Me again, my fave topic: CEA

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Koreysue
Posts: 144
Joined: Mon Apr 30, 2018 2:36 pm

Me again, my fave topic: CEA

Postby Koreysue » Mon Mar 09, 2020 9:33 pm

Hi all
I had my CEA checked after putting it off longer than I should have. It is elevated but still normal. It has been 3.8 before, had a scan but it was clear . Then last time it was down to 3.2
This drives me crazy! I’m obsessed with solving the puzzle of WHY?
Onc is not concerned, but I’ve asked for a retest in a month.
I had more alcohol than normal in Hawaii the week before my blood draw. (At home I rarely drink) I’ve gained a little weight due to a hip injury causing less activity.. Maybe that’s it...
Have any of you guys noticed any pattern to your cea fluctuations?
Tell me all the theories! I’m so curious.
Ksue
Diagnosed: June 2017 stage 3 colon cancer
Sigmoid colon, 2 nodes affected
CEA at diagnosis: 6
Sigmoid Colectomy and folfox (chemo complete January 31, 2018)
CEA 4/2018: 2.4
CEA 7/2018: 3.7
Colonoscopy 8/2018 clean
PET scan 8/20/18 clear (cea rise a mystery for now, doc said maybe all the smoke in my town from forest fires)
CEA 11/2018: 3.8
CEA 2/2019: 3.2
CT clear 6/18/2019 / CEA : 3.4
CEA 10/21/19: 3.2
CEA 3/9/20: 3.8 :| My dr. wasn’t concerned, but I asked for a retest in 1 month

beach sunrise
Posts: 22
Joined: Thu Mar 05, 2020 7:14 pm

Re: Me again, my fave topic: CEA

Postby beach sunrise » Tue Mar 10, 2020 12:31 am

I don't know much about it yet to tell you opinion at all. Been reading on this site and researching all I can. I hope to be an expert some day soon though on the topic. To me, right now its just a crazy thing and so confusing.
Dx 8/19, RC, CEA 86, clinical T3N0M0
Neoadj 5FU/rad 6 wks
Surgery Jan 2020, neg margins T4bN1a IIIC G2 MSI- 1/20 LN+
presurg cea 24/post 5.9
Adj FOLFOX6, cea 7
1st rd complete, 2nd 3/9/20
MHL1 +
PMS2+
MSH2+
MSH6+
Post surg chemo sensitivity testing at Nagourney Cancer Institute "Test failed due to neo-adj chemorad did its job. Not enough cancer cells to test." Good news cancer pretty much dead, bad news not knowing what chemo would work best for my cancer

Koreysue
Posts: 144
Joined: Mon Apr 30, 2018 2:36 pm

Re: Me again, my fave topic: CEA

Postby Koreysue » Tue Mar 10, 2020 12:40 am

beach sunrise wrote:I don't know much about it yet to tell you opinion at all. Been reading on this site and researching all I can. I hope to be an expert some day soon though on the topic. To me, right now its just a crazy thing and so confusing.


It’s a crazy topic for sure. Everyone is different. Mine was never very high even at dx, but I just obsess over it.
Diagnosed: June 2017 stage 3 colon cancer
Sigmoid colon, 2 nodes affected
CEA at diagnosis: 6
Sigmoid Colectomy and folfox (chemo complete January 31, 2018)
CEA 4/2018: 2.4
CEA 7/2018: 3.7
Colonoscopy 8/2018 clean
PET scan 8/20/18 clear (cea rise a mystery for now, doc said maybe all the smoke in my town from forest fires)
CEA 11/2018: 3.8
CEA 2/2019: 3.2
CT clear 6/18/2019 / CEA : 3.4
CEA 10/21/19: 3.2
CEA 3/9/20: 3.8 :| My dr. wasn’t concerned, but I asked for a retest in 1 month

Punky44
Posts: 436
Joined: Mon Oct 01, 2018 4:29 pm

Re: Me again, my fave topic: CEA

Postby Punky44 » Tue Mar 10, 2020 2:07 am

Fellow CEA obsesser here.

