my CEA levels. Although I feel fortunate that my cancer was caught early, I still have worries about my CEA blood tests and it is causing me anxiety. Has anyone experienced fluctuation in their results? Here are mine: 

9/21/16 - CEA was .9

Day of surgery 9/26/16 - 1.5

10/13/26 - less than .3

1/10/17 - .5

4/6/17 - .6 

I am concerned that after the surgery it was very low, but it is slowly going up within the last 6 months and that this could be a sign of slow tumor growth in my colon where the CT scan is unable to detect. My doctors are not worried, but my next colonoscopy will be a year from my surgery date. Does anyone have a similar experience to this? Thank you for any help or advice! 

 

abrub's picture
abrub
Posts: 2094
Joined: Mar 2010

Mine commonly ran around 5.0 while I remained cancer-free.  There are many factors other than cancer that can cause fluctuations in your CEA; general inflammation for one.

But I've NEVER had a CEA below 1.0.    It's not how low can you go, it's a matter of staying within normal limits (WNL).  Don't let these numbers frighten you - at this level, they are meaningless, even if they trend up.

Take a deep breath - you're okay!  (Btw, my recent surgery was the day after yours.  No follow-ups for me until May - 8 months post-op.  And we don't worry about CEA.)

Alice

jaybel
Posts: 11
Joined: Apr 2017

Would you mind me asking what stage your colon cancer was?  Mine was Stage 1 with T2 tumor, 23 lymph nodes with no cancer spread. My follow up is every three months bloodwork and every six months CT scans.  

db8ne1's picture
db8ne1
Posts: 141
Joined: Feb 2013

Mine was low when I was diagnosed - and all through treatment.  I stopped having it checked in 2013 as it was not a good indicator for me.  It may not be a good indicator for you, either?  Also, anything in the 1.0 - 5.0 is considered "normal".  Lots of things can make it go up further than that - and still not be tumor growth.  

I have annual CT scans and colonoscopy every 2 years (because of reoccuring polyps).  

Wishing you the best!

J

Trubrit's picture
Trubrit
Posts: 4832
Joined: Jan 2013

When my CEA went from .5 to .6 I about freaked out.   Its what happens when you have been diagnosed with Cancer; especially when it has been a recent diagnosis, like yours.   

Truth is of course, that your CEA, like your weight, can fluctuate for no reason at all. How frustrating it is when you get on the scales after eating healthy and find you've gone up 5 tenths of a pound.  Its the same with CEA. It goes up a little, then a little more (and when we're talking little, .5  .7  it is little) it is still frightening to us, but it is normal. 

If you're a non-smoker, they consider your CEA normal until its above 3.0  I've heard of some Oncologistst say 5.0.  And for some people, CEA isn't even a good indicator. Also, other things going on in the body can influence the CEA results.   And one more thing, from my understanding, there are two ways to test your CEA blood results, and one always test a little higher. When I changed to a different lab fro my blood work, my CEA went from .5 to 1.6 (yes, I freaked out); but then I was told that my blood had been tested at a different lab, which tests come out higher. I've been fluctuating around 1.0 - 1.7 ever since. 

So welcome to the forum.  You are just being a normal Cancer patient, with all the anxiety that comes with the diagnosis. And we here on the forum are happy to let  you know that you can chill. All should be well.  But, with everything, we always advise you to talk to your Oncologist if your worries persest. 

TRU

Betsydoglover's picture
Betsydoglover
Posts: 1254
Joined: Jul 2005

Your CEA levels are all low.  You could test them twice a day and they would be different.  My oncologist says that they are taught to only watch CEA when it gets above normal.  (I freaked out when my CEA went up to 0.9 - my onc calmed me down.  I don't think your CEA's are anything to worry about.)

