Anxiety around CEA

zx10guy

I posted this on Colontown and figured it might help out some on the forum here.

CEA and the dreaded rise.

There has been numerous posts about CEA rise and all the anxiety associated with it. We all get it and understand. For the most part I see posts about rises that are few tenths or maybe a point or two. But there hasn't been many posts on what happens when there is a huge jump. I'm not talking about a point or two. I'm talking about 10 points or higher.

Well, that's the situation I've been in since my check up back in March. I've always had a high baseline no matter if my CEA was done by the Bayer/Siemens or Roche test. With the Roche test done by Labcorp, I've baselined around 5.2 to 5.6. So you can imagine the surprise when my CEA came back in March at 15.6 when my CEA done in December was 5.2. My entire medical team were scratching their heads wondering how this was even possible given I had clean scans and the previous CEA done in September was 5.4. Maybe it's lab error. So a retest was immediately done....16.7. Ok. So we know now it's not a lab error. What could it be?

Now comes the barrage of tests I have mentioned on here before. In a two week span, I've had a full CBC/metabolic/liver function test, CT w/contrast chest/abdomen, PET/CT skull base to mid thigh, small bowel capsule endoscopy, and colonoscopy. A few weeks later I went in for an MRI Enterography. And a few weeks after that, I had an endoscopy w/ ultrasound. All those tests and nothing cancer related was found. There were other issues found but no cancer.

Back to CEA tests. I had another CEA done the first week of May. It came back at 14.2. Ok. So it's not rising and dropped a fair bit. Now we do a wait and see. So I just had another CEA done yesterday. I just got the results from the online portal. 11.9. So it looks like I'm trending in the right direction. I'll have to ask my oncologist if we should do another CEA in July/August or wait till my next appointment in September.

Some of the things found through all of these tests was gastritis, some thickening in the duodenum area, and inflammation as noted by the last procedure I had done in my GI tract.

What does this all mean? Well, it appears my CEA may have spike due to the other GI issues discovered by the above mentioned tests/procedures. Which should give people comfort that something other than cancer could significantly spike your CEA. Hope this helps others and provides some comfort.

Trubrit

I should, but it won't

I am really happy to hear that your CEA is dropping, and pray that whatever has been ailing your innards, is cleared up, and you won't have to go through the horrors of thinking the Cancer is back, and the subsequent test after test after test. 

My CEA jumped from 0.5 to 10 and then up to 19 a week later.  I had a CT scan which was clear, and followed that up with a PET which showed a tumour in the liver. The tumour ended up being 2.2 cm, which I thought would have been big enough to show on a CT scan. 

Dang this Cancer thing! Its a never ending head game when you're NED, BUT, thank goodness when we are NED. My heart aches for those who haven't heard those wonderul words. 

May your CEA continue to drop back to your normal. 

Tru

Annabelle41415

CEA

It's hard to judge a CEA test.  Mine was always normal even though having a tumor and cancer.  Sometimes peoples numbers rise for different reasons.  If you've had all those tests, I'd rely on those more than a CEA number.  Most doctor's won't even do a CEA due to the inaccurate results associated with it and that includes my doctor, but I've always pushed for it.

Kim

zx10guy

Trubrit said:

I should, but it won't

I am really happy to hear that your CEA is dropping, and pray that whatever has been ailing your innards, is cleared up, and you won't have to go through the horrors of thinking the Cancer is back, and the subsequent test after test after test. 

My CEA jumped from 0.5 to 10 and then up to 19 a week later.  I had a CT scan which was clear, and followed that up with a PET which showed a tumour in the liver. The tumour ended up being 2.2 cm, which I thought would have been big enough to show on a CT scan. 

Dang this Cancer thing! Its a never ending head game when you're NED, BUT, thank goodness when we are NED. My heart aches for those who haven't heard those wonderul words. 

May your CEA continue to drop back to your normal. 

Tru

Thank you Tru.  The weird

Thank you Tru.  The weird thing about this time with a CEA jump was I wasn't too panicked.  Been relatively calm through out despite the CEA numbers being the highest ever for me.

