The Colon Club

I had a CT scan today with oral contrast (shortage of IV contrast) scan was clean, my CEA is elevated. It has never gone above 4 but has steadily increased over the last 3 visits. In the past she said don’t worry as CEA isn’t an indicator for me, today it was 5.7. I am hoping it’s an anomaly. I’m meeting with my doctor tomorrow. Does anyone have any thoughts?

Well technically I think you’d meet some peoples’ criteria for a review, which is 3 consecutive increases with one of those being above 5.7. However a ‘review’ in this case usually means imaging, which you’ve done and all was good - so I’d say in this case it’s good news! As you now doubt know CEA can bounce around for many reasons - I think the key now would be to keep a close eye on it and consider more/earlier investigations if the trend continues.

Have you ever done ctDNA / Signatera testing?

Rock_Robster wrote:Well technically I think you’d meet some peoples’ criteria for a review, which is 3 consecutive increases with one of those being above 5.7. However a ‘review’ in this case usually means imaging, which you’ve done and all was good - so I’d say in this case it’s good news! As you now doubt know CEA can bounce around for many reasons - I think the key now would be to keep a close eye on it and consider more/earlier investigations if the trend continues.

Have you ever done ctDNA / Signatera testing?

Thanks for the response. I haven’t done any testing other than testing of the tumor. My oncologist felt it was too late to do signatera (I forget the exact reason).

Dennyp wrote:My oncologist felt it was too late to do signatera (I forget the exact reason).

Interesting, could be perhaps because there is no fresh tumor tissue to test - but ctDNA testing is generally done by blood test anyway. If they wanted genomics to compare against you would likely have stored tissue somewhere.

My oncologist says “We don’t treat blood tests, we treat images.”

I think this can be a particularly deficient strategy for LN. My wife's LN were greatly undersized and numerically misunderstood on scans, images (hi res on a new 128 slice CT and then PET+CT) vs physical reality, despite a lot of skill amongst 4+ radiologists that read them for us and the best surgical teams.

Lest I sound bitter, not at all - I exploited these differences and misconcenptions to get my wife a second surgery, as multiple para-aortic LN were normally classed as inoperable then. Whereas the surgeon was shocked by the actual conglomerated mass(es) and post-op with pathology. The principal surgeon subsequently thought the LN operation was likely going to "be a waste of time" without early chemo at 5days (We were faster at 24 hr). Our blood work for the previous year was spot on for the number of major LN (~2 cm) and their relative sizes. Not so much for hi res CT plus a PET/CT.

I would do the the Signatura, and the other blood tests I've mentioned previously to get some idea where you are.
Reporting the liver panels and broader inflammation panels gives some idea of interferences, and sometimes, cancer.

"Std" cancer monitoring on blood always reminds me of someone I knew in college.
She had breast cancer, where "std" practices for "curative" post-op blood monitoring were (now? vs 2003-5) even more lax.
By the time drs finally pulled blood markers a year or so later, her CEA (a secondary marker in BrCA) was almost 400, as well as a disaster in the regular BrCA markers.

The plan is to do another CEA in a month. If it’s still elevated we’ll do a PET scan.

Yes to the PET. My husband had repeatedly “clear” CT scans with very elevated CEA until a PET revealed a rectal tumor - those are apparently difficult to see on CTs; had he gotten a PET sooner, it would have been smaller and easier to deal with...
Good luck, I hope it’s a fluke and the CEA drops back down!

My son's been doing great. CT earlier this year and colonoscopy were all clear. Latest CEA up to 1.5 from 0.9. Bothersome to me, not too much to him. His onco is following him closely and ordered another CT. We'll go from there.

my cea was .8 and kept rising it is a sign that cancer is growing. Not trying to scare you but usually that's what it means. Scans are king thought and until something shows nothing to worry about. If your CEA has been a good indicator for you and its creeping up that means your cancer is growing typically. If you CEA is not a good indicator for you I would ignore it.

Rikimaroo wrote:my cea was .8 and kept rising it is a sign that cancer is growing. Not trying to scare you but usually that's what it means. Scans are king thought and until something shows nothing to worry about. If your CEA has been a good indicator for you and its creeping up that means your cancer is growing typically. If you CEA is not a good indicator for you I would ignore it.

Yup, that is my concern. I’m holding onto hope because when I had a huge tumor that obstructed my colon my CEA never rose above 4. When I had a recurrence it didn’t go above 3.5. Also the same time my CEA rose to 5.7, I had a clean scan, although it was with oral contrast not IV contrast.

So it can be said CEA has never been a good marker for me, but as we all know the nature of our individual disease can change. I suspect my next CEA results will not be favorable, but I will remain optimistic.

When my cancer intially started I think my CEA was 32 and it was in my rectum only, once it went to my liver it shot up to 600, it started going down after getting on treatments, etc..So with that being said, your CEA based on your last statement probably is not a good indicator which is a good thing LOL.. I hate CEA anxiety.

Rikimaroo wrote:When my cancer intially started I think my CEA was 32 and it was in my rectum only, once it went to my liver it shot up to 600, it started going down after getting on treatments, etc..So with that being said, your CEA based on your last statement probably is not a good indicator which is a good thing LOL.. I hate CEA anxiety.

Thanks, I’m probably making myself nuts about nothing! I hate living in 3 month blocks!!

We’ll, my CEA increased from 5.7 to 6.6 in one month, I’m guessing that’s pretty bad news. Meeting my doctor tomorrow.

Hi Dennis,
Sorry about the increase... It's so nerve wrecking
One thing I'd ask your doc is whether you should get a PET scan instead of the usual CT. My husband had a series of "clear" CT scans despite high CEA values, and it took a PET to find a tumor in his rectum - it was most likely there before but wasn't detected.

Claudine wrote:Hi Dennis,
Sorry about the increase... It's so nerve wrecking
One thing I'd ask your doc is whether you should get a PET scan instead of the usual CT. My husband had a series of "clear" CT scans despite high CEA values, and it took a PET to find a tumor in his rectum - it was most likely there before but wasn't detected.

Hi Claudine,

Yes, that’s the plan. We had agreed that if the CEA continued to rise I would get a PET scan. Was you husbands tumor in a new location or was it a recurrence?