Take care,

Betsy (who was diagnosed Stage 4 in 2005 and is still here and off chemo)

beaumontdave's picture
beaumontdave
Posts: 993
Joined: Aug 2013

I finally got down to a 1.8 after the last surgery, then it went to 2, then 2.2, then 2.6, it just kept bumping up. The Onc wasn't worried, but then it's not his test score, so I was, like you, nervous until the Dec. test, when it finally bumped down to 2 again. Merry Christmas! Now I'm not so worried, at least until June. We all ride that roller coaster one way or another, but your numbers seem great to me, so try to relax...................................Dave

jaybel
Posts: 11
Joined: Apr 2017

Thank you for all the repsonses regarding CEA blood test. It helps to talk with others about their experiences.  I have really been stressed out over my last CEA level and can't help but think there could be something brewing with the levels going up from after the surgery but I have to try to keep thinking positive thoughts. I truely wish eveyone the best!!  

jaybel
Posts: 11
Joined: Apr 2017

Well now since i last posted my CEA went to 0.7  So on day of surgery it was 1.5, after surgery <.3, then .5, .6 and now 8 months after surgery it is .7!  What could be going on??  My Ct scan in March, 2017 was clean.  Should I go get a colonoscopy?? My cancer was stage 1, T2 with 27 clean lymph nodes and low grade tumor.  I am really getting worried!!  Its so hard to deal with these blood tests! My doctor just keeps telling me no to worry but the bottom line is there is nothing they can do until they see something on a CT scan.

Trubrit's picture
Trubrit
Posts: 4832
Joined: Jan 2013

Your body has been through allot, and if your CT's are clear, and your CEA isn't jumping up by leaps and bounds (when I had the liver tumour, it jumped from 0.5 to 10 and then to 19) then your CEA just might be looking for its new normal.

After my liver ablation, my CEA rose a little each time untl it settled at around the 1.0 mark. 

Sadly, as a Cancer patient, anything that half looks abnormal is going to make you sick to your stomach. I have/am learned/learning to try to breath through these moments of fear.  Live your life as NED. Happy! Happy! Happy!   I get to really LIVE and be HAPPY for three whole months between my tests. I pray you can do the same, because worry/stressing is not good for any body, let alone one that has experienced Cancer. 

TRU

NewHere's picture
NewHere
Posts: 1087
Joined: Feb 2015

I had 11 out of 20 or 21 nodes with cancer.  CEA at surgery was around 8.  Dropped to 3.7 after sugery.  Increased during chemo (which happens) to around 8.  Dropped to 3.7.  Hung there for a couple of tests.  Jumped a bit over 5, met to lung started growing (was there at beginning), surgery, back down to 3.7 for 6 month (two tests).  Just bumped to 4.  Making me a bit nervous, but will see next blood test.  On the scale they use, 5 is considered "High"

outlaw41's picture
outlaw41
Posts: 2
Joined: Mar 2017

I was diagnosed with Stage 4 colon cancer which had metastized to my liver on October 2016. I received my first chemo therapy treatment on Oct 25th 2016 of 5-FU and oxyplatin with pump to take home with 46 hrs of 5-FU in it. It was called FOL-FOX. On 12/20/2016 erbitux was added as targeted therapy drug for liver tumors. At onset i had Cea level of >4000 ng/ml. today April 17,2017 my cea is 14.8. my liver functions are normal with no stomach pain and no cell activitie and tumors have shrunk as per petscan on Feb. 4th 2017. I continued with FOL-FOX and erbitux until April 5th 2017 when oxilplatin was stopped. On april 19th 2017, 5-FU was stopped, and just got erbitux. as long as 4/29/2017 petscan is good,blood levels remain good, and liver functions remain normal, and tumors are shrinking the plan is erbitux every 2 weeks as maintenance as long as necessary. I just starting to comprehend all this and dont understand all of it but as long as blood levels are good and liver functions are normal. This is my first contribution to CSN, of many i hope and prayer and just wanted to relate a part of my fight against this terrible killer. I wish all the best and pray for all.

steveja
Posts: 41
Joined: Apr 2017

I'm new to this forum and I don't mean to derail or piggyback jaybels question but ...

I was statge I crc, had a partial colectomy . My perioperative CEA was 5.8 (August 2016, non-smoker).  CEA only dropped to 4.1 in January

CEA was 4.8 in mid-March

--

I have to say I'm not happy about the failure of my CEAs to drop into the normal range (<3.1 on this test).  It statistically suggest a much higher probability of recurrence.

Further there doesn't appear to be anything to do about it except wait & watch - patience isn't my strong suite.

