Nervous CEA rise

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wife2jeff
Posts: 70
Joined: Thu Sep 12, 2019 11:21 pm

Nervous CEA rise

Postby wife2jeff » Tue Mar 16, 2021 12:55 pm

My husband had his colon surgery July 24th 2019, finished chemo March 2020. His CEA was 4.9 at time of diagnosis and then has been very low since his surgery, .5, .6 and then in Sept was undetectable. He has been having some pretty bad lower and middle back pain. He went to an orthopedic dr and had some some xrays and an MRI done and now has been referred to a chiropractor within his clinic. The scare it could be cancer asked the orthopedic dr and he said there is nothing that indicates that but said we should contact his oncologist for reassurance so we did. She said it was highly unlikely but said he was due for his CEA labs so he did those. It has risen from undetectable to 1.2. Is this something to be concerned with? His oncologist does not seemed concerned and said it was within normal. I can't help to still be worried. Can other things cause an increase like this? The oncologist made an appt with him as a follow up as I guess it was time and she said they can talk more about his back pain. I'm just so scared right now. Any insight on this would be appreciated.
thank you

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GrouseMan
Posts: 888
Joined: Mon Aug 12, 2013 12:30 pm
Location: SE Michigan USA

Re: Nervous CEA rise

Postby GrouseMan » Tue Mar 16, 2021 1:57 pm

Yes very definitely it could be something else. It appears that his CEA has always been in the normal range even when initially diagnosed at 4.9. For some this is not a good marker for CRC. Since he is having back pain, there is inflammation involved. And any inflamation can cause a rise in CEA. The issue then becomes one of monitoring it over time, and look for a sustained upward trend.

Unfortunately - CEA has been discussed so much searching for it in the forum results in too many hits and the search capability won't look it up by itself. I searched for my own posts and scanned 57 pages of posts for CEA! This topic should really be a sticky I think located at the top of the board. Two different tests for CEA exists and its like comparing apples to oranges when that happens as well. The labs might have changed tests.

Here are the threads about CEA I was able to find where I wrote something in the past. These are from 2013 to the present. There are likely a lot more!

Stage IV patient with increasing CEA: wait-and-see? https://coloncancersupport.colonclub.co ... =1&t=62401
Beckman-Coultier CEA assays https://coloncancersupport.colonclub.co ... =1&t=61400
How important is CEA? https://coloncancersupport.colonclub.co ... =1&t=56664
What is it with CEA levels? https://coloncancersupport.colonclub.co ... =1&t=55107
Rising CEA and Clear PET Scans https://coloncancersupport.colonclub.co ... =1&t=55000
What is your tumor marker (CEA)? https://coloncancersupport.colonclub.co ... =1&t=53916
Should I be Worried about this CEA Number? https://coloncancersupport.colonclub.co ... =1&t=51146
Cea results posting.php?mode=reply&f=1&t=65324
Should I be worry about rise on my CEA level posting.php?mode=reply&f=1&t=65324
Help! Confusing CEA https://coloncancersupport.colonclub.co ... =1&t=49169
Scared- CEA elevated slightly. https://coloncancersupport.colonclub.co ... =1&t=48813
CEA level https://coloncancersupport.colonclub.co ... =1&t=48463
CEA Rising but still in normal range UPDATE https://coloncancersupport.colonclub.co ... =1&t=47238
CEA question https://coloncancersupport.colonclub.co ... =1&t=48035
Cea readings- confussed https://coloncancersupport.colonclub.co ... =1&t=46914
CEA creeping up https://coloncancersupport.colonclub.co ... =1&t=46622
Why are CEA levels tested every three months? https://coloncancersupport.colonclub.co ... =1&t=46638
CEA https://coloncancersupport.colonclub.co ... =1&t=46455
CEA Number: https://coloncancersupport.colonclub.co ... =1&t=46350
Help me understand CEA https://coloncancersupport.colonclub.co ... =1&t=43873

Maybe someone will turn this into a sticky?

