Sharing My Prolactinoma Story So Others Don’t Feel Alone

I never expected to find myself here, sharing my brain tumor story. I was just trying to become a runner — doing short loops around my neighborhood, hoping to eventually build up to a 5K. Then life took a sharp turn in July 2024.

It all started last summer after brunch. I came home with what I thought was just a bad headache, but within hours, it turned into a blinding migraine that forced me into a darkened room for nearly a week. I couldn’t be on the phone, couldn’t talk, couldn’t function. I kept telling myself it would pass, but eventually I gave in and booked a telehealth appointment.

The doctor on the screen was kind but firm: “You need an MRI.”

I remember pushing back. Was she sure? But she didn’t waver. Two weeks later, after insurance hurdles and waiting, I had the scan. That MRI turned into a second MRI, and then the words that would change everything: pituitary macroadenoma.

At first, I froze. When you hear “brain tumor,” the only thought that comes rushing in is, “Am I going to die?” My husband, Bernard, had to talk me down. He reminded me that it was noncancerous, that it wasn’t an automatic death sentence. Still, fear doesn’t leave quickly.

Finding an Endocrinologist

Once the shock wore off, I shifted into problem-solving mode: find an endocrinologist, talk to a neurologist, maybe even a neurosurgeon. The first neurosurgeon I saw brushed me off, suggesting it might not even be a tumor at all — it might be a congenital defect. I left that appointment discouraged.

Eventually, I found the right fit in an endocrinologist. She listened. She explained. She tested. That’s when I learned my tumor was a prolactinoma, meaning it was causing excess prolactin and throwing my hormones off. Looking back, the signs had been there — irregular periods, breast pain, even unexplained milk production — but I never connected them to a brain tumor.

The treatment plan was medication called cabergoline. I started it in November, just weeks before my wedding on December 8. I was nervous about side effects. Reddit forums had me spiraling with stories of hormone swings and personality changes, but other patients shared encouraging experiences. I decided to go for it.

The wedding was beautiful, and everything went smoothly. My husband and I could finally exhale, even if only for a moment.

Losing My Job

Since then, the medication has helped. My cycles have returned to normal. The breast symptoms have lessened. At my last appointment, my endocrinologist was optimistic about how my body is responding. Still, there have been setbacks. I was supposed to get more testing done in February, but right around then, I lost my job in the U.S. Department of Housing and Urban Development, and with it, my insurance.

The timing was brutal. Suddenly, I was juggling tumor treatment, a new marriage, and the stress of figuring out health coverage not just for myself, but also for my husband and stepdaughter. Calls to HR and the insurance company went nowhere for weeks. We finally learned I had 31 days of coverage after my termination, but by then it felt like walking a tightrope, trying not to schedule expensive tests until we knew for sure what would be covered. Thankfully, my husband soon started a new job with benefits, and we’ve been able to shift over to his plan. But those weeks of uncertainty were some of the hardest I’ve faced.

In the midst of all this, I’ve leaned heavily on my support system. My husband has been in the trenches with me, steady and patient as I cycle through every possible emotion. My mom — my best friend — and my grandmother listen whenever I need to talk. As well as the very few close friends that I slowly but surely opened up to about my diagnosis. All of them helped me stay positive because it’s very easy to fall into a depression when you get a diagnosis like this.

A few close friends have also been there. At work, I eventually told my manager, since the migraines and appointments were impossible to hide. Her immediate response — “You’re good, don’t worry about it” — was a relief.

Still, I kept my circle small. For a long time, I carried feelings of shame I couldn’t quite explain. It wasn’t embarrassment exactly, but I didn’t want people to see me differently or treat me with pity. I even worried about posting photos from events if they showed the word survivor on my shirt.

DFW Brain Tumor Walk & Race

That’s why the DFW Brain Tumor Walk & Race was such a turning point for me.

A former colleague had registered our office team to honor a former coworker who lost a child to brain cancer. She didn’t know at the time that she was also signing me up to run for myself. I registered my husband and my best work friend, who’s also one of my closest personal friends, and we showed up on race day.

When I checked in, they handed me two shirts. One was for participants, the other marked me as a survivor. I wasn’t expecting it. At first, I covered the word with my race number, nervous about how people might react. But being surrounded by other survivors and the energy of the event washed away the part of me that wanted to hide myself. Then something extraordinary happened.

Before the race started, an older gentleman approached me after noticing my survivor shirt. He asked if I was a Christian, and when I said yes, he shared his story: his daughter had been given 15 months to live, 14 years ago. She was there at the event with him, still living. He pressed a small prayer cross into my hand. Then he turned to my husband and handed him a prayer stone, reminding him that caregivers need strength too.

It was such a simple act of kindness, but it overwhelmed me. Of all the people he could have spoken to, he came to us. We call him our angel.

That race day turned out to be full of surprises. Despite feeling like I was dragging, I ended up winning the survivor category. 

Looking Ahead

I still have a long road ahead. My endocrinologist’s plan is at least a year of medication before we even think about pregnancy, which is hard as a newlywed. With the prolactinoma, it would be hard to get pregnant already, and my endocrinologist doesn’t want me to get pregnant while on cabergoline. 

And sometimes, I still wrestle with guilt, wondering if my tumor is “serious enough” compared to others’. But I’m learning that every diagnosis matters, every story matters, and that hiding mine doesn’t help anyone.

That’s why I’m sharing this now. Because someone out there might be searching their symptoms on Google, just like I once did. Someone might be putting off an MRI. Someone might be scared to speak up about what they’re feeling. If reading my story helps even one person take the next step toward getting answers, then it’s worth it.

TAGGED WITH: prolactinoma, pituitary tumor

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