My tumor marker numbers doubled

Barbara2 · 03-04-2009, 05:01 PM

I was so worried about the tumor marker results this time...just a feeling. I see my onc every 3 months. Last time the numbers of the CA25-27 were 23.1, which was a small amount higher than it's ever been. (But 2 years ago my onc switched from the CA 15-3 to the CA25-27 which you can't compare, so my records are within a 2 year time frame.)

This time they were 45.3. My onc said we would do a cat scan and bone scan and in a couple weeks check the markers again.

I do have a very bad sore throat. Is it at all possible that this could raise the numbers that much? I'm dreaming, I'm sure. I know that benign conditions can cause the markers to elevate, but it is things like kidney cysts, ovarian cysts, etc. that cause them to rise, plus I don't know how high the numbers can go in these situations.

Symptoms? Achy back that I thought was due to Zometa or Arimidex, as I have had aches since the very begining of cancer, so I hoped this was more of the same. Plus some fatigue just this past week but nothing major. I am so frightened, just like everyone else here. It's the nuts.

hutchibk · 03-04-2009, 05:15 PM

B - please try not to worry too much, as excessive worry is not at all productive, and just wastes valuable time and energy. That said, it's only natural...

I am really glad that your doc is following through swiftly on scans! I would push them to add a brain MRI. My markers started to inch up two years ago and when nothing showed up in the torso scans, he agreed we should just be prudent and get a brain MRI (even though I had NO symptoms of any kind). Sure enough, that's when we found 5 little spots and a few tiny punctates. We found them very early and have squashed them all, but it might have been harder if we didn't go looking and hadn't found them early.

Becky · 03-04-2009, 06:11 PM

Keep the faith Barbara! Don't put your energy where you don't want (or need) it to be. Being sick can make the markers rise as can too much caffeine or other stimulants (were you taking sudafed type meds for your cold). Try to relax - stupid to say I know but try. See what happens with the markers and get them redone as soon as you feel well and (don't) drink coffee, tea, hot chocolate, cola - control everything you can.

I think you'll see that everything will be ok. We will all be worried with you because I know its hard not too be.

Big hug to you

Jackie07 · 03-04-2009, 07:16 PM

I see now why my oncologist wouldn't let me have tumor marker test - it's not 100% accurate (according to him) and will bring more worries if the number goes up unexpectedly.

Is that you in the picture? I am wondering how the poodle (?) got to stand on top of the schnauzer. Or is it just a visual trick?

Glad your Onco is taking some actions. False alarm or not, I think doing something is the better choice in every aspect. Hope everything turns out O.K.

sassy · 03-04-2009, 07:43 PM

Barbara,

I have no wisdom to impart other than try not to worry too much, and know that we all understand and are here for you. I'll keep you in my thoughts and prayers.

Mary Anne in TX · 03-04-2009, 07:55 PM

Hi Barbara! How about if I worry for you for a couple of hours and give you a break. My markers lived in the 40's for so long thru the 3rd year of herceptin. It can be other stuff you're taking or whatever. Thank goodness for good onc.s who act quickly and get our mind back on track. You've got my prayers that all is well. Hope the angels bombard you with peace tonight! ma

Jean · 03-04-2009, 08:41 PM

Barbara,
As you already realize the markers can rise for non cancer reasons. Please try to think positve thoughts,
(I know easier said than done). The aches and joint
discomfort from the AI, is just that, from the AI.
AI joint pain comes and goes. Your sore throat and
cold could have effected the markers. Glad that your dr. is quick to do some tests.

Wishing you all the best...and please keep us updated.
Regards,
jean

harrie · 03-04-2009, 11:59 PM

Barbara, one time after my mastectomy, my CA125 rose to around 70. Had the CAT scans and it all came back fine. Retook the CA125 and the numbers dropped to normal.
Joint pains, I agree with Jean, prob the AI. Was talking to a friend today who gets pain in her back and legs, all from the Ai she is taking.
But to be safe, good that your dr will be following up with the scans. It is stressful waiting for those results, but the good thing is that when they come back all good, you know for sure you are NED.

sarah · 03-05-2009, 01:08 AM

About AIs I was told to take them at night to lessen the side effects.
my markers have bounced around also. I've often wondered if it's a winter syndrome? I know we're supposed to take more vitamin D in the winter to make up for the lost sunshine effect. Hopefully it's just a temporary glitch.
hugs and love
sarah

Shobha · 03-05-2009, 11:51 AM

Barbara, Praying that this is just a false alarm and you will get the peace of mind once the scans are back.