As for the CT missing the tumor, it is possible especially if the contrast didn't get to where it needed.  If you've ever looked a CT scan images, it's really tough to make out lots of things.  The images are all in gray scale and the radiologist has to be able to discern differences in brightness to see any lesions in the surrounding tissue.  This is why radiology is many times more art than science as it's up to the interpretation of the radiologist viewing the the images.  This is also why with second opinions, many times either a new CT is ordered or the CT is reviewed again by a different radiologist.  This is why I always get copies of my scan images.  Last year I've started a consult with NIH/NCI where they've been receiving copies of my tests and images in case a recurrence is found.

zx10guy

Annabelle41415 said:

CEA

It's hard to judge a CEA test.  Mine was always normal even though having a tumor and cancer.  Sometimes peoples numbers rise for different reasons.  If you've had all those tests, I'd rely on those more than a CEA number.  Most doctor's won't even do a CEA due to the inaccurate results associated with it and that includes my doctor, but I've always pushed for it.

Kim

Hi Kim,

Hi Kim,

I understand what you're saying about CEA and how it can vary by person.  For me, it appears to be a good indicator as when I was diagnosed initially back in 2012, my pre surgery CEA was 13.9.  After surgery, my CEA number trended down as predicted through chemo to ultimately get to its lowest at 3.11 with the Bayer/Siemens test and 4.7 for the Roche test.  After 3.5 years of just routine checkups, last summer, I had a spike in my CEA number from 5.6 to 9.7.  Doc thought it was a lab error and did a retest.  11.  Ok.  So not a lab error.  PET/CT was ordered.  Radiologist said nothing found.  I look at the scan images myself and see a bright glowing hot spot in my right lower quandrant of my ab.  I was puzzled how the radiologist declared me all clear when there's an obvious area of metabolic activity.  I used the software included with the scan images to determine the SUV of that area.  6.7.  Hardly a benign situation.

My next course of action was a colonoscopy which I was due for anyways.  During that procedure where I was wide awake, we happened to find by chance a polyp in my appendicial opening.  Not good.  Biopsies taken show high grade dysplasia.  Regardless I have to have surgery to take out at least my appendix.  Consulted with my surgeon who thought a cecectomy was enough to address this until I told him about my elevated CEA numbers along with what I felt was a trigger in my PET scan.  He had the scan images re-reviewed with his radiologist and they think it is a concentration of radioactive tracer in my ureter making its way to my bladder.  I still find it interesting that the hot spot almost lined up with where the polyp was.  So the course of action is to have a right hemicolectomy.  Pathology comes back.  Stage 0 appendicial cancer.  Cancer cells found on the surface of the polyp in situ.  So the biopsy from the colonoscopy didn't paint an accurate picture.

Most of my medical team feels the cancerous polyp triggered the CEA spike.  My oncologist stil holds to the notion that the polyp didn't cause the CEA spike.  And why after all the tests I've gone through he feels it's just one of those situations for me that I have these unexplained spikes.  The plan going forward is to still test CEA to see where the trend is going.

I did have another CEA done ordered by my primary care physician last year just before my right hemicolectomy surgery.  Wanted to see where the number was...if it was still trending up or going down.  The number came back at 9.7.  So it sort of went down but I looked at it as being still the same.  This time, the trending I do believe as there's been months between the first and last test I've had and the number has dipped well below the original test showing the spike.  I guess we'll see where things are in September when I go back for another checkup.

jri_in_wnc

Hi zx10

I've experienced big jumps & dips since being diagnosed Stage IV 10/14. Initial CEA was 182. After 3 chemo tx, it dropped to 124 I believe, then to 22. After that it dropped incrementally to it's lowest at 3 something. This year has been rough for various reasons & I've not been able to be consistent with chemo. It climbed to 100, then to 154 in April, most recent 257. I'm scheduled to resume chemo in 2 weeks, with a scan the day before. At no time ever have I bee declared NED and honestly don't expect to be athough it would be nice. I do expect the CT scan to show more growth, especially in the liver as I've been having more discomfort there. While I'm aware of different labs having different results, I honestly don't know which method is used by my local onc vs my team at Duke. Thought I'd throw my 2 cents in, since you said you hadn't seen anyone talk of huge jumps in CEA. ☺

zx10guy

jri_in_wnc said:

