"Lung Cancer Made Me Who I Am Today” : Juanita Segura on Her Journey and Finding Hope

When Juanita Segura was diagnosed with lung cancer in November 2014, her life changed in an instant.

At the time, Segura was hospitalized when her doctor entered the room with a nurse and told her and her husband that he had bad news. She remembers being shocked and devastated, especially because she had never been a smoker.

“I was shocked and devastated because the stigma is: you smoke, you get lung cancer. I never smoked,” Segura recalled.

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. Along the way, Segura has also found a new sense of purpose in advocating for other people living with lung cancer.

A Diagnosis That Changed Her Family, Too

Segura's first thoughts after her diagnosis were not only about herself. She immediately thought 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 like it's my fault that this is happening to her because of my lung cancer diagnosis,” Segura said.

Although she carries that emotion with her, the experience has also taught her that cancer affects an entire family—not just the person receiving the diagnosis.

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 yeah, and 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.

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. Coming back allows her to reconnect with people who understand her experience.

She also says the event gives her something to look forward to.

Why She Doesn't Use the Word "Survivor"

One of the ways Segura's perspective has changed over nearly 12 years is how she talks about people living with lung cancer.

She prefers not to use the word “survivor” because she believes it can create the impression that someone is cured.

“A lot of us aren't. We're living with it,” she said.

That distinction is important to Segura because her own experience demonstrates how cancer can remain part of a person's life for years. Even after periods when she believed she had no evidence of disease, her cancer eventually spread to her brain.

For her, living with lung cancer means continuing to navigate treatment, uncertainty and the emotional realities that come with the disease.

"Lung Cancer Made Me Who I Am Today"

Despite everything she has experienced, Segura says lung cancer has also changed her in ways she never expected.

“Honestly, lung cancer has made me the woman that I thought that I dreamed of,” she said.

She describes herself as stronger, more resilient, courageous and willing to fight.

“It taught me to fight,” she said. “It taught me to seek deep within and come out, Juanita, and fight.”

Her experience has also made her more compassionate toward other people. She says she now looks at people differently, recognizing that someone who appears angry, frustrated or distant may be dealing with something she knows nothing about.

She may wonder whether that person was recently diagnosed with cancer or lost someone they love.

“It's made me humble,” Segura said.

Turning Her Experience Into Advocacy

That compassion has become an important part of Segura's advocacy.

Through her experiences and programs such as the LiveLung Advocacy Academy, she has learned how to use her voice to help other people living with lung cancer.

Her message to someone who has just been diagnosed is simple: There is hope.

Segura points to advances in targeted therapy, immunotherapy and ongoing research as reasons patients should not assume a lung cancer diagnosis means there are no options.

She is particularly passionate about biomarker testing.

Segura encourages patients to ask their oncologists about testing because identifying a specific genetic mutation can help determine whether a targeted treatment may be appropriate.

“If you have a specific gene mutation, you could take a pill, and that could save you,” she said.

She also encourages patients to seek second, third or even fourth opinions if they feel their questions are not being addressed.

For Segura, being an advocate means educating yourself first and then helping educate others.

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.”

She also talks with people about screening, particularly those who have a history of smoking. Her goal is to encourage people to speak with their health care providers about whether screening is appropriate for them.

The Word She Uses to Describe LiveLung

If Segura had to describe her experience at LiveLung in one word, she would choose “intimacy”—or closeness.

The smaller setting allows people to slow down, reconnect and build relationships in a way that can be difficult at larger conferences.

Someone she may have only briefly greeted at a previous event can become someone she sits down with, talks to and gets to know.

For Segura, that is what makes the community meaningful.

It is about building friendships, creating a sense of sisterhood and brotherhood, and knowing there are people who understand what it means to live with lung cancer.

As Segura approaches her 12-year “canceriversary” in November, she continues to navigate 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 when she meets someone newly diagnosed, she wants them to hear the message she continues to carry with her:

There is hope.

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