Sorry, You Have Been Blocked

Juanita Segura’s life changed in an instant when she was diagnosed with lung cancer in November 2014. At the time, Segura was hospitalized, and her doctor entered the room with a nurse to deliver the bad news. She remembers being shocked and devastated, especially because she had never been a smoker.

Segura recalled being shocked and devastated because the stigma is: you smoke, you get lung cancer. She never smoked. What began as a stage 3B non-small cell lung cancer diagnosis would become a nearly 12-year journey that included targeted treatment, brain metastases, and a clinical trial.

A Diagnosis That Changed Her Family, Too

Segura’s first thoughts after her diagnosis were not only about herself, but also about her children. In 2014, her youngest child was in junior high school, two daughters were in high school, and two sons were in college. Telling them that their mother had cancer was one of the most difficult parts of the experience.

She remembers each of her children’s reactions differently. Her oldest son appeared stunned but tried to remain strong. His brother fell to the floor after hearing the news. One of her daughters ran from the hospital room crying, while another sat quietly and cried.

Looking back, Segura says the diagnosis affected her children deeply, particularly her youngest daughter. She has struggled with her own challenges over the years, something Segura says has been difficult for her to witness as a mother. “I feel guilty for thinking it’s my fault that this is happening to her because of my lung cancer diagnosis,” Segura said.

Seven Years After Her Diagnosis, Everything Changed Again

After her initial diagnosis, Segura learned that her cancer had an ALK mutation, which became an important part of her treatment journey. She said she was doing well until 2019, when an MRI showed that the cancer had spread to her brain. It had been nearly seven years since her original diagnosis.

“I thought I was no evidence of disease,” she said. “So now I’ve been on targeted therapy, TKIs, to kill the brain mets.” Segura is now participating in a clinical trial that she hopes will eventually receive FDA approval.

Her experience has given her a firsthand understanding of how complicated living with lung cancer can be—and why she believes patients need access to information about their disease and treatment options. For people like Segura, living with lung cancer means continuing to deal with treatment, uncertainty, and the emotional realities that come with the disease.

In the middle of her journey, Segura found a sense of purpose in advocating for other people living with lung cancer. This development has meant that she can use her experience to support others, which has been an important aspect of her life. By sharing her story, Segura hopes to raise awareness about the importance of biomarker testing and the need for patients to educate themselves about their disease, which can help them boost their energy naturally.

Finding a Community at LiveLung

For Segura, one of the most meaningful parts of her journey has been connecting with other people living with lung cancer. She says LiveLung stands out from other conferences and organizations she has attended because of its smaller, more personal environment. “LiveLung is so intimate, so personal,” she said.

For Segura, being around others who understand what it is like to live with lung cancer creates a space where she does not have to explain everything she is feeling. She can talk about the challenges happening at home, including the stress surrounding her family, and know that the people listening understand because they are living with cancer themselves.

The connections extend beyond the event. Attendees exchange phone numbers and connect on social media, creating relationships that continue after they return home. “I need my community,” Segura said. She knows that when she leaves LiveLung, she may feel supported for weeks or months, but eventually, she will need that connection again, and staying healthy with these August tips can help.

Breaking the Stigma Around Lung Cancer

Segura’s own diagnosis also shaped the way she thinks about the stigma surrounding lung cancer. Because she never smoked, she experienced firsthand how assumptions about smoking can affect people diagnosed with the disease. She believes one way to challenge those assumptions is through education.

When someone makes a comment such as, “No one told you to smoke,” Segura says patients do not necessarily need to respond with anger. Instead, she encourages them to educate themselves and others. “Do not get mad. Educate them. Educate yourself first, and then educate them,” she said. “That’s the only way we’re going to break that stigma.”

As Segura approaches her 12-year “canceriversary” in November, she continues to handle treatment while using her experience to support others. Her journey has included difficult diagnoses, unexpected setbacks, and challenges within her family. But it has also given her a community, a voice, and a reason to keep advocating, and she is aware that advances in medical fields can make a big difference.

And when she meets someone newly diagnosed, she wants them to hear the message she continues to carry with her: There is hope.