I think it’s super positive that it was that high once and then dropped. So while it climbed, it has done this before with no rising trend and you could reasonably anticipate it will drop again and that’s just your “range.”

I am obsessively losing it over my mom’s, which was 2.1, then 1.9 (yay) then 2.6 and then 2.8. Totally freaking out that it has inched up two times in a row and praying for a drop to break the pattern.

Like your onc, my mom’s onc didn’t bat an eye at this.
Caregiver to my amazing mom (68)
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
CEA 2.1; 1.9; 2.6; 2.8
6/28/19 Reversal and port out
10/22/19: CT showed new nodules
1/28/20: CT showed nodules shrinking

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

Koreysue
Posts: 144
Joined: Mon Apr 30, 2018 2:36 pm

Re: Me again, my fave topic: CEA

Postby Koreysue » Tue Mar 10, 2020 2:36 am

Punky44 wrote:Fellow CEA obsesser here.

I think it’s super positive that it was that high once and then dropped. So while it climbed, it has done this before with no rising trend and you could reasonably anticipate it will drop again and that’s just your “range.”

I am obsessively losing it over my mom’s, which was 2.1, then 1.9 (yay) then 2.6 and then 2.8. Totally freaking out that it has inched up two times in a row and praying for a drop to break the pattern.

Like your onc, my mom’s onc didn’t bat an eye at this.

Thanks Punky,
It’s just the pits that we can’t just take our doc’s word and walk out happy without over thinking it.
I’ll be hoping for a downward trend for your mom as well.
Ksue
Diagnosed: June 2017 stage 3 colon cancer
Sigmoid colon, 2 nodes affected
CEA at diagnosis: 6
Sigmoid Colectomy and folfox (chemo complete January 31, 2018)
CEA 4/2018: 2.4
CEA 7/2018: 3.7
Colonoscopy 8/2018 clean
PET scan 8/20/18 clear (cea rise a mystery for now, doc said maybe all the smoke in my town from forest fires)
CEA 11/2018: 3.8
CEA 2/2019: 3.2
CT clear 6/18/2019 / CEA : 3.4
CEA 10/21/19: 3.2
CEA 3/9/20: 3.8 :| My dr. wasn’t concerned, but I asked for a retest in 1 month

AlexandraZ
Posts: 171
Joined: Fri Aug 23, 2019 8:25 am

Re: Me again, my fave topic: CEA

Postby AlexandraZ » Tue Mar 10, 2020 4:16 am

If it's in the normal range, I wouldn't worry at ALL. Unless it was SUPER stable in a lower range and then suddenly shot up. Just like any other blood test, there is a normal RANGE, which means that anywhere within those limits is normal and not a cause for concern. Unless there was an obvious trend or a sudden significant rise I wouldn't worry at all. Many oncologists don't like tracking CEA because so many people stress and worry about it when it's not even always a reliable marker.

I know it's hard not to worry though! My boyfriend's CEA has always been SUPER high, and the lowest it ever went was 195. His is super reliable, and when it went up to 2900 while on FOLFOX, we of course had a feeling it wasn't working. Despite the increase though, his scan was stable. It might have been a sign that something was about to grow, but just to give an idea of how much it CAN fluctuate with the scan staying stable. (He is not NED though)

Best of luck to you! I hope I don't come across as mean. I WISH my boyfriend's CEA was jumping around in the single digits! But I know we all have our "normal" CEA that we compare to. And cancer is stressful AF!
Boyfriend 28yo dx February 2019, CEA 70,480
Stage 4 CRC with multiple mets to liver & lungs
KRAS, NRAS, BRAF wild type, MSS
12x FOLFIRI + Vectibix
September 2019 CEA 210, 60% reduction in size, chemo break!

