My high CEA journey.

Here's a post I made earlier in the year summarizing events I've gone through up till that point:

CEA has been a constant bane to me since my initial diagnosis in 2012.  Preoperative CEA was 13.9.  The lowest it dropped to was 3.11 when the clinic I went to used a lab that did the Siemans/Bayer assay test that had 0-3 as normal for non smokers and up to 5 for smokers.  Before I switched clinics, the lab at this clinic changed assay methods and went with the Roche test.  This changed the scale for what was considered normal.  Depending on the lab, the new normal CEA level is anywhere from 4 to 5.  Since then my blood work has been done with the Roche test which I only had one CEA test come in just below the normal limit.  All my other blood work has come in between 5 to 6.  This has been going on for the past 2 years.

Last year, during my normal checkup, CEA was run again and to my surprise....9.7.  A retest was ordered to make sure that number was real....came back at 11.  Ok.  So what's going on?  I had a CT with contrast done a few weeks prior to meeting up with my oncologist and having the CEA done.  That scan was clear.  My oncologist orders a PET.  That comes back clear.  So we're all scratching our heads wondering what is going on.  One last thing to do.  I was due for my 3 year colonoscopy.  Nothing was found during the colonoscopy and my GI doc was about to complete the exam.  He wanted to clean the cecum area of my colon to look before pulling the scope out.  That's when my colon shifted and a polyp popped out of my appendix.  He immediately said, that's not good.  Long story short about that is biopsies said high grade dysplasia.  Went back to my CRC surgeon and he did a right hemicolectomy to be sure nothing gets left behind.  Pathology comes back Stage 0 appendicial cancer.

I had 2 follow ups since the surgery.  CEA dropped back down to 5.4 and 5.2.  Everyone thinks, this was the cause of my CEA spike.  Fast forward to my recent check up just over a month ago.  Ask oncologist if I need to have a CT scan for this checkup.  He said no.  I go in and get CEA done.  Results come back at 15.6.  Here we go again.  Retest done to make sure no lab error.  16.7.  CT with contrast is now ordered.  Comes back clear.  I was already scheduled to have a small bowel capsule endoscopy.  GI doc tells me there were some things found but nothing that points to any cancer issues in my small bowel.  Talked to my CRC surgeon about what is going on.  He doesn't like what he's hearing and orders a PET/CT.  Had that done.  All clear too.  So what's left?  Colonoscopy.  Due to the elevated CEA nd my past history, GI doc agrees to move up the colonoscopy that was supposed to be during the summer; one year from when we found the appendicial cancer.  Again, nothing found.  So now I wait another couple of weeks to have my CEA retested.

If you want to talk about CEA panic, imagine having to deal with not a few tenths rise but several points of rise.  Depending on what the next reading says, my CRC surgeon is talking about doing exploratory surgery to see if there's something in my abdomen that isn't being picked up by scans.  My oncologist doesn't seem to worried and has said so.  He said I've always been on the high side with my CEA and this recent spike from the previous 3 months could be just my normal.  He said he's had patients which had CEAs as high as 20 end up not having any cancer recurrence.  I asked him how common is it.  He said in his practice he said about 1 in 4 of his patients being tracked with CEA will have high false positives.  He also said he's not convinced the CEA spike last year when the polyp with appendicial cancer was found was due to that cancer.  He said all along that polyps typically don't cause CEA elevation.  And the cancerous polyp I had was in situ with only the surface of the polyp having cancerous cells.  The rest was benign.

I guess we'll see if my oncologist is correct in two weeks.

Since then I've had a series of CEA tests done.  I've also had an endoscopy with ultrasound scanning of suspect areas and an MRI with contrast.  Both found no cancer concerns.  Just some thickening of the duodenum and jejenum.  The CEA readings were 14.2 (5/2) and 11.9 (6/19).  So we all thought ok it's going back down so things should return to my "normal".  At my 3 month checkup on 9/18, a CEA was done and it shot back up again to 15.2.  My oncologist said not to worry and he'll see me in 6 months.  No scans ordered and no repeat CEA in the interim.  I sat on this for a while until last week when I decided to discuss this spike with my GI doctor.  He felt there is definitely something going on and issued orders for blood work.  CEA came back from this order and it's now even higher at 20.2.  Ok.  Something seems to be going on.  I report this info to my oncologist who still says things are probably ok.  But he urged me to set up an office visit.  I saw him this past Tuesday.  He repeats the blood work but also orders a CT with contrast just to be safe.  I got the blood work back and my CEA is down again to 14.3 in a little less than a week.  I'm thinking this is good but wanted to wait till I got the CT report before putting this behind me.  I got the report yesterday.  All clear.  Still NED.

So right now, we don't know why all of a sudden this elevated CEA now appears to be my new normal.  My brother is a PA and suggested maybe I have a rheumatic or autoimmune disorder.  I brought up this theory to my oncologist who agreed that we should explore this.  More info about my past medical history, I've been diagnosed a long time ago with Raynauds and have had bouts of alopecia areata.

More discussion about CEA.  At the office visit on Tuesday, I had a frank conversation with my oncologist about this whole CEA thing.  He said something that actually makes things more clear about this whole situation around CEA.  He said CEA is typically elevated or tracked for metastatic disease.  He said typically CEA does not spike to high levels with only a tumor in your colon.  He mentioned this is why CEA is never used as an initial diagnostic tool for detecting cancer on someone without a history.  It is only used as one of the tools to monitor patients post cancer diagnosis to detect any recurrence or metastatic spread.  He said with me.  My CEA levels have always been above normal; with only recently spiking to the high levels we've seen.  He said this past history suggest there might be some cancer lurking somewhere in my body.  But he pointed out all of my scans since the initial surgery have all come up clean.  He mentioned even with this recent long term spike which was detected in March of this year, if this is caused by some cancer, we would have seen things manifest by now....loss of weight, physical signs and symptoms, etc.  Nothing.  I've actually put on some weight this year due to working out.

As you all can relate, this cancer journey we're all on can be one big rollercoaster.  Of course this has to happen now as I'm approaching 5 years since my initial diagnosis which will be December 18th.  So it looks like I'll be crossing that golden 5 year threshold NED.

As a parting gift to you all about high CEA with no cancer, I found this paper through my recent searches.  It's about a woman in Taiwan being followed after having colon cancer which metastisized to her ovary.  She was tracked since then with high CEA readings for 5/6 years.  During that period no cancer was found and we're talking about CEA readings all the way up to 1500 and going down to the lowest point of 68.5.  Yet no cancer.  So just because you have high CEA elevations doesn't mean you have cancer and to not lose hope.

https://academic.oup.com/jjco/article/36/12/811/874390