It’s that time again - CEA check

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Koreysue
Posts: 153
Joined: Mon Apr 30, 2018 2:36 pm

It’s that time again - CEA check

Postby Koreysue » Thu Oct 17, 2019 1:17 pm

For me this never gets easier. CEA check on Monday.
I’ve put it off, now it’s been 4 months instead of 3. I had a terrible bout of bronchitis for a whole month and am worried that will increase the number. I’ve also had major family health issues coming in hot from every direction. I have been so stressed and busy with that, that my healthy habits have slipped. I have guilt over that.
Anyone else worry about every little action they take (or don’t take) ? Not enough walking/ working out that week, too much sugar, not enough greens, forgot to drink my green tea... it’s exhausting.
Just hoping I haven’t messed things up for myself.
Thanks for listening, I just need to get this off my chest sometimes... to people who understand the anxiety

Ksue
Diagnosed: June 2017 stage 3 colon cancer
Sigmoid colon, 2 nodes affected
CEA at diagnosis: 6
Sigmoid Colectomy and folfox (chemo complete January 31, 2018)
CEA 4/2018: 2.4
CEA 7/2018: 3.7
Colonoscopy 8/2018 clean
PET scan 8/20/18 NED (cea rise a mystery for now, doc said maybe all the smoke in my town from forest fires)
CEA 11/2018: 3.8
CEA 2/2019: 3.2
CT NED 6/18/2019 / CEA : 3.4
CEA 10/21/19: 3.2
CEA 3/9/20: 3.8
CT NED /CEA 6/17/20: 3.8

Punky44
Posts: 440
Joined: Mon Oct 01, 2018 4:29 pm

Re: It’s that time again - CEA check

Postby Punky44 » Thu Oct 17, 2019 6:41 pm

Totally feeling your anxiety too—my mom’s CEA check and CT scan is this coming Tuesday. I can’t stop thinking about it and obsessing over it. She’s also been sick with an upper respiratory thing the past week or so and isn’t totally over it. Worried that might affect things.

Hugs to you and I’ll be thinking of you Monday and praying for good news!
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
Latest update: 6/20–Clear CT, normal CEA

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

Koreysue
Posts: 153
Joined: Mon Apr 30, 2018 2:36 pm

Re: It’s that time again - CEA check

Postby Koreysue » Fri Oct 18, 2019 1:14 am

Thank you punky,
I’ll be thinking of your mom and you as well
<3
Diagnosed: June 2017 stage 3 colon cancer
Sigmoid colon, 2 nodes affected
CEA at diagnosis: 6
Sigmoid Colectomy and folfox (chemo complete January 31, 2018)
CEA 4/2018: 2.4
CEA 7/2018: 3.7
Colonoscopy 8/2018 clean
PET scan 8/20/18 NED (cea rise a mystery for now, doc said maybe all the smoke in my town from forest fires)
CEA 11/2018: 3.8
CEA 2/2019: 3.2
CT NED 6/18/2019 / CEA : 3.4
CEA 10/21/19: 3.2
CEA 3/9/20: 3.8
CT NED /CEA 6/17/20: 3.8

Beckster
Posts: 417
Joined: Thu Jan 12, 2017 3:01 pm
Location: New Jersey

Re: It’s that time again - CEA check

Postby Beckster » Fri Oct 18, 2019 5:12 am

You are not alone...CEA testing is my nemesis! It has never been stable since post surgery. I tried everything...from diet, exercise and yoga. The last rise, my cea went from 2.5 to 3.1. Even though my onc was not concerned, I was. I went on a plant based diet over the summer and found out that I had a tooth abscess that warranted a root canal in August. Apparently, the tooth had been infected for months until it reared its ugly head. After one month post root canal, my cea went down to 2.6. I dont know if this affected my levels, but I will find out when I retest in December.
57/F
DX:(CC) 10/19/16
11/4/16- Lap right hemi(cecum)
CEA- Pre Op (1.9), Pre Chemo (2.5)
Type: Adenocarcinoma
Tumor size:3.5 cm x 2.5 x 0.7 cm
Grade: G3 (path) G2 (pre-op)
TNM: T3N0M0/IIA
LN: 0/24
LVI present
Surgical margins: clear
MSS
12/27/2016 - Capeox, anaphylactic reaction
1/2/17 to 6/9/17- Xeloda monotherapy
6/17,12/17,6/18,12/18, 6/19, 12/19 CT Scan NED :D
CEA- 6/17- 3.6, 9/17- 2.8 12/17-2.8, 3/18-3.1, 6/18-3.0, 9/18 2.8, 12/18 2.5 3/19 3.1 6/19 3.1 9/19 2.6 12/19 2.8 6/20 3.0
Clear Colonoscopy 10/17, 11/19 :D

