CSN Login
Members Online: 7

You are here

CEA rising but no cancer detection

Work24hr
Posts: 12
Joined: Nov 2015

Hello

im new to this board and I really hope you can help me. 

I never had cancer before and my CEA level was consistently below 2 for past 10 years.  However suddenly this year my CEA was increased to 11.3.  Then two weeks later, it increased to 14.1.  We did colonoscopy, PET, and CT but no tumor is detected.  

I know smoking or other non cancerous infection can increase the CEA but I don't think it will increase this much. 

has anyone experienced this?

what needs to be done because doctor doesn't really understand other than keep monitoring CEA level but I'm afraid we are just missing certain cancer detection.  

Should i be worried about this CEA level?  Also how can CEA increase from 11.3 to 14.1 in just two weeks?

please help!!!!  Thank you 

 

Jim 

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

I am quite surprised that you have had your CEA checked for 10 years. It has been my understanding that CEA is not a normal blood test unless there has been prior problems with CRC. Do you have a family history of Colorectal Cancer? 

CEA can be unpredictable. For some, it just is not a stable marker, for others it is. 

After finishing with my chemo and radiation treatments, I was NED (no evidence of disease) for several months and then my CEA jumped dramatically. At one point, I had my blood tested a week apart (or was it two?) and my CEA jumped by 10 points. A PET Scan found a tumour in my liver. 

With a clear colonoscopy, CT & PET, I don't know any other way you could find out if something is amiss or not; unless you go and get a second opinion from a different facility and different GI Doctor. 

Lets see what others have to say. 

Welcome to the forum. I hope your stay is short, and that you find the CEA results an anomaly.

Sue - Trubrit

Work24hr
Posts: 12
Joined: Nov 2015

Hi Sue.  Thanks for your reply and I hope your condition is ok and stay healthy.   There is no particular reason for CEA monitoring for past 10 years.  My annual checkup program is pretty detail and it just happens to include all cancer related markers like CEA, PSA, etc. 

I am just worried that there is something in my body but simply cannot detect.  I see a lot of false negative based on CEA like your case, but I do not see too many false positive case - especially when CEA is above 10.   This means that in my case, I do have some form of tumor but simply can't find it.  

I am wondering if there is someone out there who has false positive with CEA above 10?

Jim

Lovekitties's picture
Lovekitties
Posts: 3327
Joined: Jan 2010

Can you give us a little background on your situation?  What was the reason your doctor has been monitoring your CEA for 10 years?

You mention a PET and a CT scan.  Did they do full body - chest to pelvis or just the intestinal area?  If they did a full scan, then it seems you have had all the current diagnostic tests available for the detection of CRC and it's areas of metastasis.

As you mention, there are other reasons for CEA to rise.  Generalized inflammation, emphysema and benign breast disease can all increase CEA levels, as can gastrointestinal conditions, such as ulcerative colitis, colon or rectal polyps, and ulcers. Did your doctor do a full blood panel to see if you have an infection?  CEA trending upward is worth watching and looking for another cause.

Have you had any other symptoms such as unexpected weight loss, night sweats, blood in stool?

Don't worry just yet, but insist on finding any issue which may be causing it to rise.

Wishing you the best,

Marie who loves kitties 

 

Work24hr
Posts: 12
Joined: Nov 2015

Hello Marie. Thank you for your reply.  

There is no reason for CEA monitoring for past 10 years.  It just happens that my annual checkup program is very thorough and happen to include all cancer marker like PSA, CES, etc. 

i have no symptoms related to cancer and my diagnostic examine like PET was full body scan.  I understand that other non tumor cases like inflammation can increase the CEA but I don't think it will increase to level above 10.  Doctor also did full body work and other than slight fatty liver, all within the acceptable range.  There is a slight fibrosis in lung but he says it is normal at my age and certainly not related to CEA 

I am just wondering if there is anyone out there who had false positive with CEA above 10.  I understand that there are lots of false negative even with CEA below 5 but I did not come across anyone who had false positive with CEA above 10. This means that it is most likely that I have tumor somewhere but simply cannot detect. 

This worries me because my doctor is telling me there isn't much to do other than regular blood work to monitor the CEA level - which can be too late if there really is tumor growing. 

I am really at the end of the road and don't know what to do. 

Jim

lifeaftercancer2016
Posts: 7
Joined: Sep 2017

Hi  how are you?  I'm completely new to this board. I know your post was 2 yrs ago. but I recently posted this same exact question.  Did you ever find out the reason for your high CEA?  

