When cancer reached my brain: the story of a journalist who decided to continue telling her life story

My name is Iara Mantinan Bua . I'm a journalist, and my story changed completely ten years ago when I was diagnosed with an ultra-rare sarcoma (extraskeletal myxoid chondrosarcoma) that only affects 1 in 1 million people.

I was 30 years old and in the prime of my life. I was a journalist in a conflict zone and constantly traveling. I remember that, at the time, I was in Egypt reporting on the overthrow of the Muslim Brotherhood and the rise to power of the new military president, Abdel Fattah el-Sisi. It was then that I noticed a hard lump on my right leg. That changed everything.

Suddenly, the diagnosis arrived, and with it, the bad news: an ultra-rare disease with no treatment. From that moment on, ten long years began: I had to close my house, leave my job, return to La Coruña—a city in northwestern Spain—and reinvent myself. I began a new life tied to hospitals throughout Spain, trying all kinds of experimental treatments, without any scientific evidence, because there were no studies or therapies for my disease.

And so ten years passed, keeping me alive… myself.

How did I do it?

I never thought that choosing a career in journalism could one day save my life.

With my reporting tools, I documented every step I took. I founded a national association called ASARGA . I helped other patients. I began attending conferences, meeting the best doctors in the world, surrounding myself with experts, and creating a community that helped more than 200 families who were like me: lost, without treatment, without hope. Rare diseases lack funding or research. Many don't even have any therapeutic options.

My goal was very clear: that the next Iara would have it easier.

Until, at the end of December 2024, everything changed.

I was at home and started coughing up blood. At first, I thought it was a small vein that had burst from coughing so much. We rushed to the hospital. They locked my brother, my boyfriend, and me in a room and told us I was having a pulmonary hemorrhage.

"What does that mean?" I asked.

—It means that if we don't cut it, you could die today.

Suddenly, my blood ran cold.

Had he been living with cancer for ten years only to die in a few hours?

They told me I needed emergency surgery. It was three in the morning. They took me to the intensive care unit and gave me an anxiolytic. My family started arriving. And I, sleepy, stared at the red hours in the operating room. The operation was scheduled for eight in the morning. I tried to relax and sleep, but with that looming fear of going into the operating room and never coming out again.

The operation went well. They stopped the bleeding, and ten days later, I was discharged. Once again, I had seen death up close. And once again, I managed to stave it off.

And so we continued, with new treatments and new hopes for life. Thinking it was just another setback, like so many others. That we just had to buy ourselves time. That it was 2025, that new RNA therapies for lung cancer had already emerged, and that we just had to hang on a few more years to put an end to this nightmare.

But life never gives a break, does it?

Just two weeks ago:

My head was hurting. At first, I thought it was just another consequence—one of many—of the treatments: immunotherapy, drugs, accumulated fatigue… Nothing new, nothing I couldn't handle. But I decided to tell my oncologist.

—How are you feeling, Iara? Well, not very well, to be honest.

"I'm going to order a CT scan of your head with contrast," he said. "I want to understand what's causing these headaches."

I didn't give it much thought. A recent PET-CT scan showed no brain lesions. Still, the next day I showed up at the hospital, fasting, accompanied by my aunt Marisa and my brother José Ramón.

"Are you sure it's worth doing it now?" my brother asked me on the way. "It could be the drugs, the fatigue. You've never had brain injuries in ten years. Besides, tomorrow you're going to tour Portugal in a campervan with your boyfriend. You know the contrast is bad for you... Wouldn't it be better to wait?"

But I wasn't afraid. I'd had so many tests that they were already part of my routine. It was protocol. It was simply part of my life.

The surprise came with the results.

Hours passed. The oncologist came in and out of the office. Finally, she called me. I went in with my aunt. I saw her eyes, glassy, ​​as if they contained an ocean.

"You have between five and six metastases in your brain," he said. "We need to change our strategy."

The treatment I was receiving didn't cross the blood-brain barrier. I didn't want to ask, but I did. I needed to know.

—How much time do I have left?

The response was as direct as it was devastating:

—At most, a few months.

In ten years of having cancer, I'd never heard anything like this before. Suddenly, everything changed. It was as if someone had activated a countdown. A silent bomb inside me.

I went from being a chronic patient to a terminal patient.

And that's where my real dilemma began:

Did you want it all to end?

Or did he want to fight, knowing he was probably going to lose?

But that's what journalists are like: we live in conflict zones. And I, who had covered wars in different corners of the world, decided to cover this one too: my inner war. I want my life—and also my death—to be dignified.

Even if there's no treatment, I'll search for it. Even if there are no answers, I'll write to find them. Because often it's not that there aren't any answers; it's that no one has searched hard enough.

And so I made a decision:

This article will be my legacy.

I want to leave something that won't go out with me.

Something that remains when I'm no longer here to tell the tale.

A trench of words, data, voices and memory.

A place where other people can depart, search, understand, or simply not feel so alone.

I don't know if this will be enough to change anything. But it's what I know how to do: write. Ask questions. Investigate. Tell stories. Give a name to what hurts. And if along the way I can open a crack—however small—through which a little hope can seep, it will have been worth it.

Because, in the end, that's what it's all about: keeping going.

Of getting up even knowing that the horizon is blurry.

To keep breathing, even if it hurts.

To believe, even when all seems lost.

To insist.

To persist.

And never give up.

This is me. And this will be my essence.