The Colon Club

HI, I have posted before regarding CEA's so I hope you all don't mind another question on the subject. I am so confused about CEA levels and follow up for my particular colon cancer. This is my history:
Stage 1
Resection 9/26/16
No Chemo required
CEA: 9/26/16 1.5
CT 9/13/16 Clear with 2mm node on lung
low grade T2 tumor
0/28 lymph node's (no cancer found)
CT 3/16 clear with 2mm node on lung
CT scan was 9/17 clear with 2mm node on lung
CEA: Every three months:
10/16 .3
12/17 .5
3/17 .6
6/17 .7
9/17 .7
12/17 .8
3/18 .9
This is my concern:
My doctor has been ordering CT every six months and CEA levels every three months. I just had all my blood work done and I am really concerned about it because my CEA is going up and not down. My GP ran a CEA with his lab on 3/1/18( different from the numbers above) and the CEA went from 0.3 to 1.1 in six months. My last CEA level from the oncologist (hospital lab) was on 2/27/18 and it read 0.9. So there is a little difference in the two readings. Both doctors GP and Oncologist are not that concerned but I am due for CT scan ordered by the oncologist. I have read all the guidelines for follow up on stage 1 colon cancer and I was hoping I could go a year without another CT scan instead of doing one right now. MY last CT was 9/6/17 and as now now I am 16 months since surgery. I went to get a second option and the oncologist wasn't too concerned about my CEA which he had the results from the hospital that had my reading as .3 to .9 over a 16 month period. He told me I could wait for the CT but he didn't know about the recent CEA from the GP which went form .3 to 1.1 in six months. This is causing me so much stress! I am concerned about my CEA levels never being the same or with no fluctuation (up or down) and all the radiation from the CT scans. Should I be concerned about my CEA and should I go get the CT scan now? When I read all the guidelines for follow up for stage 1 colon cancer it seems like I have been getting tested a little much. I had three CT scans in one year, 2 mammograms from year to year, recently I had a sinus infection that caused me to get sinus X-rays and MRI of the sinus and a reaction to antibiotic Ciprofloxacin. Is Is there anyone on this message board in the same situation as me with Stage 1 and no CHEMO just surgery?? This worry with the CEA levels is just to much. I know I have a 2mm node on my lung but it has been stable for a year. MY CEA was 1.5 day of surgery went down after and is slowly climbing so I am so confused about how to feel about all the CEA levels and frequent CT scans( within a six month period). Thanks for any advice and hope all is well with everyone on this message board!!

First of all, PLEASE try and calm down....although I know that's a whole lot easier said than done.
Secondly, try and get a copy of the test results and make sure that the different labs are using the same test. There are two different tests that each have their own different sets of 'NORMAL' and you can't compare one to the other. So, one test (example the Seimens/Bayer) has a different set of normals than the ROCHE test does.
For example, a 0.3 in one test does not equate to a 0.3 in another test. It's not at all uncommon for different labs to use different testing methods. So check that out first before you get all upset.

Finally, a slight variation....as long as it is within normal limits doesn't necessarily mean anything. My CEA has jumped from a low of 0.5 to 1.9 and back. Other factors affect CEA. If, for example, you had a very bad cold or lung infection (distinguished between just a normal cold), then your CEA could have and likely would have been affected. Inflammation is known to affect CEA. Now, please don't assume that if you just have a 'normal' cold that that is something that affects CEA....it doesn't. The two most common things that affect CEA are SERIOUS lung issues (bad attacks of asthma, pneumonia, bronchitis, severe colds.....SIGNIFICANT respiratory inflammation) and SIGNIFICANT GI inflammation...(examples>>>> inflammation after GI surgery, inflammation from serious infections in the GI tract, diverticulitis as opposed to, for example, a 24 hour stomach bug).

Try and calm down and remember that it is NOT uncommon for CEA to fluctuate. Honestly, with either test, your CEA is so low and well within normal limits that it's likely to be nothing. As for scans every 6 months, that's not at all abnormal....even for someone with a stage I. In addition, they are likely watching those lung nodules and honestly, wouldn't you rather have the doctors err on the side of caution than not? You should also check with your GP that their lab didn't change their testing.....when I had the same thing happen to me back in 2007 (that's when labs started changing), most docs didn't even look (and I doubt that they do now either) which test was being employed. So ask for copies of the reports from all your testing and especially from the same lab....see if the testing has changed. If you find out that it has....relax...it's NORMAL.

