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CEA question

rrob
Posts: 160
Joined: Nov 2007

I know this is a topic that has been here many times before, but I am having a little CEA stress right now and would like some help. Brief history: dx'd Stage iv 10/07 with surgery for what was thought to be ovarian cancer (mets to ovaries), no CEA done; before I began treatment for cc, had 2nd emergency surgery 4 weeks later because I had a blockage from a 2nd primary adenocarcinoma of the jejeunum, CEA after this surgery was 5.2. Six months of FOLFOX w/Avastin from Jan 08 to June 08. From Feb 08, my scans showed NED and my CEA slowly decreased to 2.6. Surgery in Dec. 08 to remove originating area of colon, no sign of cancer, no lymph node involvement, couldn't even see where original lesion was (I had a flat lesion instead of a polyp-type tumor). Scanned Dec 30, 2008, NED, and CEA of 1.1. I had my last PET scan around March 20 of this year which showed NED, but my CEA had risen to 1.6. My oncologist is not concerned at all because it is still in the normal range, but I'm worried because I do know that if CEA shows a trend of rising, it can signal recurrance.

Question: Has anyone else on the boards had fluctuating CEA's that went up a little and then went back down? I know I'm stressing over something that I have no control over, but I just can't keep the doubts pushed down all the time and I am really struggling right now. I'm having a hard time staying positive and optimistic, which is my attitude the majority of the time. I'm having a hard time sleeping, I'm weepy (more than usual-LOL), and I'm tired and grouchy--talk about a bad combination!

So any ideas, experiences, etc., would really be appreciated. Thanks for being such a great group that I can turn to.

Rebecca

CherylHutch's picture
CherylHutch
Posts: 1399
Joined: Apr 2007

Hey Rebecca,

For starters, CEA anxiety is totally normal. Actually, it's totally normal to have anxiety over any blood text/scan/ultrasound/etc. that is used to monitor one's body after a diagnosis of cancer. Why? Because we will forever worry that it's come back or has started in a new area of the body. But, just as much as a diagnostic tool/test can indicate there is metabolic activity in your body, it can just as easily indicate that all is ok and nothing exciting going on :)

A difference of a couple of points (IE: anything under a 6.0) is not grounds to over-excite your oncologist, and shouldn't over-excite yourself. None of know exactly what our "normal" CEA is... but over time we can get a rough estimate. When mine is considered normal, it fluctuates between 1.2 - 1.8... and if it were to go to 2.2 I wouldn't panic. I'd consider that a blip in the system and see what it was the next time.

So, knowing that my probably norm is 1.2 - 1.8, when it went to a 6.0 I figured that if my CEA is a good indicator for me, then 6.0 is not a good thing. My onc said that that is considered slightly elevated but we would take it again a month from then. Sure enough, it was up to 18 a month later. Lots of tests then (scans, PET, biopsy, etc) and yes, in my case they had found more cancer and it was decided to surgically remove my positive adrenal gland. Just before surgery, my CEA was at 30. So, 1.5 - 6.0 - 18 - 30). After the surgery, my CEA plummeted back down to 1.6.

Since then, it has varied between the 1.2 - 1.8 and all is well. So many variables can make it fluctuate... from a cold, being exposed to smoke, an infection, and there was something else that surprised me, a very common ailment that has slipped my mind right now.

Soooooo... you have fluctuated from a 1.1 to a 1.6.... that is nothing to even give it thought. If next time it's down to 1.1, you wouldn't even question why the drop... but if it goes up a fraction of a point, the anxiety sets in.

Your onc is right with this... 1.6 falls well below the 6.0 which is considered "normal".

Hugggggs,

Cheryl

rrob
Posts: 160
Joined: Nov 2007

Cheryl,

Thanks for the input. You have made me feel so much better-I was really, really stressing to the point that just reading your reply brought tears to my eyes. Told you I was weepy! Thanks so much for the post! Hope everything is going well for you--is Bridget feeling better after her dental woes? I hate having dental work done, too, so I sympathize. I had a mini schnauzer named Sophie long ago and she was so sweet. When I would pick her up, she would lay her head on my chest and snuggle under my chin. Such a sweet personality! Again, thanks for taking the time to help me feel better.

