Brain Tumors: Listen for the Signs

One day in 2018, when Natasha Tomlinson was under a lot of stress, she began hearing music in her head. “It was songs I knew,” says the 43-year-old full-time mom and resident of West Palm Beach, Fla. “All genres, from hip-hop to pop and country.” 

She realized her emotional state triggered the music. There were no other symptoms, no headaches or dizziness. Her doctor attributed it to stress. Unsatisfied, Tomlinson consulted a neurologist, who ordered an MRI. “I didn’t even make it out of the parking lot before he called me back,” she says.

A rare cancer diagnosis.

Tomlinson took the MRI results to a trusted physician she had known since she was 16. The doctor referred Tomlinson to Ricardo J. Komotar, M.D., co-director of surgical neuro-oncology at Sylvester Brain Tumor Institute (SBTI) at Sylvester Comprehensive Cancer Center, part of the University of Miami Health System.

Tomlinson had a good feeling when she met Dr. Komotar. “He was confident,” she says. That gave her confidence in him — and in Sylvester. “Anyone who is challenged with a brain tumor needs to go to Sylvester Comprehensive Cancer Center,” she says. “Brain cancer research is a top priority. This center will be a way to make people live longer and enjoy a better quality of life.”

Dr. Komotar removed a tumor the size of a golf ball from Tomlinson’s brain. After surgery, she learned she had a grade 3 anaplastic astrocytoma brain tumor, a condition diagnosed in only 1,500 people in the U.S. annually. She underwent six weeks of radiation with a low dose of chemotherapy, followed by a higher dose for a year. 

Tomlinson was relieved to learn that her cancer has no genetic component. She cannot pass it down to her children. Instead of fearing it, Tomlinson chose to confront her cancer as a speedbump. “How will you get over it?” she asks. “By knowing you are a survivor. You’re surviving today, and you’ll survive tomorrow. I am breathing. I can hear. I can see. I am alive.” 

Twitching tongue, making peace.

Kathy Maxted, 70, a sales representative from North Palm Beach, knew something was wrong in 2017 when her tongue began to twitch and stick to the roof of her mouth. “Speech was difficult,” she says, “so I went to the E.R.”

Kathy’s glioblastoma diagnosis was eerily familiar. Her father received the very same diagnosis at the same age, and he succumbed to the disease. 

 “I was freaking out because of my dad,” she says.

She underwent surgery with Dr. Komotar, who referred her to oncologist Macarena de la Fuente, M.D., chief of the neuro-oncology division at Sylvester. “I figured the best surgeon would know the best oncologist,” says Maxted. 

After surgery and radiation, Maxted joined a clinical trial of Dr. de la Fuente’s that added two blended drugs, Nivolumab and Temodar, during chemotherapy. Unfortunately, Maxted’s liver numbers began to spike, so she was pulled from that study.

Glioblastoma has no known genetic link, but there are enough patients with family members who were also diagnosed that Stanford University began tracking them in a database. Maxted, her children and her siblings have all had genetic testing as part of that study. “They are looking for patterns,” she says. “They don’t know if it’s environmental factors or a mutation or just dumb luck.”  

There is no cure for glioblastoma. “All it takes is one random cell floating around someplace. It grows tentacles. It reaches into your brain,” Maxted says but adds, “I am stable. No sign of tumor growth. I’m looking at seven years!”

Advances in surgery, moon baths.

While many questions about brain tumors have yet to be answered, tumor patients today have more hope than ever, says Dr. Komotar, “thanks to advanced surgical techniques that allow more aggressive removal of tumors safely and cutting-edge clinical trials that bring bench to bedside.” There is hope, he says, in “predictors of which glioma patients will do well and what molecular markers can be targeted.”

The new Sylvester Brain Tumor Institute is comprised of a world-class team of experts dedicated to finding a cure. It takes a multidisciplinary approach, says Dr. Komotar, because “all malignant brain tumors and many benign brain tumors require neurosurgery, neuro-oncology, radiation oncology, neuropathology, neuroradiology and neuroscience.”  

Maxted has learned to “make peace with the beast,” she says. “I have a beast in my head, a form of cancer that I have to accept so I can give up the anger or anxiety I’d feel otherwise.” She’s not in pain, and her diagnosis led to an introspection inspired by her father. “I’m not a religious person. I’m more spiritual,” she says. “When I was first diagnosed, I’d go outside when I couldn’t sleep and take a moon bath—let the moon wash over me and say, ‘OK, dad, I’m gonna get through this for both of us.'”

Louis Greenstein is a regular contributor for Sylvester Comprehensive Cancer Center.

Tags: anaplastic astrocytoma, Dr. Macarena De La Fuente, Dr. Ricardo J. Komotar, glioblastoma, Sylvester Comprehensive Cancer Center