Hi zx10

I've experienced big jumps & dips since being diagnosed Stage IV 10/14. Initial CEA was 182. After 3 chemo tx, it dropped to 124 I believe, then to 22. After that it dropped incrementally to it's lowest at 3 something. This year has been rough for various reasons & I've not been able to be consistent with chemo. It climbed to 100, then to 154 in April, most recent 257. I'm scheduled to resume chemo in 2 weeks, with a scan the day before. At no time ever have I bee declared NED and honestly don't expect to be athough it would be nice. I do expect the CT scan to show more growth, especially in the liver as I've been having more discomfort there. While I'm aware of different labs having different results, I honestly don't know which method is used by my local onc vs my team at Duke. Thought I'd throw my 2 cents in, since you said you hadn't seen anyone talk of huge jumps in CEA. ☺

Hi.

Hi.

Sorry you're still dealing with your Stage 4 diagnosis.  A quick and dirty way to determine if you're being evaluated under the Bayer/Siemens test versus the Roche test is the upper limit for normal.  Under the Bayer/Siemens test, normal was declared for a nonsmoker as 0 to 3.  Under the Roche test it's from 0 to the upper 4s and this can vary depending on the lab.  The lab should be reporting what their normal range is.

Not to discount your reply.  The intent of my thread is for those that are NED and are just in the monitoring phase.  All I see are posts talking about CEA changes of only a few tenths to a point or two.  I haven't run across any threads where there has been a significant jump like mine and any outcomes.  That's why I posted my thread to put out there a situation which for now looks like it's a benign situation for the 10+ point jump I had.

I also asked my oncologist about how common it is to see CEA jumps this high and it turn out to be nothing.  He said with his patients, he's seen some go as high as 20 and it turn out to be nothing.  I asked how many of his patients have exhibited this type of behavior and he said roughly 1 out of 4 of his patients with CEA being tracked.  This isn't a small number and not something that can be considered uncommon....if I am to believe his estimate.

beaumontdave

A great post z and an

A great post z and an important point about containing anxiety over one variable. It did prompt me to think on the year I had after the second liver met surgery, back on 9/6/14. Four CT's followed by four PET's, endoscopy and colonoscopy, and two seperate fluid removals on my right lung. The only thing I could hold onto was the lowest CEA numbers I'd ever had [1.6-2], but that alone sustained my belief that I was clear. The docs finally quit looking and then through 2016, that number kept doing a slow rise, 2.2, 2.4, 2.6, then finally in Dec. it dropped to 2.2 again. So my story is that I've live both fear and comfort with that maddening test, and I'm sure we all hope for a better test soon..................................Dave

Annabelle41415

zx10guy said:

Hi Kim,

Hi Kim,

I understand what you're saying about CEA and how it can vary by person.  For me, it appears to be a good indicator as when I was diagnosed initially back in 2012, my pre surgery CEA was 13.9.  After surgery, my CEA number trended down as predicted through chemo to ultimately get to its lowest at 3.11 with the Bayer/Siemens test and 4.7 for the Roche test.  After 3.5 years of just routine checkups, last summer, I had a spike in my CEA number from 5.6 to 9.7.  Doc thought it was a lab error and did a retest.  11.  Ok.  So not a lab error.  PET/CT was ordered.  Radiologist said nothing found.  I look at the scan images myself and see a bright glowing hot spot in my right lower quandrant of my ab.  I was puzzled how the radiologist declared me all clear when there's an obvious area of metabolic activity.  I used the software included with the scan images to determine the SUV of that area.  6.7.  Hardly a benign situation.