 

 

 

 

zx10guy
Posts: 199
Joined: Dec 2013

CEA has been a constant bane to me since my initial diagnosis in 2012.  Preoperative CEA was 13.9.  The lowest it dropped to was 3.11 when the clinic I went to used a lab that did the Siemans/Bayer assay test that had 0-3 as normal for non smokers and up to 5 for smokers.  Before I switched clinics, the lab at this clinic changed assay methods and went with the Roche test.  This changed the scale for what was considered normal.  Depending on the lab, the new normal CEA level is anywhere from 4 to 5.  Since then my blood work has been done with the Roche test which I only had one CEA test come in just below the normal limit.  All my other blood work has come in between 5 to 6.  This has been going on for the past 2 years.

Last year, during my normal checkup, CEA was run again and to my surprise....9.7.  A retest was ordered to make sure that number was real....came back at 11.  Ok.  So what's going on?  I had a CT with contrast done a few weeks prior to meeting up with my oncologist and having the CEA done.  That scan was clear.  My oncologist orders a PET.  That comes back clear.  So we're all scratching our heads wondering what is going on.  One last thing to do.  I was due for my 3 year colonoscopy.  Nothing was found during the colonoscopy and my GI doc was about to complete the exam.  He wanted to clean the cecum area of my colon to look before pulling the scope out.  That's when my colon shifted and a polyp popped out of my appendix.  He immediately said, that's not good.  Long story short about that is biopsies said high grade dysplasia.  Went back to my CRC surgeon and he did a right hemicolectomy to be sure nothing gets left behind.  Pathology comes back Stage 0 appendicial cancer.

I had 2 follow ups since the surgery.  CEA dropped back down to 5.4 and 5.2.  Everyone thinks, this was the cause of my CEA spike.  Fast forward to my recent check up just over a month ago.  Ask oncologist if I need to have a CT scan for this checkup.  He said no.  I go in and get CEA done.  Results come back at 15.6.  Here we go again.  Retest done to make sure no lab error.  16.7.  CT with contrast is now ordered.  Comes back clear.  I was already scheduled to have a small bowel capsule endoscopy.  GI doc tells me there were some things found but nothing that points to any cancer issues in my small bowel.  Talked to my CRC surgeon about what is going on.  He doesn't like what he's hearing and orders a PET/CT.  Had that done.  All clear too.  So what's left?  Colonoscopy.  Due to the elevated CEA nd my past history, GI doc agrees to move up the colonoscopy that was supposed to be during the summer; one year from when we found the appendicial cancer.  Again, nothing found.  So now I wait another couple of weeks to have my CEA retested.

If you want to talk about CEA panic, imagine having to deal with not a few tenths rise but several points of rise.  Depending on what the next reading says, my CRC surgeon is talking about doing exploratory surgery to see if there's something in my abdomen that isn't being picked up by scans.  My oncologist doesn't seem to worried and has said so.  He said I've always been on the high side with my CEA and this recent spike from the previous 3 months could be just my normal.  He said he's had patients which had CEAs as high as 20 end up not having any cancer recurrence.  I asked him how common is it.  He said in his practice he said about 1 in 4 of his patients being tracked with CEA will have high false positives.  He also said he's not convinced the CEA spike last year when the polyp with appendicial cancer was found was due to that cancer.  He said all along that polyps typically don't cause CEA elevation.  And the cancerous polyp I had was in situ with only the surface of the polyp having cancerous cells.  The rest was benign.

I guess we'll see if my oncologist is correct in two weeks.

steveja
Posts: 41
Joined: Apr 2017

Hey zx10guy

Yeah - there are several  studies that show a pretty high false-positive rate for CEA in ppl like us who have had a resection.  OTOH the persistent high readings put us in the group with sibstantially increased odds of recurrence.   I'm not in a position to second guess your Docs or mine, but colon cancer often metastesizes to lung, liver, peritoneum, pancreas, ... where it can still elevate CEA.  Of course CEA can be elevated for entirely non-cancerous reasons.

I've had the same issue with Bayer vs Roche CEA measurements - I wish I had a good charcterization of the differences.

Cochrane reviews (highly respected meta-studies that are often used as guidelines) suggest a CEA of 10 as a trigger to start looking for recurrence.   20% of recurrences have no elevated CEA, and at CEA of 10, 68% of recurrences are identified with a positive, while 97% of negatives are true. 