Good Luck
GrouseMan
DW 53 dx Jun 2013
CT mets Liver Spleen lung. IVb CEA~110
Jul 2013 Sig Resct
8/13 FolFox,Avastin 12Tx mild sfx, Ongoing 5-FU Avastin every 3 wks.
CEA: good marker
7/7/14 CT Can't see the spleen Mets.
8/16/15 CEA Up, CT new abdominal mets. Iri, 5-FU, Avastin every 2 wks.
1/16 Iri, Erbitux and likely Avastin (Trial) CEA going >.
1/17 CEA up again dropped from Trial, Mets growth 4-6 mm in abdomen
5/2/17 Failed second trial, Hospitalized 15 days 5/11. Home Hospice 5/26, at peace 6/4/2017

wife2jeff
Posts: 70
Joined: Thu Sep 12, 2019 11:21 pm

Re: Nervous CEA rise

Postby wife2jeff » Tue Mar 16, 2021 3:08 pm

Thank you so much for your reply. I was kind of thinking that it could be inflammation. It's just so hard not to go to thinking cancer is back. That's crazy the cea threads. I will probably look through some of them.
Thanks so much

claudine
Posts: 809
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: Nervous CEA rise

Postby claudine » Tue Mar 16, 2021 4:02 pm

Wow thanks for the summary of CEA posts, Grouseman! I always wonder when I see people who were active in years past and are not posting anymore, if they successfully achieved NEDdom and that's why they're not here anymore, or if it's because of a much sadder reason... I always hope for the former, of course...
DH has a scan on Thursday, meeting with his onc next Monday. Given the trend in his CEA levels, I'm not expecting good news - it went from 4.4 in June to 26 in September to 51 in December, I can't imagine it's anything but a recurrence, something that was too small to be captured by scans...
Wife of Dx 04/18 (51 yo). MSS, KRAS G12A, no primary

Tumors: L4 04/18; left adrenal gland & small lung nodules 03/19
rectum 02/22 (pT3 pN0 stage 2A); L3 09/22

Surgeries: intestinal resect. 05/18 (no cancer - Crohn's); adrenalectomy 02/20
L3-L4-L5 fusion and corpectomy 05/20; LAR 04/22; ileo reversal 09/22
L2-L3 fusion and corpectomy 09/22

Treatments: EBRT 04/18; SBRT 02/19; Failed adjuvant Xelox ; Folfiri/Avastin 03/19 - 01/20
adjuvant chemorad (Xeloda) 06/22; SBRT 11/22; Xeloda/Avastin since 01/24

catstaff
Posts: 177
Joined: Wed Mar 03, 2021 11:37 am

Re: Nervous CEA rise

Postby catstaff » Wed Mar 17, 2021 7:00 am

As far as I know, they don't routinely measure CEA for healthy people, so its normal fluctuations aren't all that well characterized. A value of 1.2 is well within the normal range.

I know how Claudine feels--my DH had a scan that looked good, but on the same day CEA had jumped from 2.7 at the last check to 9. Onc scheduled a PET which found the recurrence. In retrospect, the L5 met was visible on the supposedly good CT, but it was just mentioned in passing as a "change" in the radiologist's report. Over the next three weeks, CEA doubled to 18. Starting FOLFIRI+bev in about a week and a half.
D/H Dx 10/2019 RC age 61
Clinical T4bN2M1a (common iliac and para-aortic lymph nodes)
MSS KRAS G12D
CRT 11/19-1/20 FOLFOX 3/20-7/20
Pelvic exenteration w/LAR 8/20
ypT4bN0Mx G3 0/14 nodes LVI not seen PNI-
CEA 10/19:20, 1/20-11/20:1.6, 4.3, 3.4, 2.7, 2/21:9.0 3/21:18,40 4/21:28,19, 5/21:13.3,8.6
PET 3/21 recurrence in distal nodes, L5 vertebra, pelvis
FOLFIRI+bev 3/21-

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GrouseMan
Posts: 888
Joined: Mon Aug 12, 2013 12:30 pm
Location: SE Michigan USA

Re: Nervous CEA rise

Postby GrouseMan » Wed Mar 17, 2021 9:06 am

Yes - My wife had a peri met that was not very well visualized by CT scans. I don't think they really got a good handle on it until it was large enough to cause a blockage of her colon by pressure from the outside. It was also pressing on her ureter requiring a stint. This was what did my wife in. Liver and Spleen mets Chemo did a very good number on disappearing in the Spleen and calcifying on the liver. What they thought were spots in her lungs turned out to be nothing as over the course of 4 years they never changed. The peri met turned up in her case via the CEA test showing a slow rise. In her case it was a good marker. We could tell something was happening though they couldn't see the met initially.

