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How Biomarker Testing Altered a Patient’s Course of Treatment and Family Decisions

Published on April 29, 2024 in Patient

A male Coast Guard service member stands with his wife and two young daughters next to an American flag and canon.

Stephen B. served in the U.S. Coast Guard for 20 years and was nearing retirement when he began to experience severe headaches. As part of his retirement preparations, Stephen underwent a standard medical evaluation for all retiring service members to ensure any medical issues go toward their disability once they retire. 

Because of his headaches, Stephen met with a neurologist and did an MRI. The imaging report indicated that a low-grade glioma could not be ruled out. A follow-up MRI two months later revealed the tumor had grown.

Stephen, his wife Jenny, and his two daughters, ages 8 and 9, lived in the Virgin Islands, where he had been assigned for work. As an occupational therapist, Jenny knew the importance of getting a second opinion, so they scheduled appointments with two health centers off the island. 

Following these initial appointments, the couple opted to have surgery and treatment done through the Mayo Clinic, as Jenny had extended family and friends in the area. Every time they needed to visit Minnesota, they would take two flights, totaling an eight-hour trip, to get there.

Undergoing Biomarker Testing

A male patient with a brain tumor rests in a hospital bed, head wrapped in bandages, alongside his smiling daughter following a craniotomy.

“The surgeon told us right after the craniotomy that the mass was a weird texture — firmer than what he’s used to,” Jenny explained. “He stopped the surgery, took a sample, and had it go to pathology. It came back as a glioma, so he continued the surgery and got almost all of it out. The tissue was then sent off for further testing.”

Stephen’s neuro-oncologist shared that throughout his career, he’d seen several patients with low-grade glioma pass away a year later, leaving his team stunned, while other patients with high-grade glioma live significantly longer than anticipated. He recommended additional testing called biomarker testing, which is a way for a patient’s doctor to gather as much information as possible about their tumor.

“Biomarker testing drastically changed everything,” Jenny shared. “Before the testing came back, we didn’t plan to do radiation or chemo because our neuro-oncologist thought it was low-grade. However, he sent it for testing because there are a lot of tumors that look good through imaging and initial pathology but are like a wolf in sheep’s clothing.”

Stephen’s neuro-oncologist explained that the tumor was more aggressive than what could be seen under a microscope. A brain tumor has a lot of mechanisms for brakes that can stop it from growing. One of the very important brakes in his tumor was broken — the deletion of the CDKN2A gene that encodes for two proteins that are tumor suppressors. Without this gene, that check on tumor formation is gone. 

The doctor explained, “You could go a long time, and nothing could happen, but as soon as it gets some momentum, it’s like it’s going downhill and harder to stop because it doesn’t have that important brake system.”

The biomarker testing also indicated that Stephen’s tumor did not have the characteristics of a known tumor type. In fact, the head of neuro-oncology at all three Mayo Clinic sites (Minnesota, Arizona, and Florida) said it was so rare that he had never seen it before. 

Changing Stephen’s Post-Craniotomy Treatment

After receiving their biomarker testing results, Stephen and his wife decided to move forward with radiation and chemo.
Stephen’s radiation mask

Before they received the biomarker testing results, Stephen’s neuro-oncologist intended to take a wait-and-see approach following his craniotomy. Once he received the report, their neuro-oncologist recommended six weeks of radiation and chemo and would then determine if they were going to do more chemo after that. 

Upon completion of radiation and chemo, the couple decided to continue chemo for six months at their neuro-oncologist’s suggestion.

“We were able to make decisions to do as much as we could to give us the most time and the best experience,” Jenny said. “It just feels good to know you did all you could.”

Using Her Occupational Therapy Background

“My professional background as an occupational therapist was helpful when he came out of surgery because he was having a lot of visual deficits, and his word finding was pretty bad,” Jenny shared. “It was helpful to know that his brain was swollen and, as he heals, the deficits would dissipate, so I was able to stay calm.”

A family — a man, a woman, and two young girls — stand on a rocky beach.  Biomarker testing changed how this family makes their daily and long-term decisions.

Before his diagnosis, Stephen was always busy and on the go, working on a boat or helping a friend with a construction project. Stephen couldn’t go out much while in Minnesota for radiation treatment, so he started to play video games to keep himself occupied. Watching TV or movies was difficult with his deficits, but he was able to engage in video games with limited frustration.

“Playing video games was really good at helping him with his processing and other visual and cognitive deficits,” Jenny said. “He never used to play video games, but it’s what’s really helped him through his recovery. He even started communicating in the game, which helped with his word finding.”

Stephen struggled with forgetfulness after his craniotomy, so Jenny and her co-workers decided to make him a visual schedule to help remind him of tasks and set up a medication app to prompt him to take his Keppra medication. 

Impacting Family Decisions

While Stephen’s biomarker testing results altered the course of his treatment, it also affected how the family made decisions on a personal level.

“It changed how we live our lives, as we know the tumor will come back — not an ‘if’ but a ‘when,’” Jenny shared. “We choose to make decisions daily that let us lead a happy, fulfilled life while he is here and feeling healthy.”

Learn About NBTS’s New MyTumorID Campaign

The most recent WHO Classification of Tumours emphasizes the importance of biomarker testing in the diagnosis of brain tumors, yet nearly 70% of patients with brain tumors reported not understanding what biomarker testing is in a recent survey.

With the launch of MyTumorID, the National Brain Tumor Society commits to educating patients and their care partners about the value of biomarker testing and clinical trials, empowering patients to ID their tumor, know their options, and make informed decisions about their treatment. 

Sign up to receive information about biomarker testing, clinical trials, and more, including updates, educational materials, ways to raise awareness, and future action alerts.

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