CEA freak out

[Lara239]

okay, so I am completely freaked out as usual (again) like everyday since this horrible journey began. I wish sometimes they did NOT have online portals for bloodwork so I would not have to see them and get upset. My husband's CEA level was 1.9 exactly two months ago and now it is at 3.1. He is on his 6th round of FolFox so now I am worried his cancer is growing of course. They did tell us it can go up artificially during treatment so I am hoping that is what it is but it has been like this:
4.4- before surgery
1.3- 6 weeks after surgery
1.9 after first two chemo treatments
3.1 now after 6 treatments

my questions are:
1. Do I need to be worried or is this normal?
2. Why has nobody called us to discuss it?

Help!

[Ashlee H.]

As many here will tell you, it is not unusual for the CEA to go up while undergoing treatment. ONC's normally don't get concerned unless it is over 5. At this point, you don't even know if the CEA is a good marker for him since it wasn't that high when he was DX. Mine was 45 at DX, and many have it in the 100's, and a few here in the thousands. Doctors don't treat on CEA alone. Try not to get hung up on this number at this point in treatment. If it was above 10, there might be a need to worry, but right now, keep the course and see what it is next time.

[CRguy]

1. Do I need to be worried

...your choice really. If the online portals get you upset...don't read them. Wait until you can talk to your Docs and ask questions in person.

....or is this normal?

yes, they told you and I agree...markers can increase as a result of treatments.

2. Why has nobody called us to discuss it?

They may not be as worried about it as you are. Why not call them ? You deserve to have the answers you seek and the results of the tests explained.


Breathe IN....... breathe OUT...... repeat as necessary.

Always on the Journey
Best wishes and Cheers !
CRguy

[jdepp]

My husband's CEA level was 1.9 exactly two months ago and now it is at 3.1. He is on his 6th round of FolFox so now I am worried his cancer is growing of course. They did tell us it can go up artificially during treatment so I am hoping that is what it is...

Personally, I would take it seriously but not freak out. The practical question is whether or not you can know anything about the cause of this fluctuation: it might be tumor kill-off, it might be tumor progression, it might be nothing (it's still within the normal range after all.)

At this point a scan would give good information if (and only if) there were tumor progression enough to be visible on imaging. In that case you would 1) want to know it! and 2) change chemo regimens.

So.... I would follow CRguy's advice and call up the onc to discuss 1) the timing of the next scan and 2) the possibility of having another CEA test be done at the next chemo. If it comes back markedly higher, then you might want to scan.

My guess is that the onc will acquiesce to another CEA test in a couple of weeks and want to go from there.

One more practical thing I'd do: after calling the onc & formulating a plan, I'd ignore the entire situation until after the holidays.

Best wishes, jdepp

[hannahw]

This may sound harsh, but CALM DOWN! I say this with the greatest compassion possible as I understand how it is to feel tethered to the ups and downs of various blood draws. But you're making a mountain out of a molehill here. To add another metaphor to the pile, this is a marathon, not a sprint, don't wear yourself out in the first couple of miles, especially over something as minor as CEA during treatment. A lot of docs don't even draw CEA during treatment because it tends to go up and patients tend to freak out. A good rule of thumb on bloodwork, it's nothing to panic over until your doc tells you to panic.

I really do mish doctors would spend more time telling patients what CEA is and what it really means in the big picture. In truth, CEA means very little to most patients, even those for which it's an indicator. Here's the thumbnail version of CEA.

CEA is a protein that we all make normally. Some GI tumors express excess CEA causing the CEA level to elevate. It's important to know, however, that not all tumors express CEA. The main reason CEA is drawn for GI cancer patients is because GI tumors are more likely to express CEA than another tumors, like say, a prostate cancer. So, there's some value to drawing CEA for some GI patients, but it's really just one value in a sea of indicators.

CEA is not a static value, it changes all the time. If you were to draw your CEA in the morning and then again in the evening, you could get different values. CEA can go up because you have some inflammation or a cold or you smoke or a host of other things. Doctors tend to look for trends with CEA, like a steady rise over the course of several months. And by steady rise I mean numbers that jump up past maybe 6.0 or so. At that point, they'd order a CT scan. And if the CT scan doesn't light up, the doc most likely won't change the treatment. Which is one of the reasons CEA can be such a worthless panic inducer. Search "CEA" in this forum and you'll find countless threads in which people are panicked over increases that eventually prove to be nothing. Sometimes, for some patients, it's an indicator that that the cancer has returned, or that it's on the verge of returning, but the ultimate indicator is the scan, or perhaps a physical symptom (like my Dad turning yellow because he had a met on his liver pressing against the bile duct).

