Mom, 32, Suffering From Seizures, Was Initially Told She Had Anxiety, But Later Learns She Had a 4-cm Brain Tumor – Recognizing the Signs of a Brain Tumor

The mother of one explained that it began with tingling in her arm. “It kind of felt like when you fall asleep on your arm … I literally just couldn’t move it, couldn’t control it,” she recalled.

Initially fearing a stroke, Stoksted rushed to the hospital. Tests revealed nothing unusual, and doctors suggested anxiety might be the cause. But when another episode struck—this time a grand mal seizure lasting several minutes—her husband realized the urgency.

“I was on the phone with my husband, not responding for, like, he says, five minutes,” she said.

Further testing revealed the tumor, which doctors confirmed was the source of her seizures. While Stoksted has not shared the exact type of tumor, she learned it carried a genetic mutation that made it less aggressive.

WATCH: Molecular Testing for IDH Inhibitors in Glioma Patients

Gliomas are the most common type of brain tumor in adults and often carry specific genetic mutations that play a role in how the tumor grows and spreads. One of the most important mutations found in gliomas is in the IDH (isocitrate dehydrogenase) gene. Fortunately, new treatments have emerged to allow doctors to target this specific mutation and provide better outcomes for patients.

Before doctors can decide if a patient might benefit from targeted treatments like IDH inhibitors, drugs that target the IDH mutant protein, molecular testing (advanced testing done on tumors to determine specific features) is needed to identify whether the tumor has this mutation. This testing is a crucial step toward providing personalized, more effective treatment for patients with gliomas.

She underwent surgery to remove the mass, followed by chemotherapy and radiation. Today, she continues treatment with gratitude.

“Modern medicine is the reason I’m still here—giving myself and my family a chance at living life together.”

How Genetic Testing Can Make a Difference In Your Glioma Treatment Journey

Gliomas are a type of tumor that starts in the brain. They can range from slow-growing (low-grade) to more aggressive forms.

“Nowadays, with not only brain cancers, but cancers in general, there has been a lot that’s been discovered about how different mutations in the tumor actually affect the behavior. Also, there are a number of mutations for which we have drugs that can target those mutations,” Dr. David Peereboom, an oncologist at the Cleveland Clinic Cancer Center in Ohio, tells SurvivorNet.

Biomarkers are essentially a tumor’s “fingerprints.” By studying these fingerprints, doctors can predict what treatments may be most effective and least toxic for you.

“The way to discover that [biomarker] is to do testing,” Dr. Peereboom explains. “The most helpful testing is called Next Generation Sequencing. What that does is it looks at all the DNA in the tumor, and the DNA is analyzed, and there are parts of DNA that may be abnormal or mutated.”

This testing might be performed using tissue obtained during a biopsy, surgery, or a blood test.

“There are a handful of those mutations that are called driver mutations,” Dr. Peereboom adds. “Driver mutations, as the name implies, are mutations that actually drive the behavior of the cancer. And for a handful of those, they’re actually, nowadays, there are some drugs that will target those mutations.”

How is Molecular Testing Done?

Molecular testing is typically performed on a sample of tumor tissue. This tissue is obtained from either surgery or a biopsy. Pathologists conduct the testing; these doctors are specially trained to study the characteristics of tumor tissues.

Molecular testing is widely available throughout the country, making it accessible to most patients diagnosed with gliomas.

What Types of Molecular Testing Are There?

Several molecular testing techniques are used on tissue samples. One method is antibody staining, where pathologists “stain the tumor with an antibody to look for the presence of the IDH mutant protein,”  Dr. Alexandra Miller, Director of the Neuro-Oncology Division at NYU Langone Health, explains. Tumors without the mutation will not be visible with the stain. However, tumors that have the IDH mutation will stain or show a color that pathologists can recognize. This is a very common technique pathologists use for many tumor types.

WATCH: Understanding Molecular Testing for Glioma

Another method is molecular sequencing, which Dr. Miller explains is a process where doctors examine the DNA of the tumor cells to find specific changes or mutations in the genes. Both techniques can confirm whether the IDH mutation is present in the tumor cells.

Dr. Miller tells SurvivorNet that molecular testing “should be performed on every glioma.”

By determining whether a tumor carries the IDH mutation, doctors can offer FDA-approved targeted therapies like Vorasidenib, which Dr. Miller calls a “huge breakthrough” that slows the progression of the disease. This personalized approach marks an exciting advancement in the fight against gliomas, giving patients new hope and better treatment options.

WATCH: Who Benefits From Vorasidenib?

The FDA-approved drug Vorasidenib marks a major advance for patients with IDH-mutant gliomas—especially grade 2 tumors. In the INDIGO trial, a Phase 3 clinical trial, it reduced the risk of disease progression or death by 61% and extended progression-free survival (period with stable disease) from 11.1 to 27.7 months. For many patients, that represents a life-changing difference.

