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Scared of elevated CA125

Epinto profile image
13 Replies

Hi, just reviewed my recent lab work and my CA125 went from 14 to 30. Still within normal range as 35 is the highest, but I am scared that is jumped so high. Have been on Ibrance and faslodex injection for about 22 months. I have a history of fibroids and just saw my gyn and had a normal pap test. My gyn wants me to do a sonogram of abdomen/vaginal ultrasound because the machine he had in his office could not accurately measure if the fibroids were the same from the last 6 month visit. I am scared and as it is a weekend I cannot reach out to anyone. I am worried about this elevation and what it could mean. Anyone in the same experience, please share.

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Epinto
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13 Replies
marianne88 profile image
marianne88

Don’t be scared. I asked my oncologist about the CA125 and she said everyone’s goes up and down even people with no cancer. As long as they are under 35 you have nothing to worry about. Stay strong 💕

Epinto profile image
Epinto in reply to marianne88

Thank u for your reply. Freaking out though because my Ca125 was never over 18! Have fibroids that have always been large and wondering if they got bigger and if yes, why? Going for an ultrasound tmrow morning and will call my doctor on Monday to inquire about it. Trying to not get crazy until I get some answers. Thank u and be well.

marianne88 profile image
marianne88 in reply to Epinto

I really do know about the tumor markers because mine was 28 then 34 then back to 27 so I asked. She explained it to me and it calmed me down. Where are your Mets? What’s your story?

Epinto profile image
Epinto in reply to marianne88

Breast ca with Mets to the T2 area of the bone. So far, that’s been it. Was first diagnosed in 2011 and was ok until may 2016 with Mets. Negative Braca for breast and ovarian!!! Had stage 3 with lymph node involvement, of course the usual, mastectomy, radiation and chemo. On arimidex until it stopped working. Estrogen positive tumor. That’s it in a nutshell!!! Thank u for responding. It means a lot to me. No one can understand unless one is going through it!!

marianne88 profile image
marianne88 in reply to Epinto

Wow we have same story. I was 2012 had double reconstruction chemo rads blah blah blah. Good till August 2017 on tomoxifen. Cancer ate my iliac and that’s it for me too. Now on fluventral shots and ibrance. Doing ok. Hate side effects but dealing with it. Life is good and I hope your living your life

Epinto profile image
Epinto

Trying, but once in a while setbacks!! I am from Brooklyn and u?

Bluebird77 profile image
Bluebird77

Hello. I had a similar scare in December. My CA2729 went from 39 to 53, it was never above 40 before that. In January, it came back down to 43. I had some improvement in my tumors just before the rise so my oncologist thinks it may have been a tumor flare, but I've been told sometimes there is fluctuation and they never really know why it happened. I'm waiting for my bloodwork results for this month and hoping the downward trend continues. My CA2729 generally bounces between 36 and 40; however it was lower when I had 12 tumors in my liver than now that I have 2, so I sometimes wonder if any of it matters anyway! I know how bad the anxiety is and stressful the waiting. Hoping that you receive good results. I'm in Astoria, by the way, we are practically neighbors!

Epinto profile image
Epinto

Thanks for the response and good wishes to u as well. I know the markers fluctuate and when they go up it causes such anxiety!! I never had a ca125 go past 18!! So seeing 30 is unnerving even though it is still within normal limits!! I won’t be calm until I do a sonogram and speak to my doctor but I do appreciate the feedback. Yes, we r almost neighbors bluebird!

Moveit2012 profile image
Moveit2012

Personally I don’t view my tumor markers as indicators. I have bone mets to rib, t4,t5,l10,l12, sacrum. Completed 4 cycles of ibrance. Just completed pet which showed stable-no progression. Markers remained in the same range as prior to ibrance. BTW that’s well over 40. So for me not a real indicator. It is different for everyone. Good luck to you.

Epinto profile image
Epinto

Thank u for your reply. Be well

PJBinMI profile image
PJBinMI

Tumor markers are not precise! One main reasons some oncs don't use them is because a small change upward can cause anxiety in patients. And things besides cancer can cause them to rise and fall. Dying cancer cells can make them go up, too, and that is certainly not a bad thing! Usually, alot more attention is paid to how we are feeling! I'm a longer timer with mbc, 14 years on March 1, and my TM have been slowly climbing for the last two years but scans show no progression and we've not changed my meds. I have bone mets without symptoms.

I hope you will find peace of mind and be able to relax about TMs.

Epinto profile image
Epinto

Thank u so much. Trying to relax. U r an inspiration to be dealing with this for so many years!!!bless u

Bluebird77 profile image
Bluebird77

Hello Epinto, you mentioned you were looking at your lab reports when you noticed the increase in your CA125. Do you have access to your lab results online through a portal? I do, but my oncologist always gets the results first. I hope you were able to to reach your doctor and get some answers to ease your mind...keep us posted.

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