So its not to say the CEA test isn't useful - just less so for those where there is little rise outside the normal value ranges. I've seen them reported here greater than 2000. I think my wife's after removal of her primary was near 129 or so. With chemo she got it down into the normal range for over a year. She never took a chemo break.

I guess you might say the reason I come back here is I was at one time a medicinal chemist that worked on anticancer drug research. I was involved in the research into two anticancer drugs on the market now. Although I an now involved in Pharmaceutical R&D Knowledge Management now (an IT job) I like to stay involved and help where I can.

Good luck. Be vigilant!

GrouseMan
DW 53 dx Jun 2013
CT mets Liver Spleen lung. IVb CEA~110
Jul 2013 Sig Resct
8/13 FolFox,Avastin 12Tx mild sfx, Ongoing 5-FU Avastin every 3 wks.
CEA: good marker
7/7/14 CT Can't see the spleen Mets.
8/16/15 CEA Up, CT new abdominal mets. Iri, 5-FU, Avastin every 2 wks.
1/16 Iri, Erbitux and likely Avastin (Trial) CEA going >.
1/17 CEA up again dropped from Trial, Mets growth 4-6 mm in abdomen
5/2/17 Failed second trial, Hospitalized 15 days 5/11. Home Hospice 5/26, at peace 6/4/2017

michelle c
Posts: 1929
Joined: Wed Dec 02, 2009 3:58 am

Re: Nervous CEA rise

Postby michelle c » Wed Mar 17, 2021 9:21 am

I truly understand your concerns. I have been in your shoes many times, whereby I have worried about small rises. I have learnt a lot about CEA blood results, and I very much doubt that this small rise is anything to be concerned with. I have had numerous CEA tests and it’s normal for it to fluctuate up and down a bit. I remember stressing so much when my CEA went from 1.3 to 1.9 and almost convinced myself that my cancer was back, only for it to go down again at my next test. Oncologists will look for an upward trend in results. My oncologist said that it is very normal for it to fluctuate, and told me that if I had blood taken in the morning and again in the afternoon the CEA results would more than likely be slightly different. I’m sure your husband’s result will be lower next time. However, try not to worry until the next test. 1.2 is extremely low still. Best wishes ❤️
May 25 2009 Dx with CC (sigmoid colon) 2 days after my 44th b'day
CEA prior to surgery 4.7
Jun 3 2009 LAR - Stage III 3/10 lymph nodes
Jul 6 - Dec 10 2009 - 12 cycles FOLFIRI
Genetic testing - inconclusive for Lynch
Jul 2012 port removed & hernia repair

claudine
Posts: 809
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: Nervous CEA rise

Postby claudine » Wed Mar 17, 2021 9:53 am

I know how Claudine feels--my DH had a scan that looked good, but on the same day CEA had jumped from 2.7 at the last check to 9. Onc scheduled a PET which found the recurrence.


Yes my feeling is that if nothing shows up on CT scan again, the onc will probably ask for a PET, it’s been a year since the last one. DH still has a lytic tumor in his L4 after all, it may be acting up again... I just hope it hasn’t spread to new places... Previous scans show tiny stable lung nodules, and a thickening in the retroperitoneal area that’s getting less visible so is assumed to be post surgical in nature, but who knows.
Wife of Dx 04/18 (51 yo). MSS, KRAS G12A, no primary

Tumors: L4 04/18; left adrenal gland & small lung nodules 03/19
rectum 02/22 (pT3 pN0 stage 2A); L3 09/22

