CEA is a yo-yo

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Koreysue
Posts: 258
Joined: Mon Apr 30, 2018 2:36 pm

CEA is a yo-yo

Postby Koreysue » Mon May 17, 2021 11:04 am

Hey all,

Just stopped by to say hello, and also to share that my CEA is 4.2
It was 3.5 last time and 4.5 before that :roll:
I know that’s not near as high as some people’s numbers, but it is upsetting each time it goes up. I have accepted that I may just be in the high normal range, but like it much better when it is in the 3 range.

ksue
Dx: 6/2017 stage 3 CC
Sigmoid, 2 nodes
CEA at dx: 6.1
Sigmoid Colectomy/folfox (last chemo (1/31/18)
CEA 4/2018: 2.4
CEA 7/2018: 3.7
Colonoscopy 8/18 clean
PET scan 8/20/18 NED
CEA 11/2018: 3.8
CEA 2/2019: 3.2
CT NED 6/18/19 / CEA : 3.4
CEA 10/21/19: 3.2
CEA 3/9/20: 3.8
CT NED /CEA 6/17/20: 3.8
CEA 11/4/20 4.6 <——— whyyyy? (will retest in a few weeks)
CT NED 12/1/20 CEA: 3.5
CEA 5/21 4.2
CEA 10/21 3.4
colonoscopy 10/21 10mm polyp
CEA 4/22 3.7
CEA 7/22 3.8
CEA 12/22 4
CEA 1/22 3.2 and NED 5yr scan

michelle c
Posts: 1929
Joined: Wed Dec 02, 2009 3:58 am

Re: CEA is a yo-yo

Postby michelle c » Tue May 18, 2021 2:00 am

I know you’ve posted about your CEA before. It is quite normal for CEA results to bounce up and down. I never had two CEA results the same. Maybe you shouldn’t have them as often due to the anxiety that they cause you. The fact that it was higher two results ago, than it is now, is a good sign. Bouncing around is ok, it is an upward trend that oncologists look for. Try not to stress, I really think that it’s nothing to worry about :) xx
May 25 2009 Dx with CC (sigmoid colon) 2 days after my 44th b'day
CEA prior to surgery 4.7
Jun 3 2009 LAR - Stage III 3/10 lymph nodes
Jul 6 - Dec 10 2009 - 12 cycles FOLFIRI
Genetic testing - inconclusive for Lynch
Jul 2012 port removed & hernia repair

User avatar
GrouseMan
Posts: 888
Joined: Mon Aug 12, 2013 12:30 pm
Location: SE Michigan USA

Re: CEA is a yo-yo

Postby GrouseMan » Tue May 18, 2021 2:18 pm

All the CEA results I see in your signature fall within what is considered the normal range. I would not be concerned with it until it starts climbing above 5 or more. It doesn't appear to be a good marker for your cancer. These measurements are causing you undue stress for no good reason. Have a frank talk with your Oncologist about your fears. Someone off the streets without any history of colon cancer is likely to show the same results bouncing around like that. For some people with cancer a CEA measurement is not useful at all. My wife's test it started out high (~ 125 if I remember correctly) went into the normal range for a while bouncing around then gradually came up indicating something before the CT scans really could in her case. It was a good marker for her. There is a lot of information about CEA tests on this forum. I believe its been summarized a couple of times.

Good Luck
GrouseMan
DW 53 dx Jun 2013
CT mets Liver Spleen lung. IVb CEA~110
Jul 2013 Sig Resct
8/13 FolFox,Avastin 12Tx mild sfx, Ongoing 5-FU Avastin every 3 wks.
CEA: good marker
7/7/14 CT Can't see the spleen Mets.
8/16/15 CEA Up, CT new abdominal mets. Iri, 5-FU, Avastin every 2 wks.
1/16 Iri, Erbitux and likely Avastin (Trial) CEA going >.
1/17 CEA up again dropped from Trial, Mets growth 4-6 mm in abdomen
5/2/17 Failed second trial, Hospitalized 15 days 5/11. Home Hospice 5/26, at peace 6/4/2017

User avatar
Green Tea
Posts: 451
Joined: Mon Oct 24, 2016 10:48 am

Re: CEA is a yo-yo

Postby Green Tea » Wed May 19, 2021 4:33 am

GrouseMan wrote:...There is a lot of information about CEA tests on this forum. I believe its been summarized a couple of times.
Good Luck
GrouseMan