 

http://www.cochrane.org/CD011134/COLOCA_detecting-recurrent-colorectal-cancer-testing-blood-carcino-embryonic-antigen-cea

How to live, always looking over your shoulder is the issue.

 

zx10guy
Posts: 199
Joined: Dec 2013

Frankly, I don't think doctors and medical scientists know everything around what CEA means to someone's prognosis.  In many documents, they state well differentiated tumor cells express a lot of CEA.  On the same train of thought, well differentiated tumors are felt to be a better prognostic indicator over poorly differentiated tumor cells which they say express less CEA.  But then they turn around and say high CEA numbers prior to surgery is a prognostic indicator of higher chances of recurrence and lower 5 year survivability rates.  Do you see the paradox in all of this?

I've been dealing with higher than normal CEA for now coming up on 4.5 years.  Other than the appendicial cancer caught last year considered a new primary, I was thinking when I past 3 years I could start seeing the light at the end of the tunnel.  Here I am with just about the same amount of activity as when I was first diagnosed.  The testing I mentioned in my first post in this topic was all done in a 2 week span.  In addition to the CEA coming up, I have an MRI Enterography coming up to add to the marathon testing check box.

steveja
Posts: 41
Joined: Apr 2017

They know a lot more about CEA and other markers than you might guess.  CEA levels can be elevated by several sorts of non-cancerous conditions, but note that colon cancer is not a single monoilithic thing - it includes several distinct types and perhaps uknown distinctions.  So your seemingly contradictory (but accurate) descriptions aren't contradictory at all.  Some forms of CRC are unlikely to be associated with elevated CEA, and also those same types have poor prognosis, however in others types of CRC, elevated CEA does correlate with poorer outcomes and suggests metastitisis to liver or lung (primarily, but others ...) .  There are loads of studies looking for better markers, but sadly for us that's still a 'future'.

I've reviewed the stats for my situation.  As a stageI, there is a ~10% chance of 5yr recurrence, but as a stageI whose CEA never returned to normal (<3), I've got a ~30% chance of recurrence.   'Recurrence' in this context generally means metastasis and then a ~30% chance of 5yr survival.  So given my age and other causes I'm looking at an almost 30% chance of not being here in 5-7 yrs.  Those are only odds, but they mean something.

I know that you and a lot of folks here have equal or worse odds & worse issues to face, but the picture isn't pretty even at my shallow end of this pool.   Maybe it's my personality, but I'd strongly prefer to know today - the waiting in ignorance is the harder part.   I need to find a way to deal with this issue.  And I DO appreciate the conversation.

zx10guy
Posts: 199
Joined: Dec 2013

I've never seen any studies or literature discussing post surgery/chemo outcomes with higher CEA baselines.  All the studies I've seen discuss pre surgery CEA levels.

As far as my statement about doctors and medical scientist not knowing the correlations between the grade of tumor cells and CEA, I still believe this.  Case in point, I mention my oncologist said in his practice 1 in 4 of his patients have exhibited high CEA levels (as high as 20) and not have any cancer as a result.  1 in 4 is pretty significant.  I have a friend who is dealing with rectal cancer.  She is seeing a different oncologist and the same topic came up about CEA rise and when one should worry.  She said he also has patients that have had CEA levels reach as high as 20-22 and not have cancer as a result.

I agree a better test needs to be developed.  Others have used other blood tests to supplement CEA such as CA19-9 or CA125.  So far none of my doctors have suggested using those other blood tests.  But as I said, we'll see if my oncologist is correct that he thinks the recent spike is probably nothing.  But one thing is for sure and I've seen a paper state this.  If your CEA is 30 or above, it's pretty much a certainty there is something going on.

catlvr
Posts: 1
Joined: May 2017

I just had my 1st year colonoscopy this morning, following a clean CT scan.  I've had Stage IIa with a resection of the ascending and part of transverse colon, all lymph nodes (22) were clean.  5 months later, I had a bowel blockage due to scar tissue and had more of the small bowel and transverse colon removed.  Pathology report was clean.  This was in November of 2016.  Had a CEA of 2.89 in Feb and then in May it was 4.8, but as I found out, a different lab with a different method, so even though I can't compare the two - I am  trying to deal with the stress.  First the oncologist said don't worry about it, then this morning I got a call from the nurse saying that I needed to have another CEA in 2 weeks.  The nurse doesn't know why the doc wants a new CEA.  First, I'm not sure that 3 weeks is enough time to wait between tests to see if there is a trend.  Second, I'm just getting over having a bacterial infection as a side effect of the 2nd surgery.  

