Advocate Spotlight: Alisa

LungCancer.net shares the stories and experiences of people living with lung cancer. We are highlighting the story of our advocate Alisa who was diagnosed with lung cancer in 2000, but her journey and connection to lung cancer started long before that date.

This is Alisa’s story...

My journey started before my diagnosis...

I was diagnosed in July 2000, but my journey started long before. My maternal great-grandfather and grandfather, my grandfather’s brother, and sister all died of lung cancer. My mom died of lung cancer just a few months before my own diagnosis.

I was diagnosed after going back and forth to my internist for a year, but because I never fit the profile (thank you, stigma) it took another incident to finally get sent for a chest x-ray to look for rheumatoid arthritis, not even lung cancer. All this while the internist knew my family history of lung cancer.

My relatives who died of lung cancer were all around 70 years old when they died and I was much younger, so I didn’t think of lung cancer either. I just knew something was wrong. When I finally went for the x-ray, I was told I had a huge mass in my lung and needed a biopsy, which confirmed lung cancer.

Many treatments over the years

I had a lobectomy and 6 cycles of chemo, carboplatin, and taxol. I did not have mutation testing as that was not available in 2000 when I was diagnosed. In 2014 when biomarker testing was becoming more common, because of remaining, very slow-growing nodules, my thoracic surgeon had my original tumor from 2000 tested for mutations and I came back positive for the EGFR Deletion 19 mutation.

I am not in treatment right now, I am being closely watched, but it is good to know my biomarker and I am grateful for the advances made since my diagnosis.

My family is my source of pride and joy

During my lung cancer journey, my twin sons brought me so much joy. I am a single mom and the three of us were very close and traveled together a lot. Vacation therapy helped us through my diagnosis and treatment. We would take mini-vacations on weekends and during school breaks, we would go to Florida, often to Disney World. They also kept me very busy with multiple sports teams and martial arts and I loved every minute of it. They inspired me every day.

I am also inspired, more than I could ever put into words, by my lung cancer family. I have been lucky to have had only one line of therapy (so far), and I watch how others who have had multiple lines of therapy and/or are in clinical trials deal with their treatments and I am beyond inspired.

Something most people don't know

One thing most don't know is that I am an empath/clairsentient.

Editor’s Note: It is with profound sadness that we announce the passing of Alisa Brenes on November 9, 2024. Alisa’s advocacy and writing have made a lasting impact, and her contributions will continue to inspire many. She will be deeply missed.