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scanxiety, cant stop thinking im going to die

minarchist
minarchist Member Posts: 33
edited February 2022 in Stage I Breast Cancer

hi, i have no one to talk to and im freaking out and i need just anyone to please help me think everything is going to be OK

i have been in treatment for stage one since the end of 2019, lumpectomy, sentinal node removal, radiation, tamoxifen--you know the drill

my mammos have been clean, i dont feel bad, i take my tamoxifen religiously, Dr.s have been happy with my progress every time

last time i had blood drawn my CA 27.29 was elevated to 43 and i have to wait til the 30th for a full chest abdomen and pelvis CT scan. i cant stop worrying that i have ovarian cancer and im going to die. like this is it. i dotn know what anyoen alive could say to me to help me. i take care of my 102 yr old deaf blind grandmother, if i have to put her in respite care for soem kind of surgery it will cost me 10k a month, just to die anyway.

anyway, i have literally no way of comprehending what the chances are theyre going to find something worse, i cant stop thinking that elevated number DEFINITELY means "this is it", even though my dr didnt seem too alarmed by it and said she just wanted to check, just the fact that she ordered such a big scan makes me think she DOES think its something

i feel like im going to burst into tears and scream "OMG IM GOING TO DIE" every second

if anyone can help me i would really appreciate it, because i dont think i can take this


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Comments

  • mountainmia
    mountainmia Member Posts: 857
    edited December 2021

    Hi. I'm really sorry you're going through this, and especially since you also have responsibility for your grandmother. One thing I know is many doctors (maybe most?) don't check tumor markers especially for early stage patients, because they are KNOWN to be unreliable. My health team is at an NCI-designated cancer center and they do NOT use tumor markers for early stage. Because they are not reliable. Your doc has ordered more tests BECAUSE the tumor markers are NOT reliable.

    Right now you have a lot on your plate. Your anxiety sounds overwhelming. Please consider talking to your doctor about some help for the anxiety. Regardless of the outcome of your tests, that might help you a lot.

  • minarchist
    minarchist Member Posts: 33
    edited December 2021

    thank you for your reply, im wondering if its a good thing to have a DR who checks the markers? maybe i shouldnt? half of my brain is like "its GOOD! its PROACTIVE! theyll find every molecule of cancer before it catches hold and keep me alive!" and the other half thinks "justifying why she has a hemotology lab"

  • mountainmia
    mountainmia Member Posts: 857
    edited December 2021

    I don't know what the motivation is. I'm just trying to calm your sense of imminent doom. :)

  • minarchist
    minarchist Member Posts: 33
    edited December 2021

    lol thank you xD

  • salamandra
    salamandra Member Posts: 725
    edited December 2021

    If you die anyway who cares about the $10k?

    That was meant to be dark funny.

    Seriously scanxiety is real and shit is scary and this year is a tough one for so many people for so many reasons.

    There's not much you can do with the theoretical cancer right now but is there anything you can do for your mental and emotional health? Do you already have a therapist and psychiatrist? If not, can you set them up? Preferably people who are experienced with cancer patients?

    Some meds and even just the feeling of being proactive about *something* can really help take the edge off. In a worst-case scenario you'll be glad you already have the extra supports set up and even if the tests come back clear (very probable), we still have years ahead of us of scanning and waiting and scanning and waiting. Figuring out how to be happy in the meantime... that's a worthy project.

    (I say this as I'm in a very blue funk right this second and definitely not doing everything I could to take care of myself on a deeper more long term level. But hey we are all works in progress).

  • beesie.is.out-of-office
    beesie.is.out-of-office Member Posts: 1,435
    edited December 2021

    This website is filled with people who have had elevated CA 27.29 results and who turned out to be just fine.

    Is it a good thing to have a doctor that checks the markers? No, because as MountainMia said, the markers are unreliable. Checking these markers is specifically not recommended by ASCO and the NCCN. I've had breast cancer twice. I've seen 4 MOs over the years. None has ever mentioned doing marker tests.

    Your MO has her own Hematology lab? Yeah, it's not a very charitable thought, but that could be why she is doing these unnecessary tests and scaring you with unreliable results.


    image


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  • minarchist
    minarchist Member Posts: 33
    edited December 2021

    --I say this as I'm in a very blue funk right this second and definitely not doing everything I could to take care of myself on a deeper more long term level. But hey we are all works in progress

    ugh, its so hard, im sorry youre going through that. no i dotn have therapists and psychiatrists, iwas FINE, i was barely even phased by my actual cancer diagnosis to the point my breast surgeon remarked on it. but this scan fear has finally broken me. ive never taken ANY medication of any kind in my life til tamoxifen, i dont know how i feel about takin gmeds for anxiety, but i will think about it. i guess its just part of our "cancer journey" bleh


    mostly just jawboning my anxiety with peopel who get it helps knock it back, i probably need a support group

  • laughinggull
    laughinggull Member Posts: 509
    edited December 2021

    Hi dear,

    Sorry you are going through this. You have a lot in your plate with your grandma situation.

