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MRI showing brain tumor

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I was just told yesterday my occular migraine is a tumor. The radiologist suspects mets from the breast because it is so close to my dx, but said the mass resembles a high grade glioma. I'm seeing the neurosurgeon this evening, getting a pet scan soon. The mass is over 3x4 cm. I've suspected this, thought it would happen anyway because I had lymphovascular and perineural invasion, but I still have some disbelief. I'm hoping it's just a glob of queso in the wrong place, or my eyes moved too much during imaging. How often can this be misdiagnosed? How off can the dimensions be? What questions should I be asking the surgeon and my oncologist?

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  • moth
    moth Member Posts: 3,293
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    I don't know anything about brain masses but just wanted to say I'm sorry this is happening. I hope you get answers from your doctors and a good treatment plan asap, whatever this thing turns out to be.


  • waves2stars
    waves2stars Member Posts: 126
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    Thank you! They are optimistic it’s brain mets, which I am excited about because it’s better than the alternative!

  • beach2beach
    beach2beach Member Posts: 245
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    Sorry you have to deal with this waiting and worrying. Hoping you get quick answers and please keep us informed.

  • piperkay
    piperkay Member Posts: 132
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    Waves, I am so sorry this seems to have turned out not to be just an ocular migraine. I'm with you in hoping, though, that it's just a stray glob of queso.

  • waves2stars
    waves2stars Member Posts: 126
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    Neurosurgeon said he's confident it's BC Mets because of some details on the imaging. I'm having it removed in the next week, sooner if I can get them to finish preauthorization with insurance. The surgeon said the mass is large and needs to be out immediately, but anticipates an easy surgery and recovery, a little in-surgery radiation, then even a low risk of recurrence. I'll see my MO before and get the pet scan before surgery.

    I'm considering moving over to MD Anderson because I feel I was hung out to dry. I reported Neuro issues before the breast dx, was dismissed again and again by various doctors, and even my ophthalmologist wrote me off. Thankfully he sent a report to my primary care who stopped dismissing my concerns after my breast dx and ordered an mri immediately. I know no facility will be perfect but I have a lot of distrust right now. I don't know what happens next, like how they decide with mass came first, if they're different types, do they do genetic testing on the tumor like the breast, and how do they stage this. I had Neuro issues begin in spring of 2020, vision in fall of 2019. Maybe it doesn't matter how long it's been there. I'm thankful they have to believe me now, and that it appears to be the “good kind" of brain mass, and glad for the prospect of years to live and not just months.

  • sunshine99
    sunshine99 Member Posts: 2,644
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    waves2stars, I'm so sorry you're in this situation. I'm glad your PCP ordered the MRI. I'll follow this thread to keep tabs on you.

    (((hugs)))

    Carol

  • moth
    moth Member Posts: 3,293
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    Glad you're getting some speedy action on this now. Frustrating it took so long to get here.

    Staging is automatically 4 if it's confirmed brain mets as opposed to another primary tumor. Pretty sure it goes to a pathologist for an exam and they will report out just like any other tumor. Oncology will likely want to start you on a systemic treatment after surgery. There's a newish drug Tucatinib for her2+ which crosses the blood brain barrier.

    hugs

  • katg
    katg Member Posts: 215
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    My friend is at MD Anderson and loves it. Stage 4. They listen and use all the latest treatments. Not all hospitals do this and when my City of Hope team gets a result, that think hard about the next course. They explain to me why and what to expect. They call my insurance company to defend that the procedures as necessary. Experimental can be a label if it is not widespread or just out of a clinical trial or testing. You sound like you are in acceptance waves2stars... I pray whatever the diagnosis that it is manageable and there is a treatment in place for you. Two years is a long time to not have a good answer to your question.

  • wondering44
    wondering44 Member Posts: 261
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    wave2stars,

    I am sorry to see you getting that news.

    I switched to MD Anderson. I found out my "negative margins" from mastectomy were "involved margins " by calling MD Anderson." MD Anderson is a world of difference from the care I found in my area. Please give them a call if to do nothing else but get information about how the facility works for you compared to your local area facility.

    And you are right to feel "hung out to dry." Thankfully your PCP listened and ordered the MRI. I think that concerns that doctors dismiss have cancer patients consider if they are wrong and in need of "reassurance." We should not have to feel that way during the steps we take to ensure we are on the right path and getting the right treatments. It is devastating to feel that and find out that our concerns are valid, and our concerns should always be valid and heard even if we get negative or benign results.

    I am sending thoughts your way and hoping you get answers quickly.

  • waves2stars
    waves2stars Member Posts: 126
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    They found a 2cm mass on my lung, and a couple of lymph nodes, with the pet scan. I’m getting the brain mass removed on Friday, will have a lung biopsy as soon as i recover. It’s so surreal! I’m glad for all the treatment options, and so thankful for you all being my teachers since last summer when all this began!

  • cathy67
    cathy67 Member Posts: 411
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    waves2stars,

    I pray for you.

    Cathy

  • racheldog
    racheldog Member Posts: 209
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    Waves, I am so sorry about this. This has terrified me as I have had three ocular migraines since 2021, one after a chemo infusion and two random ones. They never lasted long but never had I ever had anything like those before. I do have retinal issues and history but never any migraines. When I read about them in articles they say they are not worrisome but who knows? Were you having balance issues or brain fog or ? This news about you scares the heck out of me.

    If you are just out of surgery I will understand if you cannot answer back right away. Keep us posted on how you are doing.

  • waves2stars
    waves2stars Member Posts: 126
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    Racheldog, I had symptoms for many months. They included continuous pressure headaches, migraines, temporary dizziness, some confusion, extreme fatigue, challenges dealing with number (recipes, time, etc). All these could have rightfully been said to be side effects of tamoxifen. But when I had a ten day migraine, leaning sideways when I walked, plus the cognitive difficulties and continuous ceiling fan spinning in my field of vision, I worried about brain mets. My family thought I was overreacting. The onc, nurses, optometrist, opthamologist, and primary care didn’t think it could be mets so soon after my dx and mx. They wanted to put me on antidepressants! An on call primary care referred me to get an mri, which revealed it. Maybe they were technically right because it turned out to be mets from a primary lung cancer tumor. It seems to go to the brain before showing lung symptoms in some people. I am finally doing well, feel better than I have in a year or two. I’m going to MD Anderson this week to get a treatment plan. I still get a little confused and have lost some vision, but they think that may resolve with time. I have a mass in one lung, nodes and a small one in the other half of my brain. The large one was cleanly respected. Neuro suggested I wouldn’t need more surgery, just appropriate chemo and radiation.

    With you being HER2+, you might consider pushing for an mri with contrast. If it doesn’t make you crazy, keep a symptom journal, or check in with a neurologist to be sure. I passed all my vision tests even though I kept complaining I couldn’t see and was running into things on one side of my body. The neurosurgeon did the same vision tests, but added motion, and we were all surprised how much I couldn’t see! They are specialists for a reason. Yeah, you feel cray cray when you say you’re worried about a brain tumor, and it’s humiliating to be treated like a hypochondriac, but sometimes it’s what you have to do to get a thorough evaluation.


  • racheldog
    racheldog Member Posts: 209
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    Oh wave, I will think of you and hope you get a good treatment plan and do well. We are all here for you. I am always looking to blame everything on the AI drugs , I have started letrozole. Before breast cancer I considered myself tough as nails, but now I recognize every little thing as something bad. I do not have any of the symptoms you described but bless you for taking the time to update everyone about what you went through. Please, please keep us posted. I will be watching your thread.