Elevated CA 125: terrified
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Whatayear, I am right now back in that place in 1995, Oct 13, sitting in an exam room (in one of the very same exam rooms that I will walk into this Thursday and perhaps get the worst bad news) and seeing my late husband's onc. walk in with this "look": you knew he didn't want to say what he had to say--and not meeting our eyes. Gave us the bad news that he was full of oral cancer--all the chemo and rads he had that summer didn't work--, and had maybe a year to live (he lasted 3 more months and died Jan 14 96).
When we got the news that he was terminal, we had been married 6 weeks.
That is why it took me so long to consider getting checkups at the same center. Tremendous triggers. For years I couldn't even look at the building. I've only been getting checkups there for a year.
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sending you hugs
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The insurance approval didn't come in time for me to do the CT scan today. I'm not surprised-even people that are dire have to wait a few days, and this would have amounted to 24 hour turn around time.
I am writing every single question I have for the MO down, and going in there armed on Thursday. I also just finished a PTSD therapy session, and it's clear I will need to find a true specialist backed up by the experts, so I'll be reaching out to MD Anderson and seeing if I can see someone down there. I'm worth it. And because I'm higher risk, I deserve it.
I'll let you all know what he says on Thursday. Right now I'm using my healthy resources to keep my triggers at bay, and to keep the trauma fear in the high-neutral range. For me that is yoga, yoga, yoga, hiking/walking, working, and watching funny crap on streaming channels.
XXOO
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Claire we are sending hugs and we are here for support!
I’m surprised they aren’t having you do ultrasound. They are cheap and I have them for follow up check ups. Just watching my ovaries to make sure all stays ok.
Keep us posted.
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Thank you Jonsgirl. I have had those from time to time when I get my gyno checkups. It may be that BCBS will want an ultrasound first anyway. That's why I was hesitant to get the CT without approval.
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Thanks for the update Claire! Im glad you have your toolbox for this incredibly stressful week
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Claire:
ok, Ijust wondered. That makes sense. Keep us posted how it all goes. Sending a hug to you. Hope all goes well.
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Update: I saw the MO today. He agreed I should re-test in 3 weeks (and not take betahistine for a few days before) and was interested in the fact I was taking that histamine, and though since he didn't know anything about the med, said he'd do some research on it. I told him what I knew--what it does, and the half-life (4 to 8 hours), etc. He didn't rule out it might have skewed, but it's such an unknown med, who knows what research there is on it and CA 2729 test? I tried like heck to find anything, and didn't.
It was a CA 27-29 instead of a 125, which for some reason makes me feel better, weirdly.
It was not a lab mistake, but I wasn't surprised. We only did the re-test less than 48 hours before the first one. Value was the same, not surprising either. If it is betahistine-elevated, I had taken my normal doses when we retested.
I told him I had a brain MRI earlier this year (clear) done for Meniere's dx, I had a clean colonoscopy in January, I had a clear pap in March, etc. etc, a clean breast MRI last year. At least he knows I'm serious about self-monitoring.
I see him again, and get results, Jan 6 (12th Night). I'll either need a CT scan then, or not. If anything else appears, I am already in the queue for a Mayo second opinion about these lab tests. I hope they call me soon to set up an appt.
Claire in AZ
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Thanks for the updates...I was convinced it was not the ca125 and glad to see you confirm it. All I read is that the ca27-29 is typically in the 100s if there is concern, so I am hopeful this was histamine related, or even better, just a fluke. 12 nights before you get the CT? or the lab ? or ?? In any event, I am happy to read you are in queue for Mayo should you feel you need it. Certainly worth finding a new place to go if the initial one causes the trauma again. I feel your angst on the stress and I wish there were an easier way to help all of us through these times. It is reassuring you have had all those other scans and they've come back clear. Best to you....take a deep breath and do not start counting the nights down!
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Hi Wallycat, it's reassuring to hear from BC.org sisters...we've both been on these boards for years, and reassuring to see everyone again. I am going to call the radiology folks to make sure approval for the CT has been given and schedule a tentative appt. That way if I need them after the next re-test, I can just go. I expect if that shows something concerning, the next step would be a PET. I've had the PET before during previous dx, and it was done here in my city, so I wouldn't freak over that, I don't think. I've had CTs for other things here too, so I could feel comfortable getting those tests here. If indeed it was something troubling then down to Mayo or MD Anderson I'd head. I wish that all oncologists would either use this test in check ups or not. If it isn't reliable, then why do it? It simply has caused me to lose trust in testing when it's important like this.
