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Elevated CA 125: terrified

Hi all,

It's been a long time since I've visited our boards because I was doing great. I switched oncologists because my one of 8 years retired, and this one checks CA125 markers, unlike my previous one who didn't because she said they were notoriously unreliable. The last two visits with this new guy my markers were normal, now they are elevated to 57 (just finished my check up).

He had me redo blood work today, which I did. I will be scheduled for a CT scan, then I see him next week.

Talk me off the cliff. I'm ready to jump. Help.

Claire in AZ

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Comments

  • spookiesmom
    spookiesmom Member Posts: 8,167

    They can and do jump around. Last March mine jumped 30 points. It was from stress, DH passed the week after that draw. Next draw, went right back down. Anything new going on

  • claireinaz
    claireinaz Member Posts: 679

    Hi SM,

    Nothing new going on. Liver enzymes. great, calcium great, all that was great. Just this.

    Claire

  • ShetlandPony
    ShetlandPony Member Posts: 3,063

    Please don't panic at one elevated number. (I know, easier said than done.) Your onc sounds quite proactive and I am sure will be re-checking to see if there is an actual trend.

  • minustwo
    minustwo Member Posts: 13,070

    Claire - nice to see you - but sorry to see you..... My oncologist also says cancer antigen tests are notoriously un-reliable. Maybe stress?? Waiting is even harder once you've been through it before. Fingers crossed.

  • claireinaz
    claireinaz Member Posts: 679

    I do wonder if it could be related to the fairly new med I take for Ménière's disease. It is off label, but the only med to relieve symptoms of Menieres. It is a histamine and reduces severity and frequency of vertigo attacks. I have to buy it from a compounding pharmacy. It works, and my ENT writes the script.

    But I know that tumors like ovarian and breast secrete histamine in higher levels and I wonder if the medication (called betahistine) would skew lab results. I had just started taking a low dose a few weeks before my last lab work in May.

    Results for labs previously have been great.

    I've been on betahistine (called Serc in Canada, where it is approved for use by their drug administration) for 8 months. I’m on a higher dose now than last May per ENT recommendation. It's the only thing I've done differently since my last checkup in May. In spite of struggling with Menieres which causes anxiety I have been feeling great physically. No bloating weight gain swelling or lumps anywhere…

    ???

  • jons_girl
    jons_girl Member Posts: 444

    hi Claire: I went through a scare with a ovary/funky cysts a couple years ago. We were watching ca125 every few months had blood draw. I think my ca125 jumped around quite a bit at the time. My cysts rectified.Doctors had wanted to take ovary out but at the time I was still premenopausal and didn’t want to be thrown into menopause. So just chose to watch every 3 mo I think I had pelvic ultrasound and ca125. Then skipped to 6 mo. And now checking yearly just to make sure all ok. now am post menopausal. All seems ok.

  • spookiesmom
    spookiesmom Member Posts: 8,167

    Anything is possible. Is there a different med you can try? Maybe a different manu? Some say a manufacturer change makes a difference with the AIs. Different fillers.

  • claireinaz
    claireinaz Member Posts: 679

    Hi all,

    Thank you all for taking care of me...at least virtually. Sheesh, I haven't been this terrified in a long time. Actually having stress headaches because of it. I have to manage anxiety because anxiety can throw me into a Meniere's attack (4 hour vertigo, multiple bouts of nausea, roaring tinnitus, comes on in min and happens anywhere. You don't want THAT other shitty disease).

    Spookie, I could try a different compounding pharmacy, but I think right now I'm grasping at straws with this histamine thing. Menieres is a rare disease and I didn't even mention it to my oncologist because I didn't think it would make a diff to him, since Serc/betahistine is an off-label, not FDA approved drug in the US. I'm sorry I didn't, now, but I figured he didn't even know what it was.

    Hoping the radiology scheduler will call today and set me up for a CT scan asap. That is what my onc. wanted--he's rushing all this, because he's leaving for a month for Europe to visit family next week.

    I do know that in researching CA 125 docs don't usually use them for patients like me because results don't help anyone live longer, and it does cause tremendous anxiety to the patient. I asked him at the last min (after he said labs were fine!) about the CA results since this was only the third time I've had them done (my other oncs never did them). THEN he looked and noted they were 50+ from 30 something last time, I think. Kinda sorry I asked now.

