1. < Colorectal Cancer

Had colon cancer and now CEA is rising: Scared

Posted by segerfan @segerfan, Apr 26, 2022

Colon cancer 10 year and now raised CEA
Just had a colonoscopy and it was fine. Went for my yearly check up and CEA is evaluated to 7. no weight loss, no loss of appetite. I am under a great deal of stress, family, marriage lose of a grandchild. Went back to vaping. Doctor is going to do a ct scan. I am scared to death.

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Moderator
Colleen Young, Connect Director | @colleenyoung | Jun 12, 2024
In reply to @lida55 "Thank you for your kind attention He did petscan 2days ago and we have to wait..." + (show)
@lida55

Thank you for your kind attention
He did petscan 2days ago and we have to wait for results about one week

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@lida55, any update?

REPLY
2 replies
lida55 | @lida55 | May 31, 2024

Thank you for your kind attention.
He did petscan 2 days ago and we have to wait for the result about one week.

REPLY
lida55 | @lida55 | May 31, 2024
In reply to @colleenyoung "@lida55, as @roywalton mentioned, you are not alone. Other members have worried about rising CEA levels...." + (show)
@colleenyoung

@lida55, as @roywalton mentioned, you are not alone. Other members have worried about rising CEA levels. You may be interested in reading these related discussions:
- CEA up - guessing not good
https://connect.mayoclinic.org/discussion/cea-up-guessing-not-good/
- Had colon cancer and now CEA is rising: Scared
https://connect.mayoclinic.org/discussion/colon-cancer-10-year-and-now-raised-cea/
- Worried about rising CEA levels
https://connect.mayoclinic.org/discussion/cea-levels/
Have you learned more with the results of the additional imaging tests?

Jump to this post

Thank you for your kind attention
He did petscan 2days ago and we have to wait for results about one week

REPLY
1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | May 31, 2024
In reply to @lida55 "Thank you for your kind reply. I am too worried because in many sites and essays..." + (show)
@lida55

Thank you for your kind reply.
I am too worried because in many sites and essays on internet i've read
that even steady small increases within normal ranges is also a sign of
recurrence let alone in the next cea test it goes over normal ranges. I
dont know.
Then we live in iran, i dont know if they have that DNA test you mentioned
and i dont think we can have access to sample. I have to ask.
But for now yes we rely on CT and this week's PET SCAN.

Thanks a lot for your help

Jump to this post

@lida55, as @roywalton mentioned, you are not alone. Other members have worried about rising CEA levels. You may be interested in reading these related discussions:
- CEA up - guessing not good
https://connect.mayoclinic.org/discussion/cea-up-guessing-not-good/
- Had colon cancer and now CEA is rising: Scared
https://connect.mayoclinic.org/discussion/colon-cancer-10-year-and-now-raised-cea/
- Worried about rising CEA levels
https://connect.mayoclinic.org/discussion/cea-levels/
Have you learned more with the results of the additional imaging tests?

REPLY
1 reply
roywalton | @roywalton | May 25, 2024
In reply to @lida55 "Thank you for your kind reply. I am too worried because in many sites and essays..." + (show)
@lida55

Thank you for your kind reply.
I am too worried because in many sites and essays on internet i've read
that even steady small increases within normal ranges is also a sign of
recurrence let alone in the next cea test it goes over normal ranges. I
dont know.
Then we live in iran, i dont know if they have that DNA test you mentioned
and i dont think we can have access to sample. I have to ask.
But for now yes we rely on CT and this week's PET SCAN.

Thanks a lot for your help

Jump to this post

If you don't have access to CTDNA or Signatera (ask your oncologist), then just trust the standard of care in your area, and in your case the CT or PET. Again, The concept of assay variability is the issue here.... because a CEA value of 1 2 3 or 5 is really the same number, it's only one that number climbs to 10 or 20 is it meaningful at all. I believe a good oncologist would not act on a CEA value alone.

REPLY
1 reply
lida55 | @lida55 | May 25, 2024
In reply to @roywalton "Hi - this was covered in a previous thread. Do not rely too much on CEA...." + (show)
@roywalton

Hi - this was covered in a previous thread. Do not rely too much on CEA. Mayo Clinic doesn't even consider it as an issue unless it hits 20. Your numbers are still very low. , so I suggest you shouldn't be concerned. Ask her oncologist about the CTDNA which is more predictive and even better is the new Signatera tumor Informed DNA test, (which is made from your tumor but they may not have saved it), and which is covered by Medicare. Signatera can predict recurrence 10 months in the future. If you can't do these tests just go ahead with the CT He's probably going to be fine.