Koreysue
Posts: 153
Joined: Mon Apr 30, 2018 2:36 pm

Re: It’s that time again - CEA check

Postby Koreysue » Fri Oct 18, 2019 9:18 am

Beckster, that is interesting. My onc always says nothing else affects cea besides cancer and smoking, but it seems like others have experienced things that would prove otherwise. It will be interesting to see what your December test brings.
I have pretty severe gastritis, and the beginnings of peptic ulcers. I have noticed that my cea was lowest when I was taking meds for that.
Thanks for your reply!

Ksue
Diagnosed: June 2017 stage 3 colon cancer
Sigmoid colon, 2 nodes affected
CEA at diagnosis: 6
Sigmoid Colectomy and folfox (chemo complete January 31, 2018)
CEA 4/2018: 2.4
CEA 7/2018: 3.7
Colonoscopy 8/2018 clean
PET scan 8/20/18 NED (cea rise a mystery for now, doc said maybe all the smoke in my town from forest fires)
CEA 11/2018: 3.8
CEA 2/2019: 3.2
CT NED 6/18/2019 / CEA : 3.4
CEA 10/21/19: 3.2
CEA 3/9/20: 3.8
CT NED /CEA 6/17/20: 3.8

michelle c
Posts: 1898
Joined: Wed Dec 02, 2009 3:58 am

Re: It’s that time again - CEA check

Postby michelle c » Mon Oct 21, 2019 10:05 pm

Beckster wrote:You are not alone...CEA testing is my nemesis! It has never been stable since post surgery. I tried everything...from diet, exercise and yoga. The last rise, my cea went from 2.5 to 3.1. Even though my onc was not concerned, I was. I went on a plant based diet over the summer and found out that I had a tooth abscess that warranted a root canal in August. Apparently, the tooth had been infected for months until it reared its ugly head. After one month post root canal, my cea went down to 2.6. I dont know if this affected my levels, but I will find out when I retest in December.


I actually think that your CEA is stable. It has only fluctuated by about half a point which is really nothing. I was told that if I had my CEA tested in the morning and then again in the afternoon it would not be the same. It is normal to fluctuate within a point or so.
25 May 09 Dx with CC (sigmoid colon) 2 days after my 44th b'day
CEA prior to surgery 4.7
3 Jun 09 LAR - Stage III 3/10 lymph nodes
6 Jul - 10 Dec 09 12 cycles FOLFIRI
Genetic testing - inconclusive for Lynch
Jul 12 port removed & hernia repair

Koreysue
Posts: 153
Joined: Mon Apr 30, 2018 2:36 pm

Re: It’s that time again - CEA check

Postby Koreysue » Mon Oct 21, 2019 10:16 pm

Punky44 wrote:Totally feeling your anxiety too—my mom’s CEA check and CT scan is this coming Tuesday. I can’t stop thinking about it and obsessing over it. She’s also been sick with an upper respiratory thing the past week or so and isn’t totally over it. Worried that might affect things.

Hugs to you and I’ll be thinking of you Monday and praying for good news!


Just to update - my CEA was 3.2 so a little down than last time. I’ll take it!

I’ll be thinking of your mom tomorrow
Ksue
Diagnosed: June 2017 stage 3 colon cancer
Sigmoid colon, 2 nodes affected
CEA at diagnosis: 6
Sigmoid Colectomy and folfox (chemo complete January 31, 2018)
CEA 4/2018: 2.4
CEA 7/2018: 3.7
Colonoscopy 8/2018 clean
PET scan 8/20/18 NED (cea rise a mystery for now, doc said maybe all the smoke in my town from forest fires)
CEA 11/2018: 3.8
CEA 2/2019: 3.2
CT NED 6/18/2019 / CEA : 3.4
CEA 10/21/19: 3.2
CEA 3/9/20: 3.8
CT NED /CEA 6/17/20: 3.8

