Shelby Fights Off Aggressive, Fast-Spreading Brain Tumor at UF Health

Shelby Copas, always a natural athlete, collected several trophies throughout her childhood. Her extraordinary athleticism was especially on display in softball and volleyball, earning her several college inquiries.

While Shelby was excited about receiving offers to join collegiate sports teams, she decided to attend nursing school,determined to pursue a career in nursing. Aside from her physical gifts, Shelby was an astute student who was also offered academic scholarships, even being recognized among the top five students in her graduating class after earning straight A’s during most of her high school career.

However, just one month after graduating from nursing school and preparing for board certification exams, Shelby felt herself growing increasingly tired. Focused on passing the board exams, she dismissed the relentless fatigue, attributing it to her hectic schedule and strenuous studying.

Then came the severe headaches that were so debilitating that she was unable to get out of bed. One day, her symptoms became so severe that she lost consciousness. For days, her health continued to gradually deteriorate as her legs and arms started to go numb, even causing her legs to buckle underneath her while waiting in line to check out at a local retail store.

As a nurse, Shelby was aware that ongoing headaches and lightheadedness were symptoms that required her to seek medical help. She called her primary care physician, and their response to her symptoms wasn’t urgent. It would take nearly 90 days before she could secure an appointment.

Recalling her family’s history of low blood sugar and diabetes, Shelby tried drinking orange juice. In addition to not knowing what was happening inside her body, she was anxiously awaiting news about a potential nursing internship becoming available.

Desperate, she began researching her symptoms online the week of her scheduled MRI. The term brain tumor appeared. She looked up from the computer and over at her fiancé with fear and questioned out loud, “What if it’s a brain tumor?”

During Shelby’s scheduled MRI appointment, her nerves and severe headache overwhelmed her, causing her to become so nauseous that she vomited.

“I kept thinking that I was being a hypochondriac and blowing everything out of proportion,” said Shelby, whose fiancé reassured her and believed there was “no way” she had a brain tumor.

While Shelby was undergoing an MRI scan, her mother, Aleah, sat silently in the waiting room, growing concerned about how long the process was taking. The doctor then appeared and asked Shelby’s mom to join him in the back.

“Do you see this?” the doctor asked her while pointing to the exam results of Shelby’s head. “This is what’s causing her symptoms. I’m calling the ER, and I want you to go straight there.”

After suspecting Shelby of having non-Hodgkin lymphoma, doctors ordered a biopsy just three days after the MRI. Biopsy results showed a brain tumor, specifically a glioma, which forms when glial cells grow out of control.

For several weeks, Shelby navigated life in a daze, shocked at the idea that she had been diagnosed with a Grade 4 astrocytoma, a type of glioma. Grade 4 indicates an aggressive, fast-spreading tumor.

After undergoing surgery to remove most of the tumor at a regional Florida hospital, Shelby was provided with the option to continue care with her current provider or try another second treatment elsewhere. Shelby’s aunt created a hospital binder that contained all of Shelby’s medical records and a list of helpful questions to prepare Shelby for the next steps with her new health care providers.

Through research and connecting with an associate who served as a member of the Community Advisory Board at the University of Florida Health Cancer Center, Shelby’s aunt suggested Shelby get a second opinion at UF Health.

During Shelby’s first appointment at the UF Health Neuromedicine Hospital, her entire family came to meet Serendipity Zapanta Rinonos, MD, PhD, a board-certified neurologist and scientist who specializes in neuro-oncology.

“We are devout Christians, and it was nice to know that Dr. Rinonos shared the same beliefs. We instantly connected,” Shelby said. “We were completely blown away.”

The presence of Shelby’s loved ones was a positive sign for Dr. Rinonos.

“It’s nice to see families offer ongoing support during the patient’s appointments. I like to meet with my patients and their families in the style of a therapeutic Q&A session, where we help the patients understand their treatment options, such as chemotherapy, how it works and why it’s being prescribed for them,” said Dr. Rinonos, an assistant professor in the UF Department of Neurosurgery, a member of the UF Health Cancer Center and the Preston A. Wells Jr. Center for Brain Tumor Therapy, and Principal Investigator of an independent laboratory at UF, “The Serendipity Laboratory,” dedicated to finding a cure for brain cancer.

