CEA is a stupid test

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muskokamike
Posts: 226
Joined: Tue Feb 25, 2014 4:38 pm

CEA is a stupid test

Postby muskokamike » Sat Dec 17, 2016 10:21 am

My oncologist yesterday told me that CEA was a stupid test for ME. When I was dx my CEA was at it's lowest and too many of her patients like me whose CEA is not a good marker become fixated over the test. She said many things cause CEA to rise and when levels go up consistently like doubling from test to test that is when they get concerned and do further test. She has no issues with my numbers and told me to stop being so concerned about my them. "We will let you know when you have something to worry about" she said.

She knows many oncs that don't even do the test and if they do they hide within the blood work and never tell patients just to prevent unwanted anxiety. I even find myself anxious before a test and especially between the blood draw and when I see the onc.

My New Years resolution will be to not fret so much over any future 'stupid CEA test' I hope some of you do likewise also
Last edited by muskokamike on Mon Dec 19, 2016 8:08 am, edited 7 times in total.
53M Dx rc10/31/13
WTF!
CT scan, BONE scan
MRI/T3N0M0 1 suspicious node
5 wks chemo/rad
LAR open TME 2/26/14
temp ileo
0/24 nodes pCR/pathological
Mop up Folfox (8) Mar/28-Jul/4
Aug/14 clear CT scan
8/27/14 reversal
Feb/15 clear scope
July/15 clear CT scan
Feb/16 clear CT scan
Feb/17 clear CT scan
Feb/18 clear scope
Feb/18 clear CT scan
Sep/19 clear CT scan DISCHARGED!
CEA levels 1.6 dx
1.6,1.4,1.7,2.4,2.9, 2.7 2.3 2.5 2.2 2.1 2.5 2.6 2.7
2.7 Sept 19
0-4 normal
https://kicknasscancersass.blogspot.com/

Nik Colon

Re: CEA is a stupid test

Postby Nik Colon » Sat Dec 17, 2016 11:38 am

True, many of us can't rely on CEA. Mine was 4.9 at dx (stage 4). Once again only 4.9 with lung mets. What really pissed me off, CA19-9 is another of these, used to be used (still is in some countries) but no more in the US unless you pay. Imo, it should be if CEA shows nothing. It should be auto backup for us who CEA doesn't show. Grrr, why not? Money! But if they did and it showed more accurate for some of us, then just cut out the CEA! Why they can't or don't think this way, idk. But I believe CEA is cheaper, so again, money. Who gives a fuck about life if money is involved!
Sorry, just ranting

DarknessEmbraced
Posts: 3428
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Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: CEA is a stupid test

Postby DarknessEmbraced » Sat Dec 17, 2016 1:05 pm

My CEA has always been low under 1 even before my surgery. They check Ca 125 too. That was going up but the last test it was normal. I know there are many other reasons it can go up.
Diagnosed 10/28/14, age 36
Colon Resection 11/20/14, LAR (no illeo)
Stage 2a colon cancer, T3NOMO
Lymph-vascular invasion undetermined
0/22 lymph nodes
No chemo, no radiation
Clear Colonoscopy 04/29/15
NED 10/20/15
Ischemic Colitis 01/21/16
NED 11/10/16
CT Scan moved up due to high CEA 08/21/17
NED 09/25/17
NED 12/21/18
Clear colonoscopy 09/23/19
Clear 5 year scans 11/21/19- Considered cured! :)

ChiMama
Posts: 29
Joined: Wed Jul 20, 2016 8:41 pm
Location: PHX

Re: CEA is a stupid test

Postby ChiMama » Sat Dec 17, 2016 11:21 pm

CEA isn't a marker for me either. Mine was 2.8 right before surgery, and 2.7 a month after.
4/21/16 First Colonoscopy @59
DX "inflammatory changes" biopsy: high grade dysplasia
CT & PET fibroid uterus, suspicious area near sigmoid/ovary, liver cysts, lung nodule
6/17/16 Open surgery: hysterectomy, remove 12.5cm sigmoid, 29 LN
T2N0M0 Stage 1 Mod diff adenocarcinoma 5.2cm x 4.1. Clear margins & LN, Gyne benign
Lynch neg
CT 7/27/16 spiculated lung nodule, thyroid nodules, watching.
8/19/16 Scope: 3 polyps
CT 7/17 lung unchanged Scope 8/17 all clear
Mama to a rescue Chihuahua

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

Re: CEA is a stupid test

Postby zx10guy » Sun Dec 18, 2016 8:09 am

I've made a post recently about this very subject/question. To provide another data point, CEA testing so far for me is not a stupid test. My CEA was elevated prior to surgery and was run after finding the tumor in my descending colon during a colonoscopy. After surgery and chemo, it hovered around 3.11 based on the Siemens test and 4.7 for the Roche test after a high of 13.9 pre surgery on the Siemens test. During monitoring and having everything clear with my scans, my CEA spiked from a previous reading of 5.6 to 9.7. A retest was done to rule out lab error or an outlier, which came back even higher at 11. I was down to only a colonoscopy as the last diagnostic procedure to see why my CEA is elevated. That's where a polyp was found in my appendix opening. Pathology after surgery to do a right hemicolectomy, confirmed cancer but was caught early enough to have me as stage 0.

