Woman Advocates for Research After Lung Cancer Diagnosis at 30

Louisville resident Marisa Wittebort is proof that anyone with lungs can get lung cancer. She had no family history or common risk factors for the disease, but at just 30 years old, doctors diagnosed her with stage IV lung cancer. Now, exactly four years since her diagnosis, she is sharing her story to raise awareness for lung cancer and funds for life-saving research.

Four years ago, Wittebort decided to quit her job and move to London to pursue her master’s degree. When she arrived and attended her first class, she began feeling sick.

“I quickly started losing the ability to breathe. My heart would beat really fast,” she said. “On the way to class I was coughing a lot and my backpack felt very heavy.”

Finally, she could not ignore it any longer. She went to the emergency room where an x-ray revealed fluid in her left lung. She underwent several tests and went home. The next morning, the doctor called to ask her to return to the hospital. They had found a blood clot in her lung, known as a pulmonary embolism. She continued to stay in the hospital, and after seven days and at just 30 years old, doctors officially diagnosed her with lung cancer.

“I was told I have adenocarcinoma and later learned it was stage IV because it had spread to both lungs, my lymph nodes and the pleura [the lining of the lungs],” she said. “I was obviously very scared and very confused. But more than anything, I was worried about how my family would cope.”

Wittebort soon learned that she was at one of the best hospitals in Europe and had a doctor who specialized in treating lung cancer in young people. The doctor tested the tumor for mutations known to cause adenocarcinoma, which revealed Wittebort had a ROS1 mutation. This meant she was able to take a targeted oral medication to treat her cancer. Within two weeks, she was feeling better and was cleared to travel back to the U.S. Over the next year, she split her treatment between the U.S. and London while attending graduate school.

While the targeted medication for her lung cancer initially worked, she has faced several challenges along her lung cancer journey. Doctors recently found that the lung cancer spread once again to Wittebort’s brain, as it does in many ROS1 patients. A trial drug initially worked to shrink the tumors in the brain three years ago, but then doctors discovered a recurrence this September. She is currently undergoing whole brain radiation therapy to treat the spots.

Since her diagnosis, she has worked to connect with others who face lung cancer and to raise awareness about the disease. She joined a ROS1 Facebook group and helped create the ROS1ders project, the first-ever patient driven research study. On October 26, the American Lung Association in Kentucky will honor her as a Lung Health Hero at the Breath of Fresh Air Bash.

“People need to be aware that you just need lungs to get lung cancer,” said Wittebort. “I want genomic testing to be commonplace in all hospitals, so people know what kind of cancer they have and can tailor the treatment. But ultimately, we need more funding to develop drugs that will treat this as a chronic disease and more access to clinical trials, which have very rigid criteria for entry. Funding and access are essential to this cause.”

The Breath of Fresh Air Bash takes place on Saturday, October 26 at the Olmsted in Louisville. Money raised funds the Lung Association’s programs and services, including research, advocacy and public health education. More information, tickets and sponsorship information is available here.