Question

grandma713

Hi All,
It has been a while since I posted but I try to read and keep up with you all. I went this week for bloodwork and go tomorrow to visit the oncologist. My liver panels, CMP etc. were all normal, however, my CEA went from 1.5 to 1.7 in the 6 months since my last appointment. I go to the gasto dr at the end of April to schedule my colonscopy, but should I request a CT scan or not be concerned about the CEA? I know it is still within the normal range, but my CEA was normal before my surgery. I had Stage II colorectal, had bisection, no chemo. No lymph node involvement and its been 3.5 years. I always get the heebie/jeebies during this time...

Thanks for any advice. Love to you all, especially you emily and kanga, and lisa. I feel like I personally know you guys

JADot

Hi Franny,

Fellow stage II-er here rooting for you 3.5 years - wow, you've come a long way!

I am thinking you ought to request a PET/CT scan instead of just plain CT scan. I had low CEA too, even when I had 2 viciously fast growing tumors, so I am more of a fan of imaging.

Good luck to you!

Ying

shmurciakova

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

shmurciakova said:

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

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!

kangatoo

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

Betsydoglover

Hi Franny -

I can imagine how you feel, but the truth is that medicine is an art as well as a science. A 0.2 increase in CEA could well be "just because" - in other words that's pretty insignificant in the lab test world.

How long has it been since you had a CT? I'm Stage IV, so my perspective may be warped, but regardless of your CEA, if it has been a long time, you may want to ask for one. Better safe than sorry and they can't treat what they can't find (although in your case, I'd bet they find nothing!).

Good luck - being Stage 2 and 3.5 years NED, you are probably fine.

Take care,
Betsy

hopefulone

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

2bhealed

hi franny!

the week before tests are a trial for my family since I am rather cranky. So I completely understand you having the heebiejeebies!

Blessedly my tumor never gave off a CEA so it's been one less thing to worry about, but I feel for you.

My onc told me that after 3 years for colon cancer that if you haven't had a recurrence then the chances go way down. I held on to that and now am at 5 years and 7 months staying NED! Hoping you will too!

Thanks for the love vibe sent my way. :-) sending it back atcha.

peace, emily

mwomack

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

grandma713

Wow, thanks to all of you. This is the reason I am a part of this group. There is nothing better than being informed and getting and sharing your experiences. My appointment is later this afternoon. I'll try to post this weekend for sure.
Again, love to you all!

jsabol

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

jams67

Franny, are you the same person who used to be Frantic? If so, I'm glad you are doing so well. I think about all of my friends here and was just wondering?
Jo Ann