michelle c
Posts: 1898
Joined: Wed Dec 02, 2009 3:58 am

Re: It’s that time again - CEA check

Postby michelle c » Mon Oct 21, 2019 10:20 pm

Koreysue wrote:For me this never gets easier. CEA check on Monday.
I’ve put it off, now it’s been 4 months instead of 3. I had a terrible bout of bronchitis for a whole month and am worried that will increase the number. I’ve also had major family health issues coming in hot from every direction. I have been so stressed and busy with that, that my healthy habits have slipped. I have guilt over that.
Anyone else worry about every little action they take (or don’t take) ? Not enough walking/ working out that week, too much sugar, not enough greens, forgot to drink my green tea... it’s exhausting.
Just hoping I haven’t messed things up for myself.
Thanks for listening, I just need to get this off my chest sometimes... to people who understand the anxiety

Ksue


Your CEA looks fine to me. That “rise” is insignificant and a normal reading. I would have stressed about this too before but I’ve learnt a lot about CEA over the years. Any small rise, especially to the right of the decimal point is ok. It’s an upward trend that doctors look for. A test taken in the morning and then again in the afternoon would not be the same. Every three months seems too often when you are over two years out, especially with the anxiety it causes you. Six months might be better.
25 May 09 Dx with CC (sigmoid colon) 2 days after my 44th b'day
CEA prior to surgery 4.7
3 Jun 09 LAR - Stage III 3/10 lymph nodes
6 Jul - 10 Dec 09 12 cycles FOLFIRI
Genetic testing - inconclusive for Lynch
Jul 12 port removed & hernia repair

Koreysue
Posts: 153
Joined: Mon Apr 30, 2018 2:36 pm

Re: It’s that time again - CEA check

Postby Koreysue » Mon Oct 21, 2019 10:36 pm

michelle c wrote:
Koreysue wrote:For me this never gets easier. CEA check on Monday.
I’ve put it off, now it’s been 4 months instead of 3. I had a terrible bout of bronchitis for a whole month and am worried that will increase the number. I’ve also had major family health issues coming in hot from every direction. I have been so stressed and busy with that, that my healthy habits have slipped. I have guilt over that.
Anyone else worry about every little action they take (or don’t take) ? Not enough walking/ working out that week, too much sugar, not enough greens, forgot to drink my green tea... it’s exhausting.
Just hoping I haven’t messed things up for myself.
Thanks for listening, I just need to get this off my chest sometimes... to people who understand the anxiety

Ksue


Your CEA looks fine to me. That “rise” is insignificant and a normal reading. I would have stressed about this too before but I’ve learnt a lot about CEA over the years. Any small rise, especially to the right of the decimal point is ok. It’s an upward trend that doctors look for. A test taken in the morning and then again in the afternoon would not be the same. Every three months seems too often when you are over two years out, especially with the anxiety it causes you. Six months might be better.


Thanks for your reply, Michelle.
I would love to spread it out to 6 months- it makes me so stressed out.
Your are right, there I isn’t much of a rise. I just get hung up on why the number to the left is consistently upper level of normal. I’d love a 1.2 haha
But today it was steady... 3.2 and I’ll take it.
Ksue
Diagnosed: June 2017 stage 3 colon cancer
Sigmoid colon, 2 nodes affected
CEA at diagnosis: 6
Sigmoid Colectomy and folfox (chemo complete January 31, 2018)
CEA 4/2018: 2.4
CEA 7/2018: 3.7
Colonoscopy 8/2018 clean
PET scan 8/20/18 NED (cea rise a mystery for now, doc said maybe all the smoke in my town from forest fires)
CEA 11/2018: 3.8
CEA 2/2019: 3.2
CT NED 6/18/2019 / CEA : 3.4
CEA 10/21/19: 3.2
CEA 3/9/20: 3.8
CT NED /CEA 6/17/20: 3.8

Punky44
Posts: 440
Joined: Mon Oct 01, 2018 4:29 pm

Re: It’s that time again - CEA check

Postby Punky44 » Mon Oct 21, 2019 11:47 pm

Congrats on a steady number!
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
Latest update: 6/20–Clear CT, normal CEA

