Young TikTok Star Shares Glioblastoma Journey

Anna Grace Phelan died from the rare and aggressive brain cancer at 19. Photo by: Anna's Fight Facebook Page

A young woman who documented her glioblastoma diagnosis and treatment on TikTok posted one of her final messages on May 14. The post said that her brain tumor had grown and that surgery was not an option. Less than 10 days later, she died from the disease. She was 19. 

Anna Grace Phelan had been diagnosed with glioblastoma, the most aggressive and fatal type of primary brain cancer, just eight months earlier. Those who receive the diagnosis typically live 10 to 22 months. In the United States, approximately 13,000 patients are diagnosed with the disease each year.  

So, what is glioblastoma and why is it so challenging to treat? 

What is it? Glioblastoma multiforme (GBM) is the most common type of glioma, a brain cancer that develops in the central nervous system’s glial cells. Most glioblastomas are cancerous and many contain their own blood vessels, allowing them to grow quickly. Glioblastoma affects the cells found in the brain and spinal cord called astrocytes. This form of cancer most commonly develops in the frontal or temporal lobes of the brain.  

What are the signs? Chronic, unexplained headaches are especially common, as are neurological complications such as seizures and double vision. Not every headache is a symptom of brain cancer, but if a headache is out of the normal parameters for a patient or other symptoms such as personality or mood changes present themselves, it may be time to see a doctor. 

Other glioblastoma symptoms include: 

• Vomiting 

• Changes in temperament or personality 

• Difficulty speaking or responding to other peoples’ speech 

• Difficulty swallowing 

• Short-term memory loss 

• Fainting 

• Loss of appetite 

• Muscle weakness in the arms or legs 

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How is it treated? Surgery is required for both diagnosis and treatment. Pinpointing the precise location of a patient’s tumor is key, and personalized treatment is available through several techniques: 

• Awake craniotomies, laser ablation and other procedures designed to remove cancerous lesions and alleviate pressure within the skull without causing neurological damage 

• Radiation therapy, including intensity-modulated radiation therapy, proton beam therapy, photodynamic therapy and stereotactic radiosurgery, which destroys cancerous cells with targeted beams of radiation 

• Chemotherapy, including oral medications and drugs that are injected directly into the intrathecal space in the spine to minimize their effects on healthy tissues 

• Biological therapies, immunotherapies, genetic therapies and hormone therapies, as well as clinical trials 

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Who is at risk for glioblastoma? It’s hard to say. Researchers don’t know yet what causes the disease and it’s not clear if there is a genetic link. Right now, the only way to know if you’re at risk of a glioblastoma is to know the signs, including drastic changes in headaches or cognitive functions. 

What does future treatment look like? Early studies indicate that a blood test for glioblastoma could be on the horizon. There are also advances in imaging techniques that could possibly eliminate the need for biopsies. But for now, tissue is still required to test for glioblastoma, which means patients must undergo surgery. 

A new clinical trial is also offering a bit of hope. The biggest challenge neuro-oncologists and neurosurgeons face with glioblastoma is the blood-brain barrier. The barrier is a membrane that serves as a gatekeeper, regulating what can and cannot enter the brain. It prevents chemotherapy from getting into the brain or the brain tumor, offering limited ways to administer effective chemotherapy into cancerous tumors within the brain.  

Moffitt has treated the first patient in Florida on a trial testing the Sonocloud-9, a mechanism created by Carthera that temporarily disrupts the blood brain barrier to allow chemotherapy to get to the tumor cells in the brain. 

“We know that glioblastoma tumor cells are sensitive to a chemotherapy called carboplatin,” said Michael Vogelbaum, MD, PhD, program leader of the Neuro-Oncology Department and chief of Neurosurgery at Moffitt Cancer Center. “When you put glioblastoma tumor cells in a dish and add carboplatin, they’re very sensitive to it. But carboplatin cannot get into the brain, where the glioblastoma tumor cells are in our patients.”  

The procedure involves implanting a nine-emitter ultrasound device directly above the tumor’s location in the brain. When activated, the ultrasound opens a small gap in the blood-brain barrier, allowing chemotherapy to reach the tumor. While promising, the treatment is not suitable for every case of glioblastoma.