“At every visit, we aim to meet every patient where they are. We will find a way to explain the process, enabling them to fully understand and grasp what is happening and the options available to them,” Dr. Rinonos continued. “Clinical concepts can be quite complicated and overwhelming for patients and families, especially right after learning about a diagnosis of brain cancer. We give as many details as the patient is comfortable receiving, at a personalized pace that is best for them. Answering their questions provides them with peace of mind and readiness for the next step of their journey.”

During a patient’s first appointment, their clinical care team helps orient the patient to their diagnosis and treatment options. Every patient is unique, and every diagnosis is different. UF Health’s team of experts is experienced in developing comprehensive treatment roadmaps specific to each patient. This includes specialists from various areas, including neuro-oncologists, neuropathologists, neuroradiologists, radiation oncologists, nurse practitioners, clinical coordinators and social workers.

Additionally, Shelby’s care team also suggested peer groups to help her navigate the complexities of living with an astrocytoma by connecting with other patients with the same diagnosis. She created bonds and friendships that helped her cope with the experience of living with such a dire condition.

Treatment typically involves an aggressive approach with surgery, radiation and chemotherapy. The standard of care for Grade 4 brain cancer includes an oral chemotherapy agent called temozolomide, or TMZ. This agent works against tumor cells by damaging their genes to prevent them from multiplying.

For patients who meet eligibility criteria, participating in a clinical trial could be an option. UF is actively involved in innovative, breakthrough clinical trials, many of which are designed to harness the immune system to fight against brain cancer.

There are several approaches to this. One trial uses novel UF-developed messenger RNA lipid nanoparticles to reprogram the immune system to target and attack tumors. Other trials use modified immune cells, known as CAR-T cells, to hone in on specific cells by exploiting unique proteins on the surface of tumor cells.

The UF Department of Neurosurgery truly prioritizes translational research, moving innovative ideas from the research bench to the patient’s bedside. All of this is part of the effort to improve patient outcomes and someday discover the cure for brain cancer.

“We’re with the patient all the way, at every step of their treatment journey,” Dr. Rinonos said. “Our role as physicians is to come alongside our patients by answering any questions that may arise while helping them select the course that is best for them. We inform the patient on how to both recognize and manage symptoms through this process.”

Shelby’s mother felt exactly that along the way, noting that everyone was knowledgeable about her daughter’s condition and continued to keep the family informed about the next steps.

“Following weeks of treatment, I was so excited to be back home in our small town with our supportive family and friends,” Shelby said. “Our positive experience at UF Health made it very apparent to us that this was where we needed to be.”

Today, Shelby is enrolled in the Gulf Coast College of Nursing's RN-BSN online program, an accelerated learning track designed for individuals with nursing backgrounds to earn a Bachelor of Science in Nursing.

Throughout her health journey, Shelby’s grandfather coined the term, “Jesus is in the boat,” describing how Jesus is with her in this storm. The term helped Shelby connect to the biblical story of Jesus calming the storm, which enabled her to navigate the experience while witnessing and spreading love to others.

Shelby passed her RN board certification just a few weeks after her tumor was removed. She is on track to graduate and hopes her experience brings hope to others who have had to experience the whirlwind news of a life-threatening diagnosis. Since her initial surgery, Shelby has completed her six weeks of combination therapy (radiation together with TMZ chemotherapy), in addition to 12 adjuvant chemo cycles, with flying colors.

“So far, her MRI indicates that the tumor is stable and not progressing further, which is what we consider a success,” Dr. Rinonos said. “It’s essential to acknowledge these incremental victories, celebrating the fact that the tumor did not grow. We are now in the ‘surveillance’ phase of her journey, where we get an MRI of the brain periodically, every few months, to make sure everything continues to be stable.”

With her family and faith in the boat, Shelby hopes her experience brings hope to others who have had to experience the shock that comes with a potentially fatal diagnosis.