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maestro
@maestro

Posts: 6
Joined: Jul 20, 2018

Realistic CEA Perspective Needed

Posted by @maestro, Fri, Jul 20 6:07pm

New to the forum. Hoping I can find someone out there with an opinion.

35yo Male (at time of diagnosis)
Diagnosed 1/16 with T3n1 colo-rectal cancer
6 weeks preoperative chemotherapy
Lower anterior resection 6/16
Resection take down 8/16 🙂 🙂 🙂

Since the surgery, my CEA (1.6 preoperative/ .4 postoperative) has climbed steadily from .4 to 17.6 (current). It measured 14.8 two months ago and 17.6 this month. Planning to see my doctor on Monday. I'm looking for any thoughts/experiences from others to help me prepare for the meeting. After studying different causes for elevated CEA, smoking/infection/etc., none seems to account for how high this number is. It seems that the typical CEA cut-off 10 is very rarely because of these underlying factors.

What I'm really looking for is reality. I would rather know that there is a near certain chance of recurrence, than to avoid statistics or studies that may indicate recurrence. I want to know what my next steps/options are (requesting a PET scan on Monday). I think understanding my current situation, will help me prepare, mentally, for what might be coming.

After all of my reading and searching, I have trouble seeing these CEA results as anything but indicative of recurrence.

Thank you so much for reading, and if you have thoughts and time to reply I would GREATLY appreciate it.

Logan

REPLY

Hi Logan, my husbands has stage 4 colon cancer (colon cancer with Mets to liver and lungs). When he was diagnosed his cea was 298. Yes 298. We have met many, many people with colon cancer during our 7 year journey and some of these folks have had a Cea of over 2,000! ( I just thought I would share this info as a perspective of others cea numbers vs yours) . My husbands numbers have gone as low as 2 after surgery and have climbed in conjunction with new tumors. Usually after treatment ( not only chemo) his numbers go back down again. I think CEA is just one indicator to keep your eye on. I applaud you for trying to get in front of this disease. Knowledge is truly power. I hope this helps.

@brenz

Hi Logan, my husbands has stage 4 colon cancer (colon cancer with Mets to liver and lungs). When he was diagnosed his cea was 298. Yes 298. We have met many, many people with colon cancer during our 7 year journey and some of these folks have had a Cea of over 2,000! ( I just thought I would share this info as a perspective of others cea numbers vs yours) . My husbands numbers have gone as low as 2 after surgery and have climbed in conjunction with new tumors. Usually after treatment ( not only chemo) his numbers go back down again. I think CEA is just one indicator to keep your eye on. I applaud you for trying to get in front of this disease. Knowledge is truly power. I hope this helps.

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Thank you so much for the response! It's good to hear from others who have, and are, going through this. Thank you. One of my biggest fears is having something in the blood work that I should act on, while waiting for a scan to show something. It's been two months since my last CT scan, and I'm hoping that a PET scan might give more insight. Did your husband find his recurrence through CT or PET?

Again, thank you so much for taking the time to read!

@brenz

Hi Logan, my husbands has stage 4 colon cancer (colon cancer with Mets to liver and lungs). When he was diagnosed his cea was 298. Yes 298. We have met many, many people with colon cancer during our 7 year journey and some of these folks have had a Cea of over 2,000! ( I just thought I would share this info as a perspective of others cea numbers vs yours) . My husbands numbers have gone as low as 2 after surgery and have climbed in conjunction with new tumors. Usually after treatment ( not only chemo) his numbers go back down again. I think CEA is just one indicator to keep your eye on. I applaud you for trying to get in front of this disease. Knowledge is truly power. I hope this helps.

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Actually, the doctor sometimes orders a petscan and sometimes orders a ctscan. Both have given us insight of reoccurrence. It seems like insurance companies are pushing back on pet scans because of the expense, but ctscans with contrast have given us good info too.

Hello @maestro,

Welcome to Connect. As @brenz shared (thank you!), the clinical value of CEA in colorectal cancer is still not clear. In fact, this recently published study, http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0171810, concludes that CEA must not be used alone as a means of monitoring for colorectal cancer recurrence.

I'd like to introduce you to a few other members who have shared their insights about CEA levels, particularly in this discussion: https://connect.mayoclinic.org/discussion/cea-levels/
Please meet @travelgirl @martid @ilene1 @soul @brglight @nannytart @bush @sallyg @starrlight @joannem @diannechildress.

I think you might find the "Gastroenterology & GI Surgery Page" useful, where Mayo Clinic colorectal cancer experts have answered some common questions through short videos about risks, prevention, screening options and treatment for both colon cancer and rectal cancer:
https://connect.mayoclinic.org/page/gastroenterology-and-gi-surgery/tab/colorectal-cancer/

I wish you all success for your upcoming appointment, @maestro. Can you also keep us posted on the outcome?

Liked by maestro

@kanaazpereira

Hello @maestro,

Welcome to Connect. As @brenz shared (thank you!), the clinical value of CEA in colorectal cancer is still not clear. In fact, this recently published study, http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0171810, concludes that CEA must not be used alone as a means of monitoring for colorectal cancer recurrence.

I'd like to introduce you to a few other members who have shared their insights about CEA levels, particularly in this discussion: https://connect.mayoclinic.org/discussion/cea-levels/
Please meet @travelgirl @martid @ilene1 @soul @brglight @nannytart @bush @sallyg @starrlight @joannem @diannechildress.

I think you might find the "Gastroenterology & GI Surgery Page" useful, where Mayo Clinic colorectal cancer experts have answered some common questions through short videos about risks, prevention, screening options and treatment for both colon cancer and rectal cancer:
https://connect.mayoclinic.org/page/gastroenterology-and-gi-surgery/tab/colorectal-cancer/

I wish you all success for your upcoming appointment, @maestro. Can you also keep us posted on the outcome?