Surgeries: intestinal resect. 05/18 (no cancer - Crohn's); adrenalectomy 02/20
L3-L4-L5 fusion and corpectomy 05/20; LAR 04/22; ileo reversal 09/22
L2-L3 fusion and corpectomy 09/22

Treatments: EBRT 04/18; SBRT 02/19; Failed adjuvant Xelox ; Folfiri/Avastin 03/19 - 01/20
adjuvant chemorad (Xeloda) 06/22; SBRT 11/22; Xeloda/Avastin since 01/24

claudine
Posts: 809
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: Nervous CEA rise

Postby claudine » Mon Mar 22, 2021 12:23 pm

We got the CEA results - 75 this time. It keeps rising, but scan is stable, and onc doesn't seem to want another test (MRI or PET). He scheduled another scan for late June. His opinion is that eventually something will show up, but since DH's cancer isn't very fast progressing or aggressive, he'd rather we have a "normal" life in the meantime.
I guess we'll go with that...
Wife of Dx 04/18 (51 yo). MSS, KRAS G12A, no primary

Tumors: L4 04/18; left adrenal gland & small lung nodules 03/19
rectum 02/22 (pT3 pN0 stage 2A); L3 09/22

Surgeries: intestinal resect. 05/18 (no cancer - Crohn's); adrenalectomy 02/20
L3-L4-L5 fusion and corpectomy 05/20; LAR 04/22; ileo reversal 09/22
L2-L3 fusion and corpectomy 09/22

Treatments: EBRT 04/18; SBRT 02/19; Failed adjuvant Xelox ; Folfiri/Avastin 03/19 - 01/20
adjuvant chemorad (Xeloda) 06/22; SBRT 11/22; Xeloda/Avastin since 01/24

claudine
Posts: 809
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: Nervous CEA rise

Postby claudine » Mon Mar 22, 2021 2:22 pm

Meh, after brewing over this high CEA, I called the onc. I'm the one reading reports, asking questions (DH just goes along with whatever), and it's annoying not being able to be present during his appointments because of Covid! Reports are so abrupt, it's hard to get a good feel for what the doctors are really thinking.
Onc was totally amenable to me asking lots of questions:
Can we go to France in July, even if June scan reveals a recurrence? Absolutely, cancer isn't moving fast, might as well have a good vacation before attacking whatever has popped up.
How about doing an MRI or PET instead of another scan? PET only good for larger tumors; wouldn't be as good as scan to catch a small recurrence. MRI best for nervous system, but for organs etc, scan with contrast probably the best.
Treatment - what would be next? DH could try Lonsurf, even though he's been stable on Folfiri, because Lonsurf has even lower side effects (according to onc) and would allow him to function and enjoy life more. But since he was stable on Folfiri, we can always return to it, that's another option. But that's assuming chemo required; whatever recurrence is brewing, it could be attacked with radiation, or surgery, depending what/where it is.

One thing I've learned over the course of this journey, is just how different oncologists can be in their approach. DH's seems to be pretty hands off. He's got a great reputation, so I'll trust him. If things take a turn for the worst though, I may push for a second opinion... But we're not there yet :)
Wife of Dx 04/18 (51 yo). MSS, KRAS G12A, no primary

Tumors: L4 04/18; left adrenal gland & small lung nodules 03/19
rectum 02/22 (pT3 pN0 stage 2A); L3 09/22

Surgeries: intestinal resect. 05/18 (no cancer - Crohn's); adrenalectomy 02/20
L3-L4-L5 fusion and corpectomy 05/20; LAR 04/22; ileo reversal 09/22
L2-L3 fusion and corpectomy 09/22

