Megan’s Brain Surgery Journey

Hi! I’m Megan. I am a normal 34, soon to be 35-year-old, digital health care marketer who recently found out I have a benign brain tumor located on my pituitary stalk. I need surgery to remove it so I can continue to live a normal life. Surgery and being off of work will take a huge financial toll on myself, my mom and my sister (my caregivers post-surgery). This is to help cover medical costs and living expenses during this time.

More about me: I’m a huge Swiftie, dog mom, emo girlie, vegetarian foodie. I own my own house, enjoy cooking and reading.

Full Story:

After years of struggles with unknown hormonal issues (diagnosed with PCOS but having no real symptoms) and feeling fed up with no answers, I finally begged my OB/GYN for a referral to an endocrinologist. I got in on a cancellation. The endocrinologist was certain I had a small growth on my pituitary gland due to my slightly elevated prolactin levels. She sent me on my way to get an MRI.

On the evening of March 15, 2023, after getting the MRI, I found the words “recommend further evaluation with neurologic oncology” staring back at me in my Beaumont chart. I fell to the ground in my backyard and cried, “Mom, I think I have brain cancer.”

I spent two weeks thinking I was dying. Two weeks with no answers because the endocrinologist said, “I don’t know what it is” when referencing my scan. It was two weeks before I could see a neurosurgeon. Seeing test results like this in a portal is only one major flaw of our health care system.

After the agonizing wait, my mom, sister, and I waited over an hour more in the neurosurgeon's office for answers. Finally, he came in and said, “I don’t think it’s cancer,” but said it’s likely a hypothalamic tumor called a craniopharyngioma, which is centered on my pituitary stalk, causing elevated prolactin levels. They cannot say a diagnosis for sure until it is biopsied.

To make a long story short, it has been an extremely long year and a half. The approach has been watch and wait. It might never grow. They don’t see patients like me very often because they usually have symptoms. Mine was found by accident and because I advocated for my health. Unfortunately, in the past year and a half, my tumor has shown changes and slow growth.

I am still asymptomatic, but my best bet is to have my tumor removed. The surgery is scheduled for January 29, 2025, at the University of Michigan. I am extremely fortunate that I advocated for myself and found out before I eventually would have symptoms—possibly losing my vision, having seizures, headaches…who knows. However, post-surgery I will likely have little to no pituitary function, meaning I will need key hormones replaced. Again, I am currently asymptomatic, so it’s a tough thing to swallow.

My prognosis is good, and the team at U-M is going to remove as much of the tumor as they safely can through endoscopic endonasal surgery. With the surgery, I will be out of work for probably anywhere from 6-8 weeks, as will my mom and sister who will be taking care of me in my recovery. Any donation is appreciated. Thank you!