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Thank you so much for the information and links. I read through them this morning over coffee. A ton of good info there. Understanding that the CEA is not used alone to determine recurrence, and especially not useful for initial diagnosis, I have thoughts on the raw data of the study.

The final chart lists CEA testing results for every patient in the study. In addition, it indicates patients with recurrence. When I sort by recurrence, I find CEA tests of >14 among those with recurrence, whereas when I look at patients that had no recurrence, the highest value that I found was 7.

Among the patients with recurrences, there are plenty of individuals with normal CEA levels . I believe this lends itself to the statement that CEA levels alone cannot detect, since patients deal with recurrence at normal CEA levels, and often don't have recurrence with elevated CEA. However, since the data on patients that did not have a recurrence includes no CEA levels above 7, it seems that numbers >10 lead to recurrence or related preventative measures (chemo, etc.).

Tricky stuff to parse through, but extremely interesting.

I can't say thank you enough to all who read and respond. Opinions, experiences, and support are so critical to navigating this landscape.

Thank you, thank you, thank you!

@maestro are you comfortable sharing what you learned from your oncologist today regarding the CEA levels?

Hey @colleenyoung

Met with doctor yesterday to talk about things. Long story short, it seems that scanning and waiting for something to show up is the only option available.

I've been with this doctor for nearly a year and have always enjoyed the amount of time, attention, and information he brings. With that said, there were a couple of odd things from yesterday's appointment.

First, he did not have my original cancer staging. He said it didn't exist anywhere he could find. However, I showed him my pathology report from UAR where the number was listed appropriately in the correct place. He downplayed and said the original staging was not important.

I then asked about my blood work (CEA) levels pre-op to current. He had no results from before I started seeing him. (I've only been with him from November of last year) Again, he downplayed not having/synthesizing >1 year of info from those tests as fairly unimportant to current strategy.

Next, I requested a PET scan. He actually said that PET scans were less effective than CT scans for detecting recurrence.

We spoke about tumor markers and why only CEA has been used thus far. (this part of the explanation is a blur, but I do have an audio recording to review)

At the end of it all, I requested CT/PET scan, pending insurance approval, and took more blood to check for all tumor markers and info available. The wait-and-see approach is excruciating, but it may be the best that we have?

Again, THANK YOU all for reading and following up. I will keep you posted as things progress. Looking forward to reading any thoughts/opinions that other's have to share!

@maestro

Hey @colleenyoung

Met with doctor yesterday to talk about things. Long story short, it seems that scanning and waiting for something to show up is the only option available.

I've been with this doctor for nearly a year and have always enjoyed the amount of time, attention, and information he brings. With that said, there were a couple of odd things from yesterday's appointment.

First, he did not have my original cancer staging. He said it didn't exist anywhere he could find. However, I showed him my pathology report from UAR where the number was listed appropriately in the correct place. He downplayed and said the original staging was not important.

I then asked about my blood work (CEA) levels pre-op to current. He had no results from before I started seeing him. (I've only been with him from November of last year) Again, he downplayed not having/synthesizing >1 year of info from those tests as fairly unimportant to current strategy.

Next, I requested a PET scan. He actually said that PET scans were less effective than CT scans for detecting recurrence.

We spoke about tumor markers and why only CEA has been used thus far. (this part of the explanation is a blur, but I do have an audio recording to review)

At the end of it all, I requested CT/PET scan, pending insurance approval, and took more blood to check for all tumor markers and info available. The wait-and-see approach is excruciating, but it may be the best that we have?

Again, THANK YOU all for reading and following up. I will keep you posted as things progress. Looking forward to reading any thoughts/opinions that other's have to share!

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Just updating…Mondays blood work came back yesterday. CEA has now risen to 21. Scheduling PET and CT to see if we can find anything. I'll update as soon as I have more info.

@maestro

Hey @colleenyoung

Met with doctor yesterday to talk about things. Long story short, it seems that scanning and waiting for something to show up is the only option available.

I've been with this doctor for nearly a year and have always enjoyed the amount of time, attention, and information he brings. With that said, there were a couple of odd things from yesterday's appointment.

First, he did not have my original cancer staging. He said it didn't exist anywhere he could find. However, I showed him my pathology report from UAR where the number was listed appropriately in the correct place. He downplayed and said the original staging was not important.

I then asked about my blood work (CEA) levels pre-op to current. He had no results from before I started seeing him. (I've only been with him from November of last year) Again, he downplayed not having/synthesizing >1 year of info from those tests as fairly unimportant to current strategy.

Next, I requested a PET scan. He actually said that PET scans were less effective than CT scans for detecting recurrence.

We spoke about tumor markers and why only CEA has been used thus far. (this part of the explanation is a blur, but I do have an audio recording to review)

At the end of it all, I requested CT/PET scan, pending insurance approval, and took more blood to check for all tumor markers and info available. The wait-and-see approach is excruciating, but it may be the best that we have?

Again, THANK YOU all for reading and following up. I will keep you posted as things progress. Looking forward to reading any thoughts/opinions that other's have to share!

Jump to this post

Good Luck,and I will be praying for you.

Welcome @bobbywood427!
May I ask what brings you to Connect?

Greetings all. Wanted to post an update. I had a PET scan last week and got a call the same day from my oncologist's office. They went over the results with me, and I am to see my oncologist tomorrow. So without going into too much detail until I understand more, the scan showed two metastatic lymph nodes in the region of the original tumor and potential metastasis near the location of the previous iliostomy. I will continue to post updates once my doctor and I parse through this.

Good luck to all who are fighting the good fight.

Thanks @maestro; we so appreciate the updates and insights you're sharing.

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