The Colon Club

Hello,
This is the first time (well, technically second time, but I could not access my first account that I created in 2017) writing in this forum, but I have spent many hours reading it during the past 5 years and I always found hope.
My dear sister Maria (who is in Spain), was diagnosed with colon cancer with one liver metastasis in 2017. It has been a very tough road for her, bus she has always been positive. Two years ago, she had recurrence in liver and lungs (very small spots). She had excellent response to chemo (Folfori+Avastin) and since March of last year has been on maintenance (Avastin+ low toxicity chemo). Everything was working fine until a few months ago where I started noticing that CEA was slowing rising (always within the normal range <5). Last month rose up to 5.05 (slightly higher than normal <5), and after two weeks was retested and were were relieved to see the CEA down to 4.33 (normal <5). Now (a month later) came back to 6.9 (normal <5), and we are concerned again. In her previous recurrences, she always had CEA increasing, but this time was increasing for sometime and the decreased and then increased again (above normal range). Any thouhgs? she has an appoitment with Onc tomorrow and she has scheduled already a PET for next week Friday.

Having a PET scan is the right approach and I am glad it has already been scheduled. During recurrence of cancer, usually the CEA rises continuously. It is of some comfort to know that in the case of your sister, it has not been continuously increasing but kind of fluctuating and staying around 5.

CEA alone, as you know is never a good indicator for cancer recurrence or cure. In some people like me, the initial tumor and a lung recurrence did not cause CEA to rise above 0.5 but later it rose to high numbers during an abdominal recurrence. Some scientists attribute it to change in tumor biology. CEA can change due to non-cancerous infections also.

For now, waiting for the PET scan results and not worrying too much about the CEA is all we can do. Good luck.

Mine bounces around, (as you can see in my signature), but I have so far not have not had a recurrence. Hoping all is well for your sister.
Ksue

skb wrote:Having a PET scan is the right approach and I am glad it has already been scheduled. During recurrence of cancer, usually the CEA rises continuously. It is of some comfort to know that in the case of your sister, it has not been continuously increasing but kind of fluctuating and staying around 5.

CEA alone, as you know is never a good indicator for cancer recurrence or cure. In some people like me, the initial tumor and a lung recurrence did not cause CEA to rise above 0.5 but later it rose to high numbers during an abdominal recurrence. Some scientists attribute it to change in tumor biology. CEA can change due to non-cancerous infections also.

For now, waiting for the PET scan results and not worrying too much about the CEA is all we can do. Good luck.

Thank you very much for your reply and suggestions. My sister met her ONC yesterday, and he said that these fluctuations in CEA (up, down and up again) mean nothing. He suggested to wait a month more and retest again, but since my sister has already scheduled a PET (and her 3 month TAC tests was in a few weeks), he said ok. She has her PET appointment for next week Friday and next ONC visit with PET results on Aug 19. I will try not to worry too much meantime.
Best wishes,
Patricia

Koreysue wrote:Mine bounces around, (as you can see in my signature), but I have so far not have not had a recurrence. Hoping all is well for your sister.
Ksue

Hi Ksue,
Thanks for your reply. I checked your signature and I saw that your CEA also bounces a lot. I am wondering if your lab uses a 3 scale (<3 is normal values) or 5 (<5 is a normal value) scale for normal CEA. My sister is now getting results for a <5 scale, but the other lab she used to go had a 3 scale.
Best wishes,

Luna18 wrote:

Koreysue wrote:Mine bounces around, (as you can see in my signature), but I have so far not have not had a recurrence. Hoping all is well for your sister.
Ksue

Hi Ksue,
Thanks for your reply. I checked your signature and I saw that your CEA also bounces a lot. I am wondering if your lab uses a 3 scale (<3 is normal values) or 5 (<5 is a normal value) scale for normal CEA. My sister is now getting results for a <5 scale, but the other lab she used to go had a 3 scale.
Best wishes,

My lab considers 0.0-3.4 normal range (for non-smokers)

My CEA tests drive me absolutely bonkers. I am goin in a month for a recheck in a month because mine was 3.7 in April and now 3.8. It has been higher than that and lower, with clear scans. Weird.