Had that polyp not been found because it was just luck that polyp poked through the appendix opening at the right time that we were looking at that area, I don't know what would have happened with the wait and see. I understand at the time the docs couldn't act on anything they couldn't see on scans. But the shear fact appendicial cancer is real bad news as it's hidden and only makes itself known when it's really advanced makes me wonder what situation I would have been had we not caught this early.

My oncologist did say before we found the polyp in the appendix that he's seen this before where an elevated CEA didn't result in cancer for some of his patients. To not worry. I'm not holding this against him or any doctor that says the same thing about CEA results or am I saying to panic with every variation. But just be smart about collecting all the facts before reacting emotionally. The interesting thing about my recent situation with the elevated CEA and the appendicial polyp found was in my gut I knew something wasn't right. Which kept me pushing to find an answer. That same gut feeling was there when I presented with bleeding that prompted the colonoscopy. I sort of knew before the tumor was found.

rp1954
Posts: 1524
Joined: Mon Jun 13, 2011 1:13 am

Re: CEA is a stupid test

Postby rp1954 » Sun Dec 18, 2016 10:23 am

CEA isn't really a stupid test. It just isn't the only test and many patients are short changed on both their blood test series and their conditioning for best sensitivity and accuracy. Markers change, and they can mean that treatment needs to adapt as well.

First, each patient (and treatment) has a noise band for their blood work. It is important to learn this range from earlier data, both for early detection and peace of mind. Conventional chemo alone tends to be very noisy, even well after treatment stops, slowly smoothing out.

Second, I've seen some advanced patients survive with low CEA for years and years, e.g. battling their CA19-9 alone. When their unmonitored CEA finally turned up way high, many times CEA's upper limit of 3 to 5, they were too late monitoring CEA and almost inherently too limited in their treatment responses. Any markers can become useful over time, I would suggest at least occasional monitoring of CEA, and several others too.

I listen to doctors very carefully. In fact, I've consulted many doctors to find and decide things. When they don't listen to me or help me implement a more comprehensive plan like blood tests or off label adjuncts, they remove themselves from the most active list. Failure to listen or help is not a payroll option.

Also we cross borders to get things or get things when we cross borders.
watchful, active researcher and caregiver for stage IVb/c CC. surgeries 4/10 sigmoid etc & 5/11 para-aortic LN cluster; 8 yrs immuno-Chemo for mCRC; now no chemo
most of 2010 Life Extension recommendations and possibilities + more, some (much) higher, peaking ~2011-12, taper to almost nothing mid 2018, mostly IV C

BUD2016
Posts: 58
Joined: Sat Sep 10, 2016 3:25 pm

Re: CEA is a stupid test

Postby BUD2016 » Sun Dec 18, 2016 1:41 pm

This is the most interesting discussion, since in our case we have not yet clearly identified any blood tests or markers to help to raise a flag that something is wrong or will go wrong in several months.

I am not going to list them all here, but my mom had 3 pages of all possible tests for the past 5 years done on 3 to 6 months basis because of her prior autoimmune condition diagnosed in 2009. Just to give you a snapshot of that - AFP, CA19-9, LDH, Albumin, INR, etc etc etc - 3 pages of small numbers over the past 5 years on 3 to 6 month basis.

In the last few years she could qualify for a Space senior tourist program based on blood tests at 71 years (we never applied for that, but this is what her doctors said :D ). Well - CEA was not tested until July 2016 and since then it has been around 3 - 3,8 before and after surgery. No major change - yet. Before that CEA was tested 3 years ago and was 2,3. We will see in 1 month.

However, scans (PET/CT) show a different story. Very different. A story, which is still very difficult to recover from after such a close monitoring of blood tests AND colonoscopies every 3 years and a surgery pathology report of T3N0.

There are markers, which I personally think are the key - inflammation markers such as CRP and ESR. Those have been off charts high with everything else running normal. It does confirm the view that cancer is driven/originated from inflammation.

So, we are going to scan every 8 weeks now going forward. The question is also which scan (CT is good enough or PET/CT or MRI or all together)....

I am also wondering about false positives of scans so close to each other and/or surgery/chemo. I guess I am trying to find an explanation and am false positive hoping...

