When Lea Marie was in college, she started fainting. She assumed she was just tired.
Still, she went to a doctor, who diagnosed her with anxiety and put her on medication for it. For Lea, that was that.
“When you’re 22, you can’t really fathom like being sick,” the now-33-year-old told The Post. “You feel like everything is easy fix, right? So they were like, take these medications, you’re gonna feel better. And I was like, great.”
It took 10 years for her to discover the fainting and fatigue were actually caused by a tumor developing in her brain.
In that time, she moved out of the city and cultivated her data science career in San Francisco — but her health got worse. Her episodes became seizures.
One day, she was walking downtown with her 4-month-old daughter while pregnant with a second child when she started getting tunnel vision, as well as tingling in her mouth and tongue. She began sweating and felt heart palpitations — and her vision went black.
Even worse, she found herself waking up in the middle of the night to vomit.
“It was just a lot of weird stuff that was going on, it could have been like anything,” she recalled.
Uncovering the truth
As her symptoms grew, Lea knew she needed to get to the root of the problem.
“After I had my two kids, I was like, I’ve got to take control of my health,” she said. “I need to be able to be there for them. I can’t be worried [about] passing out or getting really sick.”
She didn’t have any theories about what could be happening, and just wanted more information.
“Overall I was feeling unwell, but I was also interested in better understanding my body,” she added.
The search led her to book an appointment for a whole-body MRI with Prenuvo. Her scan there found a lesion, which is an abnormal tissue, in her brain, but it wasn’t big enough to be considered an emergency. Prenuvo sent her to a neurologist, who did a second MRI, this time with contrast.
They found the same lesion and asked her to come back in three months. By then, it had grown. She was in disbelief.
“They immediately scheduled me to go see oncology and a neurosurgeon … because brain tumors can grow really quickly once they start gaining momentum,” she said.
She was diagnosed with a low-grade glioma, a slow-growing cancerous brain tumor that primarily affects children and young adults between 20 and 40 years of age.
Perhaps surprisingly, she felt relieved by the news.
“I’m so lucky that it’s not glioblastoma or a stage four brain tumor,” she said. “I’m so lucky that it’s not that, and based on how it’s been growing, it’s unlikely that it will become that.”
Grading is a way for neuropathologists to assess how aggressive a tumor is. Grades 1 and 2 are “low grade,” while 3 is a fast-growing glioma. Glioblastomas are grade 4 tumors.
Glioblastoma is the most common and most aggressive malignant brain tumor in adults. Even with treatment, glioblastoma patients live a median of 12-18 months, and only 6% survive five years or more.
In contrast, as much as 96% of patients survive low grade glioma over 5 years.
A complicated treatment plan
Right now, taking out the tumor isn’t in the cards for Lea. A vast majority (80-90%) of people with this type of cancer do opt for surgery. But in Lea’s case, the tumor is in a tricky place: the temporal lobe. This is the area behind the ears on either side of the brain.
The left side is important for language and verbal memory — recalling words, names and facts.
“If they cut the wrong part, like you won’t be able to speak anymore or you’ll [struggle to] remember things. And I’m bilingual, and so they were like, well, you could also like lose your other language,” she said. “They wanna push that off at all costs because it’s really risky.”
Lea’s case doctors are employing a “watch-and-wait” strategy. That means close and regular monitoring with MRI scans and clinical checkups.
Fortunately, Lea’s life isn’t currently being seriously affected by the tumor, and an aggressive treatment could outweigh its benefits.
There is a procedure that could be an option later, called an “awake craniotomy,” in which she would remain awake while the tumor is removed. The neurosurgeon is able to see in real time how different parts of the brain are affected. Patients have been asked to play an instrument or sing in the middle of their brain surgery to preserve their function.
For Lea, “the thought of being awake during a brain injury is really crazy and scary.” But that would be the next step, if necessary, along with chemo and radiation.
“They try to avoid that as long as possible because it’s one of those things that once you get to the bottom of all your options, you’re out of luck. And so they try and put that off as long as possible.”
For now, she’s managing her epilepsy with medication. With it “I got my life back honestly,” she said. “Since then I’ve run like multiple marathons, I’m like super active.”
Lea has a rescue medication that can help stop seizures before they become emergencies. These can be seizures that happen very close together where the person doesn’t regain consciousness or a seizure that lasts more than five minutes.
“I’m not scared to like go outside on my own,” she said. “It’s just better to know what’s going on. I feel like not knowing is part of what’s really scary.”
‘I’m just happy to be here’
Lea doesn’t hold a grudge against that first doctor who misdiagnosed her.
“I’m just happy to be here … I have two little kids and job and my husband and my dogs and my life,” she said. “It’s not it’s like their fault, you know … I feel like MRIs have gotten more and more accessible over time … medicine in general has really evolved over the past 10 years.”
She posts videos about her experience with brain cancer, traveling and her life in San Francisco. She feels it’s important to help others who might feel alone.
“It can be really lonely to be the only one to feel like you’re the only one going through it,” she said. “It’s just nice to build that community of experience. Just to have that feeling that you know somebody who at least understands some of what you’re going through.”