    I have all my lady parts. But no indication of cyst, or etc. I passed the gyno exam this past March with flying colors. I'm trying to just look at this is curious, but not panic-appropriate yet. You all know how hard that is.

  • wallycat
    wallycat Member Posts: 1,241

    I am sorry you are here, but happy to see you are. Can you stop the meds for a month and re-test?

    My labs have been wonky for "other cancer" stuff but my onco does not believe in running ca125. I love her; she is not an alarmist, and for the reason you stated...scares that turn out to be nothing for the patient.

    I had lymphocyte differential elevated. I was convinced it was from the start of an infected tooth. My non-alarmist onco said possibly chronic lymphocytic leukemia. So we watched it since like so many things, you don't treat it till it warrants it. My absolute numbers were fine. 3-4 years later, all the lymphocyte stuff has been normal but my protein was elevated. She ran a whole bunch of tests for Multiple Myeloma. She wanted a bone marrow MRI. I was inconsolable. I was convinced I would have some blood cancer because of all the wonky results. Zip. We re-ran the labs and my protein was normal, but now I am on the hamster-wheel of checking the myeloma...I am MGUS (monoclonal gammopathy of unknown origin). This could sit and do nothing till I die from something else or turn into myeloma. ...had my urine rechecked early November, and all of that turned out normal. This is all to say that labs fluctuate and we have zero idea why our bodies do what they do. My doc said they look for trends not one value.

    My DH was given a year...in June it will be 3 years. His labs are not cooperating but his scans are stable...so labs don't tell all of the story.

    I hope you get some resolution but remember, we are all one lab result away from being on the "checking" path.

    Best to you.


  • claireinaz
    claireinaz Member Posts: 679

    Wallycat, yes, I can stop the meds or take a lot less of them each day. I have a CT scan Monday, then see the onc. Thursday. No matter what he says, I'm headed to Mayo or MD Anderson for a second opinion. The lack of attention to detail in our small regional hospital and services is famous. So I don't exactly trust the first report either.

    I also plan on taking the med in its bottle to my meeting with the onc. I am taking 48 mg. of histine per day. It's enough to keep me from having horrible Meniere's attacks but I also don't want it to drive up numbers and all that.

    Or I might have the worst. Just don't know yet.

    I do miss your voice and am glad to hear from you. <3

  • mikamika
    mikamika Member Posts: 242

    Hi Claire,

    I am so sorry about this stressful situation. My question is about the CT scan. Why CT and not ultrasound?

  • wallycat
    wallycat Member Posts: 1,241

    Claire, the tumor markers are just that...showing trends and if your Meniere's is helped by the histine and the drug IS causing the elevated number, then that is the answer. The markers are used to tease out what is happening. If you conclude that the med is causing the rise, the rise itself is not an issue...just telling you something else was going on.

    Please keep us updated. As you know, so many of us come here to learn from our sisters on paths/outcomes. We thank you for sharing and may this just be a blip ...like my new PCP (finally got one!) said..MGUS is a lab issue not a body issue...and if that remains, then these are just numbers not a diagnosis. Same for you...it is just a number until it is something else.



  • 2019whatayear
    2019whatayear Member Posts: 464

    I hope this turns out to be a no big deal situation. Was there any reason why they ran a CA 125 in the first place?

  • claireinaz
    claireinaz Member Posts: 679

    Mika, he just wanted a CT. I didn’t ask why he didn’t order US or MRI. I was in shock frankly 😢.

    Wallycat, it seems through research that histamine is expressed in several tumors. I am hoping that the amount of histamine I have in my blood skewed results.

    I do wish MO would have waited two weeks or a month to retest. I have lost a little trust in this guy. In addition my late husband was treated at this cancer center (different doctor) 25 years ago and they didn’t do a great job. I have medical PTSD from that experience and drove an hour to another center to have my own treatment and did the same for all checkups for years. My MO retired. After a year of trauma therapy I felt safe enough to walk into my late husbands treatment center just for checkups since it was closer. Since this MO seemed to forget that he ordered this value as part of the lab work and wouldn’t have shared if I hadn’t asked (stupid me) I wonder about about his competence. If there is some kind of progression I’m getting my records and heading to Phoenix. I don’t think I can find the emotional strength to trust this place. May have to do that regardless. He doesn’t do any exams like my previous one did either.

