CEA and it’s anxiety

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TestTheyDontStop
Posts: 3
Joined: Tue Jul 30, 2019 6:52 pm
Facebook Username: Shane Boyle

CEA and it’s anxiety

Postby TestTheyDontStop » Tue Jul 30, 2019 8:42 pm

Hello to all, I bet ever one of us here never thought we would be here talking about our colon cancer. The big “C” is never easy. Sorry I’m new to here and many of you probably have had this question asked so many times but I finally am to my breaking point with this CEA crap!!!! Plus it’s very hard for me to ask for help and talk about personal things.
Short story on my cancer, I am 39 was diagnosed at 38 with colon cancer June 14 2018 andocarcinoma of the sigmoid colon on the left side after a colonoscopy, Cat scan barely picked it up, no Mets. CEA 2.5...Had surgery still nobody was sure how bad, pathology report came back pushed thru all layers, 19/32 lymph nodes positive for cancer but all microscopic even thru the wall of colon. So port installed, 12 rounds of Chemo got to 8 of the Oxy and had to stop because neurapthy got to bad, I wanted to keep going but everyone said it’s okay. Continued with just the 5FU. Finished chemo Feb.7 2019. Had no scans just one ultrasound durning Chemo, just watching my blood levels but never tested my CEA as my doc said it would not be a good marker because it was never high. Sorry not the greatest speller and my typing sucks....lol
So I was diagnosed with Stage 3C, my doctor knows I am a nervous person so he tried not to tell me too much because I would research things and drive myself batty over statistics that don’t mean anything because it’s just a number.
Had genetics done with no genetics or issues.
Fast forward to today. My Lab work was good, my colonoscopy came back good even pushed me to 3 years. But that damn CEA!!!!!! My lab paper states <7.0ng/ml is still normal.
So Pre Surgery 7/26/18 2.5. 3/19: 1.9 4/19 1.8. 5/19 2.4. 6/19 3.7. 7/19 4.9
My original oncologist left and I do have a new oncologist great doc also, he said let’s do a PET Scan (my first one ever) to see what’s going on if anything, it could be CEA isn’t a good marker just as my other oncologist said? He also said he is very optimistic.
Imagine test that I have done: Ultra sound after 6th round of chemo found spot on liver (hemangioma non cancerous)
Ultra sound right after chemo was done, same spot no changes
Cat Scan 1 month after Chemo. lungs, abdomen, liver same spot still there. But everything looked good.
My old. oncologist wanted to do an MRI (Done late May) just to check that spot one more time before he left and it found two spots in the same spot as the hemangioma. But it’s said two spots and not one........so he was not worried sent me for an ultrasound which once again said no it’s a hemangioma and the lady doing the test remembered me from last ultrasound and told me one day they will have one test that does it all and told me it’s probable the way I was laying and the way the MRI imaged the spot. And the spot was the same spot and no changes. That ultrasound was done in June.
Just some info: Do Not Smoke, do drugs or drink
Taking a mult-vitamin and super B complex (my old oncologist said it would help with the neurapthy)

Any thoughts or if this happened to you? I appreciate any insight or opinions....... .thank you so much

Shane

radnyc
Posts: 388
Joined: Tue Apr 06, 2010 6:32 pm

Re: CEA and it’s anxiety

Postby radnyc » Wed Jul 31, 2019 8:44 am

CEA anxiety is one of our favorite subjects here, and it sucks! I’m one of those whose CEA level creeps up on occasion. But it seems that there very high false-positives with some of us, almost up to 50%, and in some people 15 is the high normal, not 5! Of course it’s still important to keep an eye on the thing if it takes a bigger than normal jump. Here’s the study:

https://www.ascopost.com/issues/august- ... al-cancer/

Peace

Al
DX Jan '10, at 47
Feb - colon resection - 2/17 nodes
April - liver mets - Stage 4
3 months Folfox chemotherapy
August '10 liver resection and HAI pump
7 months chemo FUDR HAI and Folfiri systemic
NED since August 2010
Last treatment April '11
HAI Pump removed Dec '15

