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Aug 5, 2018 · Realistic CEA Perspective Needed in Colorectal Cancer

Greetings all. Wanted to post an update. I had a PET scan last week and got a call the same day from my oncologist's office. They went over the results with me, and I am to see my oncologist tomorrow. So without going into too much detail until I understand more, the scan showed two metastatic lymph nodes in the region of the original tumor and potential metastasis near the location of the previous iliostomy. I will continue to post updates once my doctor and I parse through this.

Good luck to all who are fighting the good fight.

Jul 26, 2018 · Realistic CEA Perspective Needed in Colorectal Cancer

Just updating…Mondays blood work came back yesterday. CEA has now risen to 21. Scheduling PET and CT to see if we can find anything. I'll update as soon as I have more info.

Jul 24, 2018 · Realistic CEA Perspective Needed in Colorectal Cancer

Hey @colleenyoung

Met with doctor yesterday to talk about things. Long story short, it seems that scanning and waiting for something to show up is the only option available.

I've been with this doctor for nearly a year and have always enjoyed the amount of time, attention, and information he brings. With that said, there were a couple of odd things from yesterday's appointment.

First, he did not have my original cancer staging. He said it didn't exist anywhere he could find. However, I showed him my pathology report from UAR where the number was listed appropriately in the correct place. He downplayed and said the original staging was not important.

I then asked about my blood work (CEA) levels pre-op to current. He had no results from before I started seeing him. (I've only been with him from November of last year) Again, he downplayed not having/synthesizing >1 year of info from those tests as fairly unimportant to current strategy.

Next, I requested a PET scan. He actually said that PET scans were less effective than CT scans for detecting recurrence.

We spoke about tumor markers and why only CEA has been used thus far. (this part of the explanation is a blur, but I do have an audio recording to review)

At the end of it all, I requested CT/PET scan, pending insurance approval, and took more blood to check for all tumor markers and info available. The wait-and-see approach is excruciating, but it may be the best that we have?

Again, THANK YOU all for reading and following up. I will keep you posted as things progress. Looking forward to reading any thoughts/opinions that other's have to share!

Jul 21, 2018 · Realistic CEA Perspective Needed in Colorectal Cancer

Thank you so much for the information and links. I read through them this morning over coffee. A ton of good info there. Understanding that the CEA is not used alone to determine recurrence, and especially not useful for initial diagnosis, I have thoughts on the raw data of the study.

The final chart lists CEA testing results for every patient in the study. In addition, it indicates patients with recurrence. When I sort by recurrence, I find CEA tests of >14 among those with recurrence, whereas when I look at patients that had no recurrence, the highest value that I found was 7.

Among the patients with recurrences, there are plenty of individuals with normal CEA levels . I believe this lends itself to the statement that CEA levels alone cannot detect, since patients deal with recurrence at normal CEA levels, and often don't have recurrence with elevated CEA. However, since the data on patients that did not have a recurrence includes no CEA levels above 7, it seems that numbers >10 lead to recurrence or related preventative measures (chemo, etc.).

Tricky stuff to parse through, but extremely interesting.

I can't say thank you enough to all who read and respond. Opinions, experiences, and support are so critical to navigating this landscape.

Thank you, thank you, thank you!

Jul 20, 2018 · Realistic CEA Perspective Needed in Colorectal Cancer

Thank you so much for the response! It's good to hear from others who have, and are, going through this. Thank you. One of my biggest fears is having something in the blood work that I should act on, while waiting for a scan to show something. It's been two months since my last CT scan, and I'm hoping that a PET scan might give more insight. Did your husband find his recurrence through CT or PET?

Again, thank you so much for taking the time to read!

Jul 20, 2018 · Realistic CEA Perspective Needed in Colorectal Cancer

New to the forum. Hoping I can find someone out there with an opinion.

35yo Male (at time of diagnosis)
Diagnosed 1/16 with T3n1 colo-rectal cancer
6 weeks preoperative chemotherapy
Lower anterior resection 6/16
Resection take down 8/16 🙂 🙂 🙂

Since the surgery, my CEA (1.6 preoperative/ .4 postoperative) has climbed steadily from .4 to 17.6 (current). It measured 14.8 two months ago and 17.6 this month. Planning to see my doctor on Monday. I'm looking for any thoughts/experiences from others to help me prepare for the meeting. After studying different causes for elevated CEA, smoking/infection/etc., none seems to account for how high this number is. It seems that the typical CEA cut-off 10 is very rarely because of these underlying factors.

What I'm really looking for is reality. I would rather know that there is a near certain chance of recurrence, than to avoid statistics or studies that may indicate recurrence. I want to know what my next steps/options are (requesting a PET scan on Monday). I think understanding my current situation, will help me prepare, mentally, for what might be coming.

After all of my reading and searching, I have trouble seeing these CEA results as anything but indicative of recurrence.

Thank you so much for reading, and if you have thoughts and time to reply I would GREATLY appreciate it.