Focusing on What Brings You Joy During Your Journey
- After surviving brain tumor surgery and becoming seizure-free, 24-year-old Ryan Simpson is channeling his diagnosis into a nationwide mountaineering mission alongside his dad to raise awareness and push himself toward a new purpose. The climbs have become a powerful way for Simpson to reconnect with his dad, who hikes alongside him.
- 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.
- Brain tumors don’t always cause noticeable symptoms, but they can significantly affect brain function and overall health. Common signs include headaches, memory loss, confusion, balance issues, vision changes, and shifts in mood or personality.
- 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.
- “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.
View this post on InstagramRead MoreSimpson was diagnosed with a cancerous brain tumor in 2024 after a series of unexplained seizures. Treatment required brain surgery, where doctors cut into his skull to remove the tumor. Through it all, he leaned heavily on his family, especially his dad — and that bond has only deepened in the months since.“A little over two years ago, my dad and I talked about doing this. He was the one who really came up with the idea,” Simpson told Alaska News Source.
“I sat there and thought, ‘What am I waiting for?’ You never know what life’s going to throw at you. I got dealt a bad hand, but I’m trying to make the best of it.”
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Today, Simpson is celebrating a major milestone: “I’ve been seizure-free, and life has just gone on as normal,” he told WKYT News. But while surgery was a critical step, his cancer journey isn’t over. Many patients require follow-up radiation to target lingering cancer cells.
In this window of relative calm, Simpson is focusing on what brings him joy, which includes mountaineering. This hobby gained added purpose after his diagnosis, and by climbing mountains across the country, he’s raised awareness of brain cancer. The effort has become an unexpected way to strengthen his relationship with his dad, who’s hiking every summit alongside him.
“The way I view it is more about spending time with my dad and my family or friends,” he said.
Now, he’s setting his sights on Alaska’s Mount Denali, North America’s tallest peak.
@fiftypeaks_withryan NUMBER THIRTY! Had to do Illinois solo without my Dad/Hiking Buddy/cameraman because he’s somewhere on a beach? wasn’t too much of a hike but after driving for 10 hours and sleeping in my car it was a nice break before driving straight home? can’t believe I’m three fifths of the way there. The best are yet to come? #livelifetothefullest #highpoint #mountains #braintumor #FYP ♬ เสียงต้นฉบับ – OH?CRAZYGIRL? – แพรรี่ขายทุกอย่างจ้า? “The big ones are the ones I’ve absolutely loved,” he said.
“You work for it, you get to the top, and you feel this immense sense of accomplishment I struggled to find anywhere else.”
His mission is simple: “I’m just trying to inspire even just one person to get out there and chase their dream.”
Understanding Glioma Diagnosis and Prognosis: What Patients Should Know
Glioma diagnosis requires a multi-layered strategy combining clinical evaluation, advanced imaging, tissue analysis, and molecular testing. Each step plays a critical role in identifying the tumor and understanding how it affects the brain.
Early Observation & Symptom Tracking
When symptoms surface, clinicians look for hallmark signs commonly associated with gliomas:
- Persistent headaches
- Seizures
- Changes in cognition or behavior
- Speech or visual impairments
- Noticeable weight loss or physical weakening
- Shifts in personality, mood, or mental function
- Sensory disruptions in hearing, smell, or sight
- Difficulty with balance or coordination
- Variations in pulse and breathing patterns
Clinical Assessment & Differential Diagnosis
The diagnostic journey begins with a thorough patient history focused on how symptoms started and evolved. Since gliomas often mimic other neurological conditions, physicians must carefully rule out stroke, infection, and autoimmune disorders in this phase.
Neurological Examination
Once initial assessments are complete, the patient undergoes a detailed neurological exam. This evaluates:
- Cranial nerve response
- Muscle strength and coordination
- Sensory awareness
- Cognitive function and alertness
From there, imaging and pathology help paint a more complete picture, guiding next steps for treatment and care.
WATCH: Selecting the Right Chemotherapy for Glioma Patients.
After initial symptoms and neurological exams raise suspicion of a brain tumor, the next crucial step is undergoing an MRI. This imaging scan allows physicians to locate and assess the mass more precisely.
“If you’re suspected of having a tumor on imaging and our neurosurgeons think that tumor can come out, they will take a piece of that tumor out first and confirm in the operating room and with our pathologists that, in fact, what they are looking at is a tumor,” explains Dr. Alexandra Miller, Director of the Neuro-Oncologist Division at NYU Langone Health, in an interview with SurvivorNet.
