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
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 renown 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
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
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.