‘How I knew I had a brain tumor’: 4 survivors share their symptoms

Headaches and seizures are common brain tumor symptoms. But they can also be caused by other medical conditions.

So, how can you tell when a symptom is due to a brain tumor? And when should you see a doctor?

For more insight, we spoke with neuro-oncologist Shiao-Pei Weathers, M.D., and four survivors, who shared their first brain tumor symptoms and what led them to see a doctor.

Headache

Shelby Espinosa had had headaches in the past; doctors said they were related to back pain. But at age 22, she got a headache so severe that it caused her to stop mid-conversation.

“I had to stop talking and just hold my head,” she recalls. “It was so intense that I couldn’t think or respond. The pain would come and go, but the headache lingered for three days.”

Her back pain was gone, so she knew this was different. At the urging of her mom and then-fiancé, Shelby went to the emergency room, where she had a CT scan of her brain. Results revealed a tumor the size of a kiwi pressing against her brainstem. She had surgery to remove it, and a biopsy confirmed it was a type of brain tumor called medulloblastoma.

“Headaches that may indicate a brain tumor typically feel distinctly different from headaches you’ve had before,” says Weathers. “For example, people with chronic migraines are used to having headaches, but their headache usually feels the same each time.”

See a doctor if you have a history of headaches and suddenly have a new type of headache. Warning signs could be a headache that:

• wakes you up from sleep
• is worse in the morning
• feels worse when you’re lying flat
• causes nausea and vomiting that won’t go away

“Other potentially concerning signs could be a headache that lingers for days or weeks (especially if you rarely get headaches), or a headache that is accompanied by other symptoms, such as weakness, numbness, tingling or vision changes,” adds Weathers.

This was the case for Sean O’Brien. He was diagnosed with a brain tumor called juvenile pilocytic astrocytoma at age 20. He’d been suffering from a headache for years but didn’t find it too concerning because his family has a history of migraines and allergies. That was until the headache worsened during his sophomore year of college.

“At one point, the headache got so bad I sought out medical services on campus,” recalls Sean. “They told me I was overtired and needed to rest. Eventually, I did start to feel a little better.”

But then more symptoms arose.

He couldn’t sleep at night. And he began having blind spells where his vision would suddenly go out and return after a few moments. This started happening multiple times a day.

“I finally told my parents what was going on, and they got me to a doctor while I was home on Thanksgiving break,” says Sean. “The doctor discovered fluid buildup in my brain, and scans revealed a brain tumor.”

Seizure

Colin Clarke was playing soccer when he felt numbness on the left side of his face under his eye. Moments later, it happened again. Then he passed out.

“The next thing I know, I was on a gurney and put in an ambulance,” says Colin, who was 45 at the time. “I didn’t realize I’d had a seizure. I’d just headed the soccer ball! But I was told I had several seizures in the ambulance.”

He was later diagnosed with a grade II oligodendroglioma.

“A seizure is your body’s way of telling you something is going on medically. Sometimes it could be the hallmark of a new brain tumor that has yet to be discovered,” says Weathers. “But it doesn’t always mean a brain tumor. Any of us can seize under certain circumstances; for example, if your sodium drops low enough. Every person’s threshold to have a seizure is different.”

On two separate occasions, 39-year-old Chris Cook experienced a metallic taste in his mouth. It was subtle and sudden, and he assumed it was due to old cavities. Two weeks later, he noticed the metallic taste again while running with his dog. He began to feel faint. Then he blacked out.

“I woke up to my dog protecting me, first responders and the good Samaritans who called them to help me,” Chris recalls. “It was hard for me to comprehend what was happening, and I could not speak coherently. After a few minutes, I could think clearly, but I was unable to verbally express my thoughts until I was loaded into the ambulance.”

A neurologist diagnosed him with glioblastoma, the most aggressive type of brain tumor.

“A lot of patients think seizures are when your body stiffens all over, and you’re jerking on the ground losing consciousness because that’s what they show on TV,” says Weathers. “But seizures come in different types. It could be a flash of colored lights, stiffening and/or jerking of the face, arm and/or leg, or a period where you’re suddenly confused or unable to speak. It can also be an abnormal and typically foul smell or taste. Seizures usually present the same way each time.”

If it’s your first time having a seizure, see a doctor.

“It may not mean you have a brain tumor, but it could be indicating something else is going on in your body,” says Weathers. “The seizure is a warning sign to seek medical attention.”

Symptoms vary depending on the brain tumor's location

The type of symptom and its severity depend on where the tumor is in the brain.

Weathers classifies brain tumor symptoms into two buckets: global and focal. A global symptom is a more general symptom indicating something is growing in the brain and causing a buildup of pressure. A focal symptom tells you where the tumor likely is in the brain.

“If you have a constant headache for weeks that makes you nauseous or vomit, that’s a global symptom,” explains Weathers. “If you have anything growing in your brain, it will give you a headache if it grows large enough and starts pushing. But that doesn’t tell me exactly where it might be.”

Sometimes a brain tumor can cause a certain symptom based on where it’s growing in the brain. Depending on the location, you may have:

• difficulty speaking or understanding
• changes in vision, like a visual field cut or double vision
• weakness in the face, arm and/or leg
• numbness or tingling in the face, arm and/or leg
• hearing loss
• trouble swallowing
• slurred speech

Data suggests some symptoms are more common with certain types of brain tumors.

“It’s not a perfect correlation, but we tend to see seizures more often in patients with oligodendrogliomas than in patients with astrocytomas,” says Weathers.

Bottom line: See a doctor for new or different brain tumor symptoms

Brain tumor symptoms can be subtle, like a vision change. Or they can be more urgent, like a first-time seizure.

“Whether you visit an emergency room or make an appointment with your primary doctor may depend on the severity of your symptoms and how sick you feel,” notes Weathers. “If you have a new or different symptom that is concerning you or a family member, err on the side of caution. Brain tumor symptoms can mimic those of other medical conditions, so it’s important to see a doctor to get checked out.”

Request an appointment at MD Anderson online or call 1-877-632-6789.