CEA Question

The joys and frustrations of CEA
Hi Wenchie,

CEA is one of those diagnostic tools that on it's own, isn't enough to tell you too much.... but with a CEA reading and other tools such as xrays, CT scans and yes even PET and MRI scans, not to mention blood work/tests... there's a lot that an oncologist would use to come up with a current diagnosis and then a plan.

I don't know all the details to your case, but it sounds similar to mine. I was originally diagnosed as Stage III, had all the surgery, etc. and 8 months of chemo, 6 weeks of radiation... and then a year after having been diagnosed as Stage III was upgraded (blah!) to a Stage IV. How did they find this out? With the combination of everything... my CEA was rising, my CT scan showed spots on the lung(s) and a PET scan showed them more accurately. Usually, your oncologist will have a whole set of procedures they will do first, starting with the least expensive (even if you have insurance).... trying to keep scans to an "as needed basis". Most think it's because of the cost, but in reality, we will have so many scans over our treatment period and the scans are heavy on the radiation exposure (Trivia fact... did you know that 1 CAT scan is the equivalent to 444 Xrays?) I didn't know that... so I'm not in a hurry to have a CT scan done every couple of weeks.... heck, I'll have them done every 3 months while on chemo because that gives her a good picture of whether the chemo is working... but let's not go overboard on the scans if we don't have to

But back to your question. The numbers aren't really something you have to worry about. Obviously, the lowest number is the best that we all strive to have... but if the numbers are creeping up, and CEA is a good indicator for you (some people it isn't, it goes all over the place but doesn't mean anything)... then it's the trend you want to pay attention to, not the actual numbers. In your case, from the numbers you've given us, the trend is your CEA is on an upward trend... so definitely you are going to want to sit down with your oncologist and say... so now what? They know you have mets to the lung, I take it they have done a CT scan recently to find them. So maybe your onc will want to get a Chest Xray if the mets are big enough to show up on an xray.... and that will be a base. You didn't mention how many mets you have... are they operable? Are they just on one lung? Are you eligible for an RFA procedure? So many options, but first things first... you've got to meet with your onc and say, "What's our next step... and why."

Keep us posted how it goes!

Cheryl

Wenchie said:

Thanks Buzzard and Cheryl
I had a CTScan at the end of January and the growth was so small, they're not even sure it was growth. I have 7 bilateral lung mets and they're inoperable due to both lungs being involved and the location (per MDAnderson and Moffitt). I heard that CEA levels can also be related to inflammation. My Oncologist wants to wait a little (I was off of chemo for the month of February due to no insurance) and see if the chemo kicks back in strong. My next CT is due at the end of April. I guess I'll just try to relax unti the next CEA. How often are you two having colonoscopies? I haven't had one in 2 years because they say it's a "moot" point and anything could be found in the CT and Pet scans I have.

Same stories, same path
Hey Wenchie, were we born as twins at birth and only now are meeting up? Your story and mine could be the same for both of us. My lesions/tumours are on both lungs, and scattered throughout, making them inoperable. There's always the option if only one of them were to grow and the rest remained stable, that we would do an RFA and zap the energetic one. I have had one removed by RFA and that was such a non-invasive easy procedure... although I don't think the medical world would describe it that way (there's risks in every procedure so they don't just do these willy-nilly... also, it is a specialty and only a few radiologists actually do the procedure. I happen to be lucky to have two radiologists at two different hospitals that can do them... but other towns/cities are not so lucky so it would involved travel if one was eligible).

I haven't had a colonoscopy since I was diagnosed. My surgeon said that there were no signs of anything, no other polyps, benign or suspicious so he said that I was good to go for 5 years. Like the advice you were given, both my surgeon and oncologist said the same thing. If there were any reason to be suspicious then he would have me back in but since I'd be having a kajillion (my words, not his) scans and tests... there is nothing a colonoscopy would find that the amount of scans and tests I have wouldn't find.

Yes... relax until the next CEA. I know that's easier said than done... I just went through that myself and had to keep reminding myself about the advice I give others. If a result isn't what you like or understand, then wait until the next one so you have something to compare it to. I did NOT like the CEA result I got 2 weeks ago (25.0 when my stable reading is 1.0-2.0) but this week's result showed a good drop to 15.0. So again, it's not the numbers... the fact it shows a downward trend and quite a dramatic one with only 2 weeks (1 infusion) of chemo. So my feelings today are certainly a lot different than 2 weeks ago

Cheryl