Koreysue
Posts: 144
Joined: Mon Apr 30, 2018 2:36 pm

Re: Me again, my fave topic: CEA

Postby Koreysue » Tue Mar 10, 2020 11:27 am

AlexandraZ wrote:If it's in the normal range, I wouldn't worry at ALL. Unless it was SUPER stable in a lower range and then suddenly shot up. Just like any other blood test, there is a normal RANGE, which means that anywhere within those limits is normal and not a cause for concern. Unless there was an obvious trend or a sudden significant rise I wouldn't worry at all. Many oncologists don't like tracking CEA because so many people stress and worry about it when it's not even always a reliable marker.

I know it's hard not to worry though! My boyfriend's CEA has always been SUPER high, and the lowest it ever went was 195. His is super reliable, and when it went up to 2900 while on FOLFOX, we of course had a feeling it wasn't working. Despite the increase though, his scan was stable. It might have been a sign that something was about to grow, but just to give an idea of how much it CAN fluctuate with the scan staying stable. (He is not NED though)

Best of luck to you! I hope I don't come across as mean. I WISH my boyfriend's CEA was jumping around in the single digits! But I know we all have our "normal" CEA that we compare to. And cancer is stressful AF!


No I didn’t take it as mean. I’m sorry your boyfriend is in the situation he is in.
My problem (because I have ocd) is that I fixate, even though I know I shouldn’t.
I’m just curious if people who go up and down a little in their numbers have noticed a pattern as to why?
Dehydration? Alcohol before? Inflammation?
It just puzzles me.
Diagnosed: June 2017 stage 3 colon cancer
Sigmoid colon, 2 nodes affected
CEA at diagnosis: 6
Sigmoid Colectomy and folfox (chemo complete January 31, 2018)
CEA 4/2018: 2.4
CEA 7/2018: 3.7
Colonoscopy 8/2018 clean
PET scan 8/20/18 clear (cea rise a mystery for now, doc said maybe all the smoke in my town from forest fires)
CEA 11/2018: 3.8
CEA 2/2019: 3.2
CT clear 6/18/2019 / CEA : 3.4
CEA 10/21/19: 3.2
CEA 3/9/20: 3.8 :| My dr. wasn’t concerned, but I asked for a retest in 1 month

beach sunrise
Posts: 22
Joined: Thu Mar 05, 2020 7:14 pm

Re: Me again, my fave topic: CEA

Postby beach sunrise » Tue Mar 10, 2020 12:35 pm

I obsess too until I find logic/answers to the why.
Dx 8/19, RC, CEA 86, clinical T3N0M0
Neoadj 5FU/rad 6 wks
Surgery Jan 2020, neg margins T4bN1a IIIC G2 MSI- 1/20 LN+
presurg cea 24/post 5.9
Adj FOLFOX6, cea 7
1st rd complete, 2nd 3/9/20
MHL1 +
PMS2+
MSH2+
MSH6+
Post surg chemo sensitivity testing at Nagourney Cancer Institute "Test failed due to neo-adj chemorad did its job. Not enough cancer cells to test." Good news cancer pretty much dead, bad news not knowing what chemo would work best for my cancer

stu
Posts: 1299
Joined: Sat Aug 17, 2013 5:46 pm

Re: Me again, my fave topic: CEA

Postby stu » Tue Mar 10, 2020 2:42 pm

I have been watching my mum’s CEA for ten years and they always jump around . I notice some people always have the same reading . Not so with my mum . Goes up and down a point or two . Strangely enough her CEA was low at diagnosis but sits on the high side of normal without disease .
If I am reading right you are only fluctuating around one point . Honestly don’t think that is a worry .
CEA causes such anxiety, but we have learnt to rely on the scans .
Take care ,
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 .

Koreysue
Posts: 144
Joined: Mon Apr 30, 2018 2:36 pm

Re: Me again, my fave topic: CEA

Postby Koreysue » Tue Mar 10, 2020 7:37 pm

beach sunrise wrote:I obsess too until I find logic/answers to the why.