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

I've heard that smokers can have CEAs as hsh is 13 to 14. That being said, only certain cancers have CEA production so a person can have other cancers without have any CEA detection at all. But wil  pET scan and CT scan I don't know how they could tell if there is a cancer. I'd think it's an anomaly. But it would scare me as well. Very odd. I hope it's nothing and you don't need to be here. This is an exclusive club that I wish nobody had to join. 

Jan

Work24hr
Posts: 12
Joined: Nov 2015

Thanks Jan 

i would love to see if there are cases like this from other people. 

John23's picture
John23
Posts: 2140
Joined: Jan 2007



Normal
0






MicrosoftInternetExplorer4

st1\:*{behavior:url(#ieooui) } /* Style Definitions */ table.MsoNormalTable {mso-style-name:"Table Normal"; mso-tstyle-rowband-size:0; mso-tstyle-colband-size:0; mso-style-noshow:yes; mso-style-parent:""; mso-padding-alt:0in 5.4pt 0in 5.4pt; mso-para-margin:0in; mso-para-margin-bottom:.0001pt; mso-pagination:widow-orphan; font-size:10.0pt; font-family:"Times New Roman";}

Some info………..

Non-malignant conditions which may have elevated CEA include:

  • Non-malignant liver disease, including cirrhosis, chronic active hepatitis, viral hepatitis and obstructive jaundice.
  • Chronic kidney disease.
  • Pancreatitis.
  • Inflammatory bowel disease.
  • Irritable bowel syndrome.
  • Diverticulitis.
  • Respiratory diseases - eg, pleural inflammation, pneumonia.
  • Smoking.

From: http://patient.info/doctor/carcinoembryonic-antigen-ceahttp://patient.info/doctor/carcinoembryonic-antigen-cea

 

=====================================================

 

Table. Distribution of CEA

Subject Group

No. of

Subjects

% with CEA in Indicated Range

0-2.5

ng/mL

2.6-5.0

ng/mL

5.1-10.0

ng/mL

10.0-20.0

ng/mL

>20.0

ng/mL

Healthy Subjects

 

 

 

 

 

 

Non-smokers

225

98

2

0

0

0

Smokers

150

87

8

5

0

0

From: http://www.questdiagnostics.com/testcenter/testguide.action?dc=TH_CEA

 

=====================================================

Higher than normal CEAlevel alone cannot diagnose a new cancer. Further testing is needed.

An increased CEA level may also be due to:

From:  https://www.nlm.nih.gov/medlineplus/ency/article/003574.htm

======================================================

Your physician should schedule a full exam to determine what else you may be suffering from that has gone unnoticed. All too often we suffer from “small things” and feel they are insignificant to our overall health, since we are busy and otherwise feeling fairly healthy. That’s where ignoring the problem and taking an aspirin or pain killer can do us more harm than good.

Our body provides us with all we need for survival, when we ignore the signals of a problem, we suffer the consequences dearly.

You’ll do OK if you find out what’s up -now-. Don’t put it off; don’t take -0- for an answer.

Be well.

 

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

Great information for all of us. 

 Tru

Work24hr
Posts: 12
Joined: Nov 2015

Thank you so much for the useful info.  From the table, given my cea is at 14, at least statistically I may have something - either tumor or non cancerous - with my liver  :(

NickZhu
Posts: 1
Joined: May 2017

I came across the elevation of CEA due to error of testing. Sometime the chemical solution efficacy dropped due to expiry or over exposure to air.

We should watch out if the trend of escalation persist.

DaveHereInFlorida
Posts: 48
Joined: Jun 2015

If your Doctor doesnt understand, you must find a Doctor who can give you an accurate explanation for this.,  I would NOT wait and watch the CEA number go up n up .   So...your homework is to treat this with the utmost importance  and schedule a consultation with a new Doctor. Your present DOctor should completely understand  this decision. 

tanstaafl's picture
tanstaafl
Posts: 1292
Joined: Oct 2010

This MSKCC study was mentioned on the boards last year.  Basically a lot of slight elevation once stuff, some up to 15 with two "+"; rare 2+% false positives with at least one over 15 and other "+" 

ASCO  http://meetinglibrary.asco.org/content/122986-143

Ncbi Abstract  http://www.ncbi.nlm.nih.gov/pubmed/24925201

Work24hr
Posts: 12
Joined: Nov 2015

Thank you.  Great info!