    Whatayear, I have no idea why this MO runs CA 125, when my long time MO never did. I miss her. I’m high risk because of +nodes, but everything I’ve read says that they aren’t recommended for checkup lab work. They don’t help us live longer and cause trauma. I’m one big ball of trauma presently.

    My CT is Monday.

  • wallycat
    wallycat Member Posts: 1,241

    Claire, again, I am so deeply sorry you are dealing with this. I have med-PTSD (self dx) from all of my crap and now, my husband's, and my new thing. Did it take long for the trauma therapy to help? If you don't mind sharing (privately or here) what it entails. I think I seriously need to work on this.

    I too hope that the medication is just enough histamine to cause the markers to reflect the med and nothing more.


  • claireinaz
    claireinaz Member Posts: 679

    Wallycat, I was in therapy for 7 months before I was able to walk into that damned cancer center where my husband had poor treatment. Then another 4 before I didn't freak out for a month before each check up. This time--no freakout, felt confident, then bam. Probably will not be able to see him again. If he wasn't even going to look at that value--on the lab test he ordered--until I last minute mentioned it--then what else might he not look at?

    And why didn't he simply say, come back in a month and we'll re-test? On hindsight this seems like overtreatment.

  • 2019whatayear
    2019whatayear Member Posts: 464

    Claire it makes no sense to me that a CA 125 would be run unless you had some symptoms related to ovarian cancer or *maybe* if you had a mutation like BRCA1- even then- no sense to run a marker for ovarian cancer for someone who had BC 10 years ago.

    This stress really sucks for you I’m sorru

  • mikamika
    mikamika Member Posts: 242

    2019whatayear,

    Could you please explain in more details this statement about BC 10 years ago and no sense for ovarian cancer screening?

  • mikamika
    mikamika Member Posts: 242

    Claire,

    There are so many benign conditions related to the lady parts that can cause tumor markers to be elevated. This is why I asked about ultrasound. I agree with Wallycat, markers are just numbers that show trends. Your liver enzymes made you worry last year, but now they are normal, right?

    Also, maybe it was just a lab error...

  • wallycat
    wallycat Member Posts: 1,241

    Claire, thank you for answering the trauma therapy question.

    Just as an aside, my sister had a pelvic mass; they ran a ca125 which was quite elevated, did ultrasound and sent her to an onco gyn, telling her they were 99% sure she had a nasty gyn cancer. Not sure where it originated because it filled up her whole pelvic cavity..(uterus, ovary, etc...could not tell). They planned to do a radical hysterectomy (cervix, ovaries, uterus)...and take the mass. They found zero cancer. Of course, she's without her lady parts (and minus a nasty mass) but no cancer. So you could have an ovarian cyst or a polyp or anything else that caused the markers to elevate.
    Like others here, if you have a mychart portal, maybe you can send a question asking why he thought to run this lab, specifically. CA125 can elevate for several b-9 reasons.

  • claireinaz
    claireinaz Member Posts: 679

    Answering in order from whatayear to Wallycat:

    Whatayear, I have no idea why he orders an OC test. My close friend who survived ovarian cancer stage 4 twice and is doing great since 2008! said the same. But he did and can't change it. I do know that ovarian and breast cancer share some of the same markers, like cousins. and ILC likes soft tissue, so if it's going anywhere it's more like to travel to those places, like abdomen, etc. that may also answer the question about why he is doing it.

    Mika, my liver enzymes have been a worry, yes, ever since the first slight elevation was noted by my former MO who said “it might be cancer related". There the stage for lasting PTSD triggers was set pretty much for life. They have been great for a year.

    Wallycat, I am sure I have a portal but never needed it… till now. The first time I found out he runs tumor marker tests I was shocked actually, since my former MO said they were unreliable and she was part of the same Az Oncology Network as my current MO. It was my first time seeing him for a checkup. Since he said they were okay I didn't think about it.

    Thank you all for your responses. It helps me not feel so scared.

  • spookiesmom
    spookiesmom Member Posts: 8,167

    When I had the 30 point jump in March, MO said they weren’t always reliable, but ordered a PET just in case. Nothing lit up, and the next lab after DH died, was back to my normal.

  • claireinaz
    claireinaz Member Posts: 679

    Spookiesmom, thank you. Your words helped me breathe a bit. I am so sorry about your DH. I know how the world changes forever when we lose a spouse. It still stops me in my tracks at times even after all these years. To know my husband died of cancer that was being treated at the same Center I'm going for my checkups made it difficult for me to walk into the same place, but I thought because it was a diff doc, and my year of therapy, would help. It did, till now.