As for no chemo after stage I.....honestly, that's the standard of care. Most stage I's, unless there are some negative prognostic factors...DO NOT HAVE CHEMO so you're again, being treated normally. The statistics for a stage I are high enough without chemo and the risks of long terms effects from the chemo just don't make sense or outweigh any minute benefit chemo may have.

Again, try and relax. Your doctors sound as though they are being cautious.....watching those lung nodules....and following all the standard of care processes without adding any other complications into the mix.

If you look at my signature you can see my ongoing levels. They fluctuate but always in the normal range 0-4. You will see a level of 1.4 and then a increase to 2.9. This was in the span of 15 months. My onc bumped up the scan and it was good. She was just being cautious but was not to overly concerned. If anything causes more stress for members over the four years I have been here it is CEA levels. Just like they once freaked me out, now I don't worry at all. My onc has always told me that she will tell me when it is time to worry. My lowest CEA was when I had my tennis ball sized tumour 1,6 at dx....go figure.

Hi and thank you for the response. I did check the Gp's lab and it uses the Siemens method which has a 2.5 cutoff. So I feel I am getting close to that with the 1.1. The Hospital lab cutoff is 3.0 and mine was .9 so I should go with that! Don't know the method the Hospital labs uses. Its just odd that within a two day time period my CEA is a few points higher. I wonder if the Siemens test would be the same at any lab that uses that method. Take Care!! Also I notice that a lot of people only get scanned once a year and they have me every six months but then again maybe she is being cautious and look after the node.

You're looking at the first lab result in the wrong way. NORMAL is between 0-2.5....anything in between that is NORMAL. At 1.1 you aren't even at the halfway point between a low of 0 and a 'high' normal of 2.5. You're not 'getting close' to the top of the normal and, even if your levels stay within that 2.5....it's still considered NORMAL.

Your level isn't getting a few points higher....it's getting a few tenths of a point higher...HUGE difference. IF, in fact, your CEA was climbing by full POINTS....you'd be talking about an increase from (example here) 1.1 to 2.1 to 3.1.....THAT'S a few points higher. You're only increasing by TENTHS of a point....you haven't even gone up a whole point.

Remember that with a T2 tumor, even though that is a stage I, it is a later stage I than if you had had a T1 tumor. Honestly, I think the onc is just being cautious....watching the lung nodules and just being proactive. Studies have shown that IF a patient is going to have a recurrence, there is an 80% chance that it will happen in the first two years......please don't misread what I typed. You're still in that first 2 year period.....and I know that the one thing you really want is to try and put this behind you but get the scan....it will help alleviate your concerns about your CEA....and try to relax a little. If you really don't trust your onc, then find another onc and get his/her opinion. The onc IS the doctor that you want to follow up with and as much as you may trust your GP (and I love/trust mine) he/she is NOT a cancer specialist and really should be deferring to the onc or telling you to get another opinion.

I've been a survivor now for almost 12 years and I've had my fair share of CT scans, my yearly mammogram (over 20 of those....done on a yearly basis), MRI's and other radiation tests. EVERYONE on this board has had their fair share of exposure to radiation and you have to decide if it is worth it to you to have the test or not. You can look at it this way. If you choose NOT to have the CT and wait AND if you have a recurrence or if those lung nodules grow, you may have waited an extra six months giving cancer a chance to further invade your body. Your CEA is NORMAL....even though it has risen a few tenths of a point....and remember that many many people have NORMAL CEA levels and have cancer in their body. You're the only one who can decide what is best for YOU. Keep it all in perspective though.....we've all been exposed to a lot of radiation, we've all had our share of our CEA going up/down and we've all been in the position you've been in at least once.

You wanted advice....quit worrying about the SLIGHT rise in your CEA....it really right now is NOTHING to stress about, although we all understand your concern. Make a decision about the CT but make sure you're comfortable with it. Ask yourself whether any minute risk of the radiation is worth the stress of waiting another 6 months to check on those nodules and/or give you more peace of mind.

Don't forget the Colds, Different fluid intake Weel hydrated one day and not so much the next, and also we don't know how long it takes for the blood to be analysed in the lab will also show some differentiation.

