Am I panicking for no reason? Slight rise in CEA levels

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utahgal7
Posts: 14
Joined: Fri Sep 11, 2020 12:04 pm

Am I panicking for no reason? Slight rise in CEA levels

Postby utahgal7 » Fri Oct 02, 2020 8:05 am

Hi,

I am a newbie here. So, I have experienced anxiety over the past few days. I had a chest/abdomen/pelvis CT earlier this week. The radiologist saw 1 hypoattenuating lesion on my liver measuring 1.6 cm and he also noted soft tissue thickening close to the sacrum (which I have learned is your tailbone). The lesion on my liver was noted on my last scan as possible hemangioma. I will have MRI of liver in 10 days to figure out the lesion. My concern is about the radiologist's statement about the soft tissue thickening by the sacrum. He said the thickening may be due to the low anterior resection surgery that I had. But he also said he cannot rule out malignancy. This did not help my anxiety, at all!

Also, I had a rise in my CEA level from 0.9 to 1.4. Should I be worried about the rise of my CEA level? Someone that I know told me the CEA test is not a reliable tumor marker. Is this true?

Sheesh, I do not know how all of you cope with the treatments, surgeries, scans, bloodwork, appointments, etc. I am a wreck!!!

You guys are my heroes!!!
02/20 Rectal Cancer Diagnosis
03/20 CEA 2.7 ST Radiation - 25Gy over 5 days
04/20 LAR surgery w/ ileostomy (only 6 lymph nodes retrieved)
04/20 T3N1M0
05/20 CAPOX (had to discontinue because Oxaliplatin caused temporary blindness in left eye)
06/20 CEA 0.9
08/20 Ileostomy reversal
09/20 CEA 1.4, CT chest/abdomen/pelvis; suspicious areas in liver
10/20 MRI liver; dx hemangioma

Gravelyguy
Posts: 323
Joined: Thu Jul 05, 2018 6:03 pm

Re: Am I panicking for no reason? Slight rise in CEA levels

Postby Gravelyguy » Fri Oct 02, 2020 10:09 am

Hi Utahgal,

Sorry for all the anxiety but totally get it!

I am not a Dr. so take what I say with a grain of salt. It looks like you had your CEA test within a month of your takedown surgery. The rise in CEA COULD easily be related to inflammation from the surgery. I would not be too concerned. Having an MRI on your liver will help figure out what that spot is. MRI does a better job on livers than CT scans.

I can't comment on the soft tissue thickening but hopefully your Dr. will get to the bottom of this.

Hang in there!

Dave
6/17 dx mRC t3n1m1 very low rectal tumor 2 liver Mets 1.3 cm and .9 cm

6/17 begin 4 rounds Folfox w/Vectibix
9/17 short course radiation
10/17 rectal and liver resection LAR with coloanal anastomosis (no rectum left)
11/17-3/18 8 rounds Folfox
6/18 still NED!! Takedown
8/28/18 still NED! CEA .8 new low for me
10/18/18 colonoscopy clear
12/12/18 clear scans, CEA .9 still NED!
6/11/19 clear scans CEA 1.0
12/19/19 clear scans CEA 1.0 still NED!
6/17/20 clear scans CEA 1.1 still NED!

boxhill
Posts: 607
Joined: Fri Apr 06, 2018 11:40 am

Re: Am I panicking for no reason? Slight rise in CEA levels

Postby boxhill » Fri Oct 02, 2020 10:28 am

I agree with Gravelyguy.

CEA is a marker for some people and not for others. And for those for whom it is a marker, the degree varies. For about 30% of us--including me, thankfully, because it is one less thing to obsess about! :lol: -- it is not a marker. FWIW, my CEA has NEVER been as low as yours is, and I've been NED for at least 16 mos. AFAIK, they look for trends, not tiny bobbles.
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
5/18 FOLFOX
7/18 and 11/18 CT NED
12/18 MRI 5mm liver mass, 2 lymph nodes in porta hepatis
12/31/18 Keytruda
6/19 Multiphasic CT LNs normal, Liver stable
6/28/19 Pause Key, predisone for joint pain
7/31/19 Restart Key
9/19 CT stable
Pain: all fails but Celebrex
12/23/19 CT stable
5/19 MRI stable/NED
Stop Key
8/20 MRI NED

utahgal7
Posts: 14
Joined: Fri Sep 11, 2020 12:04 pm

Re: Am I panicking for no reason? Slight rise in CEA levels

Postby utahgal7 » Fri Oct 02, 2020 1:02 pm

Thanks for the words of reassurance!