Yes, that's true ... many, many posts on CEA since 2005:

crikklekay
Posts: 142
Joined: Thu Feb 15, 2018 9:47 am
Location: Richmond, VA

Re: CEA is a yo-yo

Postby crikklekay » Wed May 19, 2021 1:35 pm

Uuuggghhh I haaaate CEA. When John was in the hospital his CEA was 12 and the Onc told him that it was possible his blockage wasn't cancer as inflammation can cause high CEA and that wasn't a drastically high number. We weren't that lucky of course, and he has stayed in normal ranges until recently so I completely get being upset. I read somewhere that weird CEA increases are nothing ~40% of the time, so I feel like it's Schrödinger's cat. Definitely talk to your doctor, I've freaked out over blood results before that came back "high" only to be told by the Onc that it isn't something to worry about until X level. Sending good vibes to you!
Caring for DH John
Stage IIIC, Lymph nodes: 6/22
Chemo: FOLFOX (6)
12/17 ER and emergency surgery
02/18 Hospital w/MSSA infected port, PICC line inserted, chest CT scan showed septic emboli & blood clots
03/18 Hospital w/CDIFF
08/18 CT Scan Clear, NEMD
2018/2019/2021 Colonoscopy Clear
2019/2020/2021/2022 CT Scan Clear
2021 PET scan & MRI show one spot on liver
08/21 Liver surgery to remove spot, confirmed mCRC. Now Stage IV
09/21 Start Folfiri + Avastin
03/22 CEA Rise, continuing chemo

Punky44
Posts: 498
Joined: Mon Oct 01, 2018 4:29 pm

Re: CEA is a yo-yo

Postby Punky44 » Wed May 19, 2021 4:10 pm

Another hater of CEA!

My mom’s last one was her highest yet...until I learned that because we went to a different lab they used a different scale and so it was an apples/oranges kind of thing. Anxious for her next one next month at her normal lab.

Could that be the case with you?
Caregiver to my amazing mom (68 at dx)
10/1/18 DX with rectal cancer; CEA 17
T3N2M0
Total neoadjuvant therapy:
8 rounds Folfox 11/5/18 - 2/11/19
Short course radiation 3/14/19 - 3/20/19
Robotically assisted laparoscopic LAR 3/21/19
Pathology report says yT2N0M0 with 0/38 nodes
6/28/19 Reversal and port out
CEA 2.1; 1.9; 2.6; 2.8; 2.3; 2.4; 3.0; 3.4; 3.1; 3.4; 3.0; 3.1; 2.6
Latest update: 8/21/23 Clear CT with CEA 2.6!

Me: 34, first colonoscopy 11/16/18—normal! Come back in 5 years.

crikklekay
Posts: 142
Joined: Thu Feb 15, 2018 9:47 am
Location: Richmond, VA

Re: CEA is a yo-yo

Postby crikklekay » Thu May 20, 2021 8:07 am

Unfortunately not, though the Onc must of thought of that because we did have to use a new lab because of COVID so they tested it again in-house and it only came back .2 lower. He did forget to fast before his most recent appointment where it went up again, but she said that shouldn't have affected it. I didn't know that labs could measure CEA based off different scales though, thanks for bringing that up!
Caring for DH John
Stage IIIC, Lymph nodes: 6/22
Chemo: FOLFOX (6)
12/17 ER and emergency surgery
02/18 Hospital w/MSSA infected port, PICC line inserted, chest CT scan showed septic emboli & blood clots
03/18 Hospital w/CDIFF
08/18 CT Scan Clear, NEMD
2018/2019/2021 Colonoscopy Clear
2019/2020/2021/2022 CT Scan Clear
2021 PET scan & MRI show one spot on liver
08/21 Liver surgery to remove spot, confirmed mCRC. Now Stage IV
09/21 Start Folfiri + Avastin
03/22 CEA Rise, continuing chemo

Koreysue
Posts: 258
Joined: Mon Apr 30, 2018 2:36 pm

Re: CEA is a yo-yo

Postby Koreysue » Wed May 26, 2021 11:03 pm

michelle c wrote:I know you’ve posted about your CEA before. It is quite normal for CEA results to bounce up and down. I never had two CEA results the same. Maybe you shouldn’t have them as often due to the anxiety that they cause you. The fact that it was higher two results ago, than it is now, is a good sign. Bouncing around is ok, it is an upward trend that oncologists look for. Try not to stress, I really think that it’s nothing to worry about :) xx