Better Understanding Brain Tumors

Brain tumors can impact a person’s cognitive function and overall well-being, depending largely on the tumor’s size, type, and specific location within the brain. When large enough, tumors may interfere with the central nervous system, pressing on nearby nerves, blood vessels, or tissues. This disruption may result in difficulties with coordination, balance, or mobility.

According to the American Society of Clinical Oncology (ASCO), brain tumors make up 85–90% of all primary central nervous system (CNS) tumors. They can be benign or malignant, with treatment and symptoms varying based on tumor type and location.

“The goal is to remove as much of the tumor as we can while keeping the patient well neurologically,” Dr. Reid Thompson, Chair of Neurosurgery at Vanderbilt University Medical Center, tells SurvivorNet. In other words, to remove as much of the tumor as possible without causing harm to the patient.

Even though surgery can remove a large part of the tumor, any remaining cancer cells can continue to grow over time, leading to the tumor’s return. For this reason, surgery is often followed by other treatments, like radiation or chemotherapy, to try to eliminate any remaining cells.

WATCH: Hope for Glioblastoma Research

While some brain tumors cause noticeable symptoms, others can go unnoticed for long periods. When symptoms do occur, they might include:

• Persistent headaches
• Difficulty speaking or processing thoughts
• Muscle weakness
• Behavioral or personality changes
• Vision disturbances
• Seizures
• Hearing loss
• Confusion
• Memory issues

Treatment Options for Brain Tumors

Treatment strategies for brain cancer depend on several variables, including the tumor’s size, type, grade, and location. Doctors may recommend:

• Surgery
• Radiation therapy
• Chemotherapy

Your medical team will help guide you based on your individual diagnosis. The prognosis—or outlook—depends on:

• Tumor type and growth rate
• Tumor location in the brain
• Presence of genetic mutations or abnormalities
• Whether the entire tumor can be removed
• The patient’s overall health

Types of Brain Tumors: Cancerous and Non-Cancerous

According to the National Cancer Institute, brain tumors can vary greatly in behavior. Some common non-cancerous (benign) types include:

• Chordomas: Slow-growing, often found near the spine’s base or where it meets the skull
• Craniopharyngiomas: Develop near the pituitary gland; rare and slow-growing
• Gangliocytomas: Form in the temporal lobe and affect the central nervous system
• Glomus jugulare: Rare and slow-growing
• Meningiomas: Typically grow on the brain’s outer protective layer (dura mater)
• Pineocytomas: Arise from the pineal gland near the brain’s center
• Pituitary adenomas: Located in the pituitary gland; generally slow-growing
• Schwannomas: Originate in Schwann cells, which insulate nerve fibers
• Acoustic neuromas (vestibular schwannomas): Impact on hearing and balance nerves

Common malignant (cancerous) brain tumors include:

• Gliomas: The most frequent and aggressive form of primary brain cancer
• Astrocytomas: Derived from star-shaped brain cells, with four growth grades
• Ependymomas: Graded based on aggressiveness
• Oligodendrogliomas: Can grow slowly (Grade 2) or aggressively (Grade 3)
• Medulloblastomas: Fast-growing and often found in children
• Glioblastomas: The most common and aggressive brain tumor in adults

Understanding the Impact of a Glioblastoma Brain Tumor

Glioblastoma is a highly aggressive central nervous system tumor. As the National Cancer Institute explains, glioblastomas “grow and spread very quickly.”

WATCH: Using electric sources to improve glioblastoma treatment.

• Average survival rate: 15 months with treatment, fewer than six months without
• Five-year survival rate: ~6%; those who survive long-term continue treatment indefinitely
• Treatment challenges: Due to their cellular diversity (heterogeneity), glioblastomas are difficult to fully remove via surgery. The remaining cells rapidly grow back after surgery.

Dr. Friedman and other researchers are exploring innovative strategies like poliovirus therapy and immunotherapy to raise survival rates above 20%.

RELATED: Standard of Care Plus & The Treatment Path for High-Grade Gliomas

Risk factors for glioblastoma include:

• Prior radiation exposure
• Male gender
• Age 50+
• Genetic conditions such as neurofibromatosis, tuberous sclerosis, and von Hippel-Lindau disease

Common symptoms include:

• Headaches
• Seizures
• Mood or personality changes
• Speech difficulties
• Hearing, smell, or vision changes
• Loss of coordination or balance
• Irregular breathing or pulse

Questions to Ask Your Doctor

If you or a loved one has been diagnosed with a glioma, be sure to discuss molecular testing with your treating team. Here are some questions to ask:

• Do you need both the tissue sample and blood samples for molecular testing?
• What specific mutations will you be testing for in my tumor?
• Do I have any genetic mutation that would change the course of my treatment?
• Am I eligible to receive targeted therapy? What about immunotherapy?
• Is there a clinical trial that would be relevant for me?

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