After my initial results I was left with a lot of uncertainty. My surgeon felt pretty sure that I was in the clear, but my oncologist disagreed. At this point I sought second and third opinions. I had my cells reviewed by another pathologist who pointed out that the cell changes were suggestive of a tumor, but not conclusive.

At this point I consulted a surgeon who was well known for his work on removing tumors in language areas of the brain. He suggested I do some more advanced imaging to pinpoint my diagnosis. I flew down to San Francisco for two days to do that. After hours of imaging the results came back negative again. There was evidence that this lesion was abnormal, but not that it was a low grade glioma. For the first time a radiologist came up with the differential diagnoses of dysplasia or an MVNT.

Needless to say I took this information and read every paper I could find on these diagnoses. Dysplasia is a general term for abnormal cells in the brain. It is usually caused by faulty brain development and involves neurons. I couldn’t find much more than that. It does often cause epilepsy.

The research on MVNTs was even more intriguing. MVNTs are newly discovered tumor types that have a bubbly appearance. They look very much like my lesion on MRIs. They usually do involve neurons and can cause seizures, but they don’t continue to grow. They are called indolent.

The pathologists did not find the characteristic neurons of either of these conditions so I was left as unsure as they were. I was seriously considering surgery to remove the lesion, but the surgeon told me there was a 2% chance of permanent language deficits. The MRI results gave me pause. I had the DNA sequencing done again at UCSF and after looking for more than 100 mutations, they found nothing.

At this point it was time for my next four month MRI. I had that done and it showed no growth, and a second radiologist gave the differential diagnoses of dysplasia or MVNT. With all of this information suggesting a benign lesion, my oncologist changed his stance and agreed to just watch it with frequent MRIs. I was incredibly relieved and elated. My husband and I went home and planned a summer of fun and travel with our family.