You have given me great advice and I agree with you! I do think I should get the scan and even thought to myself that my tumor is the later of Stage 1 although low grade. I can't live knowing there could be something brewing. My last scan was September 6th so give a few days and I will schedule. Thank you so much for explaining it all. Several months ago I got a second opinion from a oncologist at a major cancer center and he thought I was being tested too frequently and if my node was stable for a year I could start getting scans at the yearly mark. That is the reason why I got concerned about secondary cancer with radiation. I started looking up follow up for stage 1 colon cancer and there really is no follow up protocol. Its basically up to the doctors. As much as I don't want to get the scan I have the little voice in my head telling me to get it. I hope it will all be good and that this isn't some kind of sign since I would probably would not be in this situation if I would have gone in earlier to get my colonoscopy when my doctor told me. I had a colonoscopy when I was 47 which was all clear and when I was 52 my doctor told me to get another one but since she included stool testing in my regular check ups I never went in. Well at 56 I had bleeding, went in ASAP and there it was. Stage 1 sigmoid tumor nine years after first colonoscopy. Its been horrible for me because I am a worrier to begin with and dealing with the frequent follow up cause a lot on mental stress that I just can't deal with. These boards help with the stress because all of us know how it is to deal with all the issues that come with colon cancer and you people get it. Thank you for all the advice and support!

My husband also had a T2NOMO rectal tumour and underwent ultra low anterior resection in Jan 2016 without any chemotherapy or radiotherapy at the recommendation of the colorectal surgeon and two oncologists we saw, as well as the colorectal cancer multidisciplinary team. His CEA was elevated pre-op (12) and has been between 1.1 and 1.8 since his surgery on three monthly checks (most recently 1.8 down to 1.3). We have been very reassured by these levels and expect month to month fluctuations. I would be even more reassured if his CEA levels were as low as yours! I would only be worried if it jumped up above the normal range. The oncologist and surgeon are also very happy with these levels.

With regards to frequency of scans, we were advised to have 6 monthly scans for roughly first 18 months to 2 years and then yearly thereafter because he is young (33) and the cumulative radiation from CTs of his chest, abdomen and pelvis is significant. There is no right answer however and there is huge variation, looking on this forum, between how much scanning people get done.

I wouldn't worry about the fluctuation in CEA given your readings are incredibly low. Maybe try discussing pros and cons of continuing 6 monthly CT scans with your doctor and they can explain why they think six monthly is necessary in your case. It may be that you're not yet two years out...

Yes this would be my fourth CT scan since I had one years before my colon cancer. I just don't want secondary lung cancer from so much radiation. Good luck with your husband. Keeping all the people on these boards in my thoughts and prayers!

I was told by my surgeon that for some people CEA level is not an indication of cancer.
Your pre-surgery CEA level was normal (according to your post).
So for you CEA test may be irrelevant.

By the way, if you plan to stick to this forum for longer time, it makes sense to create a signature describing major events and metrics.

My cancer situation is the same as yours. I am a Stage 1b because tumor had grown into the muscle. All 15 nodes clear. Spot on liver biopsied during colon resection and was benign, so your lung nodule could also be benign. No chemo recommended. CT scan to be done at one year mark. I had full upper body CT scan prior to surgery. Oncologist doesn't want to do one sooner. I do wish there was a scan for us without radiation exposure. Colonoscopy to also be performed at one year mark. Blood work up and meet with Oncologist every three months. My CEA is not something we can use to determine how I am doing because prior to surgery it was only 1., and with that low number I needed 6" of colon and rectum removed. Hope my situation being the same as yours helps.... Especially the part where Oncologist said no chemo with a Stage 1b. I feel anxiety like you do. It's normal. Our Cancer Center has an Oncology Counselor to help with it..... Maybe yours does too.

AlexMichelle wrote:I do wish there was a scan for us without radiation exposure.

"Low dose" CT scan also exists with radiation exposure several times lower.
For example in October I had such scan of my lungs without contrast (they did only lower body "normal dose" scan in June).

I am curious to better understand pros and cons of these two types of CT scan.

Your CEA's are all very low within the low range of normal. Numbers like that fluctuate and what appear to be possibly significant percentage changes are in fact nothing to worry about. In fact, oncologists are trained to not worry about CEA fluctuations within the normal range. You could probably have two CEA's in 2 days and get different results.

Take care, and try not to worry about this.

Does anyone have a oncologist in the S. California or anywhere in California area they can recommend?