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

Cea is part of every blood panel I'ved had for 8+ years, after the colectomy my numbers slowly rose like yours. Scans showed nothing conclusive, so a needle biopsy was done in my liver. It came up negative, and they monitored a rising cea level every three months until at the two year scans the onc. told me they would biopsy again and either way he wanted the lesions, as they were now calling them, out. the test was positive, the surgery done. I'm ned now with a 1.8, but if it went up rapidly I'd push for why, and worry as well. The comforting part, I hope, is that they waited most of three years and still got the tumors with a single recurrant tumor after that, over a year ago. My numbers hit as high as 44, for what thats worth. John's entry should give you some ease of mind, but like he and others have said, I'd keep pressing for an answer, and live a puritan lifestyle until those numbers head the other way. Good luck to you........Dave

Work24hr
Posts: 12
Joined: Nov 2015

Thank you Dave.   It's alarming to me that despite the increased in CEA, nothing was detected for so long.  It's very fortun that you got the tumor removed but I'm wondering why Doctor could not identified the tumor even though CEA was consistently telling us something was wrong

To out a further twist to my story, I did the CEA level checking again after 1 week and results shows that it decreased from 14 to 12 now.  At least it did not increase beyond 14 but still very high at 12.  How can CEA increase AND decrease so quickly over a such a short period of time?

Work24hr
Posts: 12
Joined: Nov 2015

can Cholinergic Urticaria increase CEA?

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

Hives? It's testable.

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

Interesting drop to 12's, I've only known it to go one way until intervention.

Nurse_Jeni's picture
Nurse_Jeni
Posts: 8
Joined: Mar 2017

Hi new here too but my CEA was checked 7 yrs ago and was 2 ,my new GP ordered it again because I lost weight and was nauseous 24/7 (similar to why it was checked 7 yrs ago when the problem resolved by itself). My CEA this time was 10 .... panic stations! I am a registered nurse so understand the possible ramifications. My bloods also showed a raised serum thyroxine which was the probable cause of my weightloss and other symptoms. I was wondering if work24 ever found out any more as I am naturally quite worried. Forgive me if this is the wrong way to ask but I am doing this on my phone and I can't read much due to screen size. Any info would be greatly appreciated and thank you in advance.

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

work24 hasn't posted on the forum since December 2015. If you are interested in their success then you can send them a personal message. Sadly, many (too many) of our members don't survive, so you take the chance of sending an email to a deceased member.

Saying that, work24 hadn't actually been diagnosed, and their not re-posting may be a very good sign that all was well.

Because this is an old thread, you might want to start a new thread on the forum home page. Here is the link http://csn.cancer.org/forum/128 -  We would love to welcome you to the forum, but hope, as we did with work24, that the rise in CEA is just an anomaly.

TRU 

cweselenak
Posts: 1
Joined: Apr 2017

I stopped worrying about my CEA levels. I was diagnosed with Stage IIb colon cancer in January 2014. I've had 14 CEA tests since them. At the time of diagnosis it was 6.8. These levels followed... 2.4, 3.2, 3.6, 2.5, 3.4, 3.6, 4.2, 5.0, 5.4, 5.6, 5.3, 6.9, 4.0. Test ever 3 months at first then 6 months. when it jumped to 6.9 that was during a period when I was smoking a lot. I am one of those sometimes smokers. Then I quit smoking and started eating healthy. My last test was 4.0 last week. All scans have been NED. Now my onc said I don't need to see him until a year from now. Also during my scans he said I do have a fatty liver, and that can make CEA levels rise I hear. My onc told me he has patients in the double digits like 11.0 and stays there that have no recurring cancer even 10 years out.

So I wouldn't freak out about CEA levels when they are normal or close to normal range.

carrienjason777's picture
carrienjason777
Posts: 10
Joined: May 2017

Hi! I can relate to your frustration and worry as I also am experiencing the same problem (and I thought I might be the only one!)  For almost 3 years my Cea has been checked monthly and ranges from 13-21. Yet all tests thus far have been negative, and some of my Drs are concerned, yet don't know what else to do, while another Dr or two feels that an elevated cea is no reason for concern. What led to the cea being checked at first was gynecological symptoms (turned out to be that I seem to keep ovarian cysts that are complex each time, I have had extreme weight loss, sudden onset anemia, extreme fatigue, loss of appetite, infrequent nausea, and quite honestly, other symptoms that I've had for so long now that I can't recall what's normal or abnormal for me half the time! (Ugh!) The tests I've had done are ct scans from my head to my pelvis, MRIs of the same area, negative colonoscopy and upper endoscopy, and one ovary biopsied and removed was normal, but the other ovary keeps complex and septated cysts ,yet my gyne refused to even check the other ovary when I was in surgery. (I'm guessing cuz the problems at that time we're coming from the side she took out). 