Treatments: EBRT 04/18; SBRT 02/19; Failed adjuvant Xelox ; Folfiri/Avastin 03/19 - 01/20
adjuvant chemorad (Xeloda) 06/22; SBRT 11/22; Xeloda/Avastin since 01/24

catstaff
Posts: 177
Joined: Wed Mar 03, 2021 11:37 am

Re: Nervous CEA rise

Postby catstaff » Mon Mar 22, 2021 2:52 pm

Note that I am not a physician, but it seems to me that if it's slow moving then this seems perfectly reasonable -- enjoy your trip! -- but if it still seems "stable" in June but the CEA remains this high or rises, maybe reconsider a second opinion and a PET. The PET found mets in my husband that were too small to see on the CT easily, such as the case of the lymph nodes, which were not categorized as lymphadenopathy because they weren't enlarged over their rule of thumb of 1 cm, but were still avid. (The lymph-node tumors have to start small, after all.) The pelvic tissue was barely large enough to biopsy, and the nodes were too small for a reliable biopsy. The only met that was clearly visible on CT alone was the L5 vertebra.

MRI is usually considered pretty definitive for the liver, which one would generally consider to be an "organ." My DH has simple cysts that appear and disappear on CT (with contrast) which is pretty common, and I have seen reports on this very forum of liver spots missed in a CT read that were malignant.

Just my opinion.

Lately they have been allowing me to accompany him. I don't know whether I'll be able to go with him for his first folfiri infusion next week.
D/H Dx 10/2019 RC age 61
Clinical T4bN2M1a (common iliac and para-aortic lymph nodes)
MSS KRAS G12D
CRT 11/19-1/20 FOLFOX 3/20-7/20
Pelvic exenteration w/LAR 8/20
ypT4bN0Mx G3 0/14 nodes LVI not seen PNI-
CEA 10/19:20, 1/20-11/20:1.6, 4.3, 3.4, 2.7, 2/21:9.0 3/21:18,40 4/21:28,19, 5/21:13.3,8.6
PET 3/21 recurrence in distal nodes, L5 vertebra, pelvis
FOLFIRI+bev 3/21-

claudine
Posts: 809
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: Nervous CEA rise

Postby claudine » Mon Mar 22, 2021 3:07 pm

I tend to agree with all you're saying, based on posts on this forum (and others). In my husband's case, scan always found something first, then PET confirmed it. I guess that's the oncologist's MO. If next scan still stable but CEA even higher, I will push harder. I may be playing the ostrich and burying my head in the sand a bit, but I'm scared to rock the boat, DH has been feeling good physically and especially mentally lately, I'm so afraid of his reaction the next time something does pop up...
Wife of Dx 04/18 (51 yo). MSS, KRAS G12A, no primary

Tumors: L4 04/18; left adrenal gland & small lung nodules 03/19
rectum 02/22 (pT3 pN0 stage 2A); L3 09/22

Surgeries: intestinal resect. 05/18 (no cancer - Crohn's); adrenalectomy 02/20
L3-L4-L5 fusion and corpectomy 05/20; LAR 04/22; ileo reversal 09/22
L2-L3 fusion and corpectomy 09/22

Treatments: EBRT 04/18; SBRT 02/19; Failed adjuvant Xelox ; Folfiri/Avastin 03/19 - 01/20
adjuvant chemorad (Xeloda) 06/22; SBRT 11/22; Xeloda/Avastin since 01/24

catstaff
Posts: 177
Joined: Wed Mar 03, 2021 11:37 am

Re: Nervous CEA rise

Postby catstaff » Mon Mar 22, 2021 3:54 pm

We went to PET based solely on the rapid CEA rise. They didn't even really note the L5 met as such, and the onc didn't initially pick up on it either. We thought it might be arthritis or something. So his recurrence is very early. However, CEA is a good marker for him and that's clearly not the case for all patients.
D/H Dx 10/2019 RC age 61
Clinical T4bN2M1a (common iliac and para-aortic lymph nodes)
MSS KRAS G12D
CRT 11/19-1/20 FOLFOX 3/20-7/20
Pelvic exenteration w/LAR 8/20
ypT4bN0Mx G3 0/14 nodes LVI not seen PNI-
CEA 10/19:20, 1/20-11/20:1.6, 4.3, 3.4, 2.7, 2/21:9.0 3/21:18,40 4/21:28,19, 5/21:13.3,8.6
PET 3/21 recurrence in distal nodes, L5 vertebra, pelvis
FOLFIRI+bev 3/21-


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