    As others said, those cancer markers are notoriously unreliable, I am also followed at a major cancer center and they don’t check them. It’s not proactive, because there is no reliable action doctors can take, after observing small up and down fluctuations of those numbers, that is going to protect you from the cancer returning and/or killing you.

    So your cancer was early stage and your prognosis is good, although there are of course no guarantees. Even if you were to be diagnosed next week with a recurrence or met (which doesn’t sound like the most likely outcome), your life wouldn’t just end that day. At all. You know that. You would go to your doctor and come up with a plan, and follow that plan one step at a time.

    So it sounds like your mind is playing tricks on you, and anxiety and worry are taking over and destroying your peace of mind. I totally understand it, because I have been there (not taking care of grandma, but I have young kids); I would take action to rein your worst minds in. Things I would consider: anxiety medication in the short term, a visit to a psychiatrist or therapist for advice on controlling anxiety long term: support group, meditation group, calming hobbies…whatever works for you long term.

    You are likely to live a long life, with cancer suspicions and scares interspersed in it, on top of many other sources of stress and worry, and you need to be in charge, and prevent anxiety and worry from destroying your well being. You can do this!

    Much love to you sister

    LaughingGull

    Heart

  • minarchist
    minarchist Member Posts: 33
    edited December 2021

    thank you thats very helpful Beesie. on one hand she seems to be trying NOT to scare me by being pretty breezy about it, but its existence is just so frightening i guess theres no way to order a full CT scan like that without it being scary lol

  • minarchist
    minarchist Member Posts: 33
    edited December 2021

    thank you LaughingGull this was very helpful. mostly ive become obsessed with the idea that it signals ovarian cancer, not recurrence or mets. i feel psychologically prepared for recurrence, but ovarian cancer just looks like a death sentence. my gramma and mom both had early hysterectomies and i dont have BRCA despite being ashkenazi (so thats a good thing), so i really dont know any family history

    i think if she was just checking my breasts again id be a LOT less scared, the idea of "different form of much worse cancer" possibly being found is just wrecking me lol

  • beesie.is.out-of-office
    beesie.is.out-of-office Member Posts: 1,435
    edited December 2021

    Your doctor is being breezy and trying not to scare you because she knows that the markers are unreliable and likely don't mean anything.

    But having that result, it inevitably leads to more testing. This is what in the medical industry is called VOMIT - Victim of Medical Imaging Technology. Seriously, it was an ultrasound tech who told me this, as I was having an ultrasound after an x-ray had spotted something completely incidental to the purpose of the x-ray. That ultrasound led to a CT scan, which led to a long list of incidental findings and another follow-up CT scan, with one more scheduled soon. All of this because of that one incidental finding on an x-ray, and in the end it appears that nothing that has shown up is serious and most if not all I probably would never have known about (or needed to know about) without the imaging.

  • minarchist
    minarchist Member Posts: 33
    edited December 2021

    ugh that sounds rotten, yeh thats part of what im scared of lol

  • pamep
    pamep Member Posts: 66
    edited December 2021

    I asked my surgeon about blood marker tests last week when I saw her for my followup. She also said that while they may be good tests for other cancers they are not yet reliable for breast cancer. Minarchist, I have gone through the same treatments as you. I am coming to the realization that it is better to continue with life as close to usual as possible and to undergo testing if and when symptoms appear, just like the standards Bessie circled. My MO, RO and surgeon follow this practice. It is easy for us to fall into worrying. Got to laugh, and cry, at VOMIT.

    Take care.

  • beesie.is.out-of-office
    beesie.is.out-of-office Member Posts: 1,435
    edited December 2021

    minarchist, yeah, it hasn't been fun. And while all that follow-up imaging with incidental findings was going on, I was on a parallel path with other imaging; here again, I had necessary imaging that produced incidental findings that required more follow-up imaging.

    The difference in my case versus yours is that with both my situations the first imaging that led me down the VOMIT path was necessary. I have a history of breast cancer and I presented with clinical symptoms that could represent a metastatic recurrence; in one case it was persistently swollen neck lymph nodes and in the other case it was new and then worsening hip pain. As breast cancer patients, it is important that persistent symptoms be checked out - most often they are not mets, but that possibility exists and these types of symptoms need to be investigated. So while it's been no fun at all going through test after test and finding all these things that probably never needed to be found (at one point I had 8 findings that all had to be investigated further; I'm now down to 3 with monitoring on 2 others), at least I know that the initial tests that set off this process were necessary.