Deb m
Posts: 505
Joined: Tue Jan 14, 2014 10:08 am

Re: CEA and it’s anxiety

Postby Deb m » Wed Jul 31, 2019 9:02 am

My husband was one of those who had as they termed it " A fluctuating CEA". It almost drove me into the nut house. I remember on one occasion, it went from 2.8 to 5.7 in a three month period of time. They ordered a pet scan, and all was normal. He was in the middle of chemo then, so they said it could of been from that. They rechecked it 6 weeks later and it was down to 3.8. His CEA always went up and down the entire 5 years he was monitored closely. As I said, it literally almost caused me to have a mental breakdown. It was a rough 5 years. I feared the cea's more than I did the surveillance ct scans. It sounds like they have been keeping a close eye on your liver and that things seem to be stable. I do think doing a Pet scan at this point is the best plan. I pray that your situations ends up being a false alarm as ours were many times. Try to remain calm which I know is almost impossible. Keep us posted.

deb m

NHMike
Posts: 2264
Joined: Fri Jul 21, 2017 3:43 am

Re: CEA and it’s anxiety

Postby NHMike » Wed Jul 31, 2019 4:48 pm

My CEA is correlated with physical activity and it rose with chemo last year. It got up pretty high, doc did a CT and found nothing. It started dropping after finishing chemo and decreasing activity.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8, 2/12 1.2
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal
2/19: Clean CT

TestTheyDontStop
Posts: 3
Joined: Tue Jul 30, 2019 6:52 pm
Facebook Username: Shane Boyle

Re: CEA and it’s anxiety

Postby TestTheyDontStop » Wed Jul 31, 2019 6:14 pm

Thank you for your response, it’s seems like every test you get it’s a 50/50 chance. I know I’m only 5 months out from Chemo and I am just fresh into this testing process but I just do not understand how each time you do one test and get good news the next test says maybe there’s a problem. Thanks again for taking the time to write this post.....


radnyc wrote:CEA anxiety is one of our favorite subjects here, and it sucks! I’m one of those whose CEA level creeps up on occasion. But it seems that there very high false-positives with some of us, almost up to 50%, and in some people 15 is the high normal, not 5! Of course it’s still important to keep an eye on the thing if it takes a bigger than normal jump. Here’s the study:

https://www.ascopost.com/issues/august- ... al-cancer/

Peace

Al

TestTheyDontStop
Posts: 3
Joined: Tue Jul 30, 2019 6:52 pm
Facebook Username: Shane Boyle

Re: CEA and it’s anxiety

Postby TestTheyDontStop » Wed Jul 31, 2019 6:23 pm

Thank you for sharing your experience with the CEA curse....lol. Did your husbands CEA do what mine is doing after Chemo? Mine was never checked durning Chemo because I was told mine was not a good marker. But now it’s being checked almost every month since ending Chemo and it’s giving me heart attacks now. I understand that with cancer you never know but I am trying to stay hopeful and positive. Thank you for the prayers. Again thank you for taking the time to respond to my post.

Deb m wrote:My husband was one of those who had as they termed it " A fluctuating CEA". It almost drove me into the nut house. I remember on one occasion, it went from 2.8 to 5.7 in a three month period of time. They ordered a pet scan, and all was normal. He was in the middle of chemo then, so they said it could of been from that. They rechecked it 6 weeks later and it was down to 3.8. His CEA always went up and down the entire 5 years he was monitored closely. As I said, it literally almost caused me to have a mental breakdown. It was a rough 5 years. I feared the cea's more than I did the surveillance ct scans. It sounds like they have been keeping a close eye on your liver and that things seem to be stable. I do think doing a Pet scan at this point is the best plan. I pray that your situations ends up being a false alarm as ours were many times. Try to remain calm which I know is almost impossible. Keep us posted.

deb m

Deb m
Posts: 505
Joined: Tue Jan 14, 2014 10:08 am

Re: CEA and it’s anxiety

Postby Deb m » Thu Aug 01, 2019 8:17 am

My husbands cea continued to go up and down even after chemo, though it never went up as high as it did when he was undergoing chemo. I have spoken to people who it has though. I know this is driving you crazy, but try to remain calm. Keep us posted and I will be hoping and praying for a false high.

deb m

boxhill
Posts: 354
Joined: Fri Apr 06, 2018 11:40 am

Re: CEA and it’s anxiety

Postby boxhill » Thu Aug 01, 2019 9:42 am

CEA is not a marker for about 30% of us, or so I've read. When I had m initial surgery diagnosis, and pathology they said it wasn't a marker for me, and in fact it has only been tested a couple of times since. It was about 3 when I had surgery, and went up to 8 during chemo, then down to 6 later in chemo, and now it's about 7. As we know, lots of things can drive it up.

