Babylon woman fighting Stage 4 breast cancer highlights critical need for patient advocates
It has been over 18 months since Nivia Matos was first diagnosed with Stage 4 breast cancer. Within months of her initial battle in February 2025, the cancer spread to her lungs—and on Monday, she received the news that it has reached her spine.
More Stories
One year ago, News 12 spoke with Nivia Matos as she battled Stage 4 breast cancer.
It has been over 18 months since Nivia Matos was first diagnosed with Stage 4 breast cancer. Within months of her initial battle in February 2025, the cancer spread to her lungs—and on Monday, she received the news that it has reached her spine.
Catching her breath is now a daily struggle for Matos. Her oncologist, Dr. Kathy Deng of Catholic Health, says Matos was finally stable until everything shifted in early January.
"Everything was getting better when all of a sudden she comes in one day. I was like, ‘How's the medication? ‘" Dr. Deng said. "And she's like, ‘I haven't been on it.’”
For Matos, navigating critical care means depending solely on herself. She says the burden of keeping track of miscellaneous life details—including renewing her insurance when she turned 65—proved overwhelming while fighting for her life.
"You know, you don't think of that, if you only had that one person, almost like an advocate," Matos said.
That lifeline, according to Matos, was Mikayla Mustakas, her oncology financial coordinator. Mustakas emphasizes that there is a profound, critical need for true patient advocacy in the healthcare system.
"It was incredibly difficult for Nivia, even just navigating the phone calls or, you know, obtaining the right documents," Mustakas said. "That really causes a lot of stress for patients then, especially in like the worst times of their lives."
After eight long months without coverage, Matos is finally back on her medication, thanks in large part to the guidance she received.
"Thank God, I say I had someone advocating for me here because I really don't know how people manage," Matos said. "I could see people really giving up."
While Matos' cancer is not curable, she proves that her fight didn't end when her insurance did.
