Ok..What if CEA isn't a good marker?...

[disco nap]

...And I only have a CT scan once a year?

Obviously my CEA won't indicate anything, so what happens...if I recur it just grows for a year unchecked?

I am not sure if my CEA is a good marker since I don't believe they tested it at Dx and I didn't have my first test until I began chemo -it has always been 1.0 - 2.1. I have my next test next week.

[janklo]

I think with your stage, you should be tested at least twice a year with a CT. My daughter was a IIIC and her CEA at diagnosis was like 800 but then after chemo it has remained at 1.1. But she had a 2 cm abdominal mass removed in July and has more little buggers in there, still no increase in CEA. She was getting scanned every 3 months and no other symptoms other than the finding on CT. Definitely think you should ask your onc for more followup!

[NWgirl]

For the first year after completing chemo (I was also a 3c), they did a CT every 3 months. Second year I graduated to every 6 months (then I had a recurrence). My CEA has never been a good marker for me either, but when my recurrence showed up it started to trend upwards - like 1 point every time it was tested; so not a big jump in CEA; but a trend nonetheless, which was what my oncologist was watching for.

I'd definitely want to be scanned more than once a year, especially those first two years after finishing chemo when a recurrence is most likely to happen.

I had no PET scan until we had several scans behind us that showed small spots AND the CEA was ever so slowly rising - a point at a time.

[SynD]

Mine is real low too: 0.8 before treatment and 0.3 after treatment. My oncologist is planning on doing PETs or CTs twice a year, depending on what the insurance will pay for.

[SkiFletch]

Tell the governmental insurance they're crazy. A IIIC should be at LEAST scanned twice a year for the first 2. I don't want to be a downer here, but if memory serves the stats say a IIIC is more likely to have a recurrance than not, and given that knowledge, scans should be reccomended at an interval far shorter than 1 year. I have no idea how things really work up there in canada, but I'd be raising hell with my insurance company if I was in your shoes on this side of the boarder...

[disco nap]

I do believe that the once a year scan is standard up here (i.e. what the provincial health plan will cover) for stages less than IV.

Now, I'm sure if I have symptoms or pains, there will be more testing. I'll ask my onc at the next appt and will do a bit of preliminary research. I guess it's time to have a serious discussion - I always avoided the "prognosis" talk.

And you are right SF, the chances of recurrance for IIIC are greater than not.


I guess this is on my mind a lot lately since it's almost test time AND last week one of my good friend's wife was told her breast cancer (original diagnosis not so bad) is now in her spine, liver and lungs. And her last testing 6 mos ago was clean. And we have the same oncologist.

[Terry]

Almost everyone I've spoke to, heard from is scanned more than once a year for the first 3 years. Usually every 3 months the first year and then every six until 3 yrs then yearly. I would talk to your onc. about this and ask him why only once a year and that you would like to be scanned every six months. Like someone else said, even though your CEA is low it may go up if you have a recurrence. I've never had high CEA's but it does go up with a recurrence.

Definitely speak to your onc about this.

[Joy]

I had CT scans every 3 months for the first 2 years. Graduated to every 6 months for year 3 and 4 and now I have CT scans every year.

I live in Ontario. I was treated at a teaching/research hospital.

[nicola smith]

I had CT scans every 3 months for the first 2 years. Graduated to every 6 months for year 3 and 4 and now I have CT scans every year.

I live in Ontario. I was treated at a teaching/research hospital.

Fascinating. Like Disco Nap I am being treated at an Ontario teaching/research hospital. Also, like Disco Nap, I am not convinced CEA is a good marker for me as my level at diagnosis was only 2.9 and I am stage 3B

My CT scans are scheduled only every 6 months although I got an extra one this summer because of a suspected lung thing that turned out to be an infection. I get CEA tested every three months because of a clinical trial I am involved in, but it would only be every six months if I weren't on the trial.

Disco Nap and I have exchanged PM's on this topic - we are worried that even if we were to pay out of pocket for the extra tests that are not standard-of-care, the oncologist would not look at them.

[jmarie]

I think I have heard that CA19-9 has been a good marker for some. It is a marker for kidney cancer I think but I have heard it was a good marker for some with colorectal cancer. You might want some research on that but it is worth looking into. CEA doesn't show much for me wither, but since I have been in tx constantly I always get scans.

[disco nap]

I have been treated at two different hospitals, 3 different oncs and the yearly scan was never questioned. Now that I remember back, I had this discussion with my first onc who seemed surprised I would be scanned more than once a year. He said:

For an adjuvant case? No way. The risk of radiation at your age (37) outweighs the benefits of being scanned more frequently. We'll monitor you through blood tests.

