Help! Post-OP CEA levels same as Pre-OP (5.6) should I be worried??

Please feel free to read, share your thoughts, your stories and connect with others!
Mris_90
Posts: 9
Joined: Sat Jan 12, 2019 3:04 am

Help! Post-OP CEA levels same as Pre-OP (5.6) should I be worried??

Postby Mris_90 » Sat Jan 12, 2019 3:18 am

Hello,

This is about my mother. Some background:

She was diagnosed with colon cancer in July 2018. She was actually scheduled to have a preventive surgery in 2017 due to the massive amount of polyps she had (+all my aunts/ucnles had coloncancer), but the doctor kept her waiting for 1.5 years. So one of them grew into a tumor.
She had surgery in august 2018, her CEA level apparently was 5.6 back then, when the tumor was still there. They told us her lymph nodes were fine (so they expected)
But after surgery we had to go to the oncologist earlier than planned and he told us she was stage IIIa (3a), with a tumor thatw as 2cm, non-agressive, and 2/18 lymph nodes affected. Chance of recurrence was 30% and he suggested chemotherapy.
Mom got 4 rounds of CAPOX but because the side-effects were severe (massive nerve damage during round 2, her legs and hands refused to work) they gave round 3/4 with 75% strength instead of the whole 100%. Also said that 4 rounds had the same effect as 8.
During round 4 she also got ill, ended up in the hospital with a flu infection, and after she as recovered from thta she got a cold.
Now, 2-3 weeks after ending her chemo the oncologist told her to get her bloodtests done, and apparently she had a CEA of 5.6 again.
She also had a CT-scan of her lungs, and ultrasound scan of her liver, pancreas,kidneys, cervix etc this week, which all seemed clear (NED).

We had our firts result yesterday and the oncologist told us about the elevated CEA and wants my mom to do another bloodtest in 3 weeks, and have a coloscopy again. I'm worried. I asked him if it meant anything because I read the normal CEA levels should be between 1-4. He said he had patients that had a normal level of 7 or even 10, and that 5.6 might be normal for my mother. My mom did used to smoke for 50 years, she quit 1.5 year ago. She also has COPD, and possibly an inflammation in one of the muscles of her left arm. Could that cause a CEA of 5.6?
Are there people here with higher levels CEA than normal, who did not have a recurrence or mets??

now we have to wait 4 weeks again. The oncologist said that if it 4 weeks it'd be 5.6 (or lower) again he'd resume normal teSting intervals of 3 months..

I'm so scared, I've been anxious (have panic attacks a lot) since july, also because in the same time 2 of my aunts also got diagnosed with cancer (stage 4 lung cancer, and stage 4 cervix cancer) and both of them died real quick. I don't want to lose my mom, she'sm my best friend :( I really hoped the first results would be fine, that her bloodwork would be okay, and it'd give me a bit of confidence. :(

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

Re: Help! Post-OP CEA levels same as Pre-OP (5.6) should I be worried??

Postby Punky44 » Sun Jan 13, 2019 2:18 am

I’m sorry you are going through this wait and worry—to me, it’s one of the hardest aspects of this journey (from a caregiver’s perspective.)

Regarding your question, did her CEA ever come down after surgery? Like go between 1-4? Or has it perhaps always remained in the 5’s?

Smoking and inflammation can account for a higher CEA.

And if your mom’s never moved after surgery, to me it sounds like perhaps her CEA was never a good indicator of anything to begin with (some people’s aren’t.)

Praying for good results at your next tests!
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.

Mris_90
Posts: 9
Joined: Sat Jan 12, 2019 3:04 am

Re: Help! Post-OP CEA levels same as Pre-OP (5.6) should I be worried??

Postby Mris_90 » Sun Jan 13, 2019 3:44 am

Punky44 wrote:I’m sorry you are going through this wait and worry—to me, it’s one of the hardest aspects of this journey (from a caregiver’s perspective.)

Regarding your question, did her CEA ever come down after surgery? Like go between 1-4? Or has it perhaps always remained in the 5’s?