In regards to other things causing elevated cea, I'm aware that smoking can cause it to go as high as 6, and emphysema/COPD related problems can cause it to go as high as 10-12 max (according to a couple of Drs) yet my level has remained even higher than that for almost 3 years now, and no one has a clue as to what could be wrong and my insurance won't pay for pet scan. My GI suspects ovarian cancer, while another has mentioned the possibility of leukemia type due to the always abnormal results of my labs (monocytes platelets, eosinophils, neutrophils, rbc, mchc, mcv seem to fluctuate either on abnormal high or abnormal low end, depending). Yet the gyne refused to remove the ovary or check it, everyone tells me I need a new gyne Dr and I've had a hard time trying to find one. Please give me any advice you can as this has perplexed me for some time now, and I KNOW my body and I also know that SOMETHING is wrong, I just don't know what and don't know what to do now. I will keep you in my prayers and hope that you find your answer, but what is going on with you currently? Are things any better? Any info I can come up with I will make sure and share with you...Hope things get better for you, and am desperately seeking info myself.

Thanks 

Carrie

Nurse_Jeni's picture
Nurse_Jeni
Posts: 8
Joined: Mar 2017

My CEA is now 25 but so far all tests clear, PAP test, FOB test, mammogram,ultrasound of thyroid and neck glands, abdo CT with contrast, bone scan (full body). I feel fine and have gained weight back but I am still very worried about what may be brewing, I think next is surgical consult for a gastroscopy and colonoscopy, I see my doc on Saturday at work and will figure out what is next with him then. I must say he doesn't seem too concerned and he keeps saying that the test is unreliable as a diagnostic tool, I thought that was only because there are many false negatives but he says that they don't know enough about CEA with no evidence of malignancy as research is around monitoring proven tumours after removal ie for recurrence. If I ever find anything out I will post it here even if it is to say they found a tumour so if I don't post it means they still haven't found anything.

gpa
Posts: 2
Joined: Oct 2017

The initial post is almost 2 years old, but I'd like to comment and share my own experience.

I am doing complete checkup yearly since I am 30 yo. For almost 10 years it was just a formality, all results always came perfectly normal. Two years ago, I was only 39 yo, I had the good (or wrong) idea to upgrade the check-up package, including several tumor marker and other stuff as they recommend here for men of 40+. The results came with elevated level of CEA (20.8 ng), all the rest was normal. During the review the doctor alerted me on this level and advised in the report to consult a GI specialist for proper management. Which I did immediately. The GI specialist told me that elevated level of CEA alone does not prove the presence of a cancer, so no panic, however after telling me that other factors including smoking and begnin conditions may increase the level of CEA, he still confirmed that this level is abnormal, a bit too high to be explained by my smoking habits. I have been given two option, wait 3-6 months and test again to see the trend, or do with no delay a gastro- and colono-scopy to search for the presence of something wrong. I am not particularly hypochondriac, but I did not feel like waiting 6 months with a cancer possibly speading within my body to confirm a trend, I went for the gastro- and colono-scopy the following week. Results, nothing (visible) except stomack and intestin irritation, thank you. I was only half reassured, in one hand there was no visible cancer there and the rest of my check-up was clear, in other hand this level of CEA remain as a stain on my report and no explaination. I did not check-up last year, maybe related or not (health issues are not the the only problems life offers you) but I show those results to another doctor in my home country. In Europe the tumor markers are not commonly included as part of check-up (as it is in Asia) and the doctor told me that this is the reason why, but he still advise me to check it again since I have a suspicious results. I did a recheck last week, hoping that it will now be normal, but my CEA level is still elmevated, but slightly lower (14.7 ng), no occult blood in the stools, no other sign of any particular problem. Since I quit smoking, the abnormal results cannot be attributed to cigarettes this time. So what to do next? no idea. I think it would be ridiculous to do again a gastro- and coloscopy, after only two years. Also, the value is lower than 2 years ago, if it was the sign of a cancer, wherever it is, I guess it would have increased...

This is the paradox of the complete check-up, they measure plenty of markers that are supposed to help early detection of cancer, but when a results comes abnormal, they tell you that it doesn't mean you have a cancer, and that you should just monitor it... What is the benefit of measuring such marker if the only action is to monitor it until you get other symptoms?

