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A rise in CEA

MoonDragon's picture
MoonDragon
Posts: 194
Joined: Jun 2005

Good news, bad news, no news, who knows?
I had my appt with my oncologist on Monday. I'm not quite sure what to make of it. My CEA has been consistently at .05 since I ended the chemo. It's gone up to .4 which is still definitely within normal limits but I worry because it's inching up. I'm assuming this is normal??????? When I asked my doc he said it wasn't anything to worry about because it was still within normal limits, but in my way of thinking all levels are "normal" until they cross the line. To me a raise is a raise!!
The other "complication" is that in my visit with my "girly doc" she felt a mass. I had an ultrasound on Friday and still don't have the results. My onc felt it too. He's not going to do a PET/CT unless he's unhappy with the results. I suggested it might be fibroids and he looked at me and asked if I have a history of them. When I answered "no" he said, "well, quite frankly you have no history of fibroids but you do have a history of a perforated colon and colon cancer. Not to worry you, but I highly doubt it's fibroids." I asked what would happen regarding the mass if he wasn't worried about the scan. He told me that it could be adhesions to the scar tissue and that could be dealt with. What really worries me is the combination of the two; the rise in CEA and an abdominal mass.
He also told me that "never, ever in this lifetime will he ever consider me "cancer free." That because the cancer perforated the colon and because cancer was found in my gallbladder while I was undergoing chemo for the colon and it shouldn't have been there at all had the chemo worked. This was inside the gallbladder and so not considered a met but a brand new beast of it's own. He told me that he's not 100% certain that the chemo worked and because of the two that I will never be considered cancer free. That shook me up quite a bit. He did try and make me feel better by telling me that he would be worrying right along with me for the rest of my life and that he had a plan for my treatment no matter what should come up. I could tell he was trying to make me feel better after delivering a blow. I know I"d rather know this than be caught off guard, but it didn't make it any easier to swallow. It sounded to me like it's not a matter of "if" but "when". For right now, though, I'm NED in my mind until they prove otherwise. Innocent until proven guilty!! hehehe
Anyone know if a "gentle" rise in CEA is normal. My onc wouldn't really give me a straight answer which makes me think the beast is raising it's ugly head and looking around again. I've heard stories though of CEAs rising but scans remaining normal???? Very confusing!

Namaste

Jorie

msccolon's picture
msccolon
Posts: 1956
Joined: Oct 2004

Do you know yet if CEA is even a good indicator for you? For many it isn't. I would be more interested in the mass and just concentrate on determining what it is. The scans should answer the questions fairly quickly. When do you get the results on the ultrasound? Sorry, don't have much more to add except that I'll be praying for you! Stay strong and try not to worry until and only if you are told something to worry about!
mary

Shayenne's picture
Shayenne
Posts: 2370
Joined: Jan 2009

I wish I could be more help, I don't even know what CEA is yet? Sorry, I don't mean to sound abit dense :(

But I do hope it's nothing horrible, and to not let it get you down, just keep thinking positive, it's all I been trying to do, even though it's hard at times.

~Donna

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MoonDragon's picture
MoonDragon
Posts: 194
Joined: Jun 2005

CEA's bounce all over the place from what I'm hearing. If you were that high though you'd be in some deep doo doo!! He probably did mean 1.5. Mine was 17 in the hospital before the surgery, 2.2 in the hospital after the surgery and subsequently .05 since the chemo till it's raise to .4 I have heard of some being up at 300 though when they were fighting the fight. Double check, but it was probably 1.5

Hugs!

Jorie

KathiM's picture
KathiM
Posts: 8077
Joined: Aug 2005

It was .07 before I started treatment! I knew that, but still, when it 'climbed' all the way to .2, I was worried. My oncologist told me: "Now, Kathi. I know it seems like alot, but it is still within normal range. We both know that this was never a good indicator for you. This small rise could be anything...change in test prep, or in the lab, itself. We would worry if it went above normal range, that is why there IS such a thing as normal range."

Hope this helps...

Hugs, Kathi

maglets's picture
maglets
Posts: 2596
Joined: Jun 2006

Ah Jorie....that's all hard to take. For what it's worth my CEA bounced around and my original onc said he would not even have me tested because it was so wonky and not an indicator of anything. It would seem that it is not reliable for you either so hang in there kid until someone tells you something concrete...always the unknown drives us nuts.

Sending calming hugs.
do you practise yoga???
mags

lisa42's picture
lisa42
Posts: 3661
Joined: Jul 2008

Hi Jorie,

I was just talking about CEA with my oncologist at my appt a couple of weeks ago. Although my CEA level has been a good indicator for me (it isn't for everyone- some people's rise without it being related to their cancerous activity level), but my oncologist said that even for people who's CEA is a good indicator, there can be "normal" variations that don't neccesarily mean the cancer activity is increasing. He said other things in our body can cause it to rise a bit, as well. Obviously, when it does rise, you want to get it checked out so you can be sure. Your rise is very, very minimal. If it starts going over the "normal" limit (3.5, I think- I've seen different numbers of what is considered to be normal from different labs), then you might want to do more to check it out. Under the normal limit shouldn't be anything. I understand the worrying, though. I'm a worrywart by nature. You just can't do that to yourself, though, for such a minute CEA rise.

Take care,
Lisa

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

Hugggggs, Jorie!!

