I was diagnosed with my chordoma at an ER visit for a headache and shooting pain down my arm, in February of 2021. The ER doctor ordered a CT scan to evaluate my brain and head. When the results came back, the attending physician told me I had a one-in-a-million tumor — one that he had never heard of — in the base of my skull.
It’s a surreal experience hearing the provider tell you “you have a brain tumor” after giving you a migraine cocktail to treat your symptoms. I couldn’t believe that I entered the ER during a pandemic with a headache, and left with a prescription for an MRI, a referral for a neurosurgeon, and a tumor that is typically found in middle aged men.
In the weeks after my visit, I had my first of many MRIs and attempted to learn everything I could about the tumor I had never heard of before. I was grateful for the information I found on the Chordoma Foundation website before my visit with my neurosurgeon. The information I learned helped me discuss my options with my surgeon.
Since the symptoms I had in the ER were not associated with my tumor, the neurosurgeon wasn’t sure what the best option would be for me. We decided to have the tumor board discuss my case and choose the best and safest way to treat my tumor, since my MRI and CT reads had two different diagnoses. After the team met, they decided that the safest method would be a biopsy and removal surgery at the same time. The week after I met with my neurosurgeon, I met with the ENT specialist to have an evaluation for them to complete an endoscopic surgery through my nose.
I chose to have my surgery in April. My surgery took about nine and a half hours and I was in the hospital for fewer than 72 hours. I did extremely well and my neurosurgeon and ENT believe they removed the entire tumor. I was followed up closely by my neurosurgeon and ENT after my discharge. I made an appointment for 10 days after my surgery with my radiology oncologist. She reviewed the process and timeline for my treatment. After I healed from my surgery, I underwent 41 proton therapy treatments.
In November 2021, I had my first post-treatment MRI. It did not show any changes from my post-surgical removal before I had proton therapy. I do have some minor throat discomfort but it is not as frequent. I have my next MRI in February. I am currently getting MRIs every three months.
I would not have been able to get through my diagnosis without my family and friends. They have all been so supportive! I am also grateful for the group of young adults who I have connected with through social media. We are all going through our own journeys with this diagnosis, but we understand each other more than anyone else could.
I do wish there was better coordination for patients seeking care in two different hospital systems. It was a huge change going from someone who has a primary provider to someone who has a medical team in multiple hospital systems. Guidance on that would have made some transitions easier for me.
If I were to give advice to someone newly diagnosed with chordoma, it would be to limit your search for information and resources to the Chordoma Foundation, which will help make sure you are finding accurate information. The Chordoma Foundation provided me with up-to-date information, which allowed me to ask appropriate questions during my diagnosis and treatment. They provided me with a general blueprint that prepared me for the life long journey of being a chordoma survivor. It’s important for patients to do research and know your options, so that you can make knowledgeable decisions and be your own patient advocate.
We invite you to share your Uncommon Story in your own words, which can help others in our community feel more connected and prepared to take on whatever may lie ahead. And if you need help navigating any part of the chordoma diagnosis, treatment, or survivorship journey, contact our free Patient Navigation Service.