I broke down completely in the exam room. It was, I think, the same room that we got the news about my husband's terminal cancer so long ago. They left the door open while the tech was asking me questions, and I saw those windows in the hall that are burned into my memory, like a flashbulb memory, and absolutely went into the past-saw late hubby's doc come round the door to the right, and saw the look on his face, and felt the shock of the news all over again. Saw the look on late hubby's face. All over, just like it was happening. My DH had to talk to the MO yesterday in the beginning so I could compose myself. PTSD is real and awful, but weirdly all through that trigger episode I kept telling myself how brave I was that I found courage to walk into that place. My therapist is really proud of me.
My husband did say he saw the MO's "wheels turn" when I gave him my rx bottle of betahistine, and told him what it was. He also had written down that it was an antihistamine (!!!!) and I had to correct him. It's a histamine, I said--and he said that some tumors can express it, but he mentioned MAST cells. But he also said that if it contributes to some inflammation that might influence. I don't know.
I see MO Jan 6, will re-test a few days before.
Perhaps if this 27-29 test is going to be used, they'd increase the high normal limits, and then instead of going on the goose chase for any + variable, watch it every two weeks or so for upward trends, and then go looking further when it's above 100. I don't make the rules, though.
I have to keep myself from going to the Stage IV boards and the Just DX with a Recurrence boards.
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Oh Claire, my heart hurts reading about your PTSD. I too will never forget how we were told about DH's condition...thank god for the radiologist who discounted what the orthopedic guy said.
It would be great if there were better treatments than histamines.
I am in awe of your going for therapy and having success with it. I desperately need to set something up but with covid, so few places are taking patients. I promised myself I would look into zoom/tele therapy and have not done that yet. I appreciate your sharing your experience and that it helps.
I'll keep you in my thoughts and I'll keep looking for your posts. I'm hopeful that the histamine is the cause; don't forget to stop taking it as far away from your lab date as you can.
(((((((((Claire)))))))))))
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Claire - I'm following you too & hope it is the histamine. What a horrible option tho, to quit taking something even temporarily that has done you so much good. I agree - keep up with your yoga & hiking and try to stay off the stage 4/recurrence boards. We're here to listen.
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Claire, amazing guts it took... and GOOD to feel the emotions of the past in the present and stay in the present!
Give yourself a chance to shake if trembling comes up. See Dr Peter Levine... the boys way of processing and releasing traumatic energy.
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Hi hermanas,
Again, thank you. Santabararian, my massage therapist suggests the same thing. Like dogs, who shake off energy after fights. She has also done a lot of trauma therapy and gets it. I've tried it! Sometimes I will go for a run--it helps too.
My therapist saw me for a month beginning June 2020 then we went to Zoom for about 5 months. It was okay; worked alright but you need a quiet private space for sure. Now we are back to meeting normally and it is a joy.
Something about getting lab results like send me into freeze-blackout zone. Last year, when my liver enzymes were up above normal (not much, but still) my MO told me the results and I blacked out for a second or two. Seriously weirdest feeling ever. I did it once a long time ago when I was on a camping trip and the door to a friend's car was open, and her key bell was dinging. I was zoomed right back to the alarm that we used to hear from my late husband when he had to have his chemo bag changed by me-he was getting home chemo. Seriously.
However, I also made a tentative appt for a CT 4 days after I see the MO for lab results again. BCBS has approved it (only if I need it). I know the reality of sneaky ILC and that it tends to recur later. I also know my other lab values were perfect, and I've been taking aromasin for nearly 10 years come April, never a bit of extra weight on me but healthy, lots of exercise, meditation, plant-based with a little dairy, calcium, Vit. D levels checked yearly--always good, etc etc blah blah blah.
I think my MO would understand that if there was a problem, I'd want a referral to Mayo or MD Anderson. I hope. He saw my PTSD in action yesterday, and I wouldn't/couldn't/don't need to get treated here.
I also see my PS for a check up right after Xmas; he's a trustworthy friend by now, and I'm going to talk to him, too.
Big love all
Claire
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we are here for support Claire….keep us posted. Sending a hug to you! Yes I definitely agree your MO would totally understand about you not wanting treatment there ,if needed to be done, that you’d have treatment somewhere else. I totally understand that!
hope you have a wonderful weekend.
We all love ya too!
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hoping your CA 27-29 is lower when you get it tested this week!