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

Claudine
Posts: 385
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: It’s that time again - CEA check

Postby Claudine » Tue Oct 22, 2019 10:01 am

Stability is great! I read in an article that a 20% rise should give some concern but you're far from that.
Wife of Dx 04/18 (51 yo). MSS, KRAS G12A
No primary (involuted?)
Lytic tumor L4 vertebrae, EBRT 04/18, SBRT 02/19
Resect small intestine 05/18 (no cancer - Crohn's)
Failed adjuvant Xelox
Folfiri + Avastin 03/19 to 01/20
6.7 cm left adrenal mass 03/19, successful resection 02/20
CEA since 03/19: high 58, low 3.2, now 4.4
Scan 03/19: Multiple small lung nodules up to 5mm
Scan 12/19: one 1mm stable nodule
PET 04/20 uptake by L4
L3-L4-L5 fusion surgery and residual tumor removal 05/20

boxhill
Posts: 555
Joined: Fri Apr 06, 2018 11:40 am

Re: It’s that time again - CEA check

Postby boxhill » Tue Oct 22, 2019 5:49 pm

You know, if your CEA went up because you were sick or not eating well, that means it had nothing to do with cancer, right? CEA level in and of itself is not harmful.

I'm actually glad CEA isn't a marker for me. One less thing to obsess about! :)
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 CT NED
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
Suspend treatment

Koreysue
Posts: 153
Joined: Mon Apr 30, 2018 2:36 pm

Re: It’s that time again - CEA check

Postby Koreysue » Tue Oct 22, 2019 7:14 pm

Boxhill,
Yes, I know... a CEA rise from a benign cause is good! It’s just the false alarm it causes when I see the rise- It does a number on me. I think because I had OCD (health focused) before even getting diagnosed , I have a hard time “letting it ride”.
Ksue
Diagnosed: June 2017 stage 3 colon cancer
Sigmoid colon, 2 nodes affected
CEA at diagnosis: 6
Sigmoid Colectomy and folfox (chemo complete January 31, 2018)
CEA 4/2018: 2.4
CEA 7/2018: 3.7
Colonoscopy 8/2018 clean
PET scan 8/20/18 NED (cea rise a mystery for now, doc said maybe all the smoke in my town from forest fires)
CEA 11/2018: 3.8
CEA 2/2019: 3.2
CT NED 6/18/2019 / CEA : 3.4
CEA 10/21/19: 3.2
CEA 3/9/20: 3.8
CT NED /CEA 6/17/20: 3.8

AmyG
Posts: 338
Joined: Tue Dec 25, 2018 8:08 pm

Re: It’s that time again - CEA check

Postby AmyG » Thu Oct 24, 2019 11:29 am

I'm so happy for you and your stability! Was it a weight off your shoulders or are you dreading the next check?
42 dx @ 9wks pregnant w/baby #8 8/18
Sigmoid colon resection 9/18
Adenocarcinoma, G2, T3N0M0..or so we thought
KRAS/BRAF wild
Liver biopsy is malignant, stage iv now boys!
Delivered healthy baby 3/19
FOLFOX + Avastin 5/19
CEA 167 to 24 after 4 rounds
Liver resection 8/28/19
NED!! CEA 2.3
CEA 5.8 idk wtf is up with that, but everything else is clear!
CEA 3.7 make up your damn mind...
CEA 1.5 that's a new low!

MistyBlu
Posts: 28
Joined: Wed Aug 21, 2019 7:26 am
Location: New York

Re: It’s that time again - CEA check

Postby MistyBlu » Thu Oct 24, 2019 1:01 pm

Koreysue wrote:Anyone else worry about every little action they take (or don’t take) ? Not enough walking/ working out that week, too much sugar, not enough greens, forgot to drink my green tea... it’s exhausting.
Ksue


Yes! I wanted to get a chocolate keratin treatment on my hair and of course, I'm reading into everything before I do it. So keratin contains formaldehyde...a known carcinogen. Cause cancer, feed cancer blah blah blah. I can't even get a protein treatment because it might cause cancer. Geez!
F, 49 at DX, Stage IIA
9/4/19 Right Hemicolectomy
PT3NOMO- Grade 2
Xeloda - 1,650mg (Oct19-May20)
CEA 10/22/2019 - 1.2ng/ml


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