elevating CEA negative pet scan

[Big Sister]

This is my first post. My sister is one+ years out from a liver resection and chemo. That came almost 1 year after her initial diagnosis, surgery and first chemo. She has weathered all the above valiantly. This past year her CEA has gradually elevated and she she has had two PETscans and both did not light up anything. Last week her blood work indicated a significant rise in her CEA and her oncologist has requested another PET. From other posts it appears the CEA test is not particularly reliable. Are there other factors which influence a CEA? With an elevating CEA can one take realistic comfort in a negative PET scan?
My sister's medical history is long and complicated and her cancer experience has been a rocky road. I would appreciate any insights anyone might be willing to share. If this post is repetitive I apologize. I am not particularly forum savvy so please indulge me.

[Ashlee H.]

I think the first thing you need to know is the CEA is reliable test for your sister? What was her CEA before and after her resection?
I can only share with you my own experience. The CEA is a good test for me. I also get tested for CA 19-9, and that started to rise before by CEA started going up.
In June my CA 19-9 started to go up, but my scans were clear. We tested every two weeks, and the CA 19-9 continued to rise, and then the CEA started to rise. I'm at 14.9 right now on the CEA. Finally, a tumor showed up on the PET/CT. It took four months from the start of my elevation in tests to the tumor actually lighting up on the scan. I had expected it to show up in my liver or colon...but it is in my body cavity. I kept hoping there were other reasons for the rise in the blood tests, but for me, they are accurate and something I will always listen to in the future. I'll be going back on chemo and will have surgery (possibly HIPEC) in the future. Good luck to your sister.

Ashlee

[Terry]

CEA is not reliable for everyone. What has her trend been? Is it all over the place, up and down or does it go down and stay down with treatment, what was it before? If it was in the normal and only went up tenths of points that can happen. If it was at 2 and went up to 4 and the 6 and so on it could be the cancer. Inflammation of certain types can also cause CEA to rise, exactly inflammations of what, I'm not even sure if they know. GI problems is one and mine went up once last year shortly after I had my flu shot, I'm not 100% sure that was what caused it but the timing seemed to.

Getting another scan sounds like a good plan.

My prayers are with her.
Terry

[daddys1]

As they said for some people is does not, for my dad when it rose.... the cancer was back. If I am remembering correctly the first scan he had did not show a reaccurance, but it kept creeping up so they checked again, and a spot showed up on the liver and lung. Maybe for your sister it is just something else going on, I have read there are several things that can make it rise, in my dads case it had jumped up to 76 so we all had a feeling it was the cancer again. Good luck to her.

[SkiFletch]

Agreed, following CEA over a longer period of time is the only way to know if it's a relaible marker. And even still, artifacts do happen. As Terry mentioned, inflamation does have a known effect on it. It will also be harder to read/use in smokers

[Smethport]

SkiFletch: I hope you have a beautiful day for your wedding. You certainly deserve much happiness and your house sounds like it is going to be beautiful. You are really a strong person - must be those rough Buffalo winters that has made you tougher! I can say that because I am from beautiful Buffalo also.

[Big Sister]

Thanks everyone for your insights. I will have my sister check with her doctor as to what her CA 19-9 status is. I do know that her CEA has tended to yo-yo. I was interested in the impact of inflammation. I will follow up on that. She still complains of persistent abdominal pain at the sight of her incision from the liver surgery. Which when your numbers are elevating is particularly difficult to ignore.

[Bev G]

Hi Big Sister:

I am sorry your sister and you are going through this hard time. The pain around her resection incision could very likely be due to operative adhesions and is unlikely to be the cancer. Of course I'm not a doctor (am a nurse of 30+ years though) and that is my thought, for what's it's worth. Liver resection is a LOT of surgery, as you know.

I think Ashlee was told when her markers went up that it could take 3-6 months for whatever was causing the elevated markers to show up on the scan. I sure had never heard that, and was actually fairly horrified by that news. As you saw from her post, her markers were up for awhile before the tumor showed up in her abdominal cavity. CANCER DOES NOT PLAY FAIR! Guess that's why we all hate it so much.

I'm wishing you and your sister the very best, Bev

[SamT]

Have had 3 recurrences of liver mets. Weekly blood testing has allowed me to build a math model to predict CT scan recurrence based on CEA and bilirubin levels (appears I have a small tumor in the bile duct). 2-4 months after both my biliurubin and CEA get into the DANGER ZONE a tumor appears on a CT scan.

The precision of CT scans is a few millimeters (mm); I suspect similar precision on PET -- that's billions of cells. It appears that for some people these blood tests respond to smaller cancer cell populations -- so they have a great screening test. Problem is the onc's wont act on blood tests -- they wait for growth to be sufficient for scans.

There's an FDA-approved test for CRC called CIRCULATING TUMOR CELLS (Quest labs) that can be used in addition to CEA and CA 19-9.