Personally I think we are at a verge of early detection of cancer. Probably in a near future, combination of those markers and other non-invasive tests will be able to confirm or rule-out the presence of a cancer, that will be truely early detection, with better survival chances. But today, we are still far from this, most markers are not specific enough, and their correlation with the development of a cancer are even too uncertain to even justify a lot more investigation if there is no other sign of disease. The benefir of measuring such marker in a check-up is therefore very discutable, and it generate a lot of tress and cost to patients, for probably little or no benefit in term of early detection and treatment success.

I am not yet 41, apparently heathy, having a relatively good hygien of life, not particularly at risk of cancer, but I am now living with that impression that a cancer is developping somewhere in my body, marking in my blood, but still undiscovered or invisible at this stage. That's a pain in the *** (more than the colonoscopy) cause it obviously does not help me to prevent this hypothethic future disease, but it waste my present feeling of being healthy. Any pain in the stomack or intestines, any diarrheas or constipation, become suddenly suspicious and worrisome, while I would have even not consider it before. I wish I never did this test and just keep monitoring usual check-up, but now I have this result on the table, I have no other choice than monitor it, and I am getting totally hypochondriac.

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

What a well worded post. 

I am sorry for your frustration, and I have to agree with you, that some of the tests we have, are of absolutely little use if they don't show the whole picture.  My mum used to say 'What you don't know, won't hurt you', and with her sage advice, there is one test that I refuse to have (not Cancer related though). 

My only advice to you would be to TRY (easier said than done) to put it all in some kind of mental compartment, and live your life as though you hadn't even seen these test results. It sounds as though you are doing all you can to live a healthy life and have a keen eye on your wellbeing.  One of the hardest things about surviving Cancer, is getting past the constant thoughts of recurrance. As you said so eloquently Any pain in the stomack or intestines, any diarrheas or constipation, become suddenly suspicious and worrisome, while I would have even not consider it before.  That is our life, but we at least, are Cancer patients. It must be awful to be healthy and have this hanging over your head.  

I pray you will be able to find a way to 'forget' or find the reason for you elevated CEA.  You have probably already read how CEA isn't always the best detector of Cancer, and there are folks here who have had elevated numbers in spite of continued clear scans. 

I wish you well.  

Tru

zx10guy
Posts: 199
Joined: Dec 2013

CEA is never used as a primary means of cancer detection due to a number of factors which make it unreliable as a primary test.  A positive CEA test only indicates further tests should be done to rule out cancer.  You had a colonoscopy and what sounds like an endoscopy which resulted in no concerns of cancer.  The only other tests I would maybe look into is a CT scan with contrast or maybe Cologuard which is probably more reliable than CEA for early CRC detection.

Since the search function on this forum leaves a lot to be desired, I'll quickly summarize my situation which may give you some peace.  Diagnosed with Stage 3B Colon Cancer in Dec. of 2012.  CEA was 13.9 prior to surgery.  Aftere completion of chemo, my CEA at its lowest was 3.11 and hovered in this area above 3.  Testing methodology changed from the Siemens Bayer to Roche assay which increased my CEA results.  At the lowest it was 4.7 with my "normal" being in the low 5s.  Last year during a routine checkup, CEA spiked to 9.7 and then 11.  CT with contrast yielded nothing.  PET was ordered.  Radiologist said all clear.  I wasn't convinced since I looked at the scan images and saw a hot spot measuring 6.7 SUV.  Second opinion was sought which also yielded an all clear.  Colonoscopy was done and found a polyp in my appendix.  Right hemicolectomy done with pathology results indicating Stage 0 Appendicial Cancer.  After surgery, CEA dropped back to low 5s.  This past March, go in for a checkup again.  CEA spiked to 15.6.  Retest was done to rule out lab error which came back at 16.7.  CT scan with contrast, PET, MRI with contrast, endoscopy with ultrasound, colonscopy, and small bowel capsule endoscopy were done.  All yielding no cancer found.  CEA tests done during htis period were 14.2 and 11.9.  So CEA trending back down.  Just went in for a checkup a few weeks ago.  CEA back up again to 15.2.  Oncologist says he's not worried as he's seen this behavior with other patients of his.  A friend who went through rectal cancer said her oncologist has said the same thing.  My oncologist said if there was active cancer, CEA wouldn't dip like what we've seen but would keep climbing.  He says this is probably my new normal and the recent spike is still within the range of variability he expects.  I ask if another CEA test or a CT scan is needed.  He said no.  Prior to finding out the CEA number, he had graduated me to 6 months follow ups.  After the recent CEA number, he is still keeping that plan in place but I will have a CT scan for the next checkup in March.

