zx10guy wrote:We may end up ceasing to monitor CEA.
Although the CEA rise causes you a lot of stress, with CEA rising or accelerating, cessation of CEA monitoring could be an especially bad idea now. While I hope that your CEA mystery is one for the record books on false alarms, I wouldn't literally bet everything on CEA being totally useless and misleading either. With a satisfactory level of investigation, your apparent exception might actually "prove the rule" (model) about CEA.
CEA may have some bearing on size and potential for tissue transformation. Until now, the anomaly has been relatively benign, whether a slow moving cancer or a not-a-cancer mystery. A single lump that doesn't metastasize has more treatment possibilities. One simple model is to view the CEA reactive molecule as a carrier of multiple, different kinds of fittings (epitopes). If this fitting has a counterpart for cell docking then a cancer can spread more easily. So for my wife, this included the too commonly fatal CSLEX1-CA199 pair for CRC metastasis, where CSLEX1 reflects a particular fitting option on the CEA carrier molecule. As long as a "successful" metastatic pair doesn't develop (tumor age/size/hypoxia often matter). A lack of a CSLEX1 reactive fitting or several other fittings, on your CEA reactive tissues might be part of the answer to your mystery, or a lack of CA199 stainable tissues for docking, or both. If
the source tissue is cancerous.
In my wife's case there was almost a perfect correlation between lymph node volumes and CEA jumps, clear stairsteps as apparently small lymph nodes became enlarged ones. What scared the hell out of me in 2010, was when her CA19-9 began a much faster, exponential rise after the last, largest CEA jump. Fortunately we were able to increase chemistries until the CA19-9 totally collapsed back to baseline (but CEA was still unchanged), and then get all the big nodes chopped out before a total loss of containment occurred.
I would be finding doctors with bigger toolkits. Depending on resources and affordability,
1. I would demand what secondary markers your doctors are watching and their background.
2. I would consider expanding various blood analyses tried. (especially CA199 at least once)
3. I might look for someone with a CEA related contrast that had passed its phase 1 testing for toxicity in humans. You're not looking for a diagnosis, just an anomaly's location.
4. I might consider trying benign chemistries to stop/shrink the CEA or other anomalies and improve immune surveillance.