My onc will not let me take any tumor marker tests, probably because they come back with inaccurate results so often.

Sending lots of prayers and positive vibes your way!

jones7676 · 03-05-2009, 02:58 PM

Barbara,

Had a friend who's markers rose slowly each time through the year and the monitored her closely and made sure she didn't miss any scans or tests...she was worried all the time. Subtle, changes occurred within her body - but nothing significant.

Recently, all her markers went wayyyyyy down and they have no scientific reason to explain it -etc. She is fine. We were both always very glad that they kept a close eye on her because of the changes, but it was a worrying factor for her all the time.

Sometimes she and I wonder about stress being a factor as I happen to know her son graduates this spring and when she was first diagnosed etc. that was her biggest worry - to live long enough to see him graduate school.

Just a thought!

I hope it all comes out fine for you.

Lien · 03-05-2009, 03:41 PM

Here in the Netherlands we only do Ca markers to monitor treatment results. Markers can go up and down for non-cancer reasons and doctors tend to test them several times before they start doing scans etc. They think that they cause too much stress, so should be avoided in a-symptomatic patients.

My markers weren't elevated at all. Not when I thought I was having surgery to take a benign nodule out, nor later, when it had turned out to be cancer.

Hope this helps a little, although I know you will keep worrying until the scan results are in.

Hang in there! It's very likely that the aches are caused by the AI.

Hugs

Jacqueline

Barbara2 · 03-05-2009, 03:45 PM

To all: I am very grateful for your tips and words of encouragement. Yes, it is hard to remain calm when for 6 years the tumor marker numbers have stayed within the same 3-4 numbers the entire time, then suddenly the highest number doubles. After calling my husband (who is my rock and best friend in the world) I went immediately to the Her2 support group for advice and support. I couldn't get here fast enough. This is where we know we can find understanding and help. Thanks to Joe...what a God send.

On Wed. March 11th I am sceduled for a CAT scan and bone scan and will visit my onc the next day for results. I recently had a brain MRI so that can be skipped for now.

Jackie07: Yes, I am in the picture with my 2 schnauzers, one of which is quite light in color, so she may look like a poodle!

Thanks, everyone!

Jackie07 · 03-05-2009, 09:00 PM

Wow, you certainly look very, very young for a 58-year-old. Thanks for keeping us posted.

About the dog - I guess I still miss my little poodle very much. You looked very happy playing with them.

Colleen007 · 03-06-2009, 05:53 PM

Hi Barbara,

My tumor markers started in the 300's - 400's when I was diagnosed and got back to "normal" ranges. For the last year or more, they have been slightly higher than "normal", but every scan I was sent for came back negative for progression. Now it seems that whenever the markers jump up a little, it is a flag that I probably have yet another sinus infection. Do listen to the wonderful advice that the others have given and try not to worry about it.

Joan M · 03-07-2009, 06:35 PM

Barbara,

The number is very low. But I'm glad that you're onc seems on top of it by following up with scans. A lot of oncs wouldn't do that. They'd suggest waiting another three months to repeat the tumor markers.

Joan

Barbara2 · 03-10-2009, 02:16 PM

Hi, Harrie, When you said, "Barbara, one time after my mastectomy, my CA125 rose to around 70." Did you mean the CA27.29 or was it the CA125?
Thanks...

Mary Anne in TX · 03-10-2009, 03:41 PM

Will be thinking about you tomorrow, Barbara....ma

ElaineM · 03-10-2009, 09:23 PM

It is a good to follow up with scans or other tests.
Many things can affect tumor markers. Benign conditions and general inflamation in the body are two things that can also affect tumor markers.
Try to stay positive until you find out what is or isn't going on.

harrie · 03-10-2009, 11:42 PM

Barbara, in answer to your recent question, it was the CA125. After my mastectomy/reconst, I had plans to have my ovaries removed due to my BRCA2 status. So I met with the gynacologist who had me do the CA125 and it came back a high of 73. The CA125 is notorious for giving false readings as a dx tool for cancer. BUT since it came back high, I had to go through the who CAT scan process to ck out my ovaries, abdominal areas, lungs, etc. All came back fine. The next CA 125 that I took had normal scores.