Smoking and inflammation can account for a higher CEA.

And if your mom’s never moved after surgery, to me it sounds like perhaps her CEA was never a good indicator of anything to begin with (some people’s aren’t.)

Praying for good results at your next tests!


I don't know. All the onc said that it was 5.6 pre-operation and now 5.6 again post-op. I don't know whether they measured it during chemo. Doubt they measured it before she got a tumor. I don't think measuring CEA is standard here.
Had nightmares last night and 2 anxiety attacks. Just hope everything's fine in Feb.

del
Posts: 119
Joined: Thu Mar 03, 2016 11:21 pm
Location: Sydney, Australia

Re: Help! Post-OP CEA levels same as Pre-OP (5.6) should I be worried??

Postby del » Sun Jan 13, 2019 7:06 am

Sorry to hear about your mother. It sounds like your family has had a very rough time fighting multiple cancer battles.

You mentioned your mother has a massive amount of polyps. Have they all been removed or were there too many of them? I ask because I think that the presence of polyps can elevate CEA levels, even if the polyps are benign. For example, here's a quote from a pathology lab:

CEA levels cannot distinguish locally invasive premalignant colonic polyps from benign polyps.
https://www.exeterlaboratory.com/test/c ... tigen-cea/


Might be worth asking the oncologist about this.
Male, 33 @ dx, stage 1 RC (T1N0M0 mod. diff. 0/29 LNs)
2016-02 - Cancerous polyp removed during colonscopy, 0.5 mm margin
2016-03 - ULAR & TME surgery, temp ileostomy
2016-04 - DVT, pulmonary embolism
2016-11 - Ileostomy reversal
2018-10 - Another DVT & PE
2021 - 5 years of clean scopes/scans/bloods

Mris_90
Posts: 9
Joined: Sat Jan 12, 2019 3:04 am

Re: Help! Post-OP CEA levels same as Pre-OP (5.6) should I be worried??

Postby Mris_90 » Sun Jan 13, 2019 8:51 am

del wrote:Sorry to hear about your mother. It sounds like your family has had a very rough time fighting multiple cancer battles.

You mentioned your mother has a massive amount of polyps. Have they all been removed or were there too many of them? I ask because I think that the presence of polyps can elevate CEA levels, even if the polyps are benign. For example, here's a quote from a pathology lab:

CEA levels cannot distinguish locally invasive premalignant colonic polyps from benign polyps.
https://www.exeterlaboratory.com/test/c ... tigen-cea/


Might be worth asking the oncologist about this.


She has a lot of polyps normally. At her last coloscopy she had a lot of big ones they couldn't remove. They'd do that surgically to prevent her getting cancer but that took too long. Then she had another colonoscopy and after that the surgery but they couldn't tell if they had gotten rid of everything since they only focused on the part where the tumor was.

Mris_90
Posts: 9
Joined: Sat Jan 12, 2019 3:04 am

Re: Help! Post-OP CEA levels same as Pre-OP (5.6) should I be worried??

Postby Mris_90 » Tue Jan 15, 2019 11:03 am

I double checked. CEA wasn't measured during chemo. Pre-op it was 6. 5.8 now post-op. Mom did have the flu while getting her bloodwork done and the nurse oncologist did tell us one of her liver values hadn't restored yet. It was too high. Said it could be because of the chemo. Ultrasound also noted that mom had a fatty liver. And we think she has a inflammation in her arm, but she's been struggling with that for years on and off. She's getting the arm checked this week. Hoping for better news in Feb.

Mris_90
Posts: 9
Joined: Sat Jan 12, 2019 3:04 am

Re: Help! Post-OP CEA levels same as Pre-OP (5.6) should I be worried??

Postby Mris_90 » Sat Jan 19, 2019 10:57 am

Wish some more people could tell me if they experienced the same and CEA went down/everything was fine afterwards.

del
Posts: 119
Joined: Thu Mar 03, 2016 11:21 pm
Location: Sydney, Australia

Re: Help! Post-OP CEA levels same as Pre-OP (5.6) should I be worried??