I suggest that you ask why it was not considered a marker for you in the first place. And if it really isn't, thank doG that you have one less thing to obsess about! :lol:
F, 64 at DX CRC Stage IV
3/17/18 blockage, r hemi
11 of 25 nodes,5 mesentery nodes
5mm liver met out
pT3 pN2b pM1
BRAF wild, KRAS G12D
dMMR, MSI-H
5/4/18 FOLFOX
Neulasta 6/28
7/9/18 CT NED
11/20/18 CT NED. Enlarged spleen.
12/20/18 Liver MRI 5mm liver met? and 2 lymph nodes in porta hepatis
12/31/18 Keytruda
6/5/19 Triphasic CT LN and spleen normal, Liver node stable
6/28/19 Pause Keytruda, predisone for joint pain
7/31/19 Restart Keytruda
9/10/19 CT stable

zx10guy
Posts: 186
Joined: Mon Jan 07, 2013 12:54 pm

Re: CEA and it’s anxiety

Postby zx10guy » Thu Aug 01, 2019 7:39 pm

I've been posting much lately and only read the boards from time to time.

I figure I would post up my situation with CEA. When I was diagnosed in Dec. of 2012, my CEA was 13.9 from what I recall. I was Stage 3b with one lymph node involved (T3N1). Went through 12 rounds of chemo and on the other side of it I was never below what was considered normal with the Bayer Siemens test. Always just above 3. When the clinic I was using moved to the Roche test, I was only below normal the one time at 4.7. I moved oncologists and they used Labcorp. My numbers hovered in the 5s there until a follow up around May of 2016 when my CEA shot up to 9.7. After a CT and PET, a colonoscopy was done where we found a polyp in my appendix. Had a right hemicolectomy and found out I was stage 0 appendix cancer. CEA dropped down to a low of I think 5.2. Then in March of 2017 during a routine 3 month checkup, my CEA shot up to 15.6. Thinking there was a lab error, we retested and it came back at 16.7. Did the whole series of tests. CT, PET, small bowel MRI, small bowel capsule endoscopy, upper GI endoscopy, and colonoscopy. Nothing found. Went back for another series of check ups where I went from 3 months to 6 months check ups. My CEA got as low as 11 but bounced up and down to a high of 20 settling around the 17 range. My doc doesn't think it's cancer related as he said my CEA wouldn't be bouncing all over the place like this and we should have found something by now. This was a bit over a year since the spike in March 2017.

Then my oncologist joined a bigger practice and thus they were able to do in house CEA tests. I go to my 6 month checkup in December of 2018. CEA....26. CT scan is still clear. He thinks there might be an issue with the machine that runs the assay test for CEA. Schedules me for another 6 month follow up. In April I see a PA instead of my regular doc. CEA....28.6. So the CEA levels are confirmed with the new lab. CT scan is still clear. PA also doesn't know what to think of it. So I go back in October to see what's what.

I've had some major stresses in my life during this CEA ordeal. Going through a divorce now. Was having problems with visitations with my daughter. And job issues where I've had to change jobs twice in a year's span. One major stress which is over my daughter is a bit resolved. So I've managed to gain 10lbs of muscle in a month where people were wondering if I was taking steroids. I feel for the most part fine. Don't have any swelling or ascites.

I did find an article on a Taiwanese women that had unexplained CEA levels with no cancer found. They tracked her for 5 years. Her CEA levels got in to the hundreds and stayed above the 60s.

Chickspeed
Posts: 43
Joined: Sat Jun 17, 2017 5:16 am

Re: CEA and it’s anxiety

Postby Chickspeed » Fri Aug 02, 2019 7:39 am

I doubt this will help, but I seen when i started my journey how much people stressed over CEA level. My medical team and i have an arrangement. If it's not concerning them I don't want to know about it.
12/15/2016 Mod Diff tumour 5-6 cm 10-12 cm fr AV T3 tumour cea 1.4
12/29/2016 CT no spread ln normal
1/19/2017 MRI confirms mass and shows 3 enlarged LN (suspected to be infection draining)
3/6/2017 25 sessions chemoradiation
6/20/2017 LAR with temp loop ileo
7/10/2017 Path 20mm margins tumour 0.1 CM with microscopic invasion of submucosa
aug-dec 2017 6 rnds xeloda
1/9/2018 CT all clear
1/18/2018 Colonoscopy clear
3/27/2018 ileo reversal
CEA continues to be normal


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