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Whatayear,
Thank you...I'm trying not to get my hopes up--self-protection, and instead I'm trying to remain in a more curious place than a panic place right now--sometimes it works and others not ;(. Right now I'm in a WTF, rather cynical, resigned place as well.
I know that even if it doesn't drop, it's not an official dx. I've had time to reflect, and I think I'm more angry/disillusioned at my current MO. His lackadaisical approach to my care--making me wait 2 hours before I was able to see him initially when then all started in December, then not reviewing my labs ahead of time, and nearly missing the CA 27-29 value until I asked him--makes me realize that I don't think he's right for me; it didn't do much to build trust.
I hate to keep jumping oncology ships, but I don't trust him fully, nor my local health care/medical center either. I feel rather unprotected. I did find out my old oncologist--the one I began with so long ago--is coming out of retirement to lead a new cancer center in town, but it means I'd have to go back to the old building where I have so much PTSD. The best news came when after some persistence, I was able to connect with Mayo in Phoenix, who said if I do have a confirmed recurrence they will take me as a patient. So that made me happy. Such is our weird cancer world.
My plan is to get the news Thursday at the 130 appt. If MO makes me wait more than 1/2 hour, I'm leaving and he can call me or telemed. I refuse to be treated like a second class citizen when I'm struggling with trauma triggers at every check up. My PS told me last week my current MO is way too busy and that he's not seen as particularly great by the hospital here, but I don't know what to do with that--since our hospital facility here is broken and has been for a long time. If need be, my CT is scheduled for Monday--just before I head to my local university to start teaching for spring semester. Talk about the challenges of compartmentalization.
Claire in AZ
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Claire, I've been thinking about you and happy to read your post.
I've jumped the oncologist ship at least once. Like yours, my first onco blew me off because he "knew" what my results would be, he neglected ordering labs I requested and it would take weeks to get a response. I finally contacted the hospital and asked why he wasn't in...golf. OY.
Is there a good onco in the clinic that you get PTSD at? If yes, maybe a good onco and some good care would help with the wounds.
Here is hoping this was just some odd fluke and that stopping the Histamine drug will put everything right.
What do you teach?
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Hi Wallycat, my field of study is English/Rhetoric, but the unit I teach for allows for a lot of creativity, so I teach a lot of place-based outdoor education. I see a private therapist, so no clinic. I'm terrified that if I stay here to get tx, my husband won't be able to be with me because of Covid. Our city grows--75,000 pop--but our healthcare is substandard. Mayo, MD Anderson, and other Phx area hospitals allow for one visitor-support person, vaccinated. The hospital up here hasn't allowed that since July 2021, which I believe causes undue harm to the patient.
I should not have read the thread about elevated tumor markers this morning. It looks like more than not, from previous posts, that elevated markers mean Stage IV, even if all other labs are fine, and even though we feel fine. With 6/11 + nodes, and ILC, which recurs later than earlier, I'm terrified again today. I am so sad that everything I have done religiously for so many years so I don't die of this disease might have been wasted. I've done nearly 10 years of anti-hormonals, kept weight way down, yoga, regular extensive exercise, regular checkups, organic, nearly all vegetarian, therapy for my mental state, anti-anxiety meds because I have PTSD and anxiety disorder, etc. etc.
I'm just in tears right now.
Claire
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None of those things were a waste, Claire. They were all important parts of keeping yourself healthy and happy. I'm sorry if someone misled you into thinking they would prevent cancer from returning because that's never a guarantee. I hope you are not Stage IV ❤️.
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No one "misled" me into thinking they would keep me from a recurrence. If anything, because of my educational background and work, I’m a skeptic 🤨 I have been studying tx for IL for a decade now; I opted for more treatment even though studies showed it perhaps wasn't necessary (case in point: BMX after radiation, even though I began all this with a lumpectomy-biopsy, and my oncologist told me I didn't need to do BMX and rads both), all I know is that all these things could reduce recurrence in the future. I feel disheartened because I was so hopeful. I know how ILC behaves; I know it hides; I know it is more likely to be bi-lateral, etc. etc.
I was as hopeful as I had ever been about feeling like I was doing great, in December. I mean really, really positive. Then wham.
Of course it doesn't help that all this is coming in January. My late husband died Jan 14 of cancer, after we were married 3 months, 3 days before his 50th b.d. January is a hard month every year.
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Claire, you must remember that you were taking a drug that may have elevated your markers and you are still NED; Try to go to that reference when ugly stuff comes to mind.
I hear you on the patient support. DH and I can share one onco appointment when I see her but otherwise, he has to go alone. He's at PT now and goes alone. I am grateful that given his age and condition, he can drive, walk and think on his own without me.
