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Just diagnosed with bone Mets terrified. Please help

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I everyone. I have been gone from the boards for some time. I was diagnose with stage 2 breast cancer in 2013. Last week had a stomachache went to ER they did abdominal scan. Everything fine but found lesion on pelvis. completely unrelated to why I went to ER. After additional scans came back consistent with metastasis. Multiple lesions. I feel fine. Can I get some advise ladies. I am so nervous and afraid.

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  • exbrnxgrl
    exbrnxgrl Member Posts: 4,959
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    Jen,

    I’m sorry you had to return to bco. Will they be able to biopsy any of the lesions to confirm ? I know that biopsies are not always possible so the imaging will suffice.
    Not sure what type of advice you’re looking for. There are a few possible variables, in terms of treatment, so much will depend on the particulars of your situation. I have a single bone met, discovered 12 years ago, that was an incidental discovery as yours was. I had no pain or symptoms. I had rads to the bone met and then AI’s only but I am a unicorn. Few, if any, doctors would prescribe the course of treatment that I’ve followed, yet here I am, 12 progression free years and still going.
    Although I completely understand that I am very, very atypical, there are many newer treatments (none used by me) that folks do well on. While stage IV is not curable, there has been progress in treatments in the time since my initial dx. Take care

  • jen1
    jen1 Member Posts: 60
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    Thank you so much exbrngrl They are planning to do biopsy but from the MRI reports and conversations it seems for sure. Thank you so much. I will be reaching out with questions.

  • wren44
    wren44 Member Posts: 7,890
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    I was diagnosed with a bone met 10 years after my stage 1 diagnosis. I'm taking Ibrance which is oral and so far have had no side effects. I also take Letrozole which is an anti=estrogen like anastrozole. It's been a year and a half and so far no further progression. I've seen women go 10 years and beyond with bone mets. I hope you have an easy treatment and successful results. Hugs. It's hard news to hear.

  • katg
    katg Member Posts: 218
    edited November 2023
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    I am not at this stage, but I like to say what I have done is to wait until you meet again with the DR, worrying about tomorrow is all about fear. I agree with what has been said. So many new treatments. I have a friend at MD Anderson in Texas that is stable after 4 years with her bone mets. Herceptin is one drug i know she takes.

  • moderators
    moderators Posts: 8,216
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    @jen1, we're really sorry to hear the news. We know the period just after a diagnosis can be scary and confusing, but once you have a treatment plan in place, things will start to stabilize a bit. In the meantime, feel free to come here to share your thoughts, ask questions, or simply let it out. We're all here to support you.

    Also, we wanted to mention, that we hold free weekly virtual meet-ups with other stage IV members. It can be a nice way to meet others who know what you're going through and get responses in real-time. See here: Virtual Community Meetups

    Good luck! Let us know if there is anything else we can assist you with!💙

    Sincerely,
    The Mods

  • jen1
    jen1 Member Posts: 60
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    Thank you all. I am trying to take it all in. This week is a busy week in addition I have insurance situation. , thats a long story… but everything appears it is going to work out. I need all the encouragement I can get ladies i am so overwhelmed. Thank you for your support. I will keep you all posted

  • jen1
    jen1 Member Posts: 60
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    Hi Ladies, I had biopsy on Wednesday. Just waiting for final confirmation. I am so anxious. All MRIss say consistent with metastic cancer. I went online to see if pathological report up I saw another report that was titled Prognostic markers. I could not open it. I have reached out to my doctors office they said that they dont give results over phone,that is not true,they gave me the results of the MRI over the phone. My appt. is on dec 20th. I have reached out to nurse navigators. Ladies I thought I would be ok handling this I am going down a rabbit hole. Can you all give me some words of encouragement.

  • moderators
    moderators Posts: 8,216
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    We're all here for you, @jen1. One day at a time, we're here every step of the way.

  • ausykaren
    ausykaren Member Posts: 62
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    Sorry to hear this Jen1 but there have been more developments in the drugs to treat bone Mets since 2013. I think you have every reason to be hopeful. Can I ask whether you were still taking an estrogen blocker?

  • spookiesmom
    spookiesmom Member Posts: 8,178
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    My cancer returned for the third time in my bones in June of this year doc put me on falosadex ibrance and zometa. I don’t have any pain with it I didn’t even know it was back done on a routine lab tumor markers. I think it’s very doable to go a long time on meds before you run into problems. Once you get the biopsy back and find out exactly what’s going on you’ll feel better.

  • jen1
    jen1 Member Posts: 60
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    Hi everyone,well my results are in and I am officially a member of the club. I will be meeting with the doctor on Dec 20 to talk about plan. The oncology nurse mentioned falosadex and pills. I could not take it in. I am anxious to start treatment already. Right now its just in the pelvis, but I dont know if she will be ordering more things. So far scans of lungs clear. Ladies are any of you on anti anxiety medication. When I was first diagnosed people were amazed at how calm I was. I had no anxiety I was a teacher I just did what I had to do. My daughter was ill at the time and was on my insurance so I had to go to work. I also taught a special ed class, went to chemo continued to work through it all. Now I am retired and falling apart with so much anxiety. Thank you all for reaching out to me, I am so overwhelmed.