Oh man, I wish I could never have the test again. I really do feel that it causes more stress than good in my case. Thanks for your reply. I know I am always worrying about CEA specifically...I do think that stems from my anxiety disorder and OCD that I had prior to diagnosis. Hard to let things go.
Ksue
Dx: 6/2017 stage 3 CC
Sigmoid, 2 nodes
CEA at dx: 6.1
Sigmoid Colectomy/folfox (last chemo (1/31/18)
CEA 4/2018: 2.4
CEA 7/2018: 3.7
Colonoscopy 8/18 clean
PET scan 8/20/18 NED
CEA 11/2018: 3.8
CEA 2/2019: 3.2
CT NED 6/18/19 / CEA : 3.4
CEA 10/21/19: 3.2
CEA 3/9/20: 3.8
CT NED /CEA 6/17/20: 3.8
CEA 11/4/20 4.6 <——— whyyyy? (will retest in a few weeks)
CT NED 12/1/20 CEA: 3.5
CEA 5/21 4.2
CEA 10/21 3.4
colonoscopy 10/21 10mm polyp
CEA 4/22 3.7
CEA 7/22 3.8
CEA 12/22 4
CEA 1/22 3.2 and NED 5yr scan

Koreysue
Posts: 258
Joined: Mon Apr 30, 2018 2:36 pm

Re: CEA is a yo-yo

Postby Koreysue » Wed May 26, 2021 11:07 pm

Punky44 wrote:Another hater of CEA!

My mom’s last one was her highest yet...until I learned that because we went to a different lab they used a different scale and so it was an apples/oranges kind of thing. Anxious for her next one next month at her normal lab.

Could that be the case with you?



I don’t believe they have changed anything- I am sure it is just another unexplained rise. I am tempted to just opt out of the test, but then that worries me too. I appreciate that you and I have the worrying thing down pat, it seems :lol: Glad your mom’s rise was due to the lab change. Thanks for your reply,
Ksue
Dx: 6/2017 stage 3 CC
Sigmoid, 2 nodes
CEA at dx: 6.1
Sigmoid Colectomy/folfox (last chemo (1/31/18)
CEA 4/2018: 2.4
CEA 7/2018: 3.7
Colonoscopy 8/18 clean
PET scan 8/20/18 NED
CEA 11/2018: 3.8
CEA 2/2019: 3.2
CT NED 6/18/19 / CEA : 3.4
CEA 10/21/19: 3.2
CEA 3/9/20: 3.8
CT NED /CEA 6/17/20: 3.8
CEA 11/4/20 4.6 <——— whyyyy? (will retest in a few weeks)
CT NED 12/1/20 CEA: 3.5
CEA 5/21 4.2
CEA 10/21 3.4
colonoscopy 10/21 10mm polyp
CEA 4/22 3.7
CEA 7/22 3.8
CEA 12/22 4
CEA 1/22 3.2 and NED 5yr scan

Koreysue
Posts: 258
Joined: Mon Apr 30, 2018 2:36 pm

Re: CEA is a yo-yo

Postby Koreysue » Wed May 26, 2021 11:11 pm

crikklekay wrote:Uuuggghhh I haaaate CEA. When John was in the hospital his CEA was 12 and the Onc told him that it was possible his blockage wasn't cancer as inflammation can cause high CEA and that wasn't a drastically high number. We weren't that lucky of course, and he has stayed in normal ranges until recently so I completely get being upset. I read somewhere that weird CEA increases are nothing ~40% of the time, so I feel like it's Schrödinger's cat. Definitely talk to your doctor, I've freaked out over blood results before that came back "high" only to be told by the Onc that it isn't something to worry about until X level. Sending good vibes to you!