Rebecca

CherylHutch's picture
CherylHutch
Posts: 1399
Joined: Apr 2007

I'm glad that the posts relieved your anxiety, Rebecca. In this journey of ours, I'm beginning to see a pattern... the cancer is the cancer. It's either there, in remission, or gone... but the real killer here is anxiety. Isn't it amazing how the human mind works? We get extremely anxious because we have cancer (sounds like a totally normal human reaction to me), then we get anxious if the cancer is under treatment, so is stable or in remission (anxious that what if it were to come back??) and for the lucky ones who have gone a few years NED and are approaching the 5 year milestone where, if they continue to be NED, they will be deemed cured once they hit that 5 year anniversary date (we go through a whole other round of anxiety, worried that the cancer is going to come back, ruining this hard won 5 year NED award).

In other words... once you have been told you have cancer, you live in a world of stress/anxiety, even when things are going great.

The tears/weepy episodes, again are totally normal... it's a reaction of to stress/anxiety. Heck, I get weepy at some commercials on tv, which have absolutely nothing to do with what stress I might have in my life. EVERYONE has stress/anxiety in their life, whether they have cancer or not. Add cancer to the pot and it increases our stress/anxiety level. And that is a very good lesson to learn! Know that, even if you are feeling good, you have a heck of a lot of stress in your life... and the big task that we all should be working on is dumping that stress. I don't care what the stress is... if it's work-related, family-related, financially-related, or health-related... acknowledge it and let it go. Don't hold on to it because stress/anxiety is one of the biggest detriments to our health that we can possibly have. All the vitamins/minerals in the world or medical treatments will not work to their full capacity if we hang onto our stress or create situations that will be even more stressful to us.

Unfortunately, I think getting rid of stress in our lives is probably one of the hardest things to do. I don't care what anyone says, when you've been told your illness, or your loved one's illness, is so serious you may die... there is no way anyone can say, "Oh well, if it's meant to be, it's meant to be" and have no stressful reaction to hearing those words. And THAT is what we all are going through... that this cancer is serious! We aren't all going to die, but there will be those that do and the not knowing is what creates the stress. But, the smaller stress issues in our lives... let go of them :) Throw them out the window and let them know we have bigger fish to fry than the little stuff :D

As for my little Bridget... it has been a bit of a rough week for her, hence for me. She ended up having much more intensive dental work done on her poor little mouth (extraction of 8 teeth and gum surgery). It broke my heart to see/hear the little one that first day or two. She is such an independent little terrier... and I knew she was in pain because she turned into velcro dog and wanted me to hold her the whole time. I also knew when the meds were working and she's now feeling no pain... she's back to being the spunky little terrier and oh so bossy :D

Thanks for asking!!

Hugggggs,

Cheryl
(who can't believe how many typos I had in that last post!! My brain can spell... my fingers? Whole different story!! :D )

rrob
Posts: 160
Joined: Nov 2007

Cheryl,

Thanks again. I always try to tell myself that stress is the enemy and somedays I'm better at dealing with it than others. This past week has not been my best-I usually try to be really positive, but I noticed that it was harder than normal this week. I know you've posted in the past about some of the tapes/books you've read-have you found any that really seemed to help? I drive about 2 to 2 1/2 hours a day to and from work and school and I'm thinking I'll try listening to audio books to help. I normally tape lectures from class and listen to those to help study, but I'm thinking a little stress relief might make a big difference. Thanks again for caring!

Rebecca

Hatshepsut's picture
Hatshepsut
Posts: 340
Joined: Nov 2006

Hi Rebecca:

There are many people on this board who are more knowledgeable than I about CEA readings, but I can share my husband's experience.

My husband was diagnosed with stage three (and later stage four) colon cancer in 2006-2007. His CEA numbers were always in the two-range. Then he had a recurrence in the abdominal wall that required a third operation in late 2008. Compared to his first two surgeries, this surgery was very minor and he was in the hospital for only a couple of days.