Maybe someday we can learn to put it out of our minds.
Thanks for letting me know I’m not alone in obsessing.
Ksue
Diagnosed: June 2017 stage 3 colon cancer
Sigmoid colon, 2 nodes affected
CEA at diagnosis: 6
Sigmoid Colectomy and folfox (chemo complete January 31, 2018)
CEA 4/2018: 2.4
CEA 7/2018: 3.7
Colonoscopy 8/2018 clean
PET scan 8/20/18 clear (cea rise a mystery for now, doc said maybe all the smoke in my town from forest fires)
CEA 11/2018: 3.8
CEA 2/2019: 3.2
CT clear 6/18/2019 / CEA : 3.4
CEA 10/21/19: 3.2
CEA 3/9/20: 3.8 :| My dr. wasn’t concerned, but I asked for a retest in 1 month

Koreysue
Posts: 144
Joined: Mon Apr 30, 2018 2:36 pm

Re: Me again, my fave topic: CEA

Postby Koreysue » Tue Mar 10, 2020 7:39 pm

stu wrote:I have been watching my mum’s CEA for ten years and they always jump around . I notice some people always have the same reading . Not so with my mum . Goes up and down a point or two . Strangely enough her CEA was low at diagnosis but sits on the high side of normal without disease .
If I am reading right you are only fluctuating around one point . Honestly don’t think that is a worry .
CEA causes such anxiety, but we have learnt to rely on the scans .
Take care ,
Stu


I sometimes wish I could just tell my doc I want to do every
6 mos for cea instead of 3 months, but I’d probably worry about that choice, too
Ugh!
You are right, it is a measly rise.
Thanks for the input,
Ksue
Diagnosed: June 2017 stage 3 colon cancer
Sigmoid colon, 2 nodes affected
CEA at diagnosis: 6
Sigmoid Colectomy and folfox (chemo complete January 31, 2018)
CEA 4/2018: 2.4
CEA 7/2018: 3.7
Colonoscopy 8/2018 clean
PET scan 8/20/18 clear (cea rise a mystery for now, doc said maybe all the smoke in my town from forest fires)
CEA 11/2018: 3.8
CEA 2/2019: 3.2
CT clear 6/18/2019 / CEA : 3.4
CEA 10/21/19: 3.2
CEA 3/9/20: 3.8 :| My dr. wasn’t concerned, but I asked for a retest in 1 month

User avatar
ginabeewell
Posts: 399
Joined: Wed Oct 24, 2018 10:30 am

Re: Me again, my fave topic: CEA

Postby ginabeewell » Tue Mar 10, 2020 11:42 pm

Koreysue wrote:
I sometimes wish I could just tell my doc I want to do every
6 mos for cea instead of 3 months, but I’d probably worry about that choice, too
Ugh!
You are right, it is a measly rise.
Thanks for the input,
Ksue


I stress about mine too. I went from 0.8 to 1.4 and freaked out for weeks stressing about it. I was almost afraid to ask for my next results, but they came back at 1.3 and I breathed again.

At the time I mentioned to the doctor I was close to asking her to just not push my CEA results into the portal. “Don’t tell me what they are unless / until you think there’s an issue.” If your doctor was willing, might be an ask you could make?
45 year old mom of twins (8) and lucky stepmom of 14 and 16 year olds
9/17/18 DX stage 4 CRC w inoperable liver mets
9/20/18 CEA 931
10/1/18 FOLFOX + Vectibix planned 12 rounds
12/12/18 CT scan showed typhlitis (7 days in hospital) but largest met down to 5 cm. Chemo holiday.
12/26/18 CEA 4.6
1/14/18 Resume chemo (#6-8)
3/27/19 HAI pump placement / colon resection
4/8/19 Resume chemo (#9-19) FOLFOX (no OX) + Vectibix
5/20/19 CEA 1.3
7/19/19 1st liver resection
10/16/19 2nd liver resection

Claudine
Posts: 298
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: Me again, my fave topic: CEA

