In 2016, I discovered that my early-stage breast cancer had not only metastasized but had left 12 tumors scattered across my brain. The image of my brain MRI, with small white circular spots dispersed amongst the tissue took my breath away. While two years prior, news of my early-stage diagnosis had reduced me to a puddle of tears, the revelation that my brain was now invaded by cancerous tumors left me speechless. I was in shock. I knew what this meant. It would be two more days before I shed a tear. Once I did however, I couldn’t stop.
Arguably, the brain is the most important organ in the human body. It controls and coordinates movements, like hugging a loved one. It allows us to think and feel, and enables us to have memories, those treasured moments with our family and friends. The brain contains everything that makes us not only human but uniquely ourselves. So, to be told breast cancer is now growing and securing its spot in this sacred place is deeply personal and incredibly scary.
Given how frightening this diagnosis can be, it’s only natural to want to find someone who can relate. That was my first instinct. This proved to be a more difficult task than anticipated, and finding someone who could tell me what to expect from the clinical trial drug I was starting seemed like finding a needle in a haystack. My cancer center could read the expected side effects of this trial drug from the pharma company data but not much more. There was no one else at the clinic on this drug. They hoped it would keep my brain Mets from growing but how was I going to feel? I was nervous about taking this drug, but it was my best option after deciding to forgo my other option, whole brain radiation. On the day I started the trial drug, I sat alone in the hospital cafeteria and stared at the unmarked capsules filled with what looked like white powder. After what felt like hours, I finally gathered up the pills and swallowed them. I sat and waited. Would I explode or turn into part human, part zebra? Ok, knew I wouldn’t, but it felt so bizarre to swallow a drug that no one I or even my doctor knew had ever taken.
Eventually, after much searching, I found someone online who had brain mets and was on the same trial. Finding her gave me a sense of companionship and peace. She was able to tell me what to expect and how to manage the inevitable side effects. While she has since passed away, her support in those first days will never be forgotten.
Over the years, as I’ve dealt with ongoing treatments for my brain mets, including oral chemotherapy, IV chemotherapy, radiation and so on, I came to realize that having a diagnosis of brain mets was almost like having a separate cancer from when MBC is just in the body. There are far less drug options to treat brain mets. Many drugs that are effective on breast cancer in the body, don’t work on tumors in the brain. Oncologists’ knowledge of brain mets and available treatments can, at times, be lacking. This diagnosis also can come with an entire set of new doctors like neurologists, neuro-oncologists, neuroradiologists, neurosurgeons and more. This can feel incredibly overwhelming to manage. How did other women do it?
While I help run a Facebook group for women with brain metastases, it only allows them to share brief typed messages. As I moderator of this group, I’ve noticed a common theme emerge. Women with this diagnosis just want to connect with others like themselves. This observation led to my desire to start an online support group where women could connect, in real time, over shared experiences. I’m grateful SHARE has committed to supporting such a group. Starting in May, women who currently have or had a diagnosis of brain metastasis can meet twice a month over Zoom. I hope this group will reach this unmet need in the brain met community.
Breast Cancer Brain Mets Support Group