Brain Tumor Chat

I’m slowly digesting this news – yes, now my breast cancer is in my brain. But as I process this information, I also have to keep reminding myself that the lesions are very, very small. These spots are manageable. I’ve found some measure of compartmentalization that has allowed me to give this new development a place, but to keep my frantic spiraling at bay. (Or maybe it’s the tumor? Kidding – it’s not the tumor.) As of now, I have started to get a plan in place for treatment.

Last Friday, Christian and I met with Dr. Z, my new Radiation Oncologist, who will be overseeing my radiosurgery. I feel very confident in her – she sat with us for over an hour, reviewing my scan, answering all of our questions, and ensuring that we ourselves were comfortable with the treatment plan. The plan is as follows: on Wednesday, I will meet with Dr. G and the clinical trial team and determine whether I will be eligible to continue on the clinical trial. It’s unclear whether these spots popped up when I had other progression in December, or if they are more recent. My feeling is that I will not be able to continue on the trial, but that’s not based on any sort of indication from my doctors. On Wednesday I will also undergo a high-contrast brain MRI called a brain lab, which maps out my entire brain in very fine detail. The images from this will then be used to create my treatment plan. The brain lab serves two functions: it allows the care team to more fully conceptualize the parameters of the brain lesions to completely target the cancerous spots and minimize any radiation to healthy tissue, and also ensures that they are not missing anything – either with the known lesions, or if there are other surprise lesions that need to be treated (or if the lesions show up as not cancer, which is very unlikely).

After the brain lab is completed and the team has a conceptual mock-up of my head, I will go in for a stereotactic brain radiosurgery simulation. This usually happens within a few days of the brain lab. In the simulation, I get fitted with a hockey mask-type face and shoulder mask made of mesh which screws onto the table and serves to completely immobilize me. Then the radiosurgery team will put me into a CAT Scan machine and line up the images on that scan with the images from my brain lab MRI. I then get marker dots tattooed on my head to indicate placement points. This simulation identifies exactly where my lesions are positioned, and from there, the team can prepare the radiation treatment plan for precise placement, minimizing the interaction of the beams with healthy tissue, while targeting the cancerous tissue.

About 1-2 weeks after the simulation, I will go back for the actual stereotactic radiosurgery, or SRS. Because my lesions revery small, unless anything changes, I will only need one treatment. I will get some form of light sedation and then bolted into my serial-killer-mask on the treatment table. Once I’m fully positioned (which for me also includes a big leg wedge and all of the warm blankets) The radiation arm and the table will rotate as needed to most accurately target the lesions. If all goes well, I should be done within about an hour. While any work with brain tissues carries risks, this treatment should eradicate all known lesions in my brain, and they are not expected to come back. Other brain lesions could potentially show up in the future, but these lesions are expected to be gone forever. I should have minimal hair loss – if there is any, it will be to the radiated sites. I’ll receive a short course of steroids following the procedure to prevent any brain swelling, and will likely have a bit of fatigue for 1-2 weeks following the procedure as well. However, as I understand it, the procedure should be very effective to treat the existing lesions and have minimal side effects. I’ll have follow up scans every 2-4 months going forward to monitor my brain, but, barring the presence of new lesions, there is no other ongoing treatment that I will need for the brain lesions, although I will continue with some sort of other drug therapy going forward for the rest of my life to address the metastases in the rest of my body.

10 thoughts on “Brain Tumor Chat

  1. Continued prayers for you and your loved ones. May God put his healing hand on you and walk with you during this season.


  2. An edit: “During those two weeks of possible fatigue following the procedure, my local friends will be ready and waiting to help me out however they can. I’m SO worth it!”❤️


  3. I am so sad that this is happening to you and I am sending you love, hope, and so much admiration for your approach. Your team sounds wonderful and like they have really empowered you with the information. You are in my heart. ❤


  4. My prayers are surrounding you. Opening up the way you have to so many of your readers during the hardest journey of your life is beyond admirable. Sending a massive virtual hug. XO


  5. Hi Emily,
    I’m glad you have a plan in place and a stellar team to help put it in motion. Even so, this is about you, and I’m sure you’re feeling a million different ways. Thank you for your candor sharing about all this with us. Along with so many others, I’m in your corner.


  6. I went through 3 cyber knife radiation treatments in 2008 after having my one single tumor removed surgically. It was too large for cyber knife alone but the combination worked well because I have had no further problems in my CNS since then. I wish you well with the treatment of yout CNS and I hope it stays free of disease!! Love & prayers❤


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