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Argh, close to panic again

Getting some super strong scanxiety. Insurance denied PET (I guess because the first one didn't reveal any bone involvement, according to the denial) so they won't allow a PET. My MO wants a CT and a bone scan. The bone scan looks for c in bones, and the CT-well, you know what it does. I went from 1 scan scheduled for March 19th to 2, spread over 2 months because of scheduling. I am terrified something will show.

How shall I feel hopeful? I've been getting regular fulvestrant injections and verzenio (300 mg) for 3 months now, will be four by the time the bone scan is done, and my CTCs/markers have dropped to single digits. How many scans do all of you get? Please help me find some hope here while I wait. I"m terrified they will find this crap spreading throughout my body and turn me over to hospice.

Claire in AZ


  • bighubs
    bighubs Member Posts: 24

    Claire, I'm sorry I don't have any advice on minimizing scan anxiety, but did want to offer that there are some cancer centers offering free FES PET scans as a trial for imaging lobular cancers (since lobular notoriously don't show up well on FDG PET scans). The scan is the same, it's just the radio tracer they use that is different. The typical FDG scan uses a glucose based injection while the FES uses an estrogen based injection. If insurance won't pay for the standard FDG PET, perhaps you can find a trial that can get you what you are wanting.

    Here is an example, though it's in Salt Lake City and not Arizona.,status:rec,studyType:int%20obs&term=lobular&page=2&rank=11#contacts-and-locations

  • kotchaj
    kotchaj Member Posts: 209
    edited March 7


    Sending you some hugs. Scan-xiety is awful. Verzenio was very good to me and there's no reason why it can't be to you as well. I think because we've been in that place where we thought everything was okay until bam, it wasn't.

    I've got a bone density aka Dexa on Friday morning. I understand that fear and mine is just for osteoporosis this time around.

    I get yearly scans for everything else and this year no CT as there seems to be no evidence of disease. I'd still like a scan to show me that, though.

    There's always that little voice in the back of your mind that says, "What if.." What if this time they find NOTHING when they do yours? Amazing things happen every day to people all over the world. Just maybe it's your turn for one☺️

  • kbl
    kbl Member Posts: 2,675

    @claireinaz Umfortunately, you won’t be able to get an FES PET that Bighubs is suggesting right now because you’re on fulvestrant. You need to be off that for some time before you can have one, so keep that in your back pocket for later.

    It’s very common to get a CT and bone scan, and they usually do them every three months in the beginning. They don’t show my cancer at all, even though I’m full of ILC cancer. Only MRIs work for my bones. And the FES did see my cancer.

    I would say if tumor markers work for you and they’ve come down, that’s a very good sign. Mine have not been in single digits during my whole cancer journey.

    I’m sending you hugs and peace as you wait. The waiting is so hard.

  • divinemrsm
    divinemrsm Member Posts: 5,995

    claire, I know it’s hard to put out of your mind. I learned to find ways to distract myself from always worrying. For me, it helps to make plans to do something fun like go see a movie or take a day trip somewhere. I also like to get immersed in a binge-worthy show or involved reading a good book. Sometimes deep breathing exercises work or doing light meditation. Taking a walk or a drive helps, too. Please know I’ve been taking a small daily dose of an antianxiety medicine, buspar. since the year I was diagnosed with mbc. It really was a game changer. So you might consider discussing that option with your doctor.

  • claireinaz
    claireinaz Member Posts: 679

    Hi, I was doing really well—been on Lexapro since Covid (it works), have Xanax to use when necessary (the past 2.5 months haven't needed at all), and now bam! Anxiety all over the place.

    I did look into the FES Pet trial and did see I have to be off Fulvestrant so that won't work. I will ask (again) about the FES Pet; I've brought it up to my MO before. She seemed to think it wasn't necessary at the time I got the regular PEt and apparently BCBS wouldn't pay for it anyway. I suppose if the bone scan shows activity then I can get a PET and BCBS will pay for it. I will ask her again why we aren't worried about treating ILC like it's every other cancer when it behaves differently.

    The MRI and CTs did show cancer (and so did the PET) initially in Aug/Sept/Nov, so I'm hoping that the next scan won't at least show progression. That would flatten me. I don't know what it means for tumor markers to "work for me", but when I began to suspect something was going on in 2022 they had climbed from the 20s to 68, I believe.

    I effing hate this. It's exhausting, in spite of the fact I do yoga/Pilates/hike both with girlfriends and alone every day, almost, and do day trips with husband. I write, I work part time, but there is this cloud blocking my sun that disallows me to feel hopeful at times, and I just want to curl up and pull covers over my head. I hate that feeling too.

    Claire in AZ