Scared and Confused

eric · 03-07-2007, 04:28 PM

Hi all,

My wife's (Caryn) tumor markers have been creeping up the past few months and when the last (CEA or CA27, not sure which) went to 6.8 (normal is 0-3) he sent her for a PET. After treament (gemzar/herceptin) for mets to liver and lungs, she's been NED since 01/05 which I am VERY thankful for. While the PET appeared ok, her latest marker jumped to 19 and the onc seems a bit perplexed. He's waiting for her to have her scheduled brain MRI although he doesn't feel that's related at all since it brain mets wouldn't usually effect these markers. She and I are very scared of her going onto treatment again, while I'm always petrified of the thought of losing her.

While I'm emailing to share my fears I'm also trying to understand why he was so quick to send her for a PET. Since this scan will only show activity that's reached a particular size, I was surprised that he didn't do a CAT and then a PET later on if necessary. I feel like he may just have to redo soon. I'm planning on asking him of his thought process, but was curious of everyone elses thoughts first.

I HATE THIS DISEASE!!!

Eric

jessica · 03-07-2007, 05:29 PM

So sorry you guys are going through this again!

Any chance of getting a CT/PET combo?
A combo study cuts out the add'l anxiety of having a CT that reveals something, then going in for a PET and waiting for those results too.
The quality of a CT in a combo study isn't as great, but atleast you have a baseline line "map" for the PET.

Maybe the onc was suspicious of how quickly Caryn's TM climbed & assumed that that correlated w/something large enough for the PET to see? Who knows...definitely ask. You'll feel more confident knowing what & why.

Remember, the not knowing & the waiting are the toughest parts. Soon you'll have all the information you need to make a plan, if you even need a plan and all the support & guidance from friends here.

Thoughts & prayers to you both~

Keep the Faith~

Brenda_D · 03-08-2007, 01:25 AM

My CA27-29 has been running 8, and my onc says that's within the normal range.

Normal is 0-3? Now I'm confused.

03-08-2007, 02:00 AM

Hi Eric,

I believe you're referring to your wife's CEA marker, not CA 27-29. CEA for non-smokers is, I believe, 0-2.5 and for smokers 0-5. The CA 27-29 range is about 0-37.7. It's slightly higher or lower from lab to lab.

Benda,

A CA 27-29 of 8 is indeed normal; wish mine was that low.

My markers have been elevated for some time, although not highly elevated and my oncologist reassures me all the time that I should not worry, although I do. I had lunch with a friend recently who brought along a woman who also had breast cancer. I was like the man who complained when he had no shoes until he met the man with no feet. My most recent CA 27-29 had been 45; hers she said was in the thousands. I didn't know they could go that high! She was on Xeloda at that time and said her markers were coming down and she felt good. She certainly looked good, and I went home much encouraged for both of us.

So, Eric, although you should get all the scans possible for your wife so you can both feel reassured, please don't worry too much. Tumor markers, as everyone keeps telling me, are highly unreliable. She may have a benign infection or some other innocuous reason for the rise.

And you should definitely question her doctor's reasoning for whatever tests he orders. Understanding why does help. Doctors may even order tests just to cover themselves and not because they think there's an advancement or recurrence. Very best to you both.

MGordon · 03-08-2007, 10:38 AM

I know and respect your fear. I would ask your Onc about getting a PET/CT Fusion - they do both tests and "model" the results into a 3-D image. My experience with tumor markers was terrible (Lisa's climbed every blood test for 7 years even though they rarely seemed to correlate with new metastasis) but remember:

Love your wife and trust your healing team - and be a contributing memeber of the process!

Love and Light
Mel

Joy · 03-08-2007, 11:51 AM

Great thoughts from great people have already been shared here, but I just wanted to support you. And the PET was good which is something to remember even knowing the limitations of that imaging study. A CT could definitely give you more information and might be worth doing. And markers can make us crazy be they accurate or not. And as Mel put it beautifully, I, too, respect your fear.

Gather all the information that you and Caryn need to feel better. And know that we are here and sending good, healthy thoughts your way. And please keep us posted.

Best, best wishes.

newgg · 03-08-2007, 01:04 PM

I also have been following elevating tumor markers for the past few months. And as you say....why do I complain about these little jumps....Ca 15 from 26 to 46 and HER2 serum from 8 to 12.....when others have such HUGE numbers. So after PET/CT and bone scan are coming back OK.......I just need to relax. Never thought it would happen but soooooo very delighted when the doc says....congrats.....you have arthritis in your left hip!! Wonderful words....arthritis....whoopeee !!
Hugs, Bonnie

Lolly · 03-08-2007, 03:32 PM

Eric, don't know if this will help or not but my onc doesn't even do tumor markers on me any more, as they have shown no correlation with disease progression or regression for years now, although in the early years of MBC the CEA was somewhat accurate. We used the Her2 Serum test to track response to treatment when I began Xeloda last year, and that did seem to reflect tumor regression. But as far as confirming progression, we now rely on symptoms and PET/CT. This has been VERY accurate for me.
Hang in there, we're sending prayers and best wishes.

<3 Lolly

Becky · 03-08-2007, 06:24 PM

Dear Eric

I almost don't want to get tumor markers done anymore. They flip flop all around. 11, 26, 8, 19. It is very stressful. Butttttt, I do not have metastatic disease and I don't know how Caryn's markers might correlate to her disease. Therefore, I feel Lolly's advice is sound not because I think more testing will find something but that I know I would not feel comfortable if I wasn't sure that nothing else was wrong. And, you wouldn't ask if you felt comfortable (and I am sure you are not). So, Caryn and you should discuss next steps with her oncologist so that both of you have peace of mind.

eric · 03-08-2007, 09:00 PM

Thank you all. Your support and caring has helped for now. I'll keep you posted.

Love you all,
Eric

StephN · 03-09-2007, 12:56 AM

Dear Eric -
I am sorry to hear that Caryn's markers are on the rise.

For me, the CEA did rise with my brain mets. My CA 27-29 stayed rock steady. But the CEA slowly rose and then went quickly out of normal range and up to around 14-15 before my Gamma Knife. No other mets and neg PET since then.

I believe this was the case with Chistine, this site's founder that her CEA was the tipoff that something was amiss and it was in her brain.