23-Year-Old Actress & Brain Cancer Advocate Exudes Gratitude While Living With Inoperable Glioma, 10 Years After Her Diagnosis

Now, 23, Wethor considers herself extremely lucky and has used her diagnosis to spread awareness and inspire others as best she can.

She captioned her anniversary post, featuring a photo of her blowing out a candle and another of a tattoo reading “Lucky” on her wrist, “10 years ago I was told I was going to die. I was sent home with an untreatable brain tumor and told to ‘make memories.’

“Unknown why to doctors, the tumor stayed stable and I fought day after day, often looking forward to ten years as my goal.”

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Wethor continued, “As I approached the ten-year date, I expected relief, a feeling I had been counting down to for over 3000 days. But the truth was, I realized I would wake up exactly the same- still aware of the things I had witnessed in this community. For years, social workers had been asking me if I was ‘afraid of dying.’ I recently realized that is the wrong question. Really what I should have been asked was if I was afraid of living…

“Living with this reality and wondering how long I and others could live under that stress and unknown. As I neared my goal of 10 years, I realized my next goal was much scarier: living the rest of my life- an indefinite, uncountable number of years. Working in legislation and hearing thousands of families’ stories, I’ve learned that even when the check-in calls and flowers from neighbors stop, living with this reality for the family never does; whether it means living their lives as bereaved parents/siblings or becoming caregivers. For the past 10 years, I have lived within an ever-changing and devastating, yet extremely hopeful community- which has been exhausting and exhilarating.”

Wethor, who spoke out about her life-changing diagnosis on a TED Talk titled, “The Day That Changed My Life Forever,” concluded, “I have witnessed a spark of hope that continues to grow as new ideas in research begin to take shape. I feel honored to live in the middle of what we truly believe is history being made.

“And even while mourning the life I didn’t get to live, I feel grateful for the world my eyes have been opened to- and to say that looking backwards, with the cards I was dealt, I wouldn’t change a single decision I made. Thank you to my doctors, peers, and family who have supported me these past ten years. Here is to an indefinite, uncountable number of many, many more.”

Speaking to People in a recent interview, Wethor, who strives to stay healthy to manage the symptoms of the tumor, which include headaches, revealed her doctors still are unable to understand why she has survived for so long.

“I still have my tumor, but miraculously, it has not grown,” she said.

“It’s not always perfect, but I’ve found ways to work with my body rather than against it. Most days, I’m able to live a full and relatively normal life … I don’t assume I have time,” Wethor added.

She also admitted, “I try to live every day as an adventure, because no one is guaranteed any amount of time, brain tumor or no brain tumor, and this experience has made that impossible to ignore.”

Wethor has done so much since her diagnosis and her story is incredibly motivational for others living with an incurable disease.

Her website describes her as “an award-winning actress, director, bestselling author, & brain cancer legislation advocate,” who spoke at the United Nations at age 17, and also released her first docu-series by the age of 18.

In addition to being honored with a United Nations Global Impact Award last year, and writing another book called Seven Thompson & the Art of Remembering, Wethor dedicates her free time as brain cancer and pediatric health legislation advocate.

“She hopes to use film to tell unseen stories and show other young people that they can pursue their dreams despite their circumstances or illness,” her website reads.

Understanding Brain Tumors

It’s helpful to understand that brain tumors account for 85-90% of all primary central nervous system (CNS) tumors, according to the American Society of Clinical Oncology (ASCO).

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.

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.

Glioblastoma Risk Factors and Symptoms

Glioblastoma risk factors can include:

• Prior radiation exposure
• Gender: men are more likely to get glioblastoma than women
• Age: people 50 years or older
• Certain genetic syndromes, including neurofibromatosis, tuberous sclerosis, von Hippel-Lindau disease

Common symptoms of glioblastoma can include:

• Headaches
• Seizures
• Changes in mental function, mood, or personality
• Changes in speech
• Sensory changes in hearing, smell, and sight
• Loss of balance
• Changes in your pulse and breathing rate

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

Learn more about SurvivorNet's rigorous medical review process.

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