Have a great weekend!
02/20 Rectal Cancer Diagnosis
03/20 CEA 2.7 ST Radiation - 25Gy over 5 days
04/20 LAR surgery w/ ileostomy (only 6 lymph nodes retrieved)
04/20 T3N1M0
05/20 CAPOX (had to discontinue because Oxaliplatin caused temporary blindness in left eye)
06/20 CEA 0.9
08/20 Ileostomy reversal
09/20 CEA 1.4, CT chest/abdomen/pelvis; suspicious areas in liver
10/20 MRI liver; dx hemangioma

Trying
Posts: 250
Joined: Sun May 13, 2018 10:11 pm

Re: Am I panicking for no reason? Slight rise in CEA levels

Postby Trying » Fri Oct 02, 2020 5:46 pm

I totally get the anxiety. My ceas have always jumped all over. Its unnerving but I learned my ceas aren't a good measurement always
38 yr old single mom of almost 2 year old at the time
April 2018 colon cancer stage IV 10 liver mets and peri met. Folfox and 12 rounds oxyplatin
Fec 2018 Down to 2 mets in liver. 8 dissapeared
July 2019 switched to xeloda pills as I prefer to 3 day infusion. Also on avistan
Oct 2019 emergency colostomy due to perforated bowel. ( unreal pain)
Feb 2020 show 2mm tumor increase.
Plan to go back on oxy
Oxy failed- irinotecan as of of Sept 2020

Punky44
Posts: 446
Joined: Mon Oct 01, 2018 4:29 pm

Re: Am I panicking for no reason? Slight rise in CEA levels

Postby Punky44 » Fri Oct 02, 2020 11:23 pm

CEA is my worst enemy but my mom’s oncologist always reminds me that they are looking for a continual significant upward trend and not just one random rise before they think anything of it.
Caregiver to my amazing mom (68 at dx)
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
6/28/19 Reversal and port out
CEA 2.1; 1.9; 2.6; 2.8; 2.3; 2.4
Latest update: 6/20–Clear CT; 9/22—CEA 2.4

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

DarknessEmbraced
Posts: 3499
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: Am I panicking for no reason? Slight rise in CEA levels

Postby DarknessEmbraced » Sat Oct 03, 2020 9:37 am

CEA was never a good indicator for me as it was below 1 before surgery. I get CEA and CA 125 checked. I hope that your MRI shows the thickening is benign.*hugs*
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! :)

rachelfromnyc
Posts: 57
Joined: Fri Oct 04, 2019 11:32 am

Re: Am I panicking for no reason? Slight rise in CEA levels

Postby rachelfromnyc » Sun Oct 04, 2020 12:54 pm

Also, I had a rise in my CEA level from 0.9 to 1.4. Should I be worried about the rise of my CEA level? Someone that I know told me the CEA test is not a reliable tumor marker. Is this true?


It is true that CEA is not a reliable tumor marker for everyone. It is for some but not for others. CEA is also not specific it can go up for other reasons. If it gives you any comfort, here is my CEA story. Mine dropped real quick after the first couple of rounds of chemo. It stayed in the normal range with some slight fluctuations up and down, but still normal, from last June to this April. Then it started to creep up, first to around boderline. Then it leveled off around 15 ng/mL on the July/August/September tests. I've had scans in June and September and they were good, everything stable or shrinking. Oncologist says she never makes treatment plans based on CEA alone and that the scans are more important. She even wants to take CEA only when there is a scan upcoming, instead of monthly like I've been doing. She thinks it causes too much stress (which is true) but I still want to see it each month.
Dx May '19, one month after 37th bday
5/19: 3.4 cm tumor in transverse colon, distant lymph nodes, innumerable lung nodules
Moderately differentiated invasive adenocarcinoma
MSS, TMB 7.9, BRAF/KRAS wild
6/19 - 9/19: Folfox
10/19 - 2 new tumors in liver, switch to Folfiri w/ Avastin
3/20 - liver tumors no longer seen, primary tumor 0.9 cm, continue Folfiri w/ Avastin

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betsydoglover
Posts: 978
Joined: Mon Aug 14, 2006 2:31 pm
Facebook Username: Betsy Lindh Williams
Location: Maryland - outside DC

Re: Am I panicking for no reason? Slight rise in CEA levels

Postby betsydoglover » Sun Oct 04, 2020 5:35 pm

Both of those numbers are very low. My oncologist says they are taught to not worry about CEA numbers changing when they are still in normal range. For 15 years I've watched my CEA bounce between <0.5 and 1.1 - I doubt there is any issue with you CEA.