lifeaftercancer2016
Posts: 7
Joined: Sep 2017

to zx10guy my story is similar in that my oncologist also said no to a re-test of the CEA. I was diagnosed with rectal/anal cancer in Nov. 2015 at which time my CEA was 6.7...after surgery and chemo, it hovered between 1-3, never going above 3.9.  On August 22, 2017 it was up to 10.5. I went in for an emergency CT scan and I was in the clear.  I asked my oncologist for a repeat CEA and she absolutely refuses saying the CT scan trumps the CEA, and it was probably a false positive.  But my situation is different as she also is against the PET scan.  I never had one.  I don't know what the issue is with getting that done.  I see her again in November and I don't think it will be a pleasant appnt.  as I'm going to demand answers.  My  only other issue is that I also have a slightly fatty liver and I see from previous posts that this can increase the CEA.  In addition, I'm having some back problems, with inflammations so maybe that is causing the spike too.  I'm so so nervous about what the blood work and CT scan will show in November.

 

zx10guy
Posts: 199
Joined: Dec 2013

Hi lifeaftercancer2016,

Back in March, my oncologist didn't initially order a CT scan for that checkup.  We were assuming all would be normal because my last checkup in December produced nothing on the CT scan ordered then nor were there any issues with my CEA which was 5.2.  The only issue was that I was found to be anemic for some reason with low iron sat levels.  So my oncologist only ordered the CT in March due to the elevated CEA.  When that came back clear, he felt everything was fine.  He felt no need to follow up with a PET.  I talked to my CRC surgeon about the situation and he felt I needed to have a PET to see if it will pick up anything.  So he was the one that ordered the PET; which showed nothing.  All the other procedures I had done were ordered by my GI doctor because of the anemia and because of the appendicial cancer found last year.  He wanted to make sure there's nothing else going on.  My GI doc ordered the colonoscopy, small bowel capsule endoscopy, the MRI with contrast, and the endoscopy with ultrasound.  All of those tests showed nothing cancerous either.

Again, my oncologist was quick to point out he's seen other patients of his which exhibited this CEA behavior.  A friend of mine said her oncologist also said the same thing where some of his patients have exhibited high CEA with no cancer.  Some as high as 20.  My oncologist isn't ordering another CT till March because of all the radiation I've been exposed to.  Since June of 2016, I've had 3 CTs with contast and 2 PET scans.  That is quite a bit of radiation.  I may ask to see if I can have another CEA done.  I think he's not ordering another CEA to keep any anxieties to a minimum; although I haven't really been all that stressed out about the current situation.

I would assume you have a GI doctor and can also contact your surgeon.  Either one of those doctors can also order a CT or PET.  I would talk to these other doctors to get their opinion.  They may agree with your oncologist or they may feel a CT or PET scan is in order here.

gpa
Posts: 2
Joined: Oct 2017

Thanks for your answers and comments. I understand and do agree that CEA marker is not appropriate and should not be used as a primary means of cancer detection, first because many cancers do not raise the level of CEA. It then makes sense to monitor CEA level exclusively with patients who were diagnosed and treated for a cancer which was actually associated with elevated CEA. Since the link between the cancer and the CEA level was first established in those patients, future variation in CEA levels are likely to be good indicators of the disease evolution. Which is not the case for somebody who was initialy found a cancer without CEA elevation, or for somebody who was even not found any cancer associated to the CEA elevation. This said, if all doctors and researchers agree that CEA elevation alone is not a proof of cancer, and that some benign conditions may raise significantly the  CEA level, they also agree that levels beyond 10 ng are "rarely due to benign conditions" and "most often associated with cancer". Rarely, most often, we play with words and ideas, but behind this, there is a remarkable scientific incoherence. How the level of a marker, whatever it is, can be at the same time strongly correlated with the presence of a cancer, and at the same time not a relevant indicator of it? I am not a medical doctor, and I probably miss the subtility of the correlation, but as a scientist I find difficult to understand this equation... To me either the level of CEA is totally unrelevant in term of cancer diagnosis in a non-diagnosed and asymptomatic person, and in that case there is no point to put a threshold on what is supposed to be normal, and more especially on what is too high to be benign, either there is effectively a level of CEA beyond what benign conditions are rare, and in that case the CEA marker is relevant in term of diagnosis. The elevated level will not indicate where and how is the cancer, but it will indicate that there is one to search for. Those questions seem embarassing for medical doctors I have discussed with, and I never ended up with a clear statement on it.