Jump to this post

Thank you for your kind reply.
I am too worried because in many sites and essays on internet i've read
that even steady small increases within normal ranges is also a sign of
recurrence let alone in the next cea test it goes over normal ranges. I
dont know.
Then we live in iran, i dont know if they have that DNA test you mentioned
and i dont think we can have access to sample. I have to ask.
But for now yes we rely on CT and this week's PET SCAN.

Thanks a lot for your help

REPLY
2 replies
roywalton | @roywalton | May 25, 2024
In reply to @lida55 "Hi. My husband 40 ys. 3 years ago had colon cancer 3b. His cea was 84..." + (show)
@lida55

Hi. My husband 40 ys. 3 years ago had colon cancer 3b. His cea was 84 and after surger and chemo reached to 1. After 1.5 years his cea started to elevate from 1 to 1.1 and 1.3 and 1.9, 2.2 2.5,2.9 and one month ago was 4. I am terrified. We did colonoscopy and removed two polyps and sono and CT. Apparently there is nothing wrong. But Dr recoomend to do PET also and we are waiting to do it. But for now do you think his cancer is coming back???? I am soooo worried

Jump to this post

Hi - this was covered in a previous thread. Do not rely too much on CEA. Mayo Clinic doesn't even consider it as an issue unless it hits 20. Your numbers are still very low. , so I suggest you shouldn't be concerned. Ask her oncologist about the CTDNA which is more predictive and even better is the new Signatera tumor Informed DNA test, (which is made from your tumor but they may not have saved it), and which is covered by Medicare. Signatera can predict recurrence 10 months in the future. If you can't do these tests just go ahead with the CT He's probably going to be fine.

REPLY
1 reply
lida55 | @lida55 | May 25, 2024
In reply to @lida55 "Hi. My husband 40 ys. 3 years ago had colon cancer 3b. His cea was 84..." + (show)
@lida55

Hi. My husband 40 ys. 3 years ago had colon cancer 3b. His cea was 84 and after surger and chemo reached to 1. After 1.5 years his cea started to elevate from 1 to 1.1 and 1.3 and 1.9, 2.2 2.5,2.9 and one month ago was 4. I am terrified. We did colonoscopy and removed two polyps and sono and CT. Apparently there is nothing wrong. But Dr recoomend to do PET also and we are waiting to do it. But for now do you think his cancer is coming back???? I am soooo worried

Jump to this post

I wanted to add this process from cea from 1 to 4 took 1 year and about 3 months to reach to 4 and now after 1 month i dont know what the cea number is.
Also i wanted to apologize for my engliah if there is mistake beacause i dont live in US.

REPLY
lida55 | @lida55 | May 25, 2024

Hi. My husband 40 ys. 3 years ago had colon cancer 3b. His cea was 84 and after surger and chemo reached to 1. After 1.5 years his cea started to elevate from 1 to 1.1 and 1.3 and 1.9, 2.2 2.5,2.9 and one month ago was 4. I am terrified. We did colonoscopy and removed two polyps and sono and CT. Apparently there is nothing wrong. But Dr recoomend to do PET also and we are waiting to do it. But for now do you think his cancer is coming back???? I am soooo worried

REPLY
2 replies
Moderator
Colleen Young, Connect Director | @colleenyoung | Nov 4, 2023
In reply to @tirse "Had sigmoid colon cancer in 2013. CEA was 15.7 pre-op. Stage 2, no lymph node involvement...." + (show)
@tirse

Had sigmoid colon cancer in 2013. CEA was 15.7 pre-op. Stage 2, no lymph node involvement. One lymph node was in question for 2 weeks, after which they determined that it was negative, (see pic). Oral Xeloda for 9 months. CT's clear. CEA dropped to 0.4. Fast forward to 2023, have some weight loss, around 10 lbs due to eating less. CEA has very slowly crept up to 2.0. Have had 4 consecutive rises in the past 2 years. Still within normal parameters, should I be concerned ?

Jump to this post

@tirse, I think you will appreciate the responses from fellow members in these related discussions:
- Had colon cancer and now CEA is rising: Scared
https://connect.mayoclinic.org/discussion/colon-cancer-10-year-and-now-raised-cea/
- Worried about rising CEA levels
https://connect.mayoclinic.org/discussion/cea-levels/
I completely agree with @rjjacobsen, that your rise in CEA shouldn't be cause for alarm, but definitely something to monitor and to discuss a plan with your oncologist. When is your next follow up appointment?

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