Take care,
Betsy
diag. Stage IV, 5/05, liver met
lap sigmoid colectomy, 6/05
6 cycles Xeloda/oxaliplatin/Avastin (NED after 2)
11/08 9x13mm right lower lobe lung nodule; removed via VATS 4/09
NED
6 cycles Xeloda + Avastin
Avastin only 10/09-5/11
Still NED 06/18

utahgal7
Posts: 14
Joined: Fri Sep 11, 2020 12:04 pm

Re: Am I panicking for no reason? Slight rise in CEA levels

Postby utahgal7 » Mon Oct 05, 2020 7:00 am

Thank you everyone! I really appreciate the kind words. It has helped with my anxiety.
02/20 Rectal Cancer Diagnosis
03/20 CEA 2.7 ST Radiation - 25Gy over 5 days
04/20 LAR surgery w/ ileostomy (only 6 lymph nodes retrieved)
04/20 T3N1M0
05/20 CAPOX (had to discontinue because Oxaliplatin caused temporary blindness in left eye)
06/20 CEA 0.9
08/20 Ileostomy reversal
09/20 CEA 1.4, CT chest/abdomen/pelvis; suspicious areas in liver
10/20 MRI liver; dx hemangioma

missnattlebee
Posts: 4
Joined: Tue Oct 06, 2020 11:30 am
Facebook Username: Natalie.Jeffers

Re: Am I panicking for no reason? Slight rise in CEA levels

Postby missnattlebee » Tue Oct 06, 2020 12:17 pm

Definitely would not worry. Your CEA is still in normal range.
I totally understand the anxiety!!!
40yr old single mom of 5
Diagnosed with stage IV cancer (Adenocarcinoma) in mid July due to metastases in the liver.
Sigmoidectomy on 7/28
3 of 17 lymph nodes tested positive and were removed
Malignancy - Negative
MSI - Negative
pT3
pN1B
Stage IIIB if M0 but of course it had metastasized in the liver which bumped me to Stage IV.
BRAF - Not Detected
KRAS - Not Detected
NRAS - Not Detected
Last CEA 8/20 - 7.5
Chemo Meds - Folfox (Oxaliplatin, Leuvovorin, 5FU) & MVASI

weisssoccermom
Posts: 5969
Joined: Thu May 10, 2007 2:32 pm
Location: Pacific NW

Re: Am I panicking for no reason? Slight rise in CEA levels

Postby weisssoccermom » Tue Oct 06, 2020 7:01 pm

Years ago, on a test that I had a good 10 years out, my CEA jumped and the doctors were perplexed. I was talking to my surgeon at the time and she had the same issue with one of her patients. (BTW...this ....keep reading....still happens today). She (surgeon) told me that oftentimes labs switch from one test to another. With the CEA test there are TWO different tests....Bayer and Seimens, and while they test for the same thing, they do so in different ways and use different assays.....all of which have different NORMAL ranges. Not saying this is what happened (it did with the surgeon's patient and with me)....but you should just check that the lab didn't switch testing protocols. It's been a long time since I have had a CEA test (it was never a good marker for me.....initial test was a 0.5 with a honking huge tumor) but my printed results that I got directly from the lab, ALWAYS said which protocol they used. It's something you should be aware of and look at.

Otherwise, like others have said, don't worry about that small of a jump that is still well within NORMAL limits. Mine used to jump all over the place. It's not one reading but the trend that is what you have to be looking for. I know, that's easy to say when the 'trend' is seemingly going up...but next time, it could go up more and then flatten or it could go down. You just have to wait for the next test....nerve wracking as it is.
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

I_will_fight
Posts: 40
Joined: Mon Jun 29, 2020 3:38 pm

Re: Am I panicking for no reason? Slight rise in CEA levels

Postby I_will_fight » Tue Oct 13, 2020 3:42 am

weisssoccermom wrote:
Otherwise, like others have said, don't worry about that small of a jump that is still well within NORMAL limits. Mine used to jump all over the place. It's not one reading but the trend that is what you have to be looking for. I know, that's easy to say when the 'trend' is seemingly going up...but next time, it could go up more and then flatten or it could go down. You just have to wait for the next test....nerve wracking as it is.


Love your signature weisssoccermom

"NED now and forever"

Hopefully, I too will add that to my signature one day!
46 yo male at DX from Spain
June 2020 - 6 cm T3N0M0 cancer on left colon
No evidence of liver mets, two milimetric dots in lung, 3 and 4 mm (currently not considered mets)
lymph nodes 0/37
MSH6 non expressed, other MMR proteins present
KRAS mt G13D
Vascular invasion: absent
LNI: absent
PNI: present
July 8th 2020 - 50 cm colon and spleen removed, clean margins, optimistic surgeon.
Aug 2020 - start of XELOX regime, four cycles.

User avatar
horizon
Posts: 1548
Joined: Tue Apr 12, 2011 10:10 pm

Re: Am I panicking for no reason? Slight rise in CEA levels

Postby horizon » Wed Oct 14, 2020 4:05 pm

I learned pretty rapidly that worrying over things such as this only does one thing: make you feel worse. Not criticizing because I did the same thing. I started learning to look at the "big picture" and getting past whatever shot term challenges were up next.
I'm just a dude who still can't believe he had a resection and went through chemo (currently 8 years NED). Is this real life?


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