My oncology surgeon, on the other hand, said that I'm one of those people who won't be able to use a CEA for diagnosis - it was 2 ish prior to surgery and 2 ish after surgery.  He prefers not to look at CEA at all for people like me, but the other oncologist is pushing for genetic tests, and suggested I do chemo even though it isn't protocol for my stage.

I know that it's good to stay on top of changes, but I wonder about the damage that having this type of stress does.  I'm planning to stop seeing the oncologist all together and stick with my onc surgeon, gastroenterologist and family doctor because I can't live my life with no answers.  

Best wishes for everyone else in this situation.  I know that I am in a good place as far as cancer goes and I feel very lucky to be here.

 

NewHere's picture
NewHere
Posts: 1087
Joined: Feb 2015

Welcome to the forums, sorry you have to be here, but this is a good place with good people

On this 

I've reviewed the stats for my situation.  As a stageI, there is a ~10% chance of 5yr recurrence, but as a stageI whose CEA never returned to normal (<3), I've got a ~30% chance of recurrence.   'Recurrence' in this context generally means metastasis and then a ~30% chance of 5yr survival.  So given my age and other causes I'm looking at an almost 30% chance of not being here in 5-7 yrs.  Those are only odds, but they mean something.

 I am guessing you have seen this details (based on your knowledge above), but just a bit of support for you.  The stats are older, with a few years behind where current techniques and treaments are.  That may change the odds a bit.  And the stats have other factors.  I am IV B.  At this point I have a 10% chance of being here in three years based on stats. But my oncologists all tell me the same thing - the stats include the elderly who have other health issues, cancers found at different times and with different ability to deal with them surgically and other factors.  Since they say I am young (cannot believe mid 50s is young Laughing ), pretty active and healthy (other than this one little issue Laughing ) they tell me that the 10% is not what they feel is my prognosis.  

We all get caught up in the stats, it is difficult not to when you are dealing with this.  Just try not to get too bogged down in them. 

 

BillO60
Posts: 72
Joined: Mar 2015

My CEA has run the range from 0.57 to about 17.0. The numbers do not correspond with where I'm at in terms of tumor growth. I've been off of chemo since December 15, 2016 and my CEA has gradually moved from 1.2 in December to 3.4 yesterday.

On it's own, a 3.4 wouldn't get anyone excited. However, I just had a CT scan a week ago and it showed a couple of new tumors in my lung that weren't there in February.

CEA does not tell you what is going on, only that something might be going on and might be worth checking out. It's like running a fever, or having a high white blood count, etc. They are indicators that something might be wrong and so shouldn't be ignored if the numbers spike.

Trubrit's picture
Trubrit
Posts: 4832
Joined: Jan 2013

I'm sorry to hear about the lung mets, Bill.   I hope you get them sorted soon. Keep us posted. 

TRU

mysweetheartrusty's picture
mysweetheartrusty
Posts: 19
Joined: Jun 2017

sorry about the mets. That really stinks.

I love the way you compare the CEA to a fever. My husbands CEA level bounces around are doesn't seem to have much

ryhme or reason. Like a fever it comes and goes. Thanks, this will help me with the stress :)

Rider56
Posts: 3
Joined: May 2017

I have Stage IV rectal cancer which was diagnosed 4 months ago. My original CEA was 1200. It has gone down in steady increments to 32 presently. I had Oxaliplatin, Avastin and Xeloda. I certainly am feeling better now. I know I will not be cured but hoping to squeeze a few more years in. I could no longer tolerate Oxaliplatin after 4 or 5 treatments. I can put up with the ghastly side effects, but it seemed to be hurting my liver so my oncologist took me off it My platelets went down to 74. She said we will switch to Irinotecan if/when I need it, but she doesn't think I need it now. I pretty much begged for more, but no go. So I am now on Avastin and Xeloda only. Hoping not to slide back soon. I have no side effects worth mentioning now. I have worked full time since 3 weeks in. It wasn't easy before, but I do need my health insurance. And guess what, I work in a cancer center. I have adjusted to my new reality, mostly because I feel so much better; normal, really. Would love to talk to anyone/everyone, as I minimize this to friends and family, so having very few honest conversations. Advice is appreciated! I wish everyone well.