So, lets sum up here: a 3a who got scanned every 3 months, a 3b who got scanned every 6 months and a 3c who is getting scanned once a year. Under the same provinical health care system. Hmmmm........

[Joy]

loooooong story. I did not have an initial CEA done!! During colonoscopy large bleeding polyp noted. biopsy came back as BENIGN! Colonrectal surgeon decided because it was "bleeding" he would do a LAR. I was told after surgery that "lucky you, benign". Fast forward to 6 week check-up with surgeon.... record was LOST and you have Stage III etc. All stops pulled I was rushed into treatment and given Oxiplatin (FOLFOX) which interestingly enough was not available on OHIP at that time.

I think (not sure) that I was given Oxiliplatin as a TRIAL and that is why I am monitored so diligently. Or the might be that the teaching/research hospital had egg on their face because they LOST my biopsy report and they felt some obligation to "fix me up"

The frequency of CT scans combined with the radiation that I received MIGHT be the cause of me being diagnosed 2 years ago with MDS (bone marrow failure) causing severe anemia!!
I also have a secondary cancer CLL (lymphocitic leukemia).....cause unknown.


I feel like a cat....using up all my 9 lives.

[Starrlitnight]

Well i haven't posted in awhile but do get on here on almost a daily bases, I keep reading how most cea's run like 1.9 or 2 point something well mine was like a 1.9 right after my surgery Dec 09 but has gone from a 5.1 at on point (which I was scanned right after and nothing other than diverticulitis and a small hernia) to a 2.8 than a 4 and right now it is a 3 since seeing how low everyone elses cea's seem to run I am now wondering about mine, my oncologist had told me after my scan when it was a 5.1 that different things can cause it to go up besides cancer, I haven't had chemo since Sept of 2010, altho my white count is still a little low( it slowly climbing oncologist believes it is caused from my radiation treatments since it was fine pryer to treatments and that I am having a slow recovery from it) and I still have neropathy in my feet and lower legs, and still have to get to a bath room as soon as possible when the urge arises, and some day's my nerves kinda get me, but I guess so they tell me I am doing great..I do thank God on a daily basis for each and every day, It's really strange how we don't realize just how great life is till we are faced with loosing it.... Diagnosed Dec 09.. T3,N2,MX at age 52,wife, mother of 4 grown children, and 9 wonderful grandchildren... sorry but I don't know how to put this on the bottom like every one else does thanks for being here

[ganda]

I am not in Canada, but also a 3C with 11 out of 40 nodes positive. I get a scan (CT and PET/CT alternated) every 3-4 months the first 2 years, then every 6 months until year 3, then yearly. My CEA was 1.9 at diagnosis (bowel obstruction - emergency surgery to remove tumor). It is now between <.5- to .8- I don't think a good marker for me either, but I get that done every month with my port flush along with a lot of other blood panels. Getting it monitored that much is really just more anxiety than anything else- last couple of times it has been .7 and .8 which freaks me out because it is usually <.5- my oncologist does not think it is a big deal though. I am probably the other extreme of being monitored, but just thought I would give you a comparison. My oncologist is at Methodist Hospital in Houston and has been in practice for a very long time- it is my understanding that this is pretty standard follow-up for 3C.
I wish you all the best- I understand all too much how stressful it is worrying about a recurrence- a lot of the time I miss getting chemo- at least I felt like I was doing something to kill the stupid cancer cells. Now i just try boosting my immune system with vitamins, taking Vit D, aspirin, and exercising- (although it has been so hot here that I really have been dropping the ball on that a bit, but still trying to get at least 18 METS).
Both my oncologist and surgical oncologist are always very positive about my prognosis, so when I get really freaked out I try to remember that....

[Starrlitnight]

I just wanted to add that my oncologist moved so I just had appt. with my new one, he was amazed on how many times I had been scanned in the last year due to activity on the right side of my colon mainly my cecum which in return set off red flags so I was also given another colonoscopy which turned out fine,also I had an enlarged spleen at one time so I had an ultra sound for that only to learn at some time in the past I had mono! news to me but anyway he said cea's every 3 months and scan in a year? So now I'm kinda worried about the white count being some what low,If it comes back how would I be able to take chemo? I know right now with good scans ect, I probably shouldn't be thinking this way but for some reason I can't help it, I should have ask but always seem to not think clear when at the Dr's office..