Then, when his medical oncologist did routine CEA readings we got a couple of readings in the four range. I panicked--tired, grouchy and weepy would be words that would certainly describe me at that point. My husband was retested for CEA and the reading was around five. He had a precautionary CT scan which showed no sign(s) of cancer. Then, on the next month's CEA reading his numbers fell back to the two range and have stayed there. Why? I don't know. I've wondered if it was somehow related to the trauma of the third surgery.

I hope this information reassures you that the numbers can fluctuate. Please take care of yourself. I know everyone is different (and I'm just a very protective and anxious spouse rather than a patient) but I find some peace growing orchids, taking photographs, cooking and loving my husband and our spunky little dog. Perhaps you could relax a bit by doing something that gives you pleasure.

Hatshepsut

rrob
Posts: 160
Joined: Nov 2007

Hatshepsut,

Thanks for posting--it is such a relief to hear from other people that this has happened to them. I've read your posts in the past and your husband's story is so positive. Thanks for sharing and for taking the time to post! You and Cheryl have helped take the edge off some of my CEA stress.

Rebecca

PamPam2's picture
PamPam2
Posts: 376
Joined: Jan 2009

Hi Rebecca
My Cea level stays over 2, if you smoke it will stay higher, and also I heat with wood, so I am exposed to smoke daily. As others said, there are several things that will affect Cea levels and over the past 5 years mine has always fluctuated, up to 3.2 and down around 2. So I hope the replys have helped sooth your nerves a little.
Pam

PhillieG's picture
PhillieG
Posts: 4907
Joined: May 2005

You sound like a lot of fun to be around at the moment :-)
I agree with all that's been said already. I really do not even pay attention to my CEA anymore. I know it's never been in double digits and usually is under 3(?). My Onc said it is only one of the many ways they have to get a handle of what's going on in there. It's not the end all by any means. You can have a high CEA and be fine and visa-versa. I get stressed when it's scan time and the waiting between the scan and the result. It's easy for me to sit here and tell you not to worry about it, silly me. But the less we stress the better off we are.
Thinking of you
:-)
-phil

Madre's picture
Madre
Posts: 124
Joined: Apr 2008

As long as it is under 5 my doctor says not to worry. When I had an active tumor mine was 1.7 then after surgery it was 1.5 during treatment of folfox it went as high as 2.5 and I think recently is was 1.2 (NED last treatment was 10/08). Like others have posted lots of things can alter it. For me it isn't a very good marker but we still keep an eye on it anyhow. I can relate that you can have enxiety over test result, it is normal and should be expected. Good communication is the key. Prayers for you to keep NED and for some calmness. Happy Easter.

beachinmom
Posts: 75
Joined: May 2008

I think your cea is probably very normal. My experience has shown random results up one month to a high of 1.8, back down the next to 1.1.... as long as it is not a continual TREND up you are ok. up one month and back down the next is ok. Chemo can make it rise a tad too as well as inflamation and other things.....good luck.

rrob
Posts: 160
Joined: Nov 2007

Thanks for reassuring me. I really do appreciate all of the input. Phil, you are so right-I am a lot of fun right now. I think that's why everybody is finding things to do away from the house (and me) right now-LOL. Pam, Madre, Beachinmom, and Phil, thanks for helping. I really try not to let the stress get the best of me, but right now I'm not handling it as well as I usually do. This post is an affirmation of what a great support group this is--thanks to everyone who posted. Hopefully, I'll sleep much better tonight. Thanks!

Rebecca

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pamness
Posts: 515
Joined: Nov 2007

I have posted before - I was diagnosed stage 3A in January 2007, two lymph nodes postive. Had a colonectomy, followed by Folfox and radiation with 5fu. I have been ned since August 2007 when I finished treatment.

I only could tolerate 5 rounds of oxaliplatin at reduced amounts. Finished all 5FU with radiation. I have had one odd test after another.

My CEA was 4.8 after my colonectomy and went down to 2.4 during treatment and has been 4.2 for 18 months. I have had six or seven clean scans since finishing treatment (because of the odd CEA). For some people, CEA is just odd, yours sounds well within normal range.

I am being treated at MGH where anything below 3.5 is considered normal. But for me the low 4's seem to be normal.

Sounds like your CEA is fine.

Pam

sharpy102's picture
sharpy102
Posts: 370
Joined: Apr 2009

good luck all...

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