Understanding Gangliogliomas
- Niamh Rose Mulheron, a 26-year-old child care practitioner from Glasgow, Scotland, is sharing her battle with a glioma brain tumor, a disease she was diagnosed with as a teen after suffering constant headaches and extreme tiredness. She hopes by sharing her store she can help others diagnosed with brain tumors at a young age get more support.
- The specific type of brain tumor Mulheron was diagnosed with is, according to the Boston Children’s Hospital, a “low-grade tumor of mixed cell type,” which is “very rare and contains properties of both glial cells — responsible for providing the structural support of the central nervous system, and neuronal cells — the functioning component of the central nervous system.”
- Gliomas are a primary tumor of the central nervous system arising from the glial cells of the brain or spinal cord. If there is a concern that you or a loved one might have a glioma, it is important to perform a thorough workup and have an accurate diagnosis in order to tailor treatment to the patient and cancer.
- Diagnosing gliomas involves a stepwise approach that utilizes clinical assessment, imaging studies, histopathological examination, and molecular testing.
Mulheron, who was diagnosed with a ganglioglioma at age 14 and successfully underwent three surgeries, is sharing her story in hopes to raise awareness for British charity, The Brain Tumour Charity, to offer better support for patients fighting brain tumors at a young age.
“That caused a lot of damage to my eyes, I have no peripheral vision at all. That is why I have to wear glasses, but they don’t really help because of the damage the tumor has caused.”
Patient Resources for Glioma Diagnoses
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- Brain Imaging Options for Glioma: What To Expect With MRI & CT Scan
- Choosing the Right Chemotherapy: Balancing Effectiveness and Quality of Life in Glioma Treatment
- Coping with Glioma: Managing the Emotional and Psychological Impact
- Decoding Glioma Diagnosis: How Molecular Profiling Guides Treatment and Prognosis
- Glioma Surgery: What to Expect During an Awake Resection
Thankfully, doctors were successful in removing the benign tumor.
Mulheron did need to have two additional surgeries to remove part of a bone flap that was infected and a second tumor in her brian.
She further explained, “Luckily for me, after those three surgeries, I was finished.I didn’t need chemotherapy or radiotherapy. At the time, I would go for MRI scans every three months for a year, and now I get a scan once a year.
Although Mulheron is living with no peripheral vision, she’s grateful to be alive and to have the power to spread awareness for the disease, in addition to helping others diagnosed at a young age receive any support they need.
She said, “I wish support services, such as those offered by The Brain Tumour Charity, had been flagged up when I was diagnosed and when I really needed them. It would have made a massive difference to my life.
“The charity’s digital channels, especially its closed Facebook groups, provide a great place to read about other people’s experiences and connect with people who know what this type of diagnosis is like.”
“I was told there was no one or no services that could help me deal with my diagnosis so that was difficult, but then finding the charity has made a massive difference to me,” Mulheron added. “Getting to chat to others, read other people’s stories, have that support, it really does make a difference, and that is important.”
Speaking to The Brain Tumour Charity in an earlier interview Mulheron expressed her hope that the medical community can be more aware of the signs and symptoms of brain tumors, as she wished her diagnosis could have come sooner.
She told the charity, “I wish the doctors had looked more closely at what was happening to me at the time. The signs were clearly there but they were just brushed off.
“If my eyes hadn’t crossed that day then maybe it would have all gone on for even longer too. They couldn’t ignore me when that happened – but it shouldn’t have had to get to that stage before any medical tests were done.”
All About Brain Tumors
Brain tumors account for 85-90% of all primary central nervous system (CNS) tumors, according to the American Society of Clinical Oncology (ASCO). In 2025, the ASCO estimated that 24,820 adults (14,040 men and 10,780 women) in the United States would be diagnosed with primary cancerous tumors of the brain and spinal cord.
The central nervous system consists of the brain and spinal cord and acts as the main “processing center” for the body’s nervous system. The normal function of the brain and spinal cord can become difficult if there’s a tumor putting pressure on or spreading into normal tissue close by.
