CEA levels- help please!!!

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sirball
Posts: 20
Joined: Mon Jul 23, 2007 11:06 am
Location: San Diego, CA

CEA levels- help please!!!

Postby sirball » Mon Jul 23, 2007 11:13 am

I am new to this and am a little unsure how it works, but I really hope people respond to my question. Here is my story... I was diagnosed with Stage II colon cancer when I was 30 years old. I had 25 cm of the colon removed and 22 nodes removed. All margins and nodes were clean. I went through 6 months of FOLFOX. I stopped chemo last June. My CEAs have begun to rise and my doctors, as well as myself, are extremely concerned. They were 0.8 in December, 3.6 in March, 5 in June, and 9.9 in July. Last week I had a PET/CT, MRI, X-Rays, Colonoscopy, CBC, and CA-125 checked. They were all normal. My doctors are now talking about doing a laproscopy in the abdomen and pelvis. Has anyone else experienced rising CEAs with negative test results? My doctors are concerned, but stumped. I will be going to a major research hospital in a couple of weeks to get a second opinion. Please help!!! I am 20 months out from surgery. Any advice?

missjv
Posts: 1416
Joined: Tue Sep 12, 2006 10:38 am
Location: FLORIDA

Postby missjv » Mon Jul 23, 2007 11:25 am

hi,
well cea is a strange thing cause i was diagnosed stage 4 colon cancer last year with a cea of 2 and it never went above 3 even during chemo so i don't know how reliable the test really is. unless you have microscopic disease that is too small to be detected in scans thats the only reason i would think it would start to elevate. good luck i hope it is nothing.


missjv

Guest

Postby Guest » Mon Jul 23, 2007 11:36 am

Thanks for your response. I have heard that CEAs are unreliable. How strange that yours never showed any elevation. I am so concerned and don't want to have to face chemo, surgery, being sick again.

GlitterGirl
Posts: 8
Joined: Sun Jun 10, 2007 3:35 pm

Postby GlitterGirl » Mon Jul 23, 2007 6:16 pm

Hi there

I was also diagnosed Stage 2 at 31 years old. Towards the end of my 6 months Folfox my CEA jumped from 3 to 15. It then went back down to 9, then up to 10.7.

Like you I had tests - MRI, PET and regular CT (thank God I had insurance!) all of which have so far been negative. My oncologist thinks that chemo, infection and even diahorreah can give false positives.

I am going back for my end-of-chemo MR scan on Wednesday and having my bloods checked at the same time.... I will let you know if the elevated CEA did - in the end - mean more cancer, but I'm feeling good and despite elevated CEA they have not yet "found" anything...

With best wishes - and lots of positive thoughts!

Kate (UK)

Guest

CEA

Postby Guest » Tue Jul 24, 2007 7:26 am

Even if the CEA is rising due to cancer, CEA can begin rising 6 to 10 months before there is any clinical evidence of disease. It does seem that your numbers are rather high for no disease especially the June to July jump.

You don't hear much about the surgery to look around. In fact, at one point I mentioned it to the onc. and he told me I would never find one willing to do it.

sean
Posts: 293
Joined: Wed Mar 21, 2007 1:35 pm
Location: Vienna Virginia

Postby sean » Tue Jul 24, 2007 9:17 am

I do know there are aggressive oncologists out there. A friend stopped by the other day and his mother has stage IV colon cancer and has had more than one round of chemo. Her CEA is rising again (sorry - don't know the numbers) but no scans have detected anything. Her oncologist put her back on chemo based on the CEA alone. I know very little of her history, so I can't provide more detail than just that her oncologist doesn't appear to want to wait for something to be big enough to detect.
42 - dx Jan 3 2007 stage IIA colon
9 FOLFOX4, 3 5-FU completed Sep 24 2007
Blockage symptoms, Negative Colonoscopy, Positive PET Oct 2009
2nd Resection Oct 2009 - Suspected Local Recurrence was Negative

Guest

Postby Guest » Tue Jul 24, 2007 11:05 am

Thank you for all of your replies. Kate, I will be very interested to hear back from you. I hope it goes well on Wednesday- I will be thinking of you. Any more feedback would be greatly appreciated. Thank you!

GlitterGirl
Posts: 8
Joined: Sun Jun 10, 2007 3:35 pm

Postby GlitterGirl » Thu Jul 26, 2007 3:12 pm

Hi there, hope you're doing okay.

Update as promised...I had great news yesterday. The CEA reading they took in my last chemo week was 9 (down from 10.7) and yesterday's reading (4 weeks after final chemo) was 4.2, so I'm back within normal range...and a downward trend seems most likely.

MR scan of liver was clear, which was also a relief! He thinks I can stick to CT's in future... (I'm glad, I hate the thumping noise!!)

My onco is not worried about CEA - he said he would expect an upward trend and higher numbers for a recurrence. His view (and I can see from other posts that other docs are more cautious!) is that CEA is an accurate measure of toxicity in the bowel but not a hugely reliable indicator of cancer. He thinks my increase was caused by Oxaliplatin...and I really hope he's right!

I hope everything is going well for you. All the very best for your future treatment and fingers crossed for no mets!!

Kate
31 y/o, diagnosed Dukes B November 06, about to finish 6 months FOLOFOX....wooohooo!

sirball
Posts: 20
Joined: Mon Jul 23, 2007 11:06 am
Location: San Diego, CA

Postby sirball » Tue Jul 31, 2007 9:59 am

I am so glad to hear the news. I had my CEAs redrawn yesterday and will get the results today. My doctors held a tumor board and reviewed my scans. They have decided to biopsy some lymph nodes. Has anyone else had this experience?
Diagnosed with Stage IIA colon cancer in November 2005 at 30 years old. Rediagnosed Stage IV in October 2007- mets to ovaries and uterus.

Guest

Postby Guest » Tue Jul 31, 2007 3:29 pm

Hi there - thanks for your reply. Hope you're doing well.

Afraid I can't help with the lymph node biopsy but I wanted to wish you all the best for your blood results.

Best wishes, Kate

fes01

CEA

Postby fes01 » Mon Aug 13, 2007 5:30 pm

Any help would be appeciated. Husband diagnosed w/ St IV colon CA with mets to liver (6cm). Diagnosed and Had colostomy and external mucous fistula performed on 5/23. Told today that his CEA on 5/23 was 6 and 7/30, last tx was 4.5. He was smoker up until 5/23, when he was dx/had surgery, which I know increases this number so is this a decrease or just a status quo. I/we are so frustrated, colostomy is fine but mucous fistula has a mind of it's own and seems to have increased rectal pressure inclusing bloody discharge/clots just before every 2 week txs. Based on his symptoms and what I have read these CEA levels can not be true. Any thoughts - I am desperate so you can e-mail me at fes01@aol.com


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