From Diagnosis to Innovation: A Brain Tumor Survivor’s Journey

In February 2021, I received a shocking diagnosis: prolactinoma, a brain tumor affecting the pituitary gland. Prior to this diagnosis, I had a relatively spotless health record as I was the one known in my family to never get sick. I do not drink or smoke or have a risky lifestyle and never have. Yet, my journey to this diagnosis began with a seemingly unrelated event in 2019 — after a bout of e-coli, my menstrual cycle became irregular and eventually ceased altogether. Despite concerns, medical professionals initially attributed this to weight gain and dietary issues.

As the pandemic struck, accessing medical care became challenging. Once restrictions eased, I sought help from my gynecologist, who discovered elevated prolactin levels. Further tests, including an MRI, confirmed the presence of a pituitary tumor (a benign brain tumor called prolactinoma — a rare disease with no cure). From his research on this, since it was such a rare disease and only one other patient had this condition in his nearly 30 years in practice, he told me that medication could manage it, but recurrence was possible. He referred me out to an endocrinologist for proper treatment.

Surprisingly, there is a disconnect among some medical professionals, as my gynecologist’s knowledge of this rare condition is not really common. Many medical professionals do not know how to spot brain tumors, and many tumors are rare. If it was not for this gynecologist’s research on this particular condition throughout the years in his practice, he would not have known to check my prolactin levels and eventually take the step to order an MRI to check for a tumor (though he mentioned early in the process that it was a very far and remote possibility it would be a tumor, but his instincts were telling him he needed to perform the last step in ordering an MRI).

I am glad he used his instincts because I now had answers, as I was likely suffering from the brain tumor for years prior to the diagnosis. Unknown to me, my prolactin levels were high and could have resulted in additional damage to my livelihood if he did not perform his due diligence. Now, I am on managed medication, and I am back to normal with my menstruation and overall general health. It took some time for the medication to do its work to get me back to optimal health, but I am grateful I am able to live a full, vibrant life. I AM BACK!!!! I AM SURVIVOR!!!!

When people look at me, they do not see a brain tumor survivor as I do everything everyone else does in their daily lives and more. I work really hard and play hard as well. So, looks can be deceiving as to what a brain tumor survivor looks like. From my brain tumor experience, I was encouraged and invited to enter a tech innovation competition. I am currently developing a tech platform using OpenAI, data science with network science to help doctors and clinicians identify brain tumors, their symptoms, and other conditions from certain prescription medications. It is not an easy feat to do this tech innovation, but I am turning my experience into something greater to prevent brain tumors from occurring where they could be avoided and improve patient safety.

TAGGED WITH: prolactinoma

Opinions expressed within this story belong solely to the author and do not reflect the views or opinions of the National Brain Tumor Society.