CEA

I am sorry to hear that your CEA has jumped. There is no denying how scary it is, even when people tell you that CEA is not always a good indicator. The fear will stay with you until you see you Oncologist and get a scan or more blood work. Until then, I say, be scared but don't let it consume you. Fear turns to stress, and we all know that Cancer feeds off of stress and negative feeling. 

I know that I found some ways to calm myslef during the many 'scary' times since my diagnosis. Maybe you have also, and this is the time to use them. I like to meditate and listen to healing music. I love nature, so like to be outside. We all have different ways to bring ourselves into a safe place, I hope you can do this, as you wait for your results. 

I know there are several members here on the forum who have high CEA levels, but are doing well. For me, CEA is a good indicator, for others not so. Hold on to the hope that your rise is just an anomoly. 

We look forward to getting to know you, and will wait with you for results. 

I also agree with our Bill, maybe see if you can bring your appointment forward.

Good luck! 

SUE

I also mirror the others in saying it's still early to think there's is something going on.  I also agree about trying to get an appointment moved up with your oncologist or at the very least try to talk to your oncologist on the phone.  At a minimum, your oncologist should be looking to order another CEA test to determine if the number is real or not.  Don't be surprised if your oncologist waits about week before scheduling another CEA test.  This is done to make sure there is enough time between testing to ensure an accurate/real number.  Although when I consulted with a new oncologist (who is currently my oncologist) he suggested to wait a few more days before running another CEA test ordered by my previous oncologist.  I was concerned due to a 1 point spike in the number.  He saw that I was stressing out over the results and went ahead and did another CEA test to put my mind at ease.  Fortunately the second test came be lower.

Also, you should be scheduled to have a CT scan done to see if there is anything going on as have been mentioned by others CEA is not a definitive test for any issues....just a test to track trending for a possible issue.  If your oncologist can't see you soon or is going to wait for a few more days to pass to do another CEA test, I would definitely be pushing for a CT at this moment.  I only see you list a scan done last year and don't see anything for one since then.  If this is true, you're due for a scan anyways.  A CT scan should and can be ordered by your oncologist without you actually seeing him as a follow up visit is no good without any scan results to review.

And this is advice which doesn't seem to be reiterated here and other forums.  Scanxiety is a bad thing to go through.  Depending on who you are, if knowing sooner rather than later helps you, I would get your CT scheduled in the morning.  And then call back to the radiologist office in the afternoon to see if the scans have been read and a report generated.  Chances are the scan report will be completed by the afternoon.  There's absolutely no reason to go more than a day without getting the report.  Just blows my mind people venting about how stressed out they are waiting for scan results which will be known to them at the follow up visit with the oncologist a week or more later when they can just stop in to the radiologist's office that same day or the next ot get the report.  The report is written in plain English for anyone to understand and doesn't require any medical training to understand your overall situation.  This is just my 2 cents worth.

Trubrit said:

Expedite

My Oncologist would put on the CT order to expidite the results. That meant they would be read and reported the following day. 

Stat is used only when there is an acute need, like a rupture or for those in a life and death situation of some kind. 

SUE

 

I guess it may depend on the standard level of services in your area so it is a good idea to ask before leaving the radiologist office on when the scan report will be finished.  In my area a semi large metropolitan area, I've never had to wait more than a day with a standard scan order.  The only time I waited into the next day was when I had a scan scheduled the day before I was going to meet with my oncologist.  Oh and I did have to wait 2 days for my PET results even though a STAT order was put in.  This was when I was first diagnosed and the PET was done on Christmas Eve.  The radiologist for some reason called my CRC surgeon about something and didn't finish the report before he left for the holidays.  So I had to go through Christmas and then the day after got the results when I met with the liver specialist.  All other times I've had scans, I've scheduled them in the morning and got the scan report that afternoon and this was with two different radiology offices unaffiliated with each other.