My next course of action was a colonoscopy which I was due for anyways.  During that procedure where I was wide awake, we happened to find by chance a polyp in my appendicial opening.  Not good.  Biopsies taken show high grade dysplasia.  Regardless I have to have surgery to take out at least my appendix.  Consulted with my surgeon who thought a cecectomy was enough to address this until I told him about my elevated CEA numbers along with what I felt was a trigger in my PET scan.  He had the scan images re-reviewed with his radiologist and they think it is a concentration of radioactive tracer in my ureter making its way to my bladder.  I still find it interesting that the hot spot almost lined up with where the polyp was.  So the course of action is to have a right hemicolectomy.  Pathology comes back.  Stage 0 appendicial cancer.  Cancer cells found on the surface of the polyp in situ.  So the biopsy from the colonoscopy didn't paint an accurate picture.

Most of my medical team feels the cancerous polyp triggered the CEA spike.  My oncologist stil holds to the notion that the polyp didn't cause the CEA spike.  And why after all the tests I've gone through he feels it's just one of those situations for me that I have these unexplained spikes.  The plan going forward is to still test CEA to see where the trend is going.

I did have another CEA done ordered by my primary care physician last year just before my right hemicolectomy surgery.  Wanted to see where the number was...if it was still trending up or going down.  The number came back at 9.7.  So it sort of went down but I looked at it as being still the same.  This time, the trending I do believe as there's been months between the first and last test I've had and the number has dipped well below the original test showing the spike.  I guess we'll see where things are in September when I go back for another checkup.

Obviously your numbers do indicate a possible problem.  Can't believe that you picked up something that they didn't.  I'd never be able to read any tests.  I'm wishing you well with your appointment in September.  You seem to be very aware of what is going on and that is wonderful because a lot of people just do what there doctor's tell them.  Keep up the great work on your situation because you are your best advocate. 

Kim

strider7

CEA jump

I was diagnosed stage four about a year ago. Initial CEA was 500+ but with chemo, immediately began to plummet. Third session it was 64. I took Xeloda, Oxalyplatin, and Avastin for several months then my doc dropped the Oxalyplatin because of side effects. A few more months and he dropped the Xeloda, same reason. My CEA had been around 6.4 at the lowest point but began to climb.. 20's, 30's, added Xeloda again. Two more rounds of Xeloda and CEA still climbing, 50's now, doc wants to switch me to Avastin plus FOLFIRI. I'm awaiting insurance approval, hoping the side effects aren't too awful. I'm gonna be 73 September, and QOL is a big thing for me. Xeloda has done a job on my hands and feet, can't walk far, can't do much with my hands when I get there.

zx10guy

Figured I would bring this

Figured I would bring this back to the top and provide an update.

Had another scan today and got the report a few hours later.  Still NED.  It will be interesting to see where my CEA is since it's been 6 months since my last CEA test.  Going in on the 14th to see my oncologist and get the blood draw.

Marley1983

zx10guy said:

Figured I would bring this

Figured I would bring this back to the top and provide an update.

Had another scan today and got the report a few hours later.  Still NED.  It will be interesting to see where my CEA is since it's been 6 months since my last CEA test.  Going in on the 14th to see my oncologist and get the blood draw.

Sending prayer

Sending prayers for good results on your blood work.~Traci

beaumontdave

Sounds like the year 2015 was

Sounds like the year 2015 was for me, except the CEA was the only thing that was stable, the only thing I could hold on to. Counting Dec. 2014 it was 2 lung aspirations, 4 CT's followed by 4 PET's, an endoscopy with an unscheduled colonoscopy, and a whole lot of head shaking by the doctors. In the end all they found and treated was H. Pylori in my stomach. Including the loss of my wife, it made for a hell of a year. I hope your numbers get to a stable and constant level, and you can get off the three month scary-go-round of waiting and wondering.................................................Dave

Annabelle41415

Awesome

That's very good news that you are NED.  It's better to get a scan that says you are NED than a CEA that gives an unfavorable result as they aren't always accurate but a scan is much more accurate.  Good luck on the CEA results and hope that brings you much relief as well.  Enjoy your NED status and do a happy dance and celebrate.  Thanks for the update.

Kim