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,959
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    Are any of us on anti-anxiety meds? Without any evidence, other than anecdotal, I’d venture to guess that many of us are or have been on them! This is an excellent thing to ask your doctor about so don’t hesitate as it can be very helpful in getting through rough patches.

    I am also a retired teacher. The classroom is definitely my natural environment* and I have never been anxious there but the medical world, particularly MBC, is a whole different thing. This early phase of an mbc dx is difficult. You will likely feel less anxious when you know your tx plan but in the meantime please ask about meds. Take care

    *I still sub. I love the teaching part but am thrilled to have given up the rest 😉. Tomorrow? Grade 2 at my former school.

  • jen1
    jen1 Member Posts: 60
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    Thank You exbrngrl, I was thinking about subbing, you are giving me hope. I feel like I have a lot to give . I have been volunteering helping out my former assistant who is now a teacher. I will absolutely talk to my doctor. Also I think some of this is so shocking because I had a bone scan back in March and nothing showed up. I was having some back issues and to be on safe side doctor ordered a bone scan. There's a lot more to tell but I think all of it is contributing to the feelings. I am so glad I have this forum, and I appreciate all of you, Please be patient with me as I navigate this. I know I can with all of you. I appreciate all of you Ladies.

  • jen1
    jen1 Member Posts: 60
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    Hi ausykaren, I did not complete taking estrogen blockers

  • colibri_girl
    colibri_girl Member Posts: 10
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    Hi Jen1,

    I right there with you. In October of last year, at the 5 year post first diagnosis (Stage 1) mark they found metastasis to my spine in two places. No pain, no symptoms - found incidentally from another test for something that turned out to be nothing. The testing and waiting for confirmation period was really rough. I was down there in that rabbit hole with you. My tx plan is Kisqali and Faslodex and every 3 months Xgeva to strengthen my bones. Some side effects, but I’m hoping it’s working to stabilize. Some days I forget I am Stage IV, other days I ruminate about what the future may hold. I’m a planner by nature and by profession (retired just two years ago), so the uncertainty going forward is something I struggle with. I’ve always been active and trying to stay that way. Continuing to volunteer, meet up with friends, follow my hobbies of photography, writing dabbling in watercolor. Also joined a support group for Stage IV only. Have only been to 2 virtual meetings so far, but have picked up a few insights in each session. It’s okay to feel anxious. In my opinion you have to acknowledge your feelings and not bottle them up, but at the same time, don’t let them overwhelm you.

  • moderators
    moderators Posts: 8,216
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    Hello @colibri_girl, and welcome to Breastcancer.org, although we're sorry you had to find us for this reason.

    We're glad to see how you approach each day with determination, finding joy in your passions and hobbies, and staying connected through volunteering and support groups. It's admirable that you maintain an active lifestyle so proactive! 🤩

    If you like photography and art, here are other groups you might want to join:

    A Retreat for Peaceful Contemplation

    CALLING ALL ARTISTS- Lets make an art gallery!

    We can't wait to see your creative talent!

    Warmly,

    The Mods

  • eleanora
    eleanora Member Posts: 299
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    @jen1

    I suggest you read through exbrnxgirl's excellent thread "Life does not end with a stage IV diagnosis". It helped me when I was down the rabbit hole.

    Diagnosed in 2022 with bone mets, Kisqali/Faslodex/Xgeva since then. Initial 600 mg dose lowered to 400 mg after one month because of severe GI issues, but pretty tolerable since then. Some hair thinning, bone pain (I also have arthritis) but I continue to live a pretty normal life - travelling, visiting friends, hosting family dinners and holidays, volunteering. Have occasional fatigue but can't attribute that to anything specific. I was lucky that cancer didn't strike until after I retired, so I have no job stress and my children are all adults with settled lives.

    I wish all of us a long run on this combo!

    Eleanora

  • jen1
    jen1 Member Posts: 60
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    Thank you so much ladies.Eleanora/coiibri_girl /exbrngirl/aussykaren. Everytime I come on here I feel so much better. Thank you all for the supportive words. I hope soon to be a comfort to others as well.

  • malleemiss251
    malleemiss251 Member Posts: 382
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    @Jen1, I am sorry that you have joined the club nobody chooses to join. My best advice is to take one day at a time and one step at a time and be kind to yourself. I was diagnosed de novo in August 2023 and am still getting my head around the seemingly never-ending stream of appointments, be they dental, oncological, scans or my general practitioner.

  • malleemiss251
    malleemiss251 Member Posts: 382
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    @Jen1, sorry - also forgot - be prepared for all medical issues to be viewed through the cancer lens. I find it very frustrating but am learning to advocate for myself.

  • jen1
    jen1 Member Posts: 60
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    Thank you malleemiss