Delores,

Stop waiting and either call the radiology department or go there in person to get the report.  I can't fathom the report not being completed by now.  As another data point, I just had another follow up CT scan done this past Wednesday.  I scheduled my appointment for 8:45 with my arrival at 7:45 to begin drinking the barium solution.  There was some delay and I didn't get my scan done till about 9:10 or so.  I picked up the CD with my images before leaving the radiology office and headed home.  I called the radiology office at around 3 in the afternoon and was told my report was ready.  I picked up the report at around 4.

The staff there said at a minimum the report would have been ready by the next morning.  I suspect the report was done around lunch time or a bit after.  This was without having to have a STAT order placed for the scan.

Again, call the radiology office or go down there in person to find out what is going on.  There's absolutely no need to wait in anxiety like this especially over a week since having your scan done.

jeterzim said:

CT SCAN REPORT UPDATE

Following your encouraging suggestions, I contacted the Radiology office and the respondent was kind enough to immediately email me the CT scan report that included two scans - CT Pelvis w/Contrast and CT Chest w/Contrast (great concern and probably cause for elevated CEA). I immediately called my Oncologist office and secured a "walk in appointment" for early Monday morning (6/13/16).  Now I don't have to wait until Friday (6/17).  

Delores

If you don't mind posting up, what did the radiologist find in your scans?  Obviously there was something in the scans or the oncologist wouldn't have moved your appointment up.  Did you get a copy of the scans on CD?  I assume your oncologist is able to gain access to the scan images if they weren't sent over to him/her in its entirety.

jeterzim said:

Followup to CT Scan

Since my last post on 6/11/16, my Oncologist and I met on 6/17/16.  During our meeting, we engaged ina discussion that resulted in the decision that I have a "CT-guided biopsy of left lower lobe peripheral pulmonary nodule."  I had the biopsy on 6/23/16.  I am now scheduled to begin Chemo on 7/11/16. Thanks for your encouragement that I become proactive, pursue and get things moving!  Your encouragment gave me the courage to expedite the assistance I needed from my Oncologist.  I am very grateful and will keep you posted.  

Delores

 

 

I am sorry that your results were positive, but glad that you are moving in the right direction and getting the lung mets addressed. 

The forum is a wonderful place where we can support and guide each other through this awful journey. 

I am glad that we were able to help you, and hope that you continue to visit us here and let us travel the road with you. Also, your experience will be a guide for others. 

SUE

Delores,

I think you and I are in the same boat, kinda.  The last time I'd had a CEA was in July 2015 and it was less than 1.   I went through chemo for 6 months, through April of this year.  Once I finished what was supposed to be the first line chemo my CEA came back at 14 and CT scan showed mets on liver and lung. 

I was getting blood work drawn the day of my infusion therapy and I assumed that sometime during the course of treatment that my oncologist was ordering a CEA.   He wasn't, he's fired, and I've got a new oncologist who is more communicative.  That wasn't the only thing he didn't do, i.e., I was under the oncologist's care but was getting most of my updates and info from my surgeon.  I had to get a copy of my CT scan to find out that, in addition to the liver mets, I also had a node on my lung. 

Point is,  it really is important to take the initiative and not do what I did which was to make the assumption that they are always on top of things, because they can't be.  I know better, but my excuse is that I was too fatigued and not quite as sharp as I should have been during the chemo and just missed it.  Lousy excuse but it's the one I'm sticking with.

I now have a new oncologist who ordered a full body PET scan to see how pervasive the mets is and, after quizzing her for about 30 minutes, appears to be up on all the latest treatments and understands the concept of multi-modal therapies.   It was obvious she'd actually read my chart. 

When I asked for a second opinion one of my criteria was that I wanted someone who would not give me "blue-sky" news.  I wanted someone who would give me all of the facts so I could actively participate in my treatment. I did not want someone who would give me the "just trust me, I know what I'm doing" treatment.

Not everyone wants to know all of the details.  The one detail I don't want to know is best stated by Han Solo  "Never tell me the odds". However, just about everything else I do want to know.

Not to beat a dead horse (who come's up with these sayings... )   but when patients don't ask questions or don't question the answers they get, the doctor is always going to assume that silence is approval.   That's never in a patients best interest.

Ok, stepping down from soapbox now...

Best of luck in your treatment.

Bill