Trubrit's picture
Trubrit
Posts: 4832
Joined: Jan 2013

Would love to talk to anyone/everyone, as I minimize this to friends and family, so having very few honest conversations. Advice is appreciated! I wish everyone well.

Welcome to the forum, Rider.  We are here to help you along the way.

Why don't you post to the forum homepage, that way we can welcome you and help you, without hijacking this thread.  

Here is the homepage link https://csn.cancer.org/forum/128 

TRU

beaumontdave's picture
beaumontdave
Posts: 993
Joined: Aug 2013

That Can't Enjoy Anything {CEA} test sure keeps us all stressed. I just did my six month blood panel Monday, and if the Onc. hasn"t called by now, I'm happy to ignore it until the next one. God forbid I find out it bumped up a tenth, I'll have that in the back of my head until Christmas. Welcome to the new folks, and just accept that even several years down the road that test will likely be making you nervous....................Dave

Bellen
Posts: 281
Joined: Aug 2016

Hello Outlaw41 - I have CRC with several mets to my liver - am on avastin and folfiri chemo (same as folfox but irinotecan instead of oxy).  Did you ever have avastin prior to the rest of your chemo being administered?  I wonder did they give you erbitux in place of the avastin.  And have you had any side effects of the erbitux?  A friend of mine may be taking erbitux soon and I would like to learn more about it. And hearing that cancer tumours mutate, I may have to try something different in the future.  Thanks and wishing you well.

Burnsy64's picture
Burnsy64
Posts: 6
Joined: May 2017

I am new here.  I had a colonoscopy at the end of March.  The surgeon took a polyp off and told me to come back in 3 years.  Next thing I know my Dr. Office called and said they want to see me.  On May 9th I was told I have rectal cancer.  I had an MRI and it was in conclusive.  My CEA was 7.  I had a CT scan on 24th.  Waiting for the results to see if it spread.  The surgeon tells me I need to have a resection done.  I would have to have a bag for 3 months.  He said hopefully it hasnt spread and I wont need chemo or radiation.  I am not sure about the surgery.  Is it the only way to go?  I am a care aid and I have to change peoples ostomy bags.  It makes me sick.  I do not want one of those.  I am having a hard time wrapping my head around the thought that I have cancer.  It is really scary.  My Dad died of small cell lung cancer 8 years ago at the age of 66.  He is on my mind a lot.  The MRI didnt pick anything up, but surgeon says CEA levels say I still have cancer.  I am not sure what to do.

Trubrit's picture
Trubrit
Posts: 4832
Joined: Jan 2013

It might be a good idea for you to post this exact thread (copy and paste) to a new thread on the CSN home page. Here is the link https://csn.cancer.org/forum/128  That way, when people answer, the post will be to you personally, and not a part of jaybel's thread. 

If you have problems posting, let me know. 

I am sorry you find yourself here.  Those first months after diagnosis are terribly emotional because so much is going on. Coming to terms with the word Cancer, and that you have it. All the information that is thrown at you. The treatment options, procedures, surgeries, colostomy, chemos, radiation possibilities. Its allot to take in. Being scared is definitely a big part of it.  

My one suggestion here is to take it one day at a time.  

We look forward to seeing your post on the forum home page. 

Tru

Saad65
Posts: 1
Joined: Feb 2018

Hi there, I’m 53 years old m had my cea test on sep 2017 and it was 27, ct scan there was nothing!

made another CEA test Feb 18 the result is 21.6 high again!

why my cea result was high?

Annabelle41415's picture
Annabelle41415
Posts: 6185
Joined: Feb 2009

This is a fairly old post so it would be great if you could post a new one.  As far as CEA it can be very unreliable.  If your's shows high and CT scan showed nothing it should be monitored, and with another high one they might want to do a PET scan.  Please let us know how things are going and think about posting on the board with a new entry.

Kim

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