The reason the doctor hasn't called you is because there's nothing to say. He's not worried. I completely understand you wanting information, but I think most doctors try to filter information to some degree. There's really no good reason to inform you of something that is essentially nothing. Try to pick and choose your battles.

At this point you don't know enough about your husband's CEA to even say whether it's a good indicator or not and you most likely won't know until after he has completed treatment because CEA tends to rise during treatment. To give you a sense of how wacko CEA can be, some people have CEA in the range of 10,000 and very little cancer to show for it while other people (like my Dad) never rise above 2.0 and still have raging cancer. CEA is not the be all end all.

[Lara239]

so, i should be freaking out or not? i have had such a bad day...my husband is giving up into work pressures and feeling really horrible about himself due to his horrible manager and the obvious discriminiation at work and now this! We just get this blood work via portal and nobody even told us. i feel like I am going to go crazy right now and have a nervous break down.

[EdFromCT]

What they said.

As you can see in the note I just posted in the "NED for how long now" thread, my CEA has been fluctuating in the range 5.7-6.4 for years, just high enough to be really annoying every time a new value comes out. Yet nothing has come of it. Sometimes this test seems to be more effective for inducing anxiety than for flagging recurrences.

Anyhow, what your oncologist is likely to be looking for is the emergence of any long-term trends. During chemo the levels are unlikely to be stable anyhow, so mostly this is just base data to be used for later comparison. If you're unsure about how to interpret things, though, don't hesitate to just ask the oncologist directly.

-Ed

[SkiFletch]

Sometimes this test seems to be more effective for inducing anxiety than for flagging recurrences.

A little more than sometimes if you ask me Ed

Lara, if I had $1 for every person I've seen on this board who has posted something like you have here (slight CEA rise after starting chemo) I at the very least would not have had to worry about christmas shopping this year. This happens all the time and way more than 9 times out of 10 it is NOTHING to be concerned with. There are few absoloutes with ANYTHING regarding cancer and it's treatment, but this one's about as close as it gets. Calm down, write it down for the next time you talk to the onc, and let them re-assure you some more. Like CRguy said, Deep breaths. In. Out.

[Lara239]

This may sound harsh, but CALM DOWN! I say this with the greatest compassion possible as I understand how it is to feel tethered to the ups and downs of various blood draws. But you're making a mountain out of a molehill here. To add another metaphor to the pile, this is a marathon, not a sprint, don't wear yourself out in the first couple of miles, especially over something as minor as CEA during treatment. A lot of docs don't even draw CEA during treatment because it tends to go up and patients tend to freak out. A good rule of thumb on bloodwork, it's nothing to panic over until your doc tells you to panic.

I really do mish doctors would spend more time telling patients what CEA is and what it really means in the big picture. In truth, CEA means very little to most patients, even those for which it's an indicator. Here's the thumbnail version of CEA.

CEA is a protein that we all make normally. Some GI tumors express excess CEA causing the CEA level to elevate. It's important to know, however, that not all tumors express CEA. The main reason CEA is drawn for GI cancer patients is because GI tumors are more likely to express CEA than another tumors, like say, a prostate cancer. So, there's some value to drawing CEA for some GI patients, but it's really just one value in a sea of indicators.

CEA is not a static value, it changes all the time. If you were to draw your CEA in the morning and then again in the evening, you could get different values. CEA can go up because you have some inflammation or a cold or you smoke or a host of other things. Doctors tend to look for trends with CEA, like a steady rise over the course of several months. And by steady rise I mean numbers that jump up past maybe 6.0 or so. At that point, they'd order a CT scan. And if the CT scan doesn't light up, the doc most likely won't change the treatment. Which is one of the reasons CEA can be such a worthless panic inducer. Search "CEA" in this forum and you'll find countless threads in which people are panicked over increases that eventually prove to be nothing. Sometimes, for some patients, it's an indicator that that the cancer has returned, or that it's on the verge of returning, but the ultimate indicator is the scan, or perhaps a physical symptom (like my Dad turning yellow because he had a met on his liver pressing against the bile duct).

The reason the doctor hasn't called you is because there's nothing to say. He's not worried. I completely understand you wanting information, but I think most doctors try to filter information to some degree. There's really no good reason to inform you of something that is essentially nothing. Try to pick and choose your battles.

At this point you don't know enough about your husband's CEA to even say whether it's a good indicator or not and you most likely won't know until after he has completed treatment because CEA tends to rise during treatment. To give you a sense of how wacko CEA can be, some people have CEA in the range of 10,000 and very little cancer to show for it while other people (like my Dad) never rise above 2.0 and still have raging cancer. CEA is not the be all end all.

Thanks. Yes I do need to calm down for sure. I have just had a very bad couple of weeks with multiple forms of stress...think I am losing it. His oncologist does think his CEA is a marker for him (he said that) so that is why i am so stressed about this.

