Question

Hi Franny,
I know what you mean about getting the heebs before these tests and all. I would not be overly concerned with such a small rise in the CEA. It is not like a huge rise or anything and I have been told that small differences like that can merely be a difference in one person performing the test vs. another, or one lab vs. another. That coupled with the fact that you were only Stage II and it's been 3 1/2 years! I know, easier said than done, but I would not worry. If you are due for a scan, go ahead and have it done early. Otherwise, I would try to not worry about it until you are due for another one. At that time have your CEA done again and see how your scan comes back.
Good luck and try not to worry!
Susan

grandma713 said:

Thanks so much guys! I will ask about the PET tomorrow and I will definitely try not to worry! Besides, if nothing else, I have learned I am not in control, but I know the ONE who is!!!
So what is the time for you guys? How are you progressing? Love to you all!

Hi Fran. I have a CT every 6 months as well as 3 monthly bloods. The discussion did come up with my GP a while ago about extending CT's out to 12 monthly but I objected. I have heard of a few people who were told that the duration in between scanning/bloods etc gets lengthened the longer they remain NED. Having said that I personally are prepared to suffer the cost because I still think prevention is better than cure, but thats my opinion.
To be honest I guess I am also a hypocrit because I still smoke.....no excuses I know....thats just the way it is. However, as my mother died from brain cancer I am still sceptical that my cancer was genetic....not smoking related.(no flack please guys about my bad habits....been there, done that...and it won't change anything)
As for CEA'S, I am aware that my results fluctuate quite a bit, and by several points, up or down due to smoking.
As for the heebies.....I don't think you are alone. It is going to always be a stressfull time awaiting test results I think...no matter how long we are with NED.
Be safe n well Fran, Ross n Jen

Hi Fran. I agree you should ask about an early scan. It's a very slight increase, but still better to be checked out. I know it's hard not to worry when you've experienced what you have. Keep the faith. I'd request it even if it were only for peace of mind . God Bless

It is really not 1 number that tells anything (unless it really jumps). If it were me, I would ask that the CEA be checked every 4 to 6 weeks to see if there is a steady rise. With my husband, who is battling round 3 with an initial Stage IIIC diagnosis, his CEA was not really high but it has been telling. With both recurrences, they did not immediately do any scans.

1st recurrence (finished FOLFOX in May):
June 05 - 2.2
July 05 - 1.2
Sept. 05 - 2.4 (put on every 6 week checks)
Oct. 05 - 2.7
Dec. 05 - 3.6 (CT scan - nothing found)
Jan. 06 - 5.5 (Pet/CT - Presacral space recurrence)

Surgery and radiation finished in May:

May 06 - 1.6
June 06 - 1.8
Aug. 06 - 2.6 (put on 4 week checks)
Sept. 06 - 3.8
Oct. 06 - 5.9 (Pet/CT - 3 pelvic masses)

No surgery and started chemo end of Nov.

There is really no big hurry in jumping into scans as things have to be so large to be detected by Pet or CT. I would ask for some frequent CEA checks.

MA

Hi Franny,
I just had this experience with my CEA...went up to 1.9 from 1.7. I also had no rise in CEA at diagnosis, but it did increase during chemo (I was stage III). We don't know if it is at all an indicator. My onc said she hates when this happens, because even if she knows it's not clinically significant, it scares the hell out of patients. If I remain too nervous, she suggested first a repeat CEA. I also have my 6 month CT scan next month, and my colonoscopy last month was clean as a whistle. It's been nearly 3.5 years since my surgery, so I'm using the stats emily's onc quoted and just holding my breath!
I'll be interested to hear what your onc recommends. Judy