Best wishes to all and thank you for this forum.
09/2016: Mom dx/rectal cancer
10/2016: Open surgery. T3N0/Grade 2
11/2016: PET/CT scan shows 5 liver mets in both lobes
11/2016: FOLFOX + Avastin started on her 71st birthday
KRAS gen 2 G13D mutant, BRAF Negative, MSS
03/2017: Oxi stopped after 9th tx, 5FU cntd. CT scans w/ contrast every 2 months - small shrinkage/stable
05/2017: PET/CT progression, started FOLFIRI + AVASTIN
07/2017: MRIs/CT stable
09/2017: MRIs/CT - min progression
09/2017: FOLFIRI + CYRAMZA
11/2017: left us

Maddielolo
Posts: 140
Joined: Tue Apr 08, 2014 4:57 pm

Re: CEA is a stupid test

Postby Maddielolo » Sun Dec 18, 2016 4:37 pm

Monitoring and responding to CEA rise has been a life saver literally. Its slight rise has flagged two recent liver mets. I know it's not for everyone, but sweeping generalizations (in any direction) seems like a terrible thing to promote when the stakes are so high. For some, CEA monitoring may be one of the most crucial aspects of treatment. For others it will not be.

Badass
Posts: 1166
Joined: Sun Jan 15, 2012 11:42 am

Re: CEA is a stupid test

Postby Badass » Sun Dec 18, 2016 6:09 pm

CEA may have saved my life as well. Its slight spike signaled my liver met three years ago and I am so glad it was found early!

Jane
R.C. 12/23/11 at age 52 T3N0M0
3/1/12 completed Xeloda and radiation
5/4/12 LAR & Ileostomy
6/7/12-10/4/12 6 rounds Xelox
11/27/12 Reversal
7/13/13 1 liver met
8/13 Met resection /hai pump
4/14 Chemo completed (Irinotecan/5fu/fudr in pump)

rp1954
Posts: 1524
Joined: Mon Jun 13, 2011 1:13 am

Re: CEA is a stupid test

Postby rp1954 » Sun Dec 18, 2016 6:16 pm

Bud, inflammatory cytokines certainly can whip up the cancer cells. I'm not sure what you are calling off the charts for ESR, like over 30-40, or over 100? ESR was used as one of the original cancer monitoring markers before CEA, about 50 yrs ago, although it is pretty non specific.

Also your mom's CA19-9 could be high and the average oncologist won't know it - most advanced CRC patients are actually diagnosed while in the 19 - 40 range, where most drs are trained to think about pancreatic cancer starting around 37-40 units. Most normal, truly healthy people have CA19-9 under 22 units due to blood genetics, with only a few % in the 19-22 range. Non-cancer patients or general population that are higher than 22 units, typically have some "benign disease" processes such as inflammation sources or cholangio-biliary problems.

A lot of the alternative treatments and supplements are also various kinds of anti-inflammatories. Celecoxib, aspirin, fish oil, IV vitamin C, various flavonoids, and some kinds of enzymes. It has taken us several classes of chemistry to sensitize and suppress the cancer cells with daily 5FU chemo only and immunotherapeutic supplements. Beating down histamines and quenching inflammation were high on our to-do list.

I've listed a number of blood markers before and you may yet find others that are useful for monitoring.

About scanning at 2 months long term, that has serious considerations.
A state of the art CT scanner is quickest and lowest radiation for CT scans at any resolution, where more resolution means more radiation.
MRIs are a drag, about like being a bird stuck on a screaming jet engine for 2-4 hours, and they take extra time for the radiologists to read.
PET scans are prone to false positives and have a large radiation dose. IV vitamin C will reduce the PET scan SUV when it stuffs up the KRAS mutant cells with (dehydro)ascorbate and interferes with their glucose metabolism, a good thing.

If I were monitoring the liver frequently at 1-2 month intervals, I'd be asking around about the latest and best ultrasound capabilities to reduce the heavy artillery use somewhat.
watchful, active researcher and caregiver for stage IVb/c CC. surgeries 4/10 sigmoid etc & 5/11 para-aortic LN cluster; 8 yrs immuno-Chemo for mCRC; now no chemo
most of 2010 Life Extension recommendations and possibilities + more, some (much) higher, peaking ~2011-12, taper to almost nothing mid 2018, mostly IV C