Postby Claudine » Wed Mar 11, 2020 10:25 am

That CEA, I can't tell if it's a blessing or a curse! It's a very good indicator for DH. Last time it was measured (mid January), his was up to 10.2 (he'd been off chemo for a while to prepare for surgery). His next test is tomorrow, the first one post-surgery and after 2 months without chemo... I know I won't be sleeping much tonight. But, if it is elevated, it will be good to know. Still, ugh.
Wife of Dx 04/18 (51 yo). MSS, KRAS G12A
No primary (involuted?)
Lytic tumor L4 vertebrae, EBRT radiation 04/18, SBRT 02/19
Resection small intestine 05/18 (no cancer found - Crohn's)
Failed adjuvant Xelox
Folfiri + Avastin since 03/19
6.7 cm left adrenal mass 03/19, 3.67 cm 12/19, successful resection 02/20
CEA since 03/19: high 58, low 3.2, now 7.6
Scan 03/19: Multiple small lung nodules up to 5mm
Scan 12/19: 2 calcified granulomas, one 1mm stable nodule

zx10guy
Posts: 219
Joined: Mon Jan 07, 2013 12:54 pm

Re: Me again, my fave topic: CEA

Postby zx10guy » Wed Mar 11, 2020 10:47 am

CEA is a miserable test and something should be developed to replace it. Maybe the work being done with liquid biopsies will be the answer.

If you do a search here, you'll find my posts on CEA as it relates to me. I would take your numbers any day as I've been unable to move on for 4 years because my CEA has been way abnormal yet nothing has been found with any diagnostic test I've tried. You name it: MRI, PET/CT, CT w/contrast, upper GI endoscopy, colonoscopy, small bowel capsule endoscopy, everything. Yet nothing has been found. The start of my roller coaster was a spike from 5.2/5.4 to 9.7 (can't remember the exact tenths) back in 2016. Since then it's been from a low of 11 to a high of 52.4. My last reading in December was 44.4. Yet nothing was found. My doc doesn't know what is going on and has pretty much thrown his hands up in the air. He said if it's cancer related it should have shown up on the scans by now or I would be symptomatic.

By all accounts I should be on once a year checkups since my first diagnosis of colon cancer stage 3b in Dec 2012 and appendix cancer stage 0 in June 2016. My doc has seen enough and has me off of scans for my next 6 months checkup in June. I guess he feels I've been exposed to enough radiation with all the scans I've had over the years. Just want to do blood work which involves this blasted CEA test.

Anyways, my doc has said all along that CEA is only a tool and he does not initiate any treatment on CEA tests alone. The scans are the gold marker. If your scans are clear, I wouldn't worry about things. Also, CEA can vary even within a single day. A CEA done in the morning can be different than a CEA test done in the afternoon on the same person.

jts
Posts: 32
Joined: Sat Aug 24, 2019 3:07 pm

Re: Me again, my fave topic: CEA

Postby jts » Wed Mar 11, 2020 11:48 am

I am totally feeling the same. I am on round 5 of FOLFOX for adjuvant chemo. Since the surgery the doctors like to say that I am cancer-free. Clear margins. Clean CT scan. But every blood test since the surgery has my CEA going up. Now it’s in the high 3’s. I know these are rookie numbers for a lot of the folks here. But if I’m cancer-free, AND on chemo, how are my CEA levels above the warning line for a non-smoker? My CEA at least went down during neoadjuvant chemo. It seems like a good indicator for me. I know there’s evidence that CEA can spike during FOLFOX for a small percentage of patients, and it’s not necessarily bad. But monotonic increases for 3 months isn’t a spike, it’s a trend. Nothing to do but wait for the next scan.
Male 42 — stage IIIc
DX starting 08/2019
6 cm long tumor, 5cm above anocutaneous line
Clinical: T3 N1 M0
09-10/2019 Chemo-radiation, Capecitabine
12/2019 TME Surgery, clear margins, 7/16 nodes positive
Pathology: ypT3 ypN2b M0


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