Understanding a Brain Tumor Diagnosis
- Comedian and YouTube star Grace Helbig, 41, shared a recovery update one week after undergoing surgery to remove two brain tumors, posting a video of herself walking again.
- Helbig revealed on Oct. 12 that doctors discovered the tumors after she went to the emergency room with leg numbness; she said her surgery went as well as possible and she is preparing for radiation.
- Three years after her triple-positive breast cancer diagnosis, Helbig said doctors believe her cancer may have returned and spread to her brain.
- The specifics on Helbig’s brain tumor’s haven’t been revealed. However, we’d like to note that Dr. Alexandra Miller, Director of the Neuro-Oncologist Division at NYU Langone Health, told SurvivorNet in an earlier interview, “Glioma is a broad term that refers to a whole range of different types of primary brain tumors. So, they’re tumors that originate in the brain and very rarely spread outside the brain to other parts of the body.”
- If you or a loved one has been diagnosed with a brain tumor, talk with your care team about treatment decisions. SurvivorNet’s AI-powered tool, My Health Questions, can also help you better understand your diagnosis, explore potential treatment options, and prepare important questions for your next appointment.
“Happy one week anniversary to my brain surgery. Things are going great! I’m a wobbly wandering woman again,” Helbig wrote alongside the video. “Oh here I come! I posted a longer update on my YT [YouTube] channel – link in the bio! I love humans and I love science!”
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Speaking on camera in her YouTube video, from “beyond the sea of pillows,” Helbig said the surgery “went as well as it possibly could” given the circumstances. She described her current state as a mix of medication, relief and disbelief.
“It’s obviously some oxycodone obviously, but also just quiet, calm relief maybe,” she said. “Also a little bit of obvious shock, total shock, maybe more shock than I know what to do with.”
Helbig said this round felt very different from her first cancer experience. “When I first went through breast cancer treatment, it felt so drawn out. It was like six months of just like continuously harder, harder, harder,” she recalled of a conversation with her husband, Elliott Morgan. “And this was so compacted in its intensity.”
Expert Resources for Patients With a Brain Tumor
- How a Brain Tumor Board Guides Treatment Decisions After Surgery
- Mental Health Matters: Depression, Anxiety, And Finding Hope After A Brain Tumor Diagnosis
- Novel Brain Cancer Treatment: Tumor Treating Fields (Optune Gio): What, How, Who, Why?
- The Difficulty of Treating Brain Tumors and the Emergence of Targeted Therapy
- Why a Second Opinion at a Brain Tumor Center Can Make All the Difference
She joked that she was sent home sooner than she expected. “They operated on me and then the next day or two they were like, you’re ready to go home. And I was like, huh? No, no. I’d like to stay here, please, where it’s safe,” she said.
As for what comes next, Helbig said she will undergo radiation.
“I’m going to continue healing. We’re taking everything day by day,” she said. “Everything seems really like great right now.”
Helbig’s Gratitude & Perspective
Helbig also used part of the video to thank the people who cared for her, explaining, “The remarkable humanness of caretakers and nurses just like has blown me away. The care I got was unbelievable. Everyone deserves that kind of care.”
She also gave a shoutout to her younger brother, Tim, calling him “one of the most amazing people I have ever been privileged to know.” Her whole family traveled to be with her, a journey she said she will share more about on her podcast.
The experience, Helbig said, has sharpened her sense of what matters. “It reduces all the noise,” she explained. “You can so quickly and simply prioritize the things that truly deeply matter to you.”
“Connection and love being, you know, it,” she added. “The ability to support and see each other is a superpower that I think we should all be wielding as best we can.”
Helbig and longtime collaborator Mamrie Hart had been on the road with a live comedy tour based on This Might Get Weird, the podcast they have co-hosted since 2018.
Following her diagnosis, the pair postponed the remaining 2026 dates to spring 2027. Helbig admitted the pause was jarring, since “we were in such a groove with it,” but said it has given her an unexpected fall at home.
She also marked Breast Cancer Awareness Month by urging viewers to get their mammograms: “You gotta advocate for yourself.”
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Making Sense of a Brain Tumor Diagnosis
According to the American Society of Clinical Oncology (ASCO), brain tumors account for 85-90% of all primary central nervous system (CNS) tumors. They can either be cancerous (malignant) or non-cancerous (benign), and depending on where the tumor forms in the brain, doctors determine its type, potential symptoms, and potential treatment.
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Signs and Symptoms of Brain Tumors
Brain tumors impact a person’s brain function and overall health, depending on their size, type, and location within the brain. Tumors that grow big enough and disrupt normal central nervous system functioning can press on nearby nerves, blood vessels, or other tissues. The disrupted central nervous system can present in various ways, making walking or maintaining balance difficult.
However, it’s important to know that brain tumors do not always cause symptoms.