“And if it is, they resect it at that time. It’s not usually a two-step procedure.”
However, when the tumor’s location or a patient’s health makes traditional surgery risky, doctors may opt for a stereotactic biopsy — a less invasive method to extract a tissue sample for evaluation.
Once collected, the sample undergoes microscopic examination and molecular testing. This analysis helps determine the tumor’s grade, giving doctors insight into how aggressive it is and informing treatment strategy.
According to the National Cancer Institute:
- With treatment, the average survival rate for glioblastoma is approximately 15 months
- Without treatment, that timeline drops to less than six months
- The five-year survival rate stands at 6 percent, and even for these patients, cancer remains a lifelong condition requiring ongoing chemotherapy and radiation
While these statistics are sobering, early detection and proactive treatment can extend both life expectancy and quality of life.
WATCH: Molecular testing for glioma patients
- Grade I-II gliomas – These are considered low-grade and tend to grow slowly. “The grade one is a very indolent, benign tumor that can be cured with surgery alone,” Dr. Henry Friedman, Deputy Director of the Preston Robert Tisch Brain Tumor Center at Duke, tells SurvivorNet.
- Grade III gliomas—These are considered high-grade and tend to grow more rapidly. They are typically classified as malignant and require more aggressive treatment, which can include surgery, radiation, and chemotherapy.
- Grade IV gliomas – These are the most aggressive gliomas, which are locally aggressive and require treatment intensification. Glioblastomas are the most common grade IV glioma, “which is by far the most well-known and feared tumor in the lay population and, quite frankly, the medical population,” Dr. Friedman explains.
Inside Brain Tumor Surgery and Recovery: What Patients Can Expect
Surgery to remove a brain tumor is delicate by nature, and every movement inside the skull must balance precision with safety.
“We take off the bone overlaying the area we need to get to. We open the little envelope around the brain called the dura, and then we move through the brain tissue to get to where the tumor is to try to cut out as much as we can safely—without hurting the patient’s function or other important things like big blood vessels that can cause things like a stroke,” explains Dr. Hoang.
Following surgery, patients are closely monitored and often receive radiation to prevent tumor regrowth—particularly in cases where multiple tumors or metastatic disease are involved.
“Because many patients can have more than one brain tumor or metastasis from their cancer, it was not reasonable to think about surgery for them,” Dr. Hoang adds. “They also get radiation for those spots as well, to try to keep those tumors from growing or shrink them down.”
Treatment Advancements & the Challenge of the Blood-Brain Barrier
Chemotherapy, immunotherapy, and targeted therapies have long been effective in treating cancer throughout the body. But the brain’s natural defense — the blood-brain barrier — makes these treatments less effective when it comes to brain tumors.
This barrier is “a network of blood vessels and tissue…made up of closely spaced cells and helps keep harmful substances from reaching the brain,” according to the National Cancer Institute.
Still, Dr. Hoang notes that recent advancements in drug design are beginning to improve treatment efficacy in the brain.
Understanding Side Effects of Brain Tumor Treatment
Side effects vary depending on the tumor’s size, location, and number of lesions present.
“Radiation treatment can cause swelling in the tumor as the tumor ‘dies,’ and the surrounding tissue can also become swollen as the treatment takes effect,” Dr. Krishanthan Vigneswaran, a neurosurgeon with UT Health Houston and Memorial Hermann tells SurvivorNet.
“This swelling can cause symptoms of headache, nausea, vomiting, and neurological loss of function…Surgical resection can also induce swelling, but this is more transient.”
Tumor location often determines what symptoms emerge:
“If it’s near your movement area, movement on one side of the body can be affected. If it’s near your speech area, your speech and the way you form words and express them can be affected,” Dr. Hoang explains.
She also notes brain surgery tends to be less painful than other types — like spinal or abdominal — due to fewer nerves in the surgical area.
Recovery & Long-Term Monitoring
Simpson still receives recurring MRI scans to monitor his brain for any signs of cancer progression.
“Because of this unique quality of metastatic brain disease, an oncology team will have to monitor a patient indefinitely during remission,” Dr. Vigneswaran says.Many experts recommend joining a support group — especially one with people who’ve undergone similar procedures. Their lived experience can offer comfort and practical advice.
“Support groups can be incredibly helpful to patients and are commonly offered at major cancer centers and hospitals,” says Dr. Jennifer Moliterno, Chief of Neurosurgical Oncology at Yale Cancer Center.
Mental health professionals are also often part of the care team, helping patients manage the emotional effects of surgery, treatment, and recovery.
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.
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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