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There are many different types of brain and spinal cord tumors and some of which are more likely to spread into nearby parts of the brain or spinal cord than others. Slow-growing tumors may be considered benign, however, even these types of tumors can lead to serious problems.
The specific type of brain tumor Mulheron was diagnosed with is, according to the Boston Children’s Hospital, a “low-grade tumor of mixed cell type,” which is “very rare and contains properties of both glial cells — responsible for providing the structural support of the central nervous system, and neuronal cells — the functioning component of the central nervous system.”
“Gangliogliomas usually occur in the part of the brain that controls motor, sensory, and higher mental function, called the cerebrum, but can occur in any part of the brain or spinal cord,” the hospital explains.
“In rare cases, ganglioglioma may transform into a higher grade, more malignant tumor. Children with certain genetic syndromes, including neurofibromatosis 1 and tuberous sclerosis, are at higher risk of developing glial tumors, including gangliogliomas; however, most of these tumors develop spontaneously.”
Symptoms of gangliogliomas often grow slow and children have symptoms for months before being diagnosed.
Although seizures are usually the first symptom, other symptoms may be headaches, nausea, fatigue, weakness on one side of the body.
Meanwhile, symptoms of brain tumors, as a whole, are usually caused by increased pressure in the skull. This pressure can stem from tumor growth, swelling in the brain, or blockage of cerebrospinal fluid (CSF), the American Cancer Society explains.
General symptoms may include:
- Headache
- Nausea
- Vomiting
- Blurred vision
- Balance problems
- Personality or behavior changes
- Seizures
- Drowsiness or even coma
Additionally, MD Anderson Cancer Center notes that changes in the ability to smell can also be a sign of brain tumors, and, more specifically, “strange smells” can be a symptom of seizures, which can result from brain tumors.
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It’s important to note that these symptoms are not exclusive to brain tumors. Still, you should always speak with your doctor if you’re experiencing any health problems.
Meanwhile, treatment options for brain cancer depend on a variety of factors, including the size and type of the tumor as well as the grade of the tumor.
Surgery, radiation, and chemotherapy are options doctors use to treat brain tumors. Cancer warriors are encouraged to talk to their doctor about their situation and the best treatment options.
Understanding Gliomas
There are various types of brain cancers and tumors that someone may be diagnosed with, so it’s important to understand that a glioma is a tumor originating in the central nervous system (CNS), specifically in the brain or spinal cord. A glioma originates in glial cells. Glial cells are supportive cells in the brain that protect and maintain the neurons. These types of tumors can either be benign (non-cancerous) or malignant (cancerous).
“Glioma is a broad term that refers to a whole range of different types of primary brain tumors,” Dr. Alexandra Miller, Director of the Neuro-Oncologist Division at NYU Langone Health, tells SurvivorNet.
“They’re tumors that originate in the brain and very rarely spread outside the brain to other parts of the body,” Dr. Miller continued.
Glioblastoma (GBM) is the most aggressive and lethal form of primary brain tumor. Classified as a Grade 4 glioma by the World Health Organization (WHO), glioblastoma presents significant challenges for treatment due to its highly invasive nature, rapid growth, and resistance to most conventional therapies.
WATCH: Understanding Gliomas
According to the National Cancer Institute, the average survival rate is 15 months with treatment and less than six if left untreated. While there is a five-year survival rate of averaging 6 percent, those individuals will never be cancer-free. They must continue receiving radiation and chemotherapy for the rest of their lives.
Clinical trials help doctors better understand cancer and discover more effective treatment methods. They also allow patients to try a treatment before it’s approved by the U.S. Food and Drug Administration (FDA), which can potentially be life-changing.
WATCH: Clinical Trials can be Life-Saving
Within the U.S., all new drugs must go through clinical trials before the FDA approves them. Although the rewards of clinical trials can be great, they also come with risks. Talking to your doctor about this before enrolling in a trial is important.