    This is precisely why unnecessary imaging and lab tests are not recommended for breast cancer patients. The likelihood that these tests find something that never needed to be found (as we age, we all develop harmless weird stuff) is probably 100 times greater than the likelihood that these tests will discover mets that had not yet presented with symptoms.

    Hopefully your imaging is clear and does not uncover anything serious or any incidental findings so that you can be done with this process quickly.


  • minarchist
    minarchist Member Posts: 33
    edited December 2021

    thank you beesie, your experience is very valuable. part of me feels like not going to the CT scan, and the other part is petrified of making a deadly error out of fear. im wondering if i should get a second opinion or request a follow up blood test before doing imaging, is that something people do?

  • minarchist
    minarchist Member Posts: 33
    edited December 2021

    PamEP thank you so much for sharing your experience, it does seem like your diagnosis and treatment are just like mine. can you just NOT get the ct scan when they want to order one? my fear is to make a deadly decision, something that my mother did and my father came close to doing

  • alicebastable
    alicebastable Member Posts: 1,934
    edited December 2021

    I had breast cancer and kidney cancer at the same time (plus endometrial a decade before). I've had CT scans two or three times a year for three years, and twice they led to PT scans. Still, my MO has never run tumor markers on me (and she has her own lab, to address Beesie's comment). I don't understand why any MO would run them on stage 1 patients unless there is a really, really good reason to do so.

  • minarchist
    minarchist Member Posts: 33
    edited December 2021

    thank you for sharing this with me AliceBastable. i am coming to see this is not common and wondering what i should do. i dont think she has a "good reason", i think its just her course of treatment

  • parakeetsrule
    parakeetsrule Member Posts: 605
    edited December 2021

    Why not just get the CT scan? They're not a big deal and then you'll have some peace of mind. And if your anxiety is making you miserable, treat it as you would any other medical problem: with proven, helpful treatments including medication. It's completely normal! And you can stop using it when you don't need it anymore. Stress and anxiety aren't healthy and make you unnecessarily miserable.

  • pamep
    pamep Member Posts: 66
    edited December 2021

    minarchist: You are your own best health advocate. You are in an understandable decision quandry that you are going to have to sort out. I was in one myself recently about a medical appointment I had made that later made me uncomfortable. So I canceled the appointment. The point is that we as breast cancer survivors, or patients, are in charge of our treatment. I try to find doctors I trust and I listen to them. Still, I have disagreed with them more than once. They, in turn, have listened to me. Have you voiced your concerns about these scans to your doctor? Second opinions are always an option.

    Wishing you well.

  • minarchist
    minarchist Member Posts: 33
    edited December 2021

    i just had a long talk with my father, who is a Dr, and he thinks i should do the scan and bolstered the belief it will be nothing, i guess i feel like i really have no choice but to do it, maybe in the new year i will look for a new oncologist thanks for all your support

  • minarchist
    minarchist Member Posts: 33
    edited December 2021

    yes i am going to, i am just trying to chatter my anxiety away i guess. thanks for your comment, i think youre right

  • minarchist
    minarchist Member Posts: 33
    edited January 2022

    CAT on 12/30, still no call with results. im just going to die of worry instead

  • mountainmia
    mountainmia Member Posts: 857
    edited January 2022

    minarchist, I get ya. But I'll also say this: I went in this morning for basic blood tests prior to my PCP annual exam Thursday. It was 7:45 and the phlebotomist was already stressed. She said, good thing I was in so early, before it gets busy. They are short-staffed by 5 people today. There are only 6 blood-draw stations in the lab, so being down 5 people is the majority.

    You have New Year's holiday, you have normal winter illness, and you have covid-related staff shortages. Unfortunately, though you are your own highest priority, you might not be the highest priority of your health care center, from a medical perspective.

    Please find something else to do while you wait. Good luck.

  • minarchist
    minarchist Member Posts: 33
    edited January 2022

    yeh shes probably not back from vacation yet :-\

  • minarchist
    minarchist Member Posts: 33
    edited January 2022

    and i just found out my Drs office never got the results yet

  • minarchist
    minarchist Member Posts: 33
    edited January 2022

    for anyone who finds this post looking for tumor marker, tumor markers, TM, CA 2729 CA 27.29 CA2729 CA27.29 my elevated number HAS turned out to be an ovarian cyst, the CAT scan showed a complex cyst on my left ovary (not solid) and they want to double check me with an MRI but the DR. thinks its very unlikely to uncover malignancy


    thank you for the women of this board who tried to calm my hysterical vaporing

  • beesie.is.out-of-office
    beesie.is.out-of-office Member Posts: 1,435
    edited January 2022

    That great news that it appears to just be a cyst!

  • alicebastable
    alicebastable Member Posts: 1,934
    edited January 2022

    Cysts are very common! Now do something fun.

  • minarchist
    minarchist Member Posts: 33
    edited January 2022

    thanks so much beesie!