Personnaly I would love to believe that a CEA higher that 10 ng in an apprently healthy person does not mean anything, that it is just a non-relevant marker for health screening, and that out of an establish cancer context, it has just no meaning at all. But considering the little proportion of this protein produced by "normal" cells of an heathy adult, it looks obvious that beyond a certain level (I don't know if it is 5, 10, or 20 ng) it has to be induced by a pathology, serious enough to induce significant number of those cells producing high proportion of CEA, those cells we find notably in tumor, and therefore any person with such a level has, had, or will have something to do with cancer. I believe many doctor have this in mind, but failing in identifying the cause of the elevation (which is maybe impossible at this time cause too early), they prefer to reassure the patient, emphasing on the non-relevance of the marker.

I understand that those considerations may look a bit silly to those who have a diagnosed cancer and live with it, I can imagine that even after remission, the worriness about relapse is something else, and I won't compare my doubts with your legitime fears. I do hope those posts did not offend anybody. I am just trying here to discuss and put in perspective a situation which will probably become more and more common with the public access to those test (I even saw CEA test type Elisa sold on the internet). I unfortunately don't have a clear advise to the next person who will reach this page searching for what he should do after his abnormal CEA test and subsequent negative colonoscopy. Maybe the sage advice would be, as Trubrit said, to try to forget that result, maybe not. On my side, I will keep searching what is the reason of this abnormal result, and I may find, or not. I remember the day I went for the gastro- and colono-scopy two years ago, when leaving in the morning, my wife a bit worried told me "I hope they will find nothing" but I answered to her "I don't, I hope they will find something benign, so it can explain my blood test".

I wish all you the best in your personal situation. Thanks again for the exchange.

zx10guy
Posts: 199
Joined: Dec 2013

GPA,

I totally get where you're coming from.  I'm very scientific by nature and had my CRC surgeon call me a scientist.  I did go to college and received a BS degree in Materials Science Engineering and had thoughts about going into Med school.  So when I was diagnosed, I did a lot of research online.  I have a hard time just believing things are the way they are without a solid logical and scientific explanation.  Even with the saying that circulates around various cancer support forums about cancer not playing by the rules and anything can happen.  I can't come to grips with this.  But at some point, the search for logic and answers just drove me mad.  I found myself sifting through old published articles to the wee hours of the morning not sleeping much.  This in itself wasn't healthy.

But back to the CEA discussion.  I personally feel doctors and medical researchers still don't know how to use CEA.  In many articles, there have been statements that elevated CEA above 5ng results in poor prognosis for long term survival or disease free survival.  Yet other articles I've read have stated well differentiated tumor cells express more CEA than poorly differentiated.  Yet well differentiated tumor cells are a positive characteristic for long term survival while poorly differentiated is a negative characteristic.  These two things are at odds which each other.  Then you have those that have metastatic disease with normal CEA numbers.  CEA numbers are also affected by how fast your liver processes this protein antigen out of your blood stream.  There hasn't been much discussion I've found about how variations of liver function/metabolism can affect the rate of CEA removal from the blood stream.

Because of how variable and "unreliable" CEA can be, I've seen others use supplemental blood tests like CA 19-9 as another tool to monitor any cancer activty.  I may ask my oncologist to see if this is a good idea for me to have done.  I've also seen literature which says benign causes of elevated CEA above 10ng are rare but it does say it can happen.  The protocol is to retest for a false positive or lab error.  The same article from what I recall did say CEA above 20ng is most likely due to some sort of cancer activity.  With my situation, I've done all the possible tests to find what is causing my elevated CEA levels.  And so far nothing has come up.  There are things found which were not cancer but could be the cause of the CEA elevation because of the pyloric issues found.  All I can do is trust my oncologist as we can't treat something that we can't find.  Plus he has seen this behavior in some of his patients.  My oncologist has been a very straight shooter with me and I've had many deep in depth discussions with him.  So he knows I get invovled in a highly technical fashion with what we're talking about.  He even knows I look at my own CT and PET scans along with getting the radiology reports well before he looks at them and reports back to me.

Kazenmax's picture
Kazenmax
Posts: 350
Joined: Feb 2016

Hi all,

I understand the worry on a high CEA but I don't think it's a reliable test. My cancer was discovered Feb 2016. I was diagnosed with Stage III colorectal cancer because of the size and location of my tumor. My oncologist tested my CEA right away and it was a normal 1.8.

My oncologist and oncology surgeon said that the CEA is not a good test when it comes to colorectal cancer.