Coloncancerqueen
Posts: 25
Joined: Tue Aug 23, 2016 12:37 pm

Re: CEA is a stupid test

Postby Coloncancerqueen » Sun Dec 18, 2016 10:04 pm

I wish I could agree that the CEA is a stupid test. Mine was a high normal at the time of origins diagnosis. Then it normalized for about a year after surgery. I had my first CT scan after chemo and all looked good until my CEA came back at 7.3. One month later it elevated to 13.2. After another CT, PET, MRI, ultrasound, a second opinion, and 8 weeks later, colon cancer was finally confirmed on my left ovary. My CEA has normalized since that surgery and yes, I have terrible anxiety about that test. It was the clue for my doctors to keep looking, and I'm thankful for that. My next CEA, and scan appointment is the beginning of January. I'm already scared.
Dx 5-15
Right hemicolectomy 5-15
11 rounds of fol fox finished 11-15
6-16 elevated CEA 7.7
7-16 more elevation in CEA 13.1
Summer of 2016 2 ct scans, pet scan, MRI, ultrasound
8-12-16 Second opinion sought
8-16 biopsy revealed mets to ovary
9-16 both ovaries removed
10-16 CEA 2.6 clean scan NED
11-16 CEA 1.1, 1-16 CEA 1.5

Lee
Posts: 6029
Joined: Sun Apr 16, 2006 4:09 pm

Re: CEA is a stupid test

Postby Lee » Sun Dec 18, 2016 10:10 pm

muskokamike wrote:My oncologist yesterday told me that CEA was a stupid test for[size=150][


Yes, I've heard of this before. Honesty, I don't know why they "continue" use it for people it DOES NOT work well with.

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!

Buckeye
Posts: 109
Joined: Mon Jan 18, 2016 7:02 pm

Re: CEA is a stupid test

Postby Buckeye » Sun Dec 18, 2016 11:00 pm

My cea has always been <0.5 even when I had my cancer. I asked my surgeon about this and his answer was not all tumors produce cea levels. He said in my case if my levels increase even in the "safe" range he would go over me with a fine tooth comb, because my levels have been consistent throughout. Those are his thoughts on cea for me anyway.
Dx 10/20/15 stage 1 T1N0M0 1.3cmx1.1cmx1cm low grade ( well to moderately differentiated) Rectal cancer age 47
Loving Husband and father of two girls age 19 & 15 Sole income provider
CEA <0.5
CT, MRI and PET show no metastatic spread
LAR Laparoscopic TME 11/30/15 with Illo
Pathology clean no lymph node or vascular involvement. Confirmed Stage1
No chemo/rad cancer free now and forever.
Illo reversal 01/26/16

User avatar
BeansMama
Posts: 959
Joined: Thu Jan 28, 2016 1:38 am
Location: North Carolina

Re: CEA is a stupid test

Postby BeansMama » Sun Dec 18, 2016 11:16 pm

CEA definitely is not accurate for everyone. I see all these low CEA numbers and I wonder if mine will ever be that low. Last test had mine around 250. I do need to ask my oncologist what it is now as they just ran it with my last infusion.

CEA numbers also vary depending on the equipment used. When I first switched practices it was difficult to determine what they should use as a starting point for my CEA because the equipment used by my old oncologist seemed to be less sensitive - they had my CEA in the 120's while the new doctors test showed it over 200.
41 yrs old
Tumor found 9/2015
Surgery 1 - 11/2015 LAR and colostomy
Surgery 2 - 11/2015 wound vac
Surgery 3 - 12/2015 revise resection, move colostomy
Mets to liver - tumor inoperable - one add'l met destroyed
Stage IVa (T3 N2a M1a)
Primary tumor 9 cm x 7.5 cm x 2 cm
Beginning Folfox 1/2016 - Failed
Beginning Folfiri and vectibix 8/2016 — Failed
Beginning Folfirinox + Avastin 11/2016 - Failed
Beginning Keytruda 1/2017
CEA drop from 345 to 7.3 after starting immunotherapy
Lynch positive 3/2016

Pita
Posts: 637
Joined: Wed Feb 10, 2016 3:48 pm
Location: So Calif

Re: CEA is a stupid test

Postby Pita » Mon Dec 19, 2016 2:43 am

CEA has been a good marker for me, I'm tested bi-weekly along with other blood tests and I get a CT scan every 3 months. Started out at dx 20, went down after chemo to 5.8, stopped chemo before surgery and it rose to 9.6, went down after surgery when on chemo again to 6.5 and has slowly been going down. Averaging 5 now as I get ready to do #8 of Folfuri and Avastin. I'm happy that it works for me, gives me comfort to see it going down.
70yo Fem DX: 1/21/2016 RC Stage IV-Nodules lungs
MSS-Kras Wild-Lynch Synd Neg-Lung Biopsy 1/27/16-Port 2/19/16
MRI 7/7/16 Endometrial polyp found, watching LAR 7/19/16, No Ileostomy, Stage ypT3 N1
CT 11/7/16: Most mets stable,1 shrunk,1 new??
CEA Tests: 1/21/16=20, 12/22/16=5.3, 1/20/17=4.8, 2/15/17=6.2
9/20/16-1/24/17 Folfuri & Avastin
#10/10 Done
PET/CT 2/10/16-1/31/17=Some shrunk & growth to 2, Avastin failing ??? :evil:
2/21/17 Folfuri & Avastin


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