Postby del » Sun Jan 20, 2019 8:00 pm

CEA causes a lot of anxiety and there are frequently people posting about their CEA rises on this forum. It sounds like your mother's has dropped slightly from 6.0 pre-op to 5.6 post-op, is that correct? If so, I would take that as a good thing as it's heading in the right direction. But you should be looking at trends over time rather than just one or two measurements. It naturally fluctuates quite a bit - supposedly you can have two CEA measurements taken on the same day and they can be different.

Also keep in mind that there are a lot of things other than cancer that can bump up your CEA. I've had mine jump a bit when I had the flu. You mentioned that your mother has COPD, and that can apparently elevate CEA levels:
https://radiopaedia.org/articles/carcin ... ic-antigen
Male, 33 @ dx, stage 1 RC (T1N0M0 mod. diff. 0/29 LNs)
2016-02 - Cancerous polyp removed during colonscopy, 0.5 mm margin
2016-03 - ULAR & TME surgery, temp ileostomy
2016-04 - DVT, pulmonary embolism
2016-11 - Ileostomy reversal
2018-10 - Another DVT & PE
2021 - 5 years of clean scopes/scans/bloods

Mris_90
Posts: 9
Joined: Sat Jan 12, 2019 3:04 am

Re: Help! Post-OP CEA levels same as Pre-OP (5.6) should I be worried??

Postby Mris_90 » Wed Feb 06, 2019 7:45 am

Hello.
Aminor update,
Our oncologist called today. He said he re-measured her former CEA level with a new method, and found it to be 4.5 (was 5.8 with old method)
She got her bloodwork done 2 weeks ago (she had the flu though) and with the new method I believe, it measured 5.3. So a slight rise.
I asked him if it meant it could be mets, or a recurrence. He said he wasn't worried, that her previous scans were fine, that he had patients with CEA levels of 10 that were healthy and all.
She has to get her bloodwork done again in 3 weeks and she gets a new colonoscopy next week. I asked him what if it rose again, then he said he'd do a CT-Scan of her stomach. Apparently they don't do PET-scans here? Or in this hospital at least.

Not quite what I had hoped (had hoped it'd be stable or down) but I hope that for now it's no reason for alarm yet..

Mris_90
Posts: 9
Joined: Sat Jan 12, 2019 3:04 am

Re: Help! Post-OP CEA levels same as Pre-OP (5.6) should I be worried??

Postby Mris_90 » Fri Feb 15, 2019 12:39 pm

Well. little update. Both mom and I had our coloscopies. Mom had one small polyp (4 mm) but according to the doctor it was benign, for the rest everything looked fine.
I thought Ih hd polyps, I had none. Turns out I have Crohn's disease (?!) did NOT see that coming.. Not happy with it either :( the side-effects of the medication scare me, and so does the disease..

Mris_90
Posts: 9
Joined: Sat Jan 12, 2019 3:04 am

Re: Help! Post-OP CEA levels same as Pre-OP (5.6) should I be worried??

Postby Mris_90 » Fri Mar 08, 2019 4:41 pm

Mom's CEA level dropped to 4.5, the oncologist said that was great news. No more monthly CEA check-ups, we;re going to the regular 3 month intervals now.

stu
Posts: 1613
Joined: Sat Aug 17, 2013 5:46 pm

Re: Help! Post-OP CEA levels same as Pre-OP (5.6) should I be worried??

Postby stu » Sat Mar 09, 2019 6:19 pm

Hi ,
That’s great news . All heading in a good direction

Sorry to hear about your own diagnosis . Hope you are getting on ok with treatment .

Stu
supporter to my mum who lives a great life despite a difficult diagnosis
stage4 2009 significant spread to liver
2010 colon /liver resection
chemo following recurrence
73% of liver removed
enjoying life treatment free
2016 lung resection
Oct 2017 nice clear scan . Two lung nodules disappeared
Oct 2018. Another clear scan .


Return to “Colon Talk - Colon cancer (colorectal cancer) support forum”



Who is online

Users browsing this forum: No registered users and 42 guests