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dammit ... not happy

Lori-S's picture
Posts: 1286
Joined: Sep 2010

So, today was onc day. blah, blah, blah .... and somemore blah. Then, I asked what my CEA was, he couldn't find it so the nurse tried on the computer in the exam room but, she couldn't locate it. Onc said good-bye. Waiting ... waiting ... went to look for nurse. She had a piece of paper in her hand and said "now don't get upset ... let's wait for the next test it might go down next time" BINGO ... I say "It's ok just tell me" "Well it's up again. It's 15.4" Yikes!!!!!!! she says " don't get worried (with a worried look on her face) it will probably be down next time. It's not unusal for it go up early in treatment. " I reminded her that it has been steadily going up since surgery 7 months ago and told her "I'm ok ... thanks"

HA! I thought it bothered me a little last time when it was up higher than it had ever been. But, it's really bothering me more this time. I had given the rise after the first 2 treatments the benefit of the doubt. Now I just have doubt without the benefit.

Lovekitties's picture
Posts: 3372
Joined: Jan 2010

So sorry to hear that the CEA is not cooperating by showing improvement.

Over the 7 months how much has it gone up? Are the jumps very big? How soon will you get another scan?

Sorry I seem to have more questions than answers.

I do hate it though that you got the info from the nurse and didn't have a chance to ask the doc about it and express your concerns. Maybe an e-mail or call to him to get his perspective on it and maybe help ease your mind.

Keeping fingers crossed for you


Lori-S's picture
Posts: 1286
Joined: Sep 2010

My CEA was 9.7 before surgery and at time of DX. It went down to 2.3 after surgery amd has been climbing consistently ever since. I will go in for chemo on Monday and will talk to the onc then. Heres the numbers

05/14/10       9.7
05/18/10      Surgery
05/22/10       2.3
08/11/10       4.6
09/15/10       5.6
10/13/10       6.8
10/22/10       8.3
11/04/10       8.9
11/18/10       11.3
12/02/10       15.4

Lovekitties's picture
Posts: 3372
Joined: Jan 2010

I can certainly see why these numbers give you concern...not in how high but in the trend, particularly over the last month.

Am hoping that some of this can be caused by the killing off of cancer cells rather than any growth.

Hope that your doc can give you some words of encouragement and comfort on Monday.



Posts: 75
Joined: Sep 2008

Hi Lori S., sorry to hear your cea test is rising. I would rather have a cat scan done before worrying about the cea. Sometimes the cea goes up but nothing shows up on the scan or the existing tumors are shrinking, etc. Sometimes the cea goes down but the scan shows tumors or the existing tumors are growing, etc. There are 2 types of cea tests, Bayer- under 2.5(normal) and Roche-under 3.9(normal). My cea (Roche) went up from 6.7 to 7.9 but the scan showed the tumors were stable, in remission. The previous scan 3 months earlier showed the tumors had shrunk 50% yet my cea was up from 6.0 to 6.7. I guess what I am trying to say is cat scans are more reliable than a cea test as to what is actually going on. I do feel your anxiety, I really do. Stay positive and may God Bless you, Randy

KathiM's picture
Posts: 8077
Joined: Aug 2005

CEA was never a good indicator for me...before treatment started, it was .7, after treatment was over, it was .7, 1 year later, it was .6.....

Can they do a CT scan? See what's going on? Would that put your mind at ease?

BIG hugs, Kathi

pepebcn's picture
Posts: 6352
Joined: Aug 2010

Just wait to the image tests (scan or pet ).When are you having the scan?

Lori-S's picture
Posts: 1286
Joined: Sep 2010

I am scheduled for scans in January. the onc has told me that he expects the CEA to go up before showing on scans that is why we are waiting to do the scans .. that and to see any difference chemo might make. It's just that it worries me more now about what everyone is calling my bone "spots" with the continuous increase. And I have 2 "suspicious" lymph nodes near my liver as well. Oh well. We shall wait and see. I hate waiting.

OH! And I lost 5 lbs over the holiday eventhough I ate like a piggy.

abmb's picture
Posts: 311
Joined: Sep 2009

I think waiting is the worst. All of you have gone through so much, I can't even imagine what you think when you get news like that. I am my husband's caregiver and I know I worry all the time and he is NED. I would probably ask if you could have the scan sooner than later, but that is me. I will keep you in my thoughts & Prayers. God Bless. Margaret

tootsie1's picture
Posts: 5065
Joined: Feb 2008

If you're that worried about it, and I know I would be, too, can you arrange to have the scan sooner? I wouldn't wait, if you can convince the powers that be.