It has been difficult to navigate how to just accept the wonky numbers. I have had enough bad things happen health wise, all in a row within my family, that I have developed a good ole case of OCD and am always waiting for the other shoe to drop. :roll: I’m not sure the test even has much use in my specific case. Thank you for your reply, It is nice to be able to vent somewhere.
Ksue
Dx: 6/2017 stage 3 CC
Sigmoid, 2 nodes
CEA at dx: 6.1
Sigmoid Colectomy/folfox (last chemo (1/31/18)
CEA 4/2018: 2.4
CEA 7/2018: 3.7
Colonoscopy 8/18 clean
PET scan 8/20/18 NED
CEA 11/2018: 3.8
CEA 2/2019: 3.2
CT NED 6/18/19 / CEA : 3.4
CEA 10/21/19: 3.2
CEA 3/9/20: 3.8
CT NED /CEA 6/17/20: 3.8
CEA 11/4/20 4.6 <——— whyyyy? (will retest in a few weeks)
CT NED 12/1/20 CEA: 3.5
CEA 5/21 4.2
CEA 10/21 3.4
colonoscopy 10/21 10mm polyp
CEA 4/22 3.7
CEA 7/22 3.8
CEA 12/22 4
CEA 1/22 3.2 and NED 5yr scan

Koreysue
Posts: 258
Joined: Mon Apr 30, 2018 2:36 pm

Re: CEA is a yo-yo

Postby Koreysue » Wed May 26, 2021 11:14 pm

Green Tea wrote:
GrouseMan wrote:...There is a lot of information about CEA tests on this forum. I believe its been summarized a couple of times.
Good Luck
GrouseMan

Yes, that's true ... many, many posts on CEA since 2005:


I often go back and read these. It’s CRAZY how much stress is generated by this test, and this list of posts is proof. wow. :shock:
Dx: 6/2017 stage 3 CC
Sigmoid, 2 nodes
CEA at dx: 6.1
Sigmoid Colectomy/folfox (last chemo (1/31/18)
CEA 4/2018: 2.4
CEA 7/2018: 3.7
Colonoscopy 8/18 clean
PET scan 8/20/18 NED
CEA 11/2018: 3.8
CEA 2/2019: 3.2
CT NED 6/18/19 / CEA : 3.4
CEA 10/21/19: 3.2
CEA 3/9/20: 3.8
CT NED /CEA 6/17/20: 3.8
CEA 11/4/20 4.6 <——— whyyyy? (will retest in a few weeks)
CT NED 12/1/20 CEA: 3.5
CEA 5/21 4.2
CEA 10/21 3.4
colonoscopy 10/21 10mm polyp
CEA 4/22 3.7
CEA 7/22 3.8
CEA 12/22 4
CEA 1/22 3.2 and NED 5yr scan

Koreysue
Posts: 258
Joined: Mon Apr 30, 2018 2:36 pm

Re: CEA is a yo-yo

Postby Koreysue » Wed May 26, 2021 11:16 pm

GrouseMan wrote:All the CEA results I see in your signature fall within what is considered the normal range. I would not be concerned with it until it starts climbing above 5 or more. It doesn't appear to be a good marker for your cancer. These measurements are causing you undue stress for no good reason. Have a frank talk with your Oncologist about your fears. Someone off the streets without any history of colon cancer is likely to show the same results bouncing around like that. For some people with cancer a CEA measurement is not useful at all. My wife's test it started out high (~ 125 if I remember correctly) went into the normal range for a while bouncing around then gradually came up indicating something before the CT scans really could in her case. It was a good marker for her. There is a lot of information about CEA tests on this forum. I believe its been summarized a couple of times.

Good Luck
GrouseMan


I often refer to these posts listed to reason out the matter. Thanks for your reply GrouseMan
Dx: 6/2017 stage 3 CC
Sigmoid, 2 nodes
CEA at dx: 6.1
Sigmoid Colectomy/folfox (last chemo (1/31/18)
CEA 4/2018: 2.4
CEA 7/2018: 3.7
Colonoscopy 8/18 clean
PET scan 8/20/18 NED
CEA 11/2018: 3.8
CEA 2/2019: 3.2
CT NED 6/18/19 / CEA : 3.4
CEA 10/21/19: 3.2
CEA 3/9/20: 3.8
CT NED /CEA 6/17/20: 3.8
CEA 11/4/20 4.6 <——— whyyyy? (will retest in a few weeks)
CT NED 12/1/20 CEA: 3.5
CEA 5/21 4.2
CEA 10/21 3.4
colonoscopy 10/21 10mm polyp
CEA 4/22 3.7
CEA 7/22 3.8
CEA 12/22 4
CEA 1/22 3.2 and NED 5yr scan


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