    I have been doing extensive research into betahistine. It is a histamine, which apparently causes inflammation (it works in my case to increase circulation in my inner ear and provokes the backed up fluid that causes Meniere's to release better). It has a half life of about 4 to 8 hours, and I take it 3 times daily, 16 mg at a time and at times, when I feel anxious (which causes attacks), then 4x a day. I had taken it the morning I was tested. I can't remember if I had taken it before my last lab, but I wasn't taking near as much. The drug also would release histamine in my blood, which might mimic tumor activity. I'm probably grasping here, but regardless of what happens this week I will certainly tell my doctor this Thursday when I see him.

    I am not sure insurance will cover the CT. If it doesn't, they wanted me to sign a waiver saying I'd pay for it. Since it's full torso plus pelvis, with contrast, I could be out several thousand dollars. If insurance hasn't approved it by tomorrow afternoon when I'm scheduled, I will wait, get labs again in 3 weeks and stop the betahistine for several days (as long as I can) before that. If the CT scan is approved then move forward, etc. get second opinions, etc.

    Claire

  • wallycat
    wallycat Member Posts: 1,241

    Claire, my onco fought to get my MRI and insurance turned it around in 24 hours. I hope you can get the scan to get peace of mind. If they don't approve it, you could suggest an ultrasound to at least see what is going on in the pelvic cavity. It sounds like you have a solid game plan. The hardest part will be the waiting...time...and waiting. Best to you.


  • alicebastable
    alicebastable Member Posts: 1,938

    I get regular scans because of a different cancer I had at the same time as the breast one, and my insurance always covers it except for a standard co-pay under my plan. The last time my urologist switched to abdomen only, and my breast MO tacked on chest because I have some lung crud she likes checked. No problem with insurance on that CT expansion.

  • claireinaz
    claireinaz Member Posts: 679

    I've had different experiences with insurance. Normally it's great coverage. However, three years ago (2017) I felt something in the skin in my lumpectomy scar, and freaked out and went to my PS. He ordered an MRI to see what was going on. He does it every three years (that is what insurance approves) to check implants but also to check for anything else too. This time insurance denied the MRI even though I thought it would be pretty important because I thought I felt something. Didn't matter: it hadn't been three years. They approved an US though, which I had and was clear. So no MRI anyway. Two years later I had my last breast MRI in 2020 and it was clear. So I don't know.

    I am so emotional about this I can't think straight, which I guess is why I'm here. My husband and I talked rationally yesterday and I was okay, if insurance hadn't approved it by tomorrow, to wait three weeks and get another lab then move to the next step. Today I am back to feeling panicked. I don't make good decisions when I'm panicking.

    Claire

  • wallycat
    wallycat Member Posts: 1,241

    We are holding you dearly, virtually. Allow your husband to hold you and allow him to make some decisions. No amount of worry changes what is or is not happening; it can only cause havoc inside of us. Sending you peaceful thoughts.


  • spookiesmom
    spookiesmom Member Posts: 8,167

    That sounds like Medicare and a DEXA scan. Every 2 years, to the day, or after. Not the day, week, month, to the day, or after. Unless dr suspects something, or you want to pay for it.

    DH had cancer too. He saw a different dr in the same practice as me. He didn’t like dr A. I said change! Stubborn mule wouldn’t. He finally refused all treatment after jumping all over one of the chemo nurses. Who still talks about that episode. I had to tell him to settle down, I go there too, and I didn’t appreciate it.

    Insurance worker bees, who don’t have a clue, should walk a mile in our flip flops. See if your dr will argue with them.

  • claireinaz
    claireinaz Member Posts: 679

    I’m not so worried insurance will deny. But I want approval in hand before I get the scan. It’s scheduled for tomorrow and all this started just midday last Wednesday. I don’t know when the radiology department got the order; they called me Friday morning. I am not really expecting approval in 48 hours or so.

  • 2019whatayear
    2019whatayear Member Posts: 464

    Mika without any symptoms or any family history of Ovarian Cancer it just doesn’t make sense to run the tumor marker test for ovarian cancer - would make more sense to run one of the tumor markers for breast cancer and even that isn’t an across the board recommendation.

    Claire This is all so triggering, i completely understand the feeling so stressed you can’t think straight.