Last February, Molly Young’s twin daughters came down with the flu. When he began to feel unwell, he wondered if he had been infected.
“I got up from my desk, feeling very dizzy and nauseous,” Young, 38, of Apple Valley, Minnesota, told .com. “Then I felt so bad that I felt like I had to go to bed.” A neighboring nurse encouraged Young to go to the emergency room and she soon learned why she was so sick. He had a brain tumor that had caused a partial seizure, which caused his symptoms.
“No one thinks, ‘Oh, maybe I’m walking around with a brain tumor when you don’t have any other symptoms,'” he said. “That’s part of what makes it a surprise to receive the diagnosis.”
An unexpected diagnosis
In late February, Young’s twin daughters had the flu, so she worked from home in the mornings. When her husband arrived for the afternoon shift, she asked him to help put the girls to bed. As soon as he got up, he felt bad.
“I went to the bathroom to lie on the floor next to the toilet in case I was nauseous and vomited,” he said. “He came in to check on me once he put the girls down, and I told him, ‘I don’t know, something doesn’t feel right. I don’t feel good.'”
Young wondered what could happen, but figured if her daughters had the flu, she probably did too. When the wave of nausea passed, he went to bed, but he still felt sick. Her husband asked a neighboring nurse to examine her.
“I explained to him what was happening and he told me: ‘It’s not normal. If I were you, I would go to the emergency room,'” he said. “He said, ‘Your lungs sound fine. You don’t have much congestion. I don’t think it’s the flu.'”
Young went to the emergency room and staff began performing neurological evaluations. A few months earlier, Young’s father had been diagnosed with stage 4 melanoma that had spread to the brain. Young knew he was undergoing the same tests he was.
“I realized right away how serious it was from the neurological evaluations,” Young said.
Doctors ordered an MRI, which explained what had happened to Young.
“The doctors said, ‘We think what you experienced earlier was a focal seizure,'” he said. “You have a mass on your brain. It measures 4 centimeters by 4 centimeters, and we are going to send you to neurosurgery.”
Young felt dazed. Her family had recently had to deal with her father’s cancer, and now she had one on her brain.
“It felt like you were getting hit over and over again with these big health events,” he said. “But it also reassures me to see that my father had a craniotomy to remove brain cancer. (…) At least you are aware that the operation can go well.”
While his father underwent successful treatment for his melanoma, Young needed to decide on his own treatment. He consulted two neurosurgeons and “they both told me pretty much the same thing,” he recalled. Her tumor was a “slow-growing” grade 2 oligodendroglioma and brain surgery offered a promising prospect for her.
“The best option would be to remove as much of the tumor as possible (…) without causing damage,” he said. “They explained all the advantages and all the risks, which is obviously scary when it comes to your life.”
Despite knowing the risks of brain surgery, which can include disability or even death, Young understood he needed it.
“It’s pretty obvious that I couldn’t go on with my life having seizures on and off and let the cancer continue to grow in the brain and cause more neurological effects,” he said.
A month after doctors detected the tumor, Young underwent surgery in March. The wait was agonizing.
“All your fears come out, all the stress, all the anxiety,” he confessed. “I want my life. I want to spend time with my children. I want my daughters to spend time with me, and facing that fear is a mental whirlwind. Writing goodbye notes to my children before surgery is something I wouldn’t wish on anyone.”
Even on the day of the operation, Young was worried.
“When you’re pre-op, your heart races,” he said. “I’m literally putting my life in the hands of these doctors.”
Doctors used Medtronic’s StealthStation Navigation to map Young’s brain during the procedure. This helped them remove 95% of the tumor, he explained.
“They left part of it because it was too close to the motor cortex and they didn’t want to risk having mobility problems,” he said. “I never thought I’d be like, ‘Oh, I’m grateful that the doctors left cancer in my body.’ But I’m literally so grateful that the doctors left cancer in my body because I’ve been able to live a relatively normal life again.”
Oligodendroglioma
Oligodendroglioma is a brain tumor that affects the cells that support nerves in the brain, said Dr. Todd Thompson.
“When people think about brain cancer, they think about the nerves in the brain, but most of the cells in the brain are the cells that support the nerves,” neurosurgeon and Medtronic senior director of medical safety told .com. that he did not treat Young. “Oligodendrocytes are a type of cell that supports nerves.”
About 1,131 people are diagnosed with oligodendroglioma annually in the United States, according to the National Cancer Institute (NCI). Thompson calls them “rare, but more common than we would like.” It is not a cancer that is considered to have “a genetic component,” and experts are not sure why it occurs.
“I don’t want to trivialize it,” Thompson explained. “It is, to some extent, bad luck. Cells have very complex programming and sometimes that programming goes awry.”
Most patients, about 60%, according to the NCI, experience a seizure before diagnosis. Thompson said signs of oligodendroglioma include:
- Weakness.
- Numbness.
- Difficulty speaking.
- Seizures.
- Headaches.
- Vision problems.
“If you have symptoms, it’s always good to get evaluated,” Thompson said.
Treatment of oligodendroglioma usually includes surgery and radiation therapy, and some patients may also receive immunotherapy. Advances in neurosurgery help many patients receive a good prognosis.
“We can plan the surgery before we go into the operating room,” he said. “(During surgery) we have this road map that can guide us to the tumor and it’s equally important to stay away from those important parts of the brain that we don’t want to disrupt or injure.”
“I learned to be grateful”
Just 48 hours after the operation, Young left the hospital to stay with his parents and “recover in relative calm,” he said. Her husband and mother-in-law took care of their three children at home. Young realized he was experiencing terrible brain fog while recovering from the operation.
“You still feel normal, but then you can’t find your keys. You can’t find your sunglasses. You leave the TV on all night,” he said. “I didn’t do these things before the operation.”
Worried that brain fog would affect her ability to work as a financial director, she began speech and occupational therapy.
“Speech therapy focused more on executive functioning,” he explained. “It gave me a lot of skills to be able to get back to my job.”
As time went on, Young experienced less brain fog.
“I am very grateful that I advocated for myself to get medical referrals, because it is difficult when you are faced with your own failures, especially when you are a person who is used to being very competent and very effective,” she said. “It probably took me two months to feel like my functioning was acceptable again.”
Young is on a “watch and wait protocol,” in which he undergoes regular scans to make sure the tumor is not growing. If it occurs, doctors will reconsider your treatment plan.
Treatment for a brain tumor has helped Young appreciate life more.
“I learned to be grateful in a way that I don’t think you can experience until you go through something terrible,” she said. “These things that once seemed like burdens to me, suddenly it’s a gift that I can do this.”
Having a cancer diagnosis or facing difficult challenges can be isolating, and Young hopes her story will help others who feel alone.
“If my story can provide some peace to someone going through a cancer diagnosis (…) that’s a great reason to share it,” he said.
