The Colon Club

Hello All,

Things have been improving after ileostomy reversal, going much less, still hate the unpredictability when I have to go, but it's been better.

Just had my NM PET/CT SKULL-THIGH and MRI done. All came back clear and good. So still NED. My CEA was 1.2 when I did the test in September, This time it is 3.2 and even though all came back fine, with PET/MRI I am feeling a bit nervous and concerned. My oncologist after I emailed him and asked what it was, he released it, and that usually means there not concerned.

Anyone else seen this fluctuation. I am taking Metamucil daily and probiotics and immodium, no sure if that would cause any of this. From Scanxiety to CEA Anxiety, ugh...

I understand your concern, but my oncologist told me that when CEA is within normal range, they are taught to not be concerned at all, even if it has gone up. So, things are most likely fine, and as you say if your onc was concerned, he wouldn't have just mailed you the results.

Take care,

I just received my bloodwork today...it has been 1/ 1/2 years from chemo and finally is came down to prechemo level-2.5 using the Roche assay. One thing that I noticed is that the drops over the past year seemed to correspond to my fasting glucose level. I am prediabetic but the chemo seemed to make it go array. I am struggling with getting it in normal range, which it was before starting chemo. When I was first diagnosed,my CEA was 1.9 and the day of my first chemo, it was 2.5. I am continuing to work on my blood sugar and hope that it continues to drop with diet and exercise.

Bloodwork
Fasting 116- 3.0
Fasting 111- 2.8
Fasting 109-2.5

I do remember reading that CEA levels are affected by fasting glucose levels. Maybe this might explain why some people flucuate. When I see my onc on Monday, I am going to ask him.

My CEA went up because I was walking a lot (100 miles/week). Oncologist was concerned and ordered a scan but nothing. It came back down when I decreased the walking. There are some other known things that increase it too.

Wow Mike, I bet the 3.2 and 4.5 made gave you a bit of anxiety. It is so nerve racking doing these surveillance things. The PET/CT and MRI process and waiting for the results is so stressful. I might be going through the same fluctuations. I have been more active lately but not actually working out, but more busy moving around etc....I don't think Metamucil, Imodium or probiotics would cause any changes, would it? My oncologist said its not specific on what would affect changes, but he said we will keep on eye on it. He didn't seem to concern but he said he will go over it more with me when I see him on the 19th. He was very happy with my MRI/Pet results.

CEA checks make me incredibly nervous. My number is up, but has stayed basically the same for 4 months. My CT and PET in august 2018 were clear. My onc says that great that there was no big change in 4 months.
My dr. doesnt offer much about the cause of elevation. I’ve looked up a lot of stuff about it, and it does seem that there are reasons it can be elevated that are not cancer related. Stomach ulcers, gastritis, tooth decay, thyroid issues, etc.
I know it’s hard not to worry.
Korey

So I met with my Doctor today and we discussed the CEA and he wasn't very concerned about it, but he said we will keep an eye on it. Then I told him would my surgery have affected it for Ileostomy reversal in October. He said, OH, I forgot about that and proceeded to say, that most likely is the reason why is went up. Any surgery done in the GI area will cause CEA to go up. So he said let's see what it comes back when I do it again in 3 months. Just wanted to let you guys know.

Great .Pleased for you .
Stu

Just got CEA results and it came back at 11.4 and of course I am stressed. I really hate this, gives me so much anxiety.

Scans were already prescheded for March 6 and 8 pet and mri. Waiting for a call from oncologist see if he wants to move them up. It could be a false positive but I don’t know.

My mum’s has popped up too ! Such a pain but she scanned well just six weeks before so not going to react just yet plus they have plateaued with a .3 drop which I guess is not much but we will take it none the less .
I am thinking it’s a gastric issue or inflammatory.
If not we are on to it before it’s got a chance .

It’s nothing short of anxiety inducing .
The hospital is horizontal about it and I guess they have the overview we don’t . I read some research on false positives causing spikes and it can take a few tests to drop down . It also seems pretty common . I guess that’s why it has limited value .
Hope it drops soon .
Stu

Thanks for the post Stu. I am hoping its nothing and just false positive or something else. I read this article and it seems its a big thing with colorectal cancer patients. I spoke to my onc on the phone and we were talking how everything was perfectly clear with PET and MRI in December. But he said if its a liver spot, they can ablate if something shows up, so he is staying positive.

http://www.ascopost.com/issues/august-1 ... al-cancer/

I will keep you guys posted.

Rikimaroo

Thanks for that . From what I am reading it’s about 50% false positives .
My mum’s CEA is so strange as it sits higher anyway and only pops up a little when there’s a met . In all 25 scans she has never had a trending upwards CEA without it showing up on her images . Your images sound good too .

Your oncologist is so right . My mum’s lung met was monitored from 2 mm, at 7 mm it was whipped out and on with life . However the psychological effects of all the testing take a bit more digesting . It truly is a chronic condition that is well managed .

Holding on to the clear images . Glad you had good scans recently too . That’s very reassuring.
Stu

It is so hard to stay positive through all of this. So many things run through my mind.

Hi ,
How are you holding up ?
My mum is getting scanned in two weeks . I thought they would just run another CEA test , Bit of a surprise there .
She has an excellent Oncologist and I think she knows we are all over everything like a rash !!!
Can’t complain about the care but scans are rubbish !
Take care,

Stu

Rikimaroo and Stu,
Good Luck with the upcoming scans!
Waiting for results is