I posted an interesting statistic on the "what are you having for dinner" thread...I was reading it in Prevention magazine...that a BMI 23 and under actually increases mortality. I was shocked. All my training said under 25 is the goal. Who knew. Then I thought back and like you, I was vegetarian, had a BMI of 19, etc....and wham. I sometimes have to take a pause when I do things "because" they were mentioned as healthy....do I enjoy doing them? Is it worth it? If I enjoy it, great. If not, I am happy to skip a few things. Gotta tell you that my MGUS really threw me last year. I'm really hopeful your meds were the cause and you can go on with your great life. I had hopes of finding a therapist for the PTSD (which I also have) but now omicron...
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well for what it’s worth people who had an elevation that resolves and wasn’t cancer don’t typically come here so it’s not a good sample size . And 57 is not “that” high —of course all things considered it makes perfect sense that you are having an extremely stressful time. I would have much difficulty functioning.
I’m going to continue to cross all my fingers and toes that this scare turns out to be nothing xoxo
Big hugs
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Hi all,
Okay, update. I didn't want to post until I knew for sure, but I've been reprieved. I had my latest labs read by my MO Jan 6, and tumor marker dropped 10 points. He was quite relieved; I almost fainted with relief, haha. We determined it was most likely the betahistine that I take for Menieres. But since CA 27-29 marker was still a bit above normal, and I had already made an appt for a CT just in case, he told me to go ahead and get it done.
I was terrified, but I did it this past Monday. We went over the results Wed, and I'm fine. My entire torso/pelvis was scanned, and there was nothing--except for a tiny bit 4 mm scarring in my right upper quadrant, lung--due to 6 weeks of radiation tx on the right side. We compared it to my PET scan in 2011 and it makes perfect sense. He wants a repeat scan of that area only in 4 months-I'll have my regular check up too, then, but he said, and I quote, "no cancer".
Wallycat, that's interesting about BMI. The standards just keep changing, right? My problem about gaining weight is that I really can't because I can't eat enough. The protocol to control and lessen Meniere's attacks is that we must eat no more than 1500 mg sodium daily, and I feel better and have less attacks if I keep it below 1000 mg. per day. That leaves me with fruits and veg, and anything I can make with little to no salt, meaning I'm eating pretty dang healthy because so much food has so much sodium (cheese, bread, most anything has way too much salt in it: even almond milk has about 80 mg sodium for 1 cup). It would be hard for me to gain weight without harming myself and putting myself at more risk for Meniere's attacks. The attacks have the added benefit of potentially affecting my hearing in the affected ear permanently.
Thanks to everyone who reassured me. I stayed off the boards till I had something to say--sometimes I'm not sure what people will say that they think will be helpful but can have the opposite effect, which triggers me when I'm terrified. You guys know what I mean
Claire
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I am so glad that you got this good news. I know this month is very hard for you.
xoxo
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wallycat: how was your MGUS found? What were your symptoms and how are you doing now?
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Claire...SUPER-DUPER news!!!!! So happy to hear you got a reprieve and can enjoy the new year. I take the BMI info with a grain of salt...if I am heavier, I console myself with this; if I am "normal" then I say, "who knows!" In reality, it's all a crapshoot, isn't it, LOL. Congrats again on getting the scan done and holding it all together. Some days are just SO hard. I'm dealing with a sick, old cat and some days ...well...you get the idea.
Elderberry, my MGUS was discovered incidentally on a routine preventive care screening. The standard CBC, metabolic panel...my serum protein was ever so mildly elevated 2 years ago, and last year, it went up a tiny amount. Like, point 2 (.2), but since my onco ordered the preventive stuff, she sees it all through a cancer lens and ordered a butt-load of other labs and there it was. So right now, just like those of us who've had breast cancer and we worry and wonder if it will "turn into" something, MGUS is the same. 1% chance it could turn into a blood cancer, per year....and I hope science catches up, just in case.
I have had zero symptoms. "They" say that if all humans over the age of 50 were screened, 1% of the population would have it...but obviously not all of them have myeloma. Not much has changed with a repeat of the serum labs; my 24 hour pee collection was perfectly normal compared to the 1st one, so I don't have to do that again. They'll recheck my labs again in May and if it is all stable, I may be on a routine 1 year (like most people have routine annual labs) checking. Hate the worry but knowledge is power, right?
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Claire I’m so happy to hear the good news!!! Thank you for updating the group! Sending a hug to you!
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