Scared and no one is telling me anything

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Katfur111
Katfur111 Member Posts: 3
edited February 2017 in Stage IV/Metastatic Breast Cancer ONLY

just had a visit with my oncologist and labs done as usual. My CA-15-3 started off greater then 900 when I was DX with stage 4 invasive lobular breast cancer that spread to my omentum ( caking) which is "resolved " now. And a dark spot on my hip and tail bone. Few ribs and sternum. My major organs are free of any cancer at this time.said it was hormone fed cancer so put me in meta pause on lupron shots and xgeva shots both monthly. Take Armadidex my mouth fail 1 mg. Well my CA15-3 came down to 18 from 900's well this rest tue was up to 54.8 so I'm freaking out. Oncologist rechecked it yesterday and it's up more to 56. What does this mean? From the beginning my oncologist said as long as this level stays down and this treatment is working I'm good. When this treatment stops working there is nothing left to do but chemo. And then death. And keeps saying she has a patient that is on the same treatment and is 6 yrs out. Well I'm Dx 1 year now and if this stops working then that means I die sooner? I'm only 48 and still raising my children. To young to die now. I'm so scared and depressed. Should I get a second opinion? I feel so alone in this. Thanks for listening.

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  • cive
    cive Member Posts: 709
    edited February 2017

    There are several AIs besides Armidex so your MO may just try switching you to one of those.  Really though if you think about it, to go from the 900s down to 18, that is a 98% drop.  Even with them at 56 your TMs are still at a 96% reduction from where they were.  It is not unusual to have TMs vary since they can be influenced by inflammation as well as other things.  You can certainly request a 2nd opinion if you think it would ease your mind, but I wouldn't be too worried about a slight increase in TMs as long as your scans are good.  Have you discussed this slight increase in TMs with your MO?

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  • DivineMrsM
    DivineMrsM Member Posts: 9,620
    edited February 2017

    Wow, Katfur, I do not think your oncologist is up to snuff on treating hormone positive metastatic breast cancer. There are numerous other anti-hormonals and aromatase-inhibitors besides arimidex that can be tried to keep the bc stable before ever having to start chemo.

    You need to arm yourself with the right information. One place to start is by requesting a guide to mbc compiled by one of our members, Bestbird. Here is the link to request:

    https://community.breastcancer.org/forum/8/topics/...

    There is a section in the guide regarding various treatment of hormone positive bc. You may find the many other parts of the guide informative as well.

    Each person has their own response to different treatment. I happened to have chemo first, then a lumpectomy then radiation and have been on Arimidex since then keeping me stable for six years. Try to take this a day at a time, a step at a time. Educate yourself. And you may eventually find you need to seek out a different oncologist who offers more hope and is up to speed on the latest mbc treatments. Best wishes to you.


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  • pajim
    pajim Member Posts: 2,785
    edited February 2017

    What Divine says. There are many hormonal treatments after Arimidex. Faslodex, Ibrance, A/A just to name a few. You are not going to die anytime soon, but when the time comes to change treatment you may wish to get a second opinion.

    FYI treatment decisions shouldn't be made from tumor markers but from scans. You said it's been a year. What do your scans say? If they're the same, you're all set.

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