Chordoma Foundation

Dorothy’s Uncommon Story: Be your own advocate

My story with a clival chordoma (skull based tumor) started 13 years ago. I began having migraines, which a Neurologist told me was probably hormone related – “lots of women get them during menstruation.” I said no, this is something new. The pills he gave me didn’t work. I asked for a brain scan, and he told me it was a waste of time. I said “it’s my time,” so he ordered the test, and 2 weeks later he told me that they spotted a small cyst.

He said it was probably nothing so they wanted me to have an MRI with contrast, and if anything is growing it would “glow.” He assured me that nothing is going to glow, as cysts show up all the time in these tests, and insisted it’s just a “waste.” Two more weeks went by, and he apologized to me. I said, “It’s glowing, isn’t it?”

Dorothy uncommon chordoma story

I couldn’t believe I had a tumor in my brain, as a single mother with two children ages 13 and 7. I was in a panic, but had to be strong for them and keep my full-time job. I did a lot of praying and crying. I was told to schedule an appointment with a neurosurgeon. I chose Dr. Carlos David at Lahey Clinic in Burlington, MA, and we proceeded with total a resection. He wanted to know how it was found because he had never seen one so small.

He explained to me that usually they are found when they are baseball sized, and interfere with vision and hearing. I said I insisted on having tests done. He said it was a good thing.

I had a transphenoidal resection (which basically means the tumor was small enough that they removed it through the sinus cavity), no head shaving or anything. I had Gamma Knife radiation in case any cells were left. It was a difficult and painful time for me and my children.

I had wonderful support from my family and friends. My daughter’s cheerleading coach was simply the best. She picked her up, and dropped her home to keep her busy, and even donated gymnastics lessons for her. I was truly blessed.

I had follow=up MRIs two times a year for the first few years, and now every two to three years. I just saw my daughter get married, and my son grow into a fine young man. I married a man five years ago who is my best friend. Life is good.

Always listen to your inner self. If you think something is wrong, don’t take no for an answer, you only get one life, and it’s your life. Take care of yourself, and be your own advocate. Your life and your family depend on it. I thought it was the end, but it was only the beginning. Never give up hope, or faith. God works miracles. If you are going through this know that you are not alone, and it’s not hopeless. God bless you.



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