CEA markers....waiting.................

calamtykel

My cea's last month came up 2.8 (normal being 0 to less than 2.5).  My doctor wanted immediate scans - I told her I wanted the bloodwork repeated in a month, basically because I cannot afford scans.   My insurance has a terrible deductible and I'm already so in the hole because of BC. 

 I had my repeat yesterday and I'm now stuck playing the waiting game.  I thought I was "okay" mentally but yesterday my stomach hurt all day and I felt nauseous.  I took an ativan and it immediately helped me to feel better both mentally and physically, so I think that I'm really dealing with a lot of underlying anxiety and stress over this.  

I guess I won't get results until Friday or Monday at least -  right now I really cannot even think beyond that point. 

kathleen1966

Well this just sucks calamtykel. And to have to worry about insurance on top of it is just not fair. I hope someone chimes in soon.  I have never had a CEA test. But you are only a tiny bit over the normal mark.  Perhaps this is good?  I hope you get a normal reading soon so you can be free of worry and have a good nights sleep. What has your reading been in the past? 

calamtykel

Kathleen - I never thought to ask what my markers were before - at this point, I'm afraid to ask!  I assume they were low - I did ask on the phone if they were showing an upward increase in a pattern and the doctor said no (of course she was in the parking lot on her cell phone when I texted her after talking to the nurse, so she didn't have them in front of her.) 

The doctor told me that she wasn't "worried" since it's just a notch over normal for a non smoker, but that they are still considered "elevated".  The nurse made the mistake of saying "This happens all the time with patients - about 40% of the time it's nothing".  HUH?"  Says me:"  SO you're saying I have a 60% chance that it's "something"??  She kind of stuttered and just said have the scans. 

Yeah, that set me for an night's sleep - after a good hard cry!

My BC markers were normal as were all the liver counts and all of that.  But good grief - I hate that we have to go through this!  

I go from being okay to being paranoid of every symptom....

Mmahle46

I have been trying to post on here for 2 days. Trying from my tablet now....anyway my cea was 6.5 at my last visit in may 3 days after a clean pet.  This was in may in the meantime I started having bad neck/back pain.  Before BC I had spinal surgery so its probably that but you know where the mind goes. I had an MRI yesterday the sent me home with the cd and to me it doesn't look good at all.  I get the written report Tuesday.  Hang in there calamtykel praying for you. 

calamtykel

hang in there mmahle - an MRI will show up just about anything as far as inflammation and that's why many doctors want bone scans instead.  It may be all due to the surgery that you had. 

 I know how horrendous this all is - I swear, the part of this disease that is REALLY not fair is the emotional toll it takes on us.  Two years out -and you get slammed out of nowhere with suspicious news - it's enough to make you never want to go back for those checkups again...sometimes being an ostrich seems so appealing!

dlb823

(((calamtykel))) and (((Mmahle46))), I know the wait must be excruciating for you both, but I'm going to believe that everything will be okay.    

Mmahle, if you're on Tamox, I'm wondering if your back & neck pain might logically be from that exaccerbating any arthritis, which is very common after injuries and/or surgeries.

calamtykel, once we've had bc, doctors always err on the side of caution re. ordering tests.  I would trust that your doctor said she isn't worried.  And that percentage given you by the nurse doesn't make sense to me.   Even if her reference was very broad and general, I still think her math is off, but it's way off for women with Stage IIa bc just two years from dx.       Deanna

calamtykel

Hi Deanna - what I think she "meant" by those numbers were that with an elevated CEA, 40% of the time things are okay WHEN they send the patient for scans.  But  like you, I wondered what she meant when I got off with her since elevated CEA's are all different.  If it were a 50 say, would that mean that 40% of the time things are okay?? If it continued to climb as opposed to a one time raise- 40% of the time things are okay?  CEA also means something different when you have colon cancer than breast cancer as it is MAINLY a marker for colon cancer (more accurate for that)- so is she using the breast cancer stats or "overall "cancer stats from all the kinds of cancer they treat there?

My head's spinning.  I guess it doesn't matter - at this point, it is what it is.  I'm waiting to hear back from them - I called to see if the results were in yet.  

I detest the waiting.  Anybody else find that the days those tests are to come back that you feel paralyzed?  Like you're at a crossroads waiting for direction and you can't move? UGH!

lovetodance

CEA IS VERY UNRELIABLE. NORMAL VALUES VARY BETWEEN LABS. IN MINE 5.0 IS THE UPPER HIGH. 2.8 IS NOTHING. MY PREOP CEA WAS .7, WITH THE CANCER IN, THEN AFTER CHEMO/AND RECONSTRUCTIVE SURGERIES/WOUND HEALING PROBLEMS AND LOW THYROID WENT UP TO 6 AND MY ONC WAS NOT CONCERNED. LAST WEEK WAS 2.9 AND 3 MONTHS AGO 2.6. HAD 4 PET' ALREADY AND ALL FINE LAST ONE 3 WKS AGO. LOW THYROID AND INFLAMMATION CAN CAUSE MILD ELEVATIONS IN CEA BECAUSE LOWER LIVER CLEARANCE. DOCTORS WORRY IF IT CONTINUES TO GO UP AND UP BUT THESE FLUCTUATIONS ARE MINOR NOW, IF THEY GO TO 10-15-20 THEN I WOULD WORRY. CA 153 AND CA 27.29 ARE MORE RELIABLE FOR BREAST. ARE YOU GETTING THOSE? I ASKED MANY DR'S AND THEY SAY CEA IS BULLSHIT FOR BC UNLESS IT GOES VERY HIGH AND CONSISTENT