Treatment Options for Gliomas
“The first step is always the neurosurgery. How much can you take out? Is it safe to do surgery? Do you have to rely on a biopsy? Can you even do a biopsy?” Dr. Henry Friedman, Deputy Director of the Preston Robert Tisch Brain Tumor Center at Duke, tells SurvivorNet.
WATCH: Glioma Treatment Options
The main treatment options are:
- Observation—Some benign, small, and without symptoms of gliomas or tumors located in inoperable locations can be recommended for observation.
- Surgery is often the first-line treatment for gliomas, with the goal of achieving maximal safe resection, where the largest amount of tumor is removed without causing significant neurologic deficits. For low-grade gliomas, surgery alone can sometimes be curative.
After surgery, pathologists examine the tumor tissue to understand its features and molecular makeup. This added step helps doctors outline an appropriate treatment.
“We go through a very elaborate process of diagnostics, which includes looking at it under the microscope through our pathology team,” Dr. Friedman explained to SurvivorNet.
WATCH: The Role of Surgery in Treating Gliomas
Radiation and chemotherapy are often needed after surgery because removing the tumor completely is usually not possible due to the tumor’s ability to spread into surrounding brain tissue.
- Radiation therapy uses high–energy X–rays to target and kill tumor cells. It is often used after surgery to target residual tumor cells.
- Chemotherapy – These medications kill or slow the growth of cancer cells. Chemotherapy can be used alongside radiation or following radiation and is often used in higher-grade tumors.
The Food and Drug Administration (FDA) has approved some drug treatments, including temozolomide (Temodar), to help patients with this aggressive disease. Temozolomide is a chemotherapy drug patients can take after surgery and radiation therapy.
- Targeted therapy and immunotherapy are newer treatments designed to target specific genetic mutations in the tumor or to stimulate the immune system to fight the cancer. Their role in the treatment of gliomas is continuing to evolve.
Other FDA-approved drugs for treating glioblastoma include lomustine (Gleostine), intravenous carmustine (Bicnu), carmustine wafer implants, and Avastin (bevacizumab).
Avastin is a targeted drug therapy that blocks glioblastoma cells from requesting new blood vessels that feed and allow the tumor to grow.
The FDA approved Vorasidenib, an IDH inhibitor. It works by blocking the mutated enzyme, slowing tumor growth, and extending the time before disease progression. IDH mutant gliomas tend to grow more slowly and have a better prognosis than IDH wild-type gliomas.
Dr. Alexandra Miller, Director of the Neuro-Oncology Division at NYU Langone Health, tells SurvivorNet that Vorasidenib is a “huge breakthrough for people with IDH mutant tumors.”
WATCH: Vorasidenib for IDH Mutant Gliomas
“What I tell my patients is that we have these effective treatments, but what they do is they delay the time to when this tumor comes back. Only in exceptional circumstances would we ever talk about getting rid of one of these cancers a few,” Dr. Daniel Wahl, professor of radiation and oncology at the University of Michigan, tells SurvivorNet.
Ongoing Research Offers Hope
Fortunately, research is ongoing to improve the prognosis for people battling glioblastoma. One area of promise is tumor-treating fields, which can help extend patients’ lives by two years on average, giving them hope.
Optune, the brand name for the tumor-treating field delivery device, was launched in 2011 and approved by the FDA in 2015. It is a wearable and portable device for glioblastoma treatment for adult patients aged 22 years or older.
“There’s been a very exciting development of tumor treating fields, which are electrical fields that have been applied to the brain,” Dr. Suriya Jeyapalan, a neurologist at Tufts Medical Center, previously told Survivor Net.
TTFields use low-intensity electric fields to disrupt the cell division process, making it harder for cancerous cells to multiply.
WATCH: Using electric sources to improve glioblastoma treatment.
Despite Optune’s hope, not all cancer experts agree with its approach, including Dr. Friedman.
“Although the National Comprehensive Cancer Network (NCCN) recognizes Optune within its guidelines as a therapy for glioblastoma, many people don’t believe it adds value. At Duke, for example, we don’t consider it a mainstay of therapy,” Dr. Friedman said.
Contributing: SurvivorNet Staff
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