CEA @ 200

Keisler69

I was diagnosed with Stage IV Colon Cancer in May. The doctor removed 1 foot of my colon and tumor and they found nodgles in my lungs at my first oncology visit. My CEA was never over 3 until after 2 rounds of Chemo (3.49) and after 4 rounds it was 3.25. My uncle had been having similar pains as I had, which where minimal, but his have progressed. We finally talked him into going to the doctor. An endoscopy showed 2 ulcers and a CT showed a centimeter tumor/cyst in his pelic region. Yesterday was his first oncology appointment to set up a PET Scan where he learned there was also some abnormal fluids around his lungs as well. The PET Scan was scheduled for this Friday. His CEA came back today at 200 but insurance will not approve the scan until they have more assurance that he infact has cancer. (???WTH???) He has a colonoscopy scheduled for Aug. 10th, which to me seems a little far away with the CEA being that high. Has anyone else dealt with anything similar? Should his CEA not be of concern?? My mind is blown and any advice would be greatly appreciated...

SandiaBuddy

Appeal

The decision of the insurance company should be appealable.  You might enlist the physician as well to use the terms that the insurance company wants to hear to approve the scan.  Sometimes you must be quite proactive in getting the appropriate health care.

Keisler69

Is it just me or is a CEA of

Is it just me or is a CEA of 200 high???

Trubrit

Keisler69 said:

Is it just me or is a CEA of

Is it just me or is a CEA of 200 high???

CEA should be no higher than 5.0

so yes, 200 is extrememly high. 

Insurances always fight PET scans. My Onc just had me go ahead and then fight them afterwards. We always won. 

Good luck for your Uncle and for you. 

Tru

tanstaafl

action

A CEA of 200 is extremely serious.  It's a run, don't walk kind of number - which depending on  manufacturer "brand" would be 15 or 30 - that needs immediate follow ups.  It might not be colorectal cancer, a lot of solid cancers can elevate CEA but it is literally rare to not involve cancer at that CEA level.  I'd ask for the names of insurance managers with corporate responsibility because this sounds like a situation that could soon be a reportable situation to the state insurance department for life endangering obstruction and willful negligence.

You could build your infomation with other cancer (related) markers, DIY - in asia it's common to do a  gang of tests with 5 to 12 markers at a whack, including CA19-9 and AFP, markers that cost us under $20 to add on. LDH is a cheap liver marker that often has important CRC information too and we control for long term inflammation with ESR.  We actually usually order our own blood tests these days, because its more convenient, cheaper and quicker - never an argument. We  get next day service ordering for ourselves with one local lab, but LEF was easiest to start in the US.  Although not standard markers for CRC (they will resist), CA19 and AFP are more important right now for us and have been useful, CA19-9 from the start and AFP ater a few years was rising across a year or more interval.

A CT scan is the standard first CRC scan.  If insurance delays you and money was extremely tight, I might even do a flat (2D), really cheap-o X-ray out of pocket for speed and privacy with 1/50 the radiation of a CT scan, because in all likelihood you're dealing with a  serious, house on fire situation but we use extra blood tests and cancer markers.

I did immediately start reading the LEF, Life Extension Foundation articles on cancer, surgery, and CRC when my wife was first diagnosed. I immediately told her to start most of the recommended supplements and cimetidine. 

We followed a lot of their nonstandard advice additively, and added on more, to help her through surgery, chemo and cancer.  She's still alive and doing pretty well, when all other patients like her for our doctors' experience, are all long, long dead.  

Truth to tell, we totally wired out the insurance company and any backwards doctors on extra steps for the first year and paid it ourselves. Life is too precious for advice that is incomplete and obsolete in reality.  Also the extra information meant we could anticipate problems sooner and better, get extra chances on making the chemo work and to get a hard-to-get second surgery, "guide" the doctors thinking somewhat when they wanted to write us off, and push or fire as necessary.

 

 

 

Keisler69

Colonoscopy

My Uncle had his colonoscopy today and they found 1 polyp, which the doctor said looked benign but they are sending it for biopsy. He had an Endoscopy the beginning of June that only showed 2 small ulcers. A follow up CT showed a cm tumor/cyst in his pelvic region, but wasn't found during upper/lower GI. This man is literally in pain all day/ everyday (Norco no longer helps)  ; he has lost 40 lbs in 4 months because it hurts to eat & the only blood work that is "elevated" is his CEA. ANY help/thoughts/ideas at this point are welcome and much appreciated...