By Steve Blanchard - May 21, 2021
A selfie changed Megan Troutwine’s life.
While vacationing in New York City in the summer of 2017, the avid runner did what almost every other tourist does – she turned the camera on her phone around and snapped a photo of herself exploring the city. But what she saw when she reviewed the photo wasn’t a happy memory of a much-needed vacation. She saw a warning sign.
“I looked at the selfie and I was like, ‘What is going on? My eyelid is drooping,’ ” she said. “That’s not normal and that looks weird.”
When she returned to her home in Hudson, Florida, she made an appointment with a neurologist, who was quick to dispense some disturbing news.
“The neurologist called me 15 minutes off the table and told me I had meningioma,” she said.
The American Brain Tumor Association describes meningiomas as benign tumors arising from the coverings of the brain and spinal cord. They represent about one-third of all primary brain tumors and occur most frequently in middle-aged women. Meningiomas usually grow inward, causing pressure on the brain or spinal cord. They also can grow outward toward the skull, causing it to thicken. Most meningiomas are noncancerous, slow-growing tumors. Some contain sacs of fluid (cysts), mineral deposits (calcifications) or tightly packed bunches of blood vessels.
After her diagnosis in August 2017, Troutwine found herself in the care of Moffitt Cancer Center, an institution near and dear to her since she has participated in Miles for Moffitt on Team Fighter. Her care team told her that the tumor was benign, but very aggressive.
Less than a month later she underwent surgery to remove as much of the tumor as possible.
“After surgery I had about 30 rounds of radiation,” Troutwine said. “Everything seemed OK and it looked like things were working.”
But there were signs that the tumor was growing again, so in March 2018 she underwent her second surgery. Since then, what remains of the tumor appears to be dormant.
“I was told that it’s kind of frozen, so I come into Moffitt for regular scans so we can constantly monitor that,” Troutwine said.
During her time at Moffitt, Troutwine learned that she is a genetic carrier of the PTEN gene mutation, which means she is at a higher risk for other cancers, as well. In December 2020, she had a double mastectomy as a preventive measure against breast cancer.
According to Dr. Xia Wang, a clinical geneticist at Moffitt, Troutwine’s condition is more commonly called Cowden Syndrome, which is a rare genetic cancer and tumor syndrome.
"Starting at a very young age, there is an increased chance of developing various types of benign tumors in different organs in a person with Cowden Syndrome."- Dr. Xia Wang, clinical geneticist at Moffitt Cancer Center
“Starting at a very young age, there is an increased chance of developing various types of benign tumors in different organs in a person with Cowden Syndrome,” Wang said. “The chance of cancer is increased, as well.”
Wang said vascular malformation is a risk with this syndrome but added that a meningioma like Troutwine’s is not a common feature.
Through it all, Troutwine remains positive.
“I’m kind of a medical mess,” laughed Troutwine, 30. “My genetics are kind of messy but now I seem to be doing OK and I get monitored at Moffitt in several clinics. I visit every three months and make a day of it at the cancer center.”
Other than the neuro clinic, Troutwine spends time with specialists in skin, breast, GYN and endocrine cancer.
Interestingly, while Troutwine is monitored and treated at Moffitt, she does not have cancer. Her tumor, however, is closely related to cancer, which is why the neurological team at Moffitt stepped in. She admits her diagnosis can be confusing, especially to those who have a traditional cancer diagnosis.
“Never once have I heard that my tumor was malignant,” Troutwine said. “When I share that I get positive and negative feedback because it’s difficult to understand. What I want by telling my story is to create hope for the rare birds like me. I know I’m not the only patient at Moffitt dealing with something outside of the box as far as diagnoses go.”
Moffitt neuro-oncologist Dr. Sepideh Mokhtari said that from a meningioma standpoint, Troutwine is doing well.
“She has been stable for a long time and has a good prognosis,” Mokhtari said. “But it is important that we continue monitoring the situation. Even low-grade tumors can cause a lot of neurologic issues.”
Troutwine said her church family and her faith have kept her optimistic about her treatment and that she’s looking forward to running at Miles for Moffitt this year if she is able.
“I am grateful for what I am able to do and I’ve learned not to put too much pressure on myself,” Troutwine said.