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Diagnosed with bone mets

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benisse
benisse Member Posts: 14

I tried to update my signature, but it didn't save. I'll work on it later. I am 56 years old. I was dx with IDC right breast, Stage 1, Grade 2, 2cm in 2009. I had BLM with a LD flap and tissue expanders. I had sentinel biopsy with 2 removed and rapid test showed no cancer in either, but later pathology showed micromets in the 2nd of the 2. Also had LVI. Chemo was FAC x 4 every 3 weeks and 12 weekly taxols. I was on tamoxifen for a year but it failed and I had lupron shots until I could get an oophorectomy (and hysterectomy due to family history not breast cancer). Then 10 years on an AI...I switched a few times but was on exemestane most of the time. In 2017, I injured my back playing golf and imaging the oncologist ordered showed I broke a vertebra. I did PT for it and from then on I blamed pain on that broken vertebra. I had other symptoms through the years, but always attributed it to hashimotos thyroid disease or the AI side effects. The oncologist took me off the AI in September 2019. In November 2019, probably unrelated, I woke completely deaf in my right ear. I had intratympanic steroid shots and oral steroids, but never regained hearing or resolved the debilitating tinnitis. In December of 2020, I had a lot of breast pain, so had my silicone implants removed and they were both ruptured. Then in February this year, I had a physical and my Alkaline Phosphatase was elevated and had doubled since 5 months prior. I scheduled tests Oncologist ordered, and then had a spontaneous injury to my back just while I was cooking dinner, with massive pain. Bone scan showed mets to skull, bilateral ribs, bilateral pelvic bones and the largest area to my spine in the L1 area. Abdominal MRI showed clear liver, but lesions of unknown status in the spleen. PET scan showed extensive lymph node mets in the supraclavicular and pectoral areas, but no uptake to the lungs or elsewhere. Lumbar MRI showed much more extensive mets to spine, including thoracic area and the marrow at L1/2. My oncologist says the next step is a bone biopsy and then a treatment plan to probably include radiation of the L1/2 area and Ibrance/Letrazole and a bone builder. I left out a most important factor, and that is, I have a mutation... chek2, 1100delc and I recently read these cancers are resistant to chemo. I have a billion questions, but will start with a few most pressing. Do skull mets often mean brain mets? I'm perhaps having a brain MRI soon but am thinking some of what I worried were brain mets symptoms are actually impinged nerves from the spine and lymph nodes. Do the lymph nodes worsen my prognosis? Are lymph nodes commonly involved? Do they respond to treatments as well as bone mets? Does the bone marrow involvement worsen my prognosis? Does it respond to treatment with radiation? I feel scared to move about very much and feel so fragile...should I? What else should I be asking? I wasn't sure where to post this so please correct me as needed. Thank you!

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  • moth
    moth Member Posts: 3,293
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    Hi Benisse, sorry that you find yourself here. We have a bone mets thread with a wealth of resources & support https://community.breastcancer.org/forum/8/topics/...

    Like your oncologist says, if your biopsy shows HR+ again, you will likely be prescribed something like Ibrance in combination with hormonal therapy. Ibrance is not chemo - it is a CDK4/6 inhibitor so it has a different mechanism.

    Lymph nodes don't really change things from what I've seen in the literature. I've seen some studies on lymph nodes only but if lymph nodes are lighting up in addition to something else, the 'something else' takes priority, kwim?

    mets in the skull are different than mets on the brain - so definitely no reason to think one means the other

    again, sorry you find yourself here

  • kbl
    kbl Member Posts: 2,733
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    benisse, I do have skull mets but no brain mets. I also have extensive bone marrow involvement but have not had any broken bones. I was on Ibrance for two years before switching to Xeloda. I also have mets to my stomach. I have the lesions from my skull to my femurs. I was a missed diagnosis for six years with no treatment, and I’m doing pretty well. I hope you get a treatment plan soon and can get your pain under control.

  • sadiesservant
    sadiesservant Member Posts: 1,875
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    Benisse, I am also sorry you find yourself joining the club that none of us wanted to belong to. You are in such a difficult place right now and so, first, I am sending a virtual hug. Try to stay grounded while you work towards a treatment plan.

    I can’t answer all of your questions but can say that skull mets and brain mets are two very separate things. I have extensive bone mets which turned up in my skull, base of the skull and c-spine. I also had symptoms (culminated in severe headaches and some issues with numbness and tingling in my face, jaw and other areas) which were resolved by radiation treatments. It’s very scary to think that the cancer is so close to the brain but it seems it’s not an obvious path from the skull to the brain, thank god!

    Know that we are here for you and ask as many questions as you want. This is a very supportive bunch.

  • benisse
    benisse Member Posts: 14
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    Thank you for answering my questions, moth, kbl and sadiesservant! I've read a lot on the bone mets thread and am learning lots of information that I can't find anywhere else. I'll post on there to introduce myself soon.

    The MRI didn't show any fractures, so my oncologist said no radiation for now.

    I have a bone biopsy on 4/18 and then will meet with her to get my treatment plan. Two questions about that:

    I am supposed to travel on Wednesday after the Monday bone biopsy which the scheduler said is a needle biopsy. Should that be fine?

    I am hoping to get a 2nd opinion from MD Anderson (I'm treated at Texas Oncology in Dallas). Is the biopsy specimen made available for the 2nd opinion in case they want to perform their own pathology? Or do I need to request that? The scheduler didn't know the answer to that.

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,843
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    Sorry that you find yourself here again. I can answer your bone biopsy question. I had a biopsy of my upper femur and it was a non-event. A friend drove me there and after a wonderful combination of drugs, pain killer and Versed, I had no worries. It was quite painless and thanks to the amnesiac properties of Versed, my memory is quite fuzzy. I was starving afterwards and was given a turkey sandwich which I devoured in record time. By the time the drugs wore off I was ready to be discharged and my dd arrived to drive me home. I had no pain and did not need anyone to spend the night with me. The location of the met being biopsied may change the experience but you should be fine shortly after the procedure. Take care.

  • benisse
    benisse Member Posts: 14
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    Thank you, exbrnxgrl. That's very helpful! Take care!

  • kbl
    kbl Member Posts: 2,733
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    Benisse, I had a second opinion after I had an endoscopy that found my cancer. I think the slides were provided to their pathologist, but I don't remember how they got there. I would tell the 2nd opinion doc you had a biopsy, and see if they can order the slides to be sent to them.