Baseline CEA correlation with metastasis and survival??

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Punky44
Posts: 129
Joined: Mon Oct 01, 2018 4:29 pm

Baseline CEA correlation with metastasis and survival??

Postby Punky44 » Wed Oct 03, 2018 2:09 pm

I am losing it—my mom’s CEA came back at 17. I quickly Googled this and got countless studies showing high numbers, particularly over 10, likely mean stage IV and likely mean recurrence and low survival. There is a 2017 study that contradicts this and says it is really just a baseline and its post-op trend is more indicative of success but that was just one study among many that say the opposite.

I’m looking through your signatures and I could only find one person with a number higher than my mom’s—all of yours seem much lower.

I don’t want to give myself false hope but is there anyone out there that had a high CEA and wasn’t stage IV? And has a success story?

I am just broken right now.
Caregiver to my amazing mom (68)
10/1/18 DX with rectal cancer; CEA 17
MRI/CT/PET puts staging at T3N2M0
Trying total neoadjuvant therapy—chemo first, then short course radiation, then surgery
11/5/18 started Folfox—3 down, 5 to go!

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

hiker
Posts: 89
Joined: Thu Aug 09, 2018 10:15 am

Re: Baseline CEA correlation with metastasis and survival??

Postby hiker » Wed Oct 03, 2018 2:38 pm

If I were you, I'd find something to occupy my time to get my mind off this for a while. There is not one thing you're gonna learn by searching the internet about your mom's staging or her likelihood of survival - you just don't have enough information from the doctors yet.

And even after you do learn her stage, that will provide you no information about her chance of survival. She's an individual and cancer and its treatment are different for everyone.

I've heard of plenty stage iv folks with initial CEA numbers in the hundreds and some in the thousands that got to NED status.

If the information you receive from her doctors does not include a plan to get your mom to NED, the best thing you can do is get a second, third, or fourth opinion from a major cancer center.

hiker
Colonoscopy 2/17, 5cm tumor descending
Diagnosed stage iv, liver mets 3/17
Colon resection 3/17
Told surgery not an option, get my affairs in order
Meet w/MSK team 5/01/17
Folfox(3rds) 5/17-6/17
Liver resection/implant HAI pump 7/17
HAI pump chemo(5rds) 8/17-2/18
Folfiri+Vectibix(11rds) 8/17-2/18
Spot on chest CT 10/17
Lung biopsy (that was fun) 11/17
Nocardia bacterial infection w/spread to brain (this is serious) 11/17
IV antibiotics 12/17-2/18
Oral antibiotics 3/18-12/18
Clear of cancer since surgery

stu
Posts: 901
Joined: Sat Aug 17, 2013 5:46 pm

Re: Baseline CEA correlation with metastasis and survival??

Postby stu » Wed Oct 03, 2018 2:53 pm

I would place no weight on that at all . My mum was stage 4 , asymptomatic . Great big liver mets with a CEA of 7.4 .
Her tumours just don’t give out much protein as far as I understand it .
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 .

Cmac1275
Posts: 52
Joined: Mon Aug 06, 2018 4:21 pm

Re: Baseline CEA correlation with metastasis and survival??

Postby Cmac1275 » Wed Oct 03, 2018 4:17 pm

Agreed with above. My onc and I agreed we'll keep testing for it. But we're not going to use it as an entirely reliable marker. In my case, I had my CEA go all the way down from 60 to 2.1 after chemo and liver resection this year. But, about a month ago, they found some new spots in my liver. CEA has remained steady. Even after yesterday's labs, it's holding at 3.6. And that's with no chemo or treatment in almost 5 months. So we're looking at it, but not fretting about it.

I know it's easier to say it when you are on the lower end of the scale. But I honestly would take the same approach if I was on the opposite end.
42 yr, male, husband and father of 3
DX Stage IV Colon Cancer Jan 2018
Multiple liver mets
KRAS G13D / MSS

Jan 2018 Partial colon resection
Mar 2018 FOLFOX + Avastin | CEA 60.1
July 2018 Partial liver resection | CEA 4.7
Sep 2018 Recurrence in liver | CEA 2.9
Oct 2018 FOLFOX + Avastin
Nov 2018 Stopping FOLFOX. New mets | CEA 4.3
Dec 2018 Beginning AbbVie ABT-165 Trial

stu
Posts: 901
Joined: Sat Aug 17, 2013 5:46 pm

Re: Baseline CEA correlation with metastasis and survival??