Koreysue wrote:

Luna18 wrote:

Koreysue wrote:Mine bounces around, (as you can see in my signature), but I have so far not have not had a recurrence. Hoping all is well for your sister.
Ksue

Hi Ksue,
Thanks for your reply. I checked your signature and I saw that your CEA also bounces a lot. I am wondering if your lab uses a 3 scale (<3 is normal values) or 5 (<5 is a normal value) scale for normal CEA. My sister is now getting results for a <5 scale, but the other lab she used to go had a 3 scale.
Best wishes,

My lab considers 0.0-3.4 normal range (for non-smokers)

My CEA tests drive me absolutely bonkers. I am goin in a month for a recheck in a month because mine was 3.7 in April and now 3.8. It has been higher than that and lower, with clear scans. Weird.

Thanks again for your prompt response. It means a lot to me, because your CEA bounces a little bit higher than the normal range, but you have been there for quite some time with clear scans, which at the end it is the most important.
Best wishes,

I think you're like me, CEA is not a good indicator of anything. I met with my oncologist yesterday and she pretty much told me that.
Yours is around 3.4. When you had full blown T3 it was 6.1.
Check what might be causing inflammation in your life, you event went to 4.6 in 2020 and nothing happened from that.

Maddening for sure, but seems unrelated.

CEA can be a sign of inflammation or even liver distress. Obviously a rising CEA trend should be a concern.

Has your sister considered Signatera? It is available in Spain and it is meant to be more sensitive than CEA (and 100% specific)

Best regards

Javi

I_will_fight wrote:CEA can be a sign of inflammation or even liver distress. Obviously a rising CEA trend should be a concern.

Has your sister considered Signatera? It is available in Spain and it is meant to be more sensitive than CEA (and 100% specific)

Best regards

Javi

Hi Javi,
Is Signatera the same as liquid biopsy? My sister's ONC said that liquid biopsy is only available for lung cancer in Spain. Do you know where we can ask more information about it?
Thanks so much,

Yes, I am creeping up on 5 years.
Sending love to your sister and you,
KSue

MadMed wrote:I think you're like me, CEA is not a good indicator of anything. I met with my oncologist yesterday and she pretty much told me that.
Yours is around 3.4. When you had full blown T3 it was 6.1.
Check what might be causing inflammation in your life, you event went to 4.6 in 2020 and nothing happened from that.

Maddening for sure, but seems unrelated.

Yea, I really don’t know why he is still even having me do cea tests. I am always trying to solve the mystery of why it isn’t as low a some people I see on here, and why it bounces so much. The only thing I can think, is that it is from gastritis which I do have. Who knows ?!
Ksue

Luna18 wrote:

I_will_fight wrote:CEA can be a sign of inflammation or even liver distress. Obviously a rising CEA trend should be a concern.

Has your sister considered Signatera? It is available in Spain and it is meant to be more sensitive than CEA (and 100% specific)

Best regards

Javi

Hi Javi,
Is Signatera the same as liquid biopsy? My sister's ONC said that liquid biopsy is only available for lung cancer in Spain. Do you know where we can ask more information about it?
Thanks so much,

Yes it is one of the several liquid biopsies.

It is only available privately, It costs quite a bit, 3000 EUR for the first extraction and then 1000 for each subsequent test, but I think it is useful.

The major problem is that a bit of cancerous tissue is required, and if your sister´s onc does not approve it then you will have to get your hospital to release the tissue to another hospital where this can be performed, then they need to send a sambple of this issue to the lab. And then I guess they could return the paraffined blocks to your original hospital.

I can get you in touch with my oncologist (who reluctantly approved my test) and to the Signatera Rep in Spain.

Send me PM if you want and we can chat

Koreysue wrote:
Yea, I really don’t know why he is still even having me do cea tests. I am always trying to solve the mystery of why it isn’t as low a some people I see on here, and why it bounces so much. The only thing I can think, is that it is from gastritis which I do have. Who knows ?!
Ksue

Well, yeah, numerous papers about gastritis causing rise in CEA, eg:
https://www.ejmaces.com/ejmaces-articles/the-diagnostic-value-of-tumor-markers-and-endoscopy-in-patients-with-gastric-disorders.pdf

My sister had the PECT/TAC done last Friday. In a few day we will get the results. I will keep you informed.
Best wishes,