Not that I want you to worry even if the results are normal... I just want to let you know that it may not be reliable.

k

 

Beachlace's picture
Beachlace
Posts: 37
Joined: May 2013

Me too.  Colorectal stage III and CEA has always been normal.  They told me some tumors do not elevate CEA.

janish
Posts: 1
Joined: Feb 2018

I'm in the waiting period right now.  Finished my Chemo and radiation, and now just waiting the 8 or so weeks before new scans to see where my tumor is.  My CEA went from 21.4 prior to any treatment, down to 4.5 (still had two weeks left of chemo and radation), and finally down to 1.8 about 8 days after my last treatment.  Does this type of response typically indicate how much of a shrinkage you can expect to see with the tumor?  I need 50% according to my surgeon to save my sphincter, and not have to wear a bag the rest of my life.  If that is my only option, I will not have surgery, and just take my chances with the treatment.

First surgeon told me I'd had the tumor for years, but my CEA level was so low, I really don't think so.  I have no METS, and the tumor was the only thing that lit up during my PET scan.  Chemo doc said my CEA marker number was an indicator that my tumor will likely shrink 70-80% or more, but I can't find any data that supports this.  I'm dying to know during this wait time, what to expect, and what the trend is.  Does anyone have any experience?

 

Thank you!

carrienjason777's picture
carrienjason777
Posts: 10
Joined: May 2017

Hello everyone! Well IM still searching for the exact cause of me elevated CEA, and I understand what everyone says about the fact that it might not be a very reliable tool pre-screening, BUT I think that there are exceptions based on the circumstances AND the result number. For instance, mine runs above a 15 constantly and every Dr has said that indicative of SOMETHING. And although I may just be waiting around for appts with drs that take 7 months just to get in and still have no answers yet and that might indicate that IM waiting around for the wrong drs or not, IM just not sure. But IM currently in the hands of the Endocrinologist and the gastroenterologist right now undergoing more testing. But to date they have found that I have the ovary issues and all that I spoke of above, a lesion and glial cyst? On my brain along with pituitary issues that the Endocrinologist is in the process of diagnosing, a small mass on my liver, 3 nodules on my lungs, loss of bone mass, anemia, Ive started having severe stomach issues, abnormal lipid panels, monocytosis, some kind of polyps in my colon that are precancerous (my GI informed me this was what was removed 2 yrs ago when all of this started happening) some kind of bile and pancreatic duct minor thing I can't remember in which the scans say theyre not ruling out lesions, and new symptohms.  

So things have increased for me and I quit smoking for 3 months just to see if it was related to the CEA and mylung Dr said the two are not related cuz my CEA went higher in those months than it ever has! I do know that irritable bowel brings it up only a few points cuz when my ibs is flared up it goes up a couple ppoints and when I take prednisone (for COPD exacerbation)it also brings it down a couple points. My lung Dr says i need to talk to my oncologist about looking for cancer in my body cuz as far as she knows,  she sees no other reason for the numbers to be that high, and I still can't get insurance to pay for pet scan. So IM doing what I can do as far as the insurance allows me to, which is to treat symptom by symptom, Dr by Dr. Slowly but surely, and hopefully one day soon the CEA question will be answered. My health is markedly worse just by my day to day life activities,  and how I am unable to do as many of the things that I was able to even 3 months ago, so hopefully these drs can figure out something soon! If anyone has any ideas, comments, etc please let me know and its great to hear from all of you! Please pray for my dad, who has almost died from colon cancer recently.  God bless you all!

Carrie

shannalee29's picture
shannalee29
Posts: 1
Joined: Sep 2018

June 2017 - severe abdominal pain.  Dr. S wanted a CT scan done.  Insurance wouldn't pay for it.  An ultrasound was ordered instead.  It showed nothing.

On July 12, 2017 - I had a colonoscopy appt (I have had colitis since I was 19 years of age, I am now 57).  The Dr found a tumor so ordered a CT scan immediately.

August 9, 2017 - 2" tumor removed along with half of my colon and I was diagnosed with Stage 3 - Colon Cancer. 

I was on chemo from September 11, 2017 - March 21, 2018. 

April 9, 2018 - CEA level was 1.4.

July 11, 2018 - colonoscopy done, all results were great

July 17, 2018 - CEA level went up to 3.5.

August 20th, I had a CT Thorax with Contrast and CT Abdomen and Pelvis w IV Contrast and it has shown nothing. 

August 28, CEA rose to 6.6 and

2 weeks later (September 11, 2018) it was up to 8.2.

Next a PET Scan is ordered for September 24, 2018.

I am already looking for answers, in case the PET scan shows nothing.  This is a very scary path.

Thank you for any answers anyone may have.

Shanna

 

 

 

Subscribe to Comments for "CEA rising but no cancer detection "