Ok, I don't mean to sound discriminating here (if that is the right word), so all you "guys" who are reading this post of mine, please don't take it the way it sounds. Having gone the length of time I have on my journey, I (like all of you) have met more doctors, specialists, techs, nurses, and everyone else inbetween. For the most part, they are all wonderful... angels, all of them. Every now and then you get a grumpy seed in the bunch and you have to try as hard as you can to just let it go and not dwell on what he/she said... of course, those are the ones we glom onto, thinking the world is coming to an end because of some words they have said or the tone in which they've said them.

Just reading your post, I get the feeling that you, like me, tend to take words literally. Add to that a doctor who's strong point may not be in communications... or being able to see that the patient has not understood what he has said. I had the same problem with my radiologist... judging by his tone/attitude and some of the words he used, I would have to think that my situation is absolutely hopeless. Why would I think that?? Because of the words he used and, I personally, didn't care for his attitude. Then, off I went to my oncologist, expecting her to think the same thing but only color it so it was a little easier to swallow... and it was like we were talking a totally different case? The questions she asked were totally different than the ones he asked (he asked very few about ME, but preferred to tell ME about what HE thought was happening). What I'm getting at here, and like I say, I do not mean to bash the male gender by any stretch... but I think a lot could agree that there are two totally different approaches between male and females. That is not to say one is better than the other... but their compassion and understanding of what us patients are feeling/going through and being able to deal with that as well as the physical condition of the cancer. I highly doubt he thought for a minute he was saying anything that would have a huge impact on you... after all, you know you have cancer and have had it treated. But it's how one words things that makes the huge difference... and whether an onc is actually LISTENING to their patient or whether they are TELLING their patient.

So, let's talk about your CEA. DO NOT WORRY! That itty bitty rise is just a fart or blip. That tiny of a rise could be the difference between two technicians and how they check it. Also, there are a kajillion things that could make the CEA go up or down. Example: My normal, healthy CEA reading is 1.5-1.7 When we first noticed a rise, it went to 6.0. My onc said that was a slight elevation since the way they measure a normal reading is anything >5.0 The next month it read 18. That's when she decided there was a pattern to it rising. But something like >1.0, or even a couple of points... that is nothing to worry about. I just had my CEA taken this week and my onc already warned me... there's a good chance that it might be up to the 5.0 or even more and I am NOT to get excited. That is soooo common after any kind of surgical procedure. Or, if you've had any kind of inflammation or infection, the CEA will rise. So seriously, don't give yourself any stress about that small of a rise.

Now... fibroids. I'm not saying your mass is fibroids (I'm not a doctor, nor do I play one on tv), BUT, for him to just brush off that suggestion was a little careless on his part, as far as I'm concerned. EVERY SINGLE FEMALE in the world has fibroids. The difference is where they lie. Some lie in such a way as to cause horrible cramping and pain...horrid, it is! Others are just tucked away and the woman never ever feels them. They can be quite large, but she gets no discomfort from them. Fibroids will disappear once the female hits menopause (fibroids are fed by estrogen, menopause slows estrogen production down to next to nothing, hence the fibroids shrink and disappear). So your question about whether this mass could be fibroids is a very legitimate question... whether you've had a history of fibroids in the past or not. His explanation that it could be scar tissue or adhesions is very legitimate too.

So, I understand that you are concerned because of the combination of the two, but (easier said than done), try not to be at all. The rise in CEA is soooo minimal, like I say, it's like a fart... and just a tiny poof at that. If the mass is adhesions or scar tissue... then that has absolutely nothing to do with cancer at all... so no need to worry there either.

As far as his comment about "never ever in this lifetime will he consider you cancer free".... again, it's the total lack of thinking about his words and how they affect the patient. WE cancer patients know darn tootin' well we are fighting the beast and our goal is to get it under control so that we are either "no evidence of disease" or stable so that the cancer is not growing. Just because we are Stage III or Stage IV, does not mean we can't get it under control... and as long as it is under control, or in remission, or NED or however you want to term "I am not currently battling the beast", then we are happy campers. Don't anyone tell us silly remarks like "You will never be cancer free"... that's like saying you can never get it under control. P-tooey on him for saying that :)

But, take heart... as your oncologist he does have your best interests at heart and as long as he is pursuing and monitoring and watching you like a hawk, you will just have to try an put aside his remarks that are said without thinking.

Hugggggs,

Cheryl

MoonDragon's picture
MoonDragon
Posts: 194
Joined: Jun 2005

Thank you to all of you for your support and kind words!

Cheryl, I loved your analogy that it was like a fart! I needed the laugh (that's what I get for raising 5 boys. I now have "fart humor" LOL)

I'm not going to worry about the CEA as it's very minimal. He did call me this morning though to tell me he didn't like the looks of my Ultrasound and will be having me do a pelvic/abdominal CT. I am in menopause so he wanted to double check things as they should be shrinking at this time, not growing (what Cheryl said). I won't know the results till probably next week. I won't worry till he tells me I have something to worry about!

Thanks again to all of you for your wonderful support!

Jorie

Kathleen808's picture
Kathleen808
Posts: 2361
Joined: Jan 2009

Hi Jorie,
My prayer for you is that you find peace during this waiting period. You have such a beautiful attitude and all the hope. I pray you can enjoy your days with your family and have times where you are not thinking about results.
Aloha,
Kathleen

tootsie1's picture
tootsie1
Posts: 5065
Joined: Feb 2008

I know you're not going to feel better until you get the results. The waiting is just so HARD. I will be praying that you get a lovely surprise and have FABULOUS results.

*hugs*
Gail

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