The Millstone Times December 2020

♥ HEALTH  &  WELLNESS Deciding if and When to Have Surgery for a Spine Tumor By, Beth, Spinal Cord Tumor Survivor

Beth discovered a tumor in the center of her spinal cord and the only treatment is surgery. She shares how she found expert care, sup- port, and resources to prepare her for surgery. I am in the middle of my journey with a rare spine tumor. My tumor was discovered incidentally in 2019. I was having symptoms related to my spine – pain, stiffness and loss of mobility. An MRI revealed a tumor located in the middle of my cervical spine. Once discovered, I was referred to a neurosurgeon close to my home in Ottawa, Can- ada. There, I was diagnosed with what was likely an intramedullary spinal ependymoma and a syrinx – a fluid-filled cavity within the spinal cord. While it was not a large tumor, it was in the center of my spinal cord and the only treatment was surgery. A biopsy was not an option. My husband and I found ourselves trying to wrap our heads around this devastating news and trying to make decisions without having all the details. We did not have a definitive diagnosis and we were unsure of the stage of cancer, or how fast it was growing. In addition, as there isn’t a center that specializes in spinal neurosurgery here, we began researching our treatment options. Get Multiple Opinions

Beth with her family • Credit: NCI-CONNECT

Thankfully, my symptoms were stable giving us time to do our own research. My husband and I began exploring support groups and reading every recent published article we could find. We found support through social media, NCI-CONNECT, the CERN Foundation, and by reaching out to other patients and survivors. My neurosurgeon ordered another MRI and confirmed there was no growth in the last few months. Around this time, I began experiencing weakness in my arm. We found ourselves stuck between the “wait and see” approach and moving forward with surgery. When weighing our options, we felt paralyzed by the gravity of the decision. My neurosurgeon proposed moving ahead with the surgery right away but based on the research we had done, we felt strongly that we should get a second opinion. Even if the second opinion agreed, at least I would feel more confident in the decision. We found the Natural History study at NIH online and decided it was worth investigating further. I first met with neuro-oncologist Marta Penas-Prado, M.D., of the Neuro-Oncology Branch at the Center for Cancer Research, NCI, at NIH for an initial consultation. We discussed the ependymoma diagno- sis, the necessity of spinal surgery, and the possibility of taking a more passive approach and watching the tumor with imaging. Dr. Penas-Prado shared that central nervous system (CNS) tumors like mine eventually cause deficits, so surgery was in my future. We understood that if I could have many years with relatively normal functions without pain, it might be worth waiting, but it cannot be put off indefinitely. We discussed the benefits of having the sur- gery sooner, and the process of recovery. Dr. Penas-Prado patiently answered our long list of questions and helped us come to grips with this life-changing diagnosis. My husband and I also met with neurosurgeon John Heiss, M.D. of the National Institute of Neurological Disorders and Strokes (NINDS), at the NIH Clinical Center to discuss the surgery and options. Although my tumor is small, it is located inside my spinal cord, at the C5-C6 vertebrae, so the surgery comes with significant risks such as paralysis and other long-term deficits. We found ourselves in the tricky spot where this serious surgery is inevitable but at the moment, not an emergency.

Looking back, we are so thankful that we took control and got multiple opinions, which should be standard for people with a rare spine tumor diagnosis.

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30 The Millstone Times

December 2020