Written by Angela – Brains for the Cure Ambassador and DNET Survivor
When hearing the words, ‘You have a brain tumor’, your mind begins to wander in multiple places; How long do I have? What does this mean? Is it even true? Are you sure? Could it be anything else?
While living in Nebraska in 2013, I received this exact life-changing news. The initial determination was a low to mid-grade glial neoplasm in the left temporal lobe and left thalamus. Before having the time to reflect the news itself, I wanted to know all the details to plan for what was to come. I made the decision that if I was being told I had a brain tumor, I better be sure there is no mistake on what I am facing and expose all possibilities of what the road ahead will look like. I made a commitment to myself that I would not accept the first ‘offer/diagnosis’ and would ‘shop around/seek multiple opinions’ before deciding on how my journey would play out. My family was devastated not knowing what the undertaking would be. Thoughts flooded my mind; Would everyone give me the same interpretation? Would all recommend the same course of treatment? Who are the most renowned brain tumor centers?
The amount of information you receive during multiple opinions is like seeing the rolling credits at the end of a movie; flying by so quickly and you can’t read them all. Reflecting on the multiple opinions confirmed what a roller coaster ride navigating such a diagnosis can be.
The first step was undergoing a brain biopsy (February 2014) to confirm what this tumor was. Initial recommendation was low-grade glioma. At this time, I had a 2-year-old son and my thoughts immediately were knowing that help may be needed in my daily life or recovery time. Because my closest family member was in Georgia, we decided to have the biopsy at Emory University in Atlanta. This would allow loved ones to be with me at important appointments and be my second set of ears They could step in to help with my son during surgery and post-surgery for a more feasible recovery. Biopsy results were noted as inconclusive.
Fast forward to returning home in Nebraska to follow-up with a neurologist. The choice was made to seek the opinion from the renowned Mayo Clinic in Rochester, MN. I had multiple visits during April and May of 2014 with their team including their own review of the biopsy tissue which led to a different conclusion. Taken specifically from their notes, “Presence of necrosis was noted worrisome for high grade lesion, absence of mitotic activity suggests low grade lesion. Overall glial in nature but overall, not definitive of grade and subtype of neoplasm.” It was also here where I learned the difficulty of entering into clinical trials. It was explained to me because my tumor grade and type was inconclusive, I would not qualify for a clinical trial. My follow up MRI in July 2014 revealed most likely to represent low grade glioma, less likely to represent DNET. The recommendation was surveillance and if changing to get radiation.
Time to return to Nebraska once again. I worked with hematology and oncology and maintained frequent follow up MRIs. Most reports confirmed a malignant neoplasm of the brain/low grade neoplasm. Progression was seen in an MRI dated June 2015 with further progression on the next MRI dated August 2015 with references to ‘astrocytoma or glioma nature’. The hematology/oncology physician noted that I was not a candidate for Gamma Knife Radiation and explained how different treatments are intended based on grade and type (which no one was truly able to confirm). I was then referred to radiation oncology. Radiation oncologists reviewed all my films and opinions and recommended a second biopsy which I declined. His hope was to get more tissue to get a more substantial diagnosis because all were not confident in a single diagnosis. I remember hearing physicians express that my case was not like any other they had seen. It wasn’t behaving in the expected way, and it was not clear as to what was going on. As a result, he had a colleague with the University of Nebraska Medicine review biopsy tissue prior to agreeing to treatment. Johns Hopkins also provided an interpretation to better identify which therapy would be best. Their interpretation included needing more tissue to have a definitive answer however recognized it was of a glial nature
Because of the continued growth in size, radiation was elected in an attempt to shrink the tumor. Following radiation, an MRI in June 2016 mentioned Dysembryplastic Neuroepithelial Tumor (DNET); stable gliosis and/or encephalomalacia. Does this indicate the radiation was successful? As you can imagine, navigating all these opinions was truly confusing. At the same time I was grateful for the shift to what my teams considered benign because Mayo Clinic previously deemed it less likely.
I currently maintain annual MRIs to monitor the area where it all began. Upon reflecting on this journey, I realize getting a second opinion, or in my case, many opinions, allowed me to understand the difficulty of navigating brain tumors and the need for research to explore more of these variations. I shopped around and crossed paths with many incredible physicians dedicated to ensuring I found the treatment plan that was best for my circumstance. Out of all my initial thoughts, the answers I received were; It was true, There was a brain tumor, They were sure, and It was not anything else.