Postby stu » Wed Oct 03, 2018 4:28 pm

Just wondered if your reading their CEA numbers post surgery . Quite a lot of people have a higher CEA at diagnosis.
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 .

Punky44
Posts: 129
Joined: Mon Oct 01, 2018 4:29 pm

Re: Baseline CEA correlation with metastasis and survival??

Postby Punky44 » Wed Oct 03, 2018 4:44 pm

Cmac, did you have a preoperative CEA or was your first one the post op at 60?

Stu, maybe? I tried to read the top of signatures at the start of diagnosis.
Caregiver to my amazing mom (68)
10/1/18 DX with rectal cancer; CEA 17
MRI/CT/PET puts staging at T3N2M0
Trying total neoadjuvant therapy—chemo first, then short course radiation, then surgery
11/5/18 started Folfox—3 down, 5 to go!

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

User avatar
Jack&KatiesMommy
Posts: 521
Joined: Wed Dec 21, 2011 1:08 pm
Location: Columbus, OH

Re: Baseline CEA correlation with metastasis and survival??

Postby Jack&KatiesMommy » Wed Oct 03, 2018 10:45 pm

Mine was 2,643 at diagnosis 7 1/2 years ago. It is 1.0 today.
Cynthia
Mommy to Jack (8) now (15) and Katie (4) now (11)
(My Most Precious Things)
Dx 8/11 Stage IV CRC (liver mets) CEA 2,600+
9/11 Folfiri 2/12: Failed Liver Resection
5/12 HAI pump/removed primary
4/13 Liver Resection!
8/13; 10/13; 12/13; 3/14; 8/14; 11/14; 2/15; 7/15; 12/15 RFA lungs
5/17: Upper Left Lobe of lung resected.
02/18: 3 new mets lymph nodes in hilar/lung:
05/18: Started Keytruda (MSS but moderate mutation burden): CEA: 66.4, 39.2, 23.8, 13, 3.5 NOW 1.8
08/18 Clear CT scan

plastikos
Posts: 309
Joined: Wed Jan 14, 2015 6:09 am

Re: Baseline CEA correlation with metastasis and survival??

Postby plastikos » Thu Oct 04, 2018 10:44 am

My CEA was normal at diagnosis and I was St. IV. Although CEA is a useful marker and is usually monitored for recurrence it is not the be all and end all for CRC. That’s why oncologists still order the scans. Staging is important and obviously everyone would want to be Stage I but what matters more is how you handle it by taking the right steps at whatever stage you’re at. Lots of St. IV survivors here. Some “cured” and some still fighting. Good luck.
St. IV Colon CA @ 37, male, Kras wild, MSI-high (2014)
11/2014 Right Hemicolectomy + Liver Resection
12/2014 - 6/2015 FOLFOX + Cetuximab
10/2015 - Recurrence liver
Liver resection 10/2015
FOLFIRI 11/2015 - 5/2016
Recurrence liver, nodes 11/2016
Pembrolizumab started 12/2016 -> pseudoprogression(?) -> biliary obstruction -> biliary stenting
Chemo 4x: most mets inactive and smaller on PET-CT
March 2017 - Back on Pembrolizumab again
Sept 2017 - SIRT - > NED

Jannine
Posts: 90
Joined: Wed Jun 20, 2018 7:46 am

Re: Baseline CEA correlation with metastasis and survival??