Posts: 827
Joined: Jan 2010

Of course it is bothering you...would bother me too...so,when you see the onc for next tx have a nice chat w/him and make him explain what he is or isn't looking at. Sometimes I wonder about these docs..I bet if the shoe were on the other foot s/he'd be demanding answers.( Always heard doctors are the worse patients ).

In the meanwhile, try to relax. I know, that is a stupid statement, but I DO hope you can relax enough not to make yourself stressed. Stress ain't good.

Thinking of you and a bunch of sparks are headed your way :)

P.S. New picture? LOL

Lori-S's picture
Posts: 1286
Joined: Sep 2010

New pic ... it's my stalute to cancer. sticking out my tongue and making little horns on my head. I gotta be meaner and sillier than cancer

plh4gail's picture
Posts: 1238
Joined: Oct 2010

Lori, sorry about your upset today. I hope you are able to get a good rest tonight and wake up tomorrow feeling better, which I know would be hard to do.....so for now I'm just wishing for you whatever helps you to feel your best.

with hugs for you, Gail

idlehunters's picture
Posts: 1792
Joined: Apr 2009

Yep.... I can see why your mind is spinning. Did I miss something or is it correct that you have not had a scan since surgery??? How long ago was that..like 7 months? So at this point you don't really know if CEA is a good indicator for you or not? I would want a scan..NOW! I just could not wait no more. Maybe I just don't know the whole picture and this is just me..... I am so very inpatient. I will be sending good vibes your way and praying that all is ok. I would say don't worry but I know you will be. <<>> There...that help any?? Take care.


Lori-S's picture
Posts: 1286
Joined: Sep 2010

My last scan was 6 weeks ago. Oct 15th. I had a couple before surgery, 1 one week after and 1 one month after. That's because of the bone spots that everyone is watching. Another reason for waiting until Jan. is that we had so many scans in the last 7 months.

Thanks for the good vibes and prayers. I was just caught off guard as I really expect at the very least a stable number but, hoping for a lower number. argh!

John23's picture
Posts: 2140
Joined: Jan 2007

Personally, I think it's better not to ask or look at "numbers"
and test results. We didn't know what they were prior to cancer,
and we didn't worry about them prior to our diagnosis, so
why now?

We oughta' gauge our health on how we feel, not how they tell
us we should be feeling. If you feel healthy, eat, drink, be merry,
and live life.

So we have cancer, big deal. We should do what makes us feel
healthiest...... and.... eat a well rounded diet to help our immune
system do it's thing.

Demanding that a doctor tells us the exact reason for the numbers
on reports, or demanding an accurate prognosis, is a great lesson
in futility. They have absolutely no way to tell if you're going to
take a major turn for the worse, or a major turn for the better.

Just look around this board..... how many have been told that
their days were numbered, and have outlived their prognosis by
years? How many have been told that they're "NED", and are
shattered to learn a few months later, that the cancer is still at it?

Did worrying about numbers help those in either group?

Live life, and take the days as they come. Be as healthy as
you feel, and you just might be healthier for it!



Lori-S's picture
Posts: 1286
Joined: Sep 2010

you are so right. worrying just takes up time and space. Am I'm not really a worrier. I was just caught off guard. waaaaaaaaaaaaaah

plh4gail's picture
Posts: 1238
Joined: Oct 2010

I second Lori's you are sooo right. Sometimes I get so caught up in "my stuff" that I forget to wake up and live each day for it's wonderful value. Thank's to you!


pete43lost_at_sea's picture
Posts: 3908
Joined: Nov 2010

be interesting what the onc says about your cea and bringing scans forward.
I don't even know what my cea is. must be bad so they don't tell me. LOL
sometimes ignorance is bliss.
i will ask my onc nurse my CEA score for my 3rd folfox this tuesday what my cea is.

as we agreed last night on another thread. relax , breathe, relax if you can.
however its so much easier said then done. I hope I can relax if or when I get tested with bad news.

its just great to be alive, enjoy today. i took my 5 year old to see santa yesterday. he loved it. he showed santa a lego toy from this catalog he has been carrying around for days. I find the greatest satisfaction in the simplest things.


Lori-S's picture
Posts: 1286
Joined: Sep 2010

Yep, it'ss the simple things that can really be the best. Taking my dog for her walk no matter how I feel always works wonders for me. All my kids are grown. Somedays the thought of having a 5 year old to take to see Santa sounds so wonderful. Your experience really made me smile. Enjoy!

