She Had Vision Issues. Then She Was Diagnosed With Brain Cancer

When Lynne Taylor, MD, co-director of the Alvord Brain Tumor Center at UW Medical Center, first met with Courtney Griffith, she was astonished by what she heard.

“I kept making her tell more and more of her story,” says Taylor, who’s been a neuro-oncologist for 30 years.  

For years, Courtney had experienced headaches. Then came the strange vision symptoms.

“I was at coffee with one of my very best friends and I would look to the side and then I would look back and I wouldn’t be able to see her face,” says Courtney. “Her face would be black and it would take 10 to 15 seconds for her face to reappear.”

Courtney was eventually referred to a retina specialist on Bainbridge Island, where she lives with her husband and two kids. Concerned, the retina specialist sent her to have a brain scan. The images showed a mass the size of a lime in her brain. The growing tumor was pressing on her brain and causing the vision symptoms. The specialist immediately directed Courtney to go to the emergency room at UW Medical Center – Montlake.

“When you hear this story and you understand the pressure dynamics in the brain, it’s very worrisome,” says Taylor. “That is an immediate red flag that somebody’s brain is under pressure so high that the optic nerves are being choked and this increased pressure is literally squeezing the blood out of the back of the eye and creating temporary blindness. Eventually, if the pressure gets high enough, the brain is pushed down in a process we call herniation and you have sudden death.”

After a nine-hour surgery, Anu Amin, MD, and Dan Silbergeld, MD, her neurosurgeons at UW Medical Center, were able to remove nearly all of Courtney’s tumor. But that was only the beginning of the strange new world Courtney had been thrown into. 

Courtney Griffith before going into surgery for her brain tumor © Courtsey Griffith

Brain cancer is a long-term condition

A tumor in the brain is complicated because, with nowhere else to go within your skull, it creates pressure on your brain as it grows, compressing, displacing and destroying its delicate structures and tissue. Only about 30% of brain tumors are cancerous, but benign ones, like meningiomas, can affect the brain, too.

“Patients with brain tumors have very special needs,” says Taylor. “Their tumors can strike at the heart of who they are as people, producing symptoms that affect language, memory and motor or sensory functioning.”

These symptoms can include headaches; seizures; vision or hearing loss; difficulty thinking, speaking and understanding language; balance issues; and becoming disoriented or confused. But it’s hard to make generalizations because each tumor is unique depending on the type of tumor it is and where it is growing in the brain — researchers have identified more than 120 different kinds. Unfortunately, while most brain tumors can be treated, they often return, even noncancerous ones (though these grow more slowly).

“It doesn’t mean we don’t occasionally cure some people of brain tumors, but it’s really important for our patients and families to understand that brain tumors in general tend to grow back,” says Taylor. “So our focus is on making quality of life as good as it can be for as long as possible.”

That means that treating a brain tumor isn’t just removing the mass and getting chemotherapy and radiation if it’s malignant — it likely means monitoring and treatment for the rest of your life.

A holistic treatment plan

After surgery, Courtney was diagnosed with a grade 3 astrocytoma, which is an aggressive form of brain cancer.  

“No mass in your brain is a good thing,” says Courtney. “But I just was hoping so much that she was just going to come in and say, ‘Oh, it was nothing. We got rid of it. Your hair will grow back and everything is going to be fine.’” 

Courtney didn‘t know anyone with cancer, and it took months for her to be able to say that she had brain cancer. 

“Saying it out loud meant that it was real and my life and everyone’s lives around me was forever going to be different,” she says.

Courtney and her family had moved to Bainbridge Island in 2016, and she had never heard of UW Medicine or Fred Hutch Cancer Center, nor did she know that they had come together to create a clinically integrated adult oncology program to provide diagnosis, treatment and advanced cures for cancer. 

The team providing her care at the Alvord Brain Tumor Center at UW Medical Center – Montlake included neuro-oncologists, neurosurgeons, radiation oncologists, neuropsychologists, neuroradiologists, neuropathologists, oncology and palliative care nurses, oncology dietitians and social workers, as well as nurse navigators whose job is to help patients like Courtney through the overwhelming process of brain cancer treatment.

“The thing we try to make clear to our patients when they first come to us is that we are now your brain tumor home, meaning we will help you navigate every aspect of your care,” says Taylor. “We have all of the parts of the puzzle that you would need to take good care of somebody with a tumor in their brain.”

Even after delivering the bad news, Taylor put Courtney and her family at ease.  

“Dr. Taylor was really thoughtful about explaining what the treatment was going to look like, and her prognosis was optimistic all along,” says Wes Griffith, Courtney’s husband. “Once she knew what she was dealing with, she approached it with such confidence and that inspired confidence in us that she had seen this before and she knew what the right course of action would be to give us the best possible outcome.”

One good thing was that Courtney’s tumor had a common mutation called IDH, which has been shown to be susceptible to treatment. Taylor and the rest of Courtney’s care team came up with a plan for her to start oral chemotherapy at home and travel to UW Medical Center – Northwest for 33 sessions of proton radiation under the direction of radiation oncologist Simon Lo, MD, at the Fred Hutch Proton Therapy Center, the only one of its kind in the Pacific Northwest. Proton therapy is a more precise form of radiation that could target the tumor without damaging Courtney’s healthy brain tissue. 

Another piece of good news was that last summer, after a successful clinical trial that UW Medicine participated in, the FDA approved a new drug that targets Courtney’s tumor mutation, the first of its kind. Courtney will continue getting MRI scans every three to six months, and if the tumor starts to grow back, that will be another tool to fight it with that will have significantly fewer serious side effects than radiation or chemotherapy. 

Living with no regrets

Now more than a year out from finishing chemotherapy and radiation therapy, there is no visible sign of a tumor. Courtney continues to see Dr. Taylor to make sure her quality of life is as good as it can be and to address any emotional or cognitive problems that she might be having, but she feels like a different person.  

“I am back to my normal self, I am back to working out, I have way more energy than I had previously,” Courtney says. “Wes tells me, ‘I have my wife back. I lost you for a while, and now I have my wife back.’”

Right before Courtney’s diagnosis, Wes, a lifelong car enthusiast, had started learning how to race cars. Courtney encouraged him to give it another shot, and racing has now become a family affair.  

“We all participate, we go to every race,” says Courtney. “My daughter cleans the windows and gases up the car. My son Hudson and I rotate the tires after each race. I strap Wes in, make sure his harness is tight, and then send him on his way.”  

While brain cancer is something Courtney will need to live with and monitor for the rest of her life, it’s given her a new perspective on the time she has left.  

“My new motto in life is live with no regrets,” she says. “I want my family to live with no regrets. I want them to see that, yes, the world is crazy. Yes, bad things happen, but life is precious and you don’t know when or how it can change, so whatever opportunity becomes available, take it, do it, run with it, whatever that is.”