Postby Jannine » Sat Oct 06, 2018 10:43 am

My CEA was 11.2 and I was diagnosed stage III with no detected lymph node involvement and no mets. As others have said, you don't have enough information yet; see what specifics you learn and go from there. CEA is just one indicator and isn't ever used to make decisions on its own, because it is so variable and unpredictable.
DX: sigmoid colon cancer 5/2018. 48 F
laparoscopic sigmoid resection (24 cm removed); no stoma.
7.5cm adenocarcinoma -- mod. diff.
1 noncontiguous tumor deposit removed; 0/31 lymph nodes
T3 pN1c M0
5/18 before surgery, CEA 11.2
6/18 began FOLFOX
7/18: CEA 1.9; added neulasta post infusion
9/18: CEA 2.8
10/18: 25% chemo reduction
11/18: CEA 1.8

weisssoccermom
Posts: 5883
Joined: Thu May 10, 2007 2:32 pm
Location: Pacific NW

Re: Baseline CEA correlation with metastasis and survival??

Postby weisssoccermom » Sat Oct 06, 2018 11:26 am

STOP!!! Based on your signature....your mom's CT results came back and everything was CLEAR. Hey, that's a GOOD sign. While no test is 100% foolproof....that CLEAR result on the CT scan means an M0....or, at least based on radiological studies...it isn't a stage IV. Read what I said....based on those studies...which are studies to determine mets....there aren't any! Again, there could be microscopic little cancer cells out there that are too small for the CT to pick up but PLEASE take a breath and understand that your mom's CLEAR CT scan is GOOD NEWS!!!!!

People with stage II/III have higher than normal CEA levels without having mets AND your mom's level of 17 while higher than normal certainly isn't in the hundreds or thousands!
Dx 6/22/2006 IIA rectal cancer
6 wks rad/Xeloda -finished 9/06
1st attempt transanal excision 11/06
11/17/06 XELOX 1 cycle
5 months Xeloda only Dec '06 - April '07
10+ blood clots, 1 DVT 1/07
transanal excision 4/20/07 path-NO CANCER CELLS!
NED now and forever!
Perform random acts of kindness

Punky44
Posts: 129
Joined: Mon Oct 01, 2018 4:29 pm

Re: Baseline CEA correlation with metastasis and survival??

Postby Punky44 » Sat Oct 06, 2018 2:21 pm

Thank you guys again so much. I am really trying to breathe. Your support and advice is helping me a lot.
Caregiver to my amazing mom (68)
10/1/18 DX with rectal cancer; CEA 17
MRI/CT/PET puts staging at T3N2M0
Trying total neoadjuvant therapy—chemo first, then short course radiation, then surgery
11/5/18 started Folfox—3 down, 5 to go!

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

Lee
Posts: 5741
Joined: Sun Apr 16, 2006 4:09 pm

Re: Baseline CEA correlation with metastasis and survival??

Postby Lee » Sat Oct 06, 2018 2:28 pm

Punky44 wrote:I am losing it—my mom’s CEA came back at 17. I quickly Googled this and got countless studies showing high numbers, particularly over 10, likely mean stage IV and likely mean recurrence and low survival. There is a 2017 study that contradicts this and says it is really just a baseline and its post-op trend is more indicative of success but that was just one study among many that say the opposite.
.


When I was diagnosed, my CEA was something like 26. That was 14+ years ago. 17 sounds pretty good to me.

Try not to worry,

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 10 years and counting!

User avatar
dianetavegia
Posts: 2710
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Facebook Username: Diane Weldy Tavegia
Location: Villa Rica, Georgia
Contact:

Re: Baseline CEA correlation with metastasis and survival??

Postby dianetavegia » Mon Oct 08, 2018 6:26 pm

Because of steady weight gain, I begged my onc to check my thyroid. My CEA was 5.8 and had only been over 4 when I had pneumonia or liver met but my scans were clear. While waiting for blood work, I found many articles on HYPOthyroid causing elevated CEA. I recall one account of a woman whose scans were clear but her CEA had jumped to 149. Her CEA showed hypothyroid, so they put her on meds, regulated her TSH (took 9 months) and her CEA dropped back to normal. Her onc had told her there had to be colon cancer lurking..... but nope!
Stage IIIB cc surgery 1/7/09. 5/17 nodes. 12 tx FOLFOX
Stage IVa 2/15/12. CEA 6.4 PET = 1.5cm liver met. HR 4/11/12 No chemo

Nine years 10 months since dx and 6 1/2 years post liver resection.
NED Oct. 2018

“O Lord my God, I cried out to You, And You healed me.” Psalms 30:2


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