[Lara239]

As many here will tell you, it is not unusual for the CEA to go up while undergoing treatment. ONC's normally don't get concerned unless it is over 5. At this point, you don't even know if the CEA is a good marker for him since it wasn't that high when he was DX. Mine was 45 at DX, and many have it in the 100's, and a few here in the thousands. Doctors don't treat on CEA alone. Try not to get hung up on this number at this point in treatment. If it was above 10, there might be a need to worry, but right now, keep the course and see what it is next time.

Yes Ashlee I guess your right. I wish his oncologist had not said he thinks it is a marker for him and then I would not be so upset. I know a lot of people have high numbers and some have low numbers with cancer everywhere. I know it can vary drastically from person to person. My husband ASKED for the CEA test...stupid stupid.

[Lara239]

1. Do I need to be worried

...your choice really. If the online portals get you upset...don't read them. Wait until you can talk to your Docs and ask questions in person.

....or is this normal?

yes, they told you and I agree...markers can increase as a result of treatments.

2. Why has nobody called us to discuss it?

They may not be as worried about it as you are. Why not call them ? You deserve to have the answers you seek and the results of the tests explained.


Breathe IN....... breathe OUT...... repeat as necessary.

Always on the Journey
Best wishes and Cheers !
CRguy

Thanks, lol made me smile for once today

[Lara239]

Sometimes this test seems to be more effective for inducing anxiety than for flagging recurrences.

A little more than sometimes if you ask me Ed

Lara, if I had $1 for every person I've seen on this board who has posted something like you have here (slight CEA rise after starting chemo) I at the very least would not have had to worry about christmas shopping this year. This happens all the time and way more than 9 times out of 10 it is NOTHING to be concerned with. There are few absoloutes with ANYTHING regarding cancer and it's treatment, but this one's about as close as it gets. Calm down, write it down for the next time you talk to the onc, and let them re-assure you some more. Like CRguy said, Deep breaths. In. Out.

Yep trying. too. Trying to keep a level head. just had a very bad week.

[Lara239]

thanks everyone
The thing that worries me is that our oncologist does think his CEA is a marker since it was 4.4 before surgery and then was 1.3 right after surgery and now it is at 3.1 so all I can think is his cancer must be coming back! I am frightened and worn out. I cannot sleep or eat because of worrying all the time. I feel like the first time when he was diagnosed....i am just so scared all the time because of the crazy amount of pressure that is being put on him at work, His unsupportive parents that stress him out, he has this weird left pain in his side (he says it is in his muscle because it only hurts when he is moving and it is above the surgical/colon area....he already talked to the nurse about this last time and they said it was not a hernia and probably just weird nerve pain from surgery but it just came out of nowhere) and now this....where his CEA is suddenly jumped from 1.9-3.1 in two months! I am totally freaked out.
They ran the CEA test because he asked them too (i was so mad that he asked for this because I told him it would do nothing but stress us out and i was right). They told him in the beginning that they normally do not run it much during treatment because it can go up. They said "can".
I just want him to take some FMLA so the work stress will stop and also I wish his oncologist would RESPOND to one of my emails on their internal system. I have emailed them 4 times in the past week for them to fill out his FMLA stuff (and for a refill on Ambien as he is out and cannot sleep) and they have not gotten back to me. He also never sees his doctor lately....only the nurse (i am asuming that may be a good sign).
I am at my witts end with stress.....so exhausted. Since August it has been such a crazy ride and I think my nerves are just totally shot.

[CRguy]

You may possibly benefit from some "you" time with a professional counsellor. Lots of us here have done so, me included.
When you take on problems over which you have NO control...CEA levels...yes you will feel helpless.
When to take control over HOW you are taking things on, and managing or not managing them...you DO have control.

sending cheers and posi+++vibes
CRguy

[TimT]

Ditto that Fletch and Ed. I was a CEA basket case for the last year. Tested way too many times just to try an ease my mind.
Lara, My CEA did trend up while on the chemo. Numbers slightly higher than you are dealing with. (1.7 to 3.4 to 3.9 to 5.3 to 4.8 to 3.7 to 3.0) After 16 mos. of watching these numbers with crazy obsession I now realize it didn't mean very much and the onc's had told me that all along. I was stuck on that 3.0 normal number. I also had this new crazy pain in the pelvic/surgery area when it trended to 5.3 peak, while they were also seeing increased nodularity on the scans in the pelvic area that they thought might be reoccurrence. Complete freak out at that point!!! They told me not to worry yet until the CEA went to 6.0 then 13.0 and continue the up trend. The CEA finally did trend back down. They were more concerned with the scans, which now they conclude it was shifting scar tissue at the surgery area and I am back to breathing normal again. Most likely things are fine unless the oncs say otherwise.
tt