having a brain mri this afternnoon

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elindy
elindy Member Posts: 25
edited November 2019 in Not Diagnosed With a Recurrence or Metastases but Concerned

SO I saw my mo today as I have been experiencing som neuropathy type symptoms- week fingers, a clumsy lft foot anddroopy facial muscles, s well as new rib pain and fatigue. SHe ordered a Brain CT which the insurance denined, but they approved a brain mri with contrast which my docto said was better anyways. I"ll be scheduling a full body scan as well. OF course IM freaking out, but happy to be gettting everything checked out. HOw worried should I be?

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  • Moderators
    Moderators Member Posts: 25,912
    edited July 2019

    Hi elindy,

    We just wanted to stop by to let you know we're thinking of you as you go to your MRI today and are sending you good thoughts -- we're all here for you! Please keep us posted with what you find out.

    --The Mods

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  • elindy
    elindy Member Posts: 25
    edited July 2019

    turns out I was right to be worrried. 6 yrs out from tnbc stage 1 and the mri with contrast showed 1 lesion on the right side of my brain pushing on the left side causing my left sided symptoms. With no prior brain stains nothing to compare against. I could rant this is why post treatment scans should be offered even if self pay. I know the protocol is no scans. My mo stopped by the hospital where I was admitted for more tests, my chest abdomen and pelvis ct scan all clear . That’s something good. I’ll be seeing a neurosurgeon today to discuss removing the lesion. My mo says it must come out and be biopsies. Well seee what the neurosurgeon days. I need to be able to travel to Italy in October for my sons weddding, I’m very scared..I’m glad I listened to my body and symptoms. But I am shocked to in the hospital with this scenario. Anyone care to offer wordsof encouragement

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  • Catsme
    Catsme Member Posts: 74
    edited July 2019

    Hi elindy, so sorry you are dealing with this. I can't imagine what you must be going through. I'm sure some of the folks here who've been where you are will be along soon. I just wanted to reach out and send thoughts of hope.

    There is a brain mets thread here - https://community.breastcancer.org/forum/8/topics/...


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  • Legomaster225
    Legomaster225 Member Posts: 672
    edited July 2019

    I’m really sorry. I hope you get a good explanation and treatment plan from the neurosurgeon today to ease the unknown.Praying for you.

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  • wallycat
    wallycat Member Posts: 3,227
    edited July 2019

    I'm so very sorry to hear this. The lesion has not been confirmed to be cancer yet, right? So it could be b-9 or unrelated to breast cancer at all. Sending good thoughts and virtual hugs.

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  • illimae
    illimae Member Posts: 5,710
    edited July 2019

    Elindy, Do you know the size of the lesion? If it’s small enough for gamma knife targeted radiation, that would be great, it works really well and recovery is pretty easy. It’s scary but doable 😀

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  • romashka
    romashka Member Posts: 62
    edited July 2019

    Hi elindy. I'm one of your tnbc friends. My heart is with you.

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  • MissouriCatLady
    MissouriCatLady Member Posts: 977
    edited July 2019

    Hi Elindy. I would be scared too. Sending you hugs and know that I will be praying for you. Lisa

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  • KBeee
    KBeee Member Posts: 5,109
    edited August 2019

    So sorry you are dealing with this. What is the current plan? One of my chemo pals from 2013 dealt with this 2 years ago, and she has done well since then. Her lesion was removed. Thinking of you. Keep us posted.

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  • elindy
    elindy Member Posts: 25
    edited August 2019

    my tumor was surgically removed. Nit good, it’s a glioblastoma. I’ve stared daily radiation and oral chemo. Will finish up early October. then a 4 week break, before starting another chemo round of chemoLooks like I’ll be looking for a different online support group.

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  • romashka
    romashka Member Posts: 62
    edited August 2019

    elindy,

    Wherever you are, we are with you.

    Wishing you ease on your treatment journey. 💜

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  • Spoonie77
    Spoonie77 Member Posts: 925
    edited August 2019

    I'm so sorry to hear this news ELindy. Wishing you the best of options and response as you go forward. I'm not familiar with Giloblastomas. What does you team say about prognosis? How are you holding up with RADs and the new chemo? I wish I had something wonderful to say or offer that would help, all I can say is that I'm one of the many holding you in their thoughts and hoping the systemic treatments wipe out any remaining pieces and cells of the Gilo, wherever they may be.

    I too agree there should be an option to self-pay for a scan, perhaps this and other cancers could be prevented that way. Le Sigh. I go in for my own follow-up brain/neck MRI next week due to new symptoms and am as nervous as you were going in to yours.

    Please keep us posted as you can. Sending you good vibes, strength, and as much sunlight and slices of joy that are possible in the weeks ahead.



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  • KBeee
    KBeee Member Posts: 5,109
    edited August 2019

    Praying the treatments eradicate the tumor.

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  • sulfra
    sulfra Member Posts: 2
    edited October 2019

    I am so sorry t hear this. I was recently celebrating 5 years since my breast cancer diagnosis and shortly thereafter, I was also diagnosed with a glioblastoma. I have had surgery and have recently started the radiation and oral chemo. I will finish late November and then get a month break.

    How are you doing with the treatments?

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  • Moderators
    Moderators Member Posts: 25,912
    edited October 2019

    Hi Sulfra-

    We want to welcome you to our community here at BCO. We're so sorry for what brings you here, but we hope you find this to be a source of support, and we hope the rest of your treatment goes well!

    The Mods

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  • sulfra
    sulfra Member Posts: 2
    edited October 2019

    Thank you so much.

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  • elindy
    elindy Member Posts: 25
    edited November 2019

    wow, I am so surprised to read the similarities in our stories. I am now fighting a GBM diagnosis with very poor prognosis. I finished the 6 weeks of daily radiation and oral chemo temodar. There is not much in the chemo arsenal to fight this. Best of luck to yo

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