Nana b's picture
Nana b
Posts: 3045
Joined: May 2009

Hey, silliness works! I had a pic of me in pigtails while undergoing chemo... Keep it up!!


mommyof2kds's picture
Posts: 522
Joined: Mar 2009

I know that it is easier said than done. But try to not focus on the number, the scans are more reliable. HUgs..

geotina's picture
Posts: 2123
Joined: Oct 2009

It is just a number and part of the whole picture. Your doc is probably wanting to wait until January for a scan so he can have a better picture of things, comparing the new scan to one taken several months ago will give him that clearer picture he needs. George started out in the high 800's, came down, down, to around 30, went up, came down again to around 17, then up agin to the 20's. Now it has more than doubled so we know that it is no longer stable but on the move. Had CT, PET/CT and liver biopsy in the last week or so and will find out Monday where we are and what we need to do. Back to stronger chemo for George.

We have been at this for 18 months and the one thing I have learned is it constantly twists and turns, ups and downs, so for now just keep doing what you are doing. Chemo is cumulative so you need to give it time to do its job and as a result your numbers can go up and down for no apparent reason.

You are on top of things so that is good.

Take care - Tina

Posts: 3692
Joined: Oct 2009

I know this is stressful; the wondering what is going on. I hope that is a "blip" + nothing to worry about. If it turns out this chemo isn't doing the job they can switch you; that is really what these tests are about; making sure they have you on the right treatment + switch things up as appropriate. Then you could be in the "Folfiri" club with me! I am thinking of you!

Annabelle41415's picture
Posts: 6723
Joined: Feb 2009

Sorry you didn't get better tests results. Hoping that the chemo goes well and your oncologist and give you some positive news.


newperson's picture
Posts: 76
Joined: Mar 2010

Lori, I'm sorry for your rising CEA. I really hope that the number doesn't really mean anything. But It does worry you. I would be very worried, too. Since it's rising even when you are on chemo, I would wonder if the chemo is working for you or not. The best way to tell is through scan. My husband has been fighting his recurrent rectal cancer for the past two years. When he started the chemo in Aug. his CEA was 400's. It kept rising during the chemo, finally the PET scan on Nov. 5 confirmed that the chemo didn't work for him. His cancer just had progressed badly. We shouldn't have waited that long to get the scan, then stopped the chemo. So it would be good to ask your doctor to get a scan as early as possible. I'm sending my good vibes to you. - Lucy

coolvdub's picture
Posts: 410
Joined: Aug 2009


I know how you must be feeling, but try and focus on the good things going on in your life. It can be difficult, but I'm sure you can find some sort of diversion for now. In the end worrying can cause you more pain than not, so please try not to worry. I will be sending some extra powerful vibes your way.


pepebcn's picture
Posts: 6352
Joined: Aug 2010

When did you have your last scans?, what they show?Cheer up,and a big HUGGGG!.

Lori-S's picture
Posts: 1286
Joined: Sep 2010

It's only been about 6 or 7 weeks since last scan. It showed larger lymph nodes near my liver and the 2 spots, one on the spine and one on the pelvic bone. The spots were the same as the previous scan but, the lymph nodes were larger than the scan 3 months before. It's OK. It is what it is and we're working on it. Everyone who sees me says I look great. If I looked how I feel, I'd really scare them. I'd be walking around like a night of the living dead extra on the movie set ... zombie. So that's a good thing ... don't want to scare the little kids. I'm tough ... I can fake feeling good if I have to. HA!

sharpy102's picture
Posts: 371
Joined: Apr 2009

Hey Lori,

I know this may not help you at all, but sometimes CEA isn't the best indicator, as it can go up due to the lysis of cancer cells. As they die due to chemo, they "break open" and release all the material they have inside. Some of them are stuff that healthy cells can "eat" as food but some of them are materials that are "foreign" and your immune system's responds to these by raising bunch of antibodies and granulocytes to "fight off" the "foreign" (or "enemy"). This causes a sort-of "inflammation" in your body where everything turns to off-guard to make sure they can protect you and that causes the CEA level to increase too. I know this might not make you feel better but even after a surgery people tend to have a significantly higher CEA level than they went in for surgery. It should decrease over time...if by January, when your scan is going to be, it climbed up higher than right now (15) then you should be worrying even if the scan shows nothing. And if you have a NORMAL oncologist then he/she should change your treatment regime immediately. Wish you the best, until then enjoy the upcoming holidays and don't worry over it. Not because it's nothing to worry about, but also because worrying is a sort of stress that makes you release chemicals that weaken your immune system and "help" the cancer...now, who wants that?! They should ALL DIE!!!
Take care,

Ps: how did you make that smiley? It's sooooooooooo cool! :) Teach me! :)

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