Other signs of brain tumors may include:
- Headaches
- Difficulty speaking or thinking
- Weakness
- Behavioral changes
- Vision changes
- Seizures
- Loss of hearing
- Confusion
- Memory loss
Types of Cancerous and Non-Cancerous Brain Tumors
A brain tumor can affect you differently depending on its location and if it is cancerous. Some brain tumors are non-cancerous (or benign). According to the National Cancer Institute, some examples of these types of brain tumors include:
- Chordomas are primarily benign and slow-growing and are often found near the tailbone or where the spine meets the skull.
- Craniopharyngiomas are rare, slow-growing tumors that don’t spread to other parts of the brain or body. They form near the pituitary gland, near the base of the brain.
- Gangliocytomas are rare tumors of the central nervous system that tend to form on the temporal lobe (the left or right side of the brain).
- Glomus jugulare is a rare and slow-growing tumor.
- Meningiomas are rare brain tumors that usually form on the outer layer of tissue that covers the brain (dura mater).
- Pineocytomas are rare and slow-growing tumors located in the pineal gland near the middle of the brain.
- Pituitary adenomas are slow-growing brain tumors of the anterior pituitary located in the lower part of the brain.
- Schwannomas are rare tumors that grow on the cells that protect nerve cells. They are called Schwann cells.
- Acoustic neuromas (vestibular schwannoma) are slow-growing tumors that develop from the nerves that help balance and hearing.
Other brain tumors are malignant or cancerous. These kinds of tumors include:
- Gliomas are the most common form of cancerous and aggressive primary brain tumors.
- Astrocytoma (glioma) forms in astrocytes (star-shaped cells). Depending on how aggressive or fast they grow and impact brain tissue, these tumors are classified into four grades.
- Ependymomas are tumors classified into three grades depending on how aggressive or fast they grow.
- Oligodendroglioma tumors are classified into grades depending on their growth speed. Grade 2 oligodendroglioma tumors are slow-growing and can invade nearby tissue, but they may not present symptoms for many years before detection. Meanwhile, grade 3 oligodendroglioma tumors proliferate.
- Medulloblastoma tumors are classified into four different grades depending on their aggressive nature or how quickly they grow.
- Glioblastoma, which is considered a central nervous system (CNS) tumor, is the most common and aggressive brain tumor in adults.
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How Genetic Testing Can Make a Difference In Your Brain Tumor 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.
Coping with a Brain Tumor: Managing the Emotional and Psychological Impact
Beyond the medical aspects of facing a glioma diagnosis, many patients also find themselves struggling with the emotional and psychological challenges a cancer diagnosis can, and often does, bring. It’s natural to experience feelings of anxiety, sadness, or uncertainty.
Because glioma treatment can also cause neurological, cognitive, and behavioral changes that affect daily life, acknowledging these challenges and working with your treatment team to find the right sort of support can help you improve your overall wellbeing.
“It’s very individual, related to a person’s personality, their situation, what’s happening in their life, how they react,” Dr. Howard Colman, a neuro-oncologist at the Huntsman Cancer Institute in Salt Lake City, Utah, previously told SurvivorNet. “And so the appropriate responses and management has to be very individualized to that patient.”
Coping with Glioma: Managing the Emotional and Psychological Impact
After receiving brain tumor diagnosis, it’s common to experience a flood of emotions — shock, disbelief, fear, sadness, or even frustration. You may feel a sense of loss or worry about how the condition will affect your daily life. At the same time, your loved ones may also be struggling as they take on new caregiving roles and provide emotional support.
“Even the lower grade tumors where the treatment is just surgery and observation, it obviously creates a lot pf psychological stress related to the diagnosis and the process of getting the final answer of what it is,” Dr. Colman explained.
Feelings of depression and anxiety are particularly common. Many patients grieve changes to their independence, cognitive abilities, or physical function — but it’s important to recognize that there are support tools available.
Finding the Right Support
“In specialty brain tumor clinics, we generally have social workers, neuropsychologists, case managers, other people who are specialized in dealing with these particular issues — not just cancer patients in general, but with brain tumor patients specifically. And there are very unique challenges for brain tumor patients,” Dr. Colman explains.
The following professionals can help patients find the support they need during the cancer journey:
- The Medical Team (Neurologists & Oncologists): They can provide information about your condition, treatment options, and possible side effects, as well as refer you to specialists for additional support.
- Mental Health Professionals: Psychologists, psychiatrists, and counselors can offer therapy and, if needed, medication to help manage depression, anxiety, or stress.
- Social Workers & Patient Navigators: These professionals can help with financial assistance, accessing resources, and coordinating your care.
- Support Groups: Connecting with others who understand your experience can offer comfort, encouragement, and valuable coping strategies.
- Friends & Family: Your loved ones can provide emotional and practical support, helping with daily tasks and offering a listening ear when needed.
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Questions to Ask Your Doctor
If you or someone you love has been diagnosed with a brain tumor, it’s important to talk with your care team about molecular testing. SurvivorNet’s AI‑powered tool, “My Health Questions,” can also help you better understand your diagnosis, explore treatment options, and prepare meaningful questions for upcoming appointments. Here are a few to consider:
- 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?
Contributing: SurvivorNet Staff
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