Rising CEA, suspicous scan, crazy nervous - thoughts please?

[TimT]

Hi wonderful/thoughtful CRC survivors,
Had a c/t scan about a month ago which showed changed nodularity around the anastomosis/descending colon. This nodularity also showed up on a scan 4 months ago which was my first pelvic scan post-surgery. The radiologist states in the report it was either fat necrosis (scar tissue) or developing carcinomatosis (recurrence). Too small to tell (the size of a grain of rice). My surgical onc suspects/interprets it is only as scar tissue as he says this stuff moves around and changes as it heals (inflammation also). He also analyzed the c/t scan. On top of that my CEA has gone from 2.9 to 3.4 to 3.9 to 5.3 then down to 4.8 since surgery a year ago (3.0 is the reference top). No evidence of any disease, but this does not appear to be a good development and has me crazy nervous/anxious!!!!
Any thoughts/opinions from you nice folks may be helpful. Anyone have any similar conditions to this with good or bad outcomes? Thanks for your help!

[RixInPhx]

What are the dates on those CEA values?
What does your medical team recommend: Wait and see? More tests at this time? Other?

I have no input, except to ask these questions so others might be able to help.

HTH, Rick

[TimT]

Thanks for the interest. The 3 oncs i deal with say wait and see, but didn't seem overly concerned. Another c/t scan and blood work in 2 months. The CEA values were 2.9 june 2011; 3.4 oct 2011; 3.9 jan 2012; 5.3 april 2012; and 4.8 two weeks ago. I also did my one-year post-op colonoscopy two weeks ago. They thought maybe it was a polyp causing the CEA to rise, but the colon was clean-clean-clean and a biopsy at the anastomosis was negative.
Thanks

[SkiFletch]

Don't forget Tim that inflamation can also increase CEA, especially on the magnitudes you're talking about... IF your docs are right and the anastamotic business was just healing and inflamation, that could count for the CEA rise. Ultimately though at those numbers, sizes, and schedule, they're probably all correct in saying wait and see till your next scans/blood/etc. I know it's almost impossible to do, but you have to try to not worry about it until then. Sounds like you're on the right track at this point in time. It's a decent enough way off, but I'll wish you luck on your scan anyways

[NedPlease]

Understand the anxiety! 4.8 is a downward trend, so that's good. Same situation here with a slight elevation last month- I cried- geez. Two weeks later it was lower, but not as low as it has been. Tomorrow I call for today's CEA result. Wishing us both luck with this.

[TimT]

Hey guys,
Thanks for the input. Good luck on your CEA results NEDPLEASE. Lets hope they all trend downward!
Whats also strange about this CEA stuff, is that i've been running parallel CEA tests with my local chemo onc, and results were somewhat different. The results were 4.7 (dec 2011) and 4.5 (mar 2015) using the "roche methodology" which has a reference top of 4.7, so i was within the normal reference range of these tests (labcorp). I'm thinking I may have my local onc run another CEA in a few weeks just to see where we are. I am hope it is just inflammation, as there seems to be plenty down there with my modified plumbing!
Another FREAKY EXPERIENCE I had was being awake during the last half of my colonoscopy a couple of weeks ago. Although very loopy, I was able to watch it on the video monitor and discuss it with the doc, while she worked the tube. I told next time I'm bringing the wine/dinner and will wear my best suit! Very surreal experience!

[Ivona]

Well...in all of my years of meeting cancer patients and survivors...here and at my local support group, I have never heard of anyone who had a recurrence in the same spot as the original tumour! To my knowledge, the common spots for a recurrece are initially liver, lungs and/or peritoneum....followed by bone and in some extreme cases brain.

My resection was done at the sphigmoid area..and I suffered a lot of pain and discomfort in the anastomosis area for quite a long time. I had stricture and scar tissue so bad that I was initially unable to have a followup colonoscopy. But I perservered and had my G.I. doc keep trying...and gently stretch the anastomosis site....and eventually he was able to do a proper colonsocpy ..altho he used a pediatric scope!

So what I am trying to tell you is that you quite likely do have scar tissue at the site. The CEA flucutation is interesting...but it's also telling that it went down.

Keep bugging the docs to try to figure out what exactly is going on!

Good luck!

[NedPlease]

Thanks, TimT. Good news this morning! 1.1 from 1.4 three weeks ago. Well within normal, but I had recurrence at 1.8, so worrisome even at that low number. It's a "beautiful trend", as my onc says.
I might like a FREAKY colonoscopy. I'd really like my very scientific husband to be present to really get the details.
Wishing for you a "beautiful trend"

[Patience]

My husband had Stage 1CC years ago, with regular followup colonscopies (all clear). He had an elevated CEA at one point, but his GP said that CEAs were unreliable and that the colonoscopy told a better story.

Jump ahead a few years. To cut it short, my husband has high CEA and has been diagnosed with Stage IV lung cancer (a new primary).So much for having clear colonoscopies .... while busy with one concern, another unrelated cancer sneaks up. Go figure.

[TimT]

Good deal, NedPlease on your downward trend. Good and interesting to hear from folks whose CEA levels are within the normal range and are still effected. I guess these numbers can be all over the board and different for each of us. It was interesting that my CEA level at diagnosis (18 mos ago) with cancer and 3 addional benign polyps was only 2.7.
Ivona, thanks for your thoughts! My medical onc shared your opinion and said he would be very suprised if recurrence came back near the original tumor site, as the radiation had done its job and killed the entire tumor. He said its rare. The "grain of rice" sized nodules they see on the c/t are actually on the outer surface of the colon/anastomosis at areas where they cut surrounding tissue to get the clear radial margins. The surgical onc tells me, during surgery he removes fatty tissue from the surfaces of other organs and inserts them into the voids where the tumor area specimen was removed. Amazing/crazy stuff! He says this stuff takes a long time to heal and moves around a lot (like molasses) and thats why he interprets it as scar tissue. I am also having some of those same issues with a norrowing of the anastmosis. Not fun, but things are improving. At one point, during a routine procto exam, my surgeon gave me an unannounced reeming that had me crying and screaming like a baby. Boy did I need some counseling and whiskey after that one. I told him I could have got that done for free down on Bourbon St. in my home town.

[bala]

Hello Tim,

How are you? My mother is experiencing similar problem with elevated CEA - Her CEA has rised from 2.7 (after chemo) in 2011 to 5.06 now in april 2013. It has been rising steadily.

Pet Scan is with impressions - Small nodler tissue with stable metabolic activity. Our onc's are not sure whether it is an inflammation or slowly rising cancer.

Yesterday we did a colonoscopy and found a small polyp. WE have sent for biopsy.

When I went through this post, your case seems to be similar.. We're much worried about our current situation with the CEA rising to 5.06..

Please let me know your thoughts.