When Julie Carr was found to have lung cancer at age 47, it shook the whole family. A nonsmoker, she had always been healthy until the CT scan revealed a tumor in her upper right lung.
Just months later, her father, Gerry Blair, who had risk factors for lung cancer, was found to have a tumor in same spot.
After two family members got such similar diagnoses, Carr's younger sister, Renee Marrero, thought she should get a CT scan, but she was refused because she is a nonsmoker, which means she didn't meet eligibility requirements.
She couldn't get anybody to write her a CT scanning order. Finally, her father's oncologist agreed to scan her, which revealed an 8-millimeter part-solid ground-glass nodule on Marrero's upper right lung — stage 1 cancer and the same spot as her sister's and father's tumors.
It was found early and removed successfully and did not spread to other body parts. She is likely 100% cured. But Carr and their father died.
As a lung cancer survivor, Marrero shared her story on the website for A Breath of Hope Lung Foundation (ABOHLF), a Minneapolis-based nonprofit that fights lung cancer by funding research, raising awareness and supporting lung cancer patients and families.
"Most people with lung cancer do not get the chance to be diagnosed early," Marrero said. "I want my story to make a difference so that everyone becomes more aware and has a chance to catch their cancer early when it is easier to beat. I believe that A Breath of Hope is making a difference."
Established in 2008 by a group of lung cancer patients and family members in the Twin Cities, ABOHLF aims to improve the survival rate of lung cancer patients, which is now only 23% in the United States. According to the National Cancer Institute, lung cancer is the deadliest cancer in the country. So, ABOHLF is trying to increase public awareness about the disease and encourage preventive screening — a low-dose CT scan — for early detection.
"Just in Minnesota, less than 8% of people who are eligible to be screened have been screened," said Nancy Torrison, executive director of ABOHLF. "So, it's hard to improve the survival rate when everybody is catching it late. Right now, 74% of lung cancer cases in the U.S. are found in stage 3 or 4."
Torrison is frustrated by the limited eligibility criteria for low-dose CT scans in the United States: adults 50 to 80 who have a 20-pack-year smoking history and smoke or have quit within the past 15 years. (A pack-year is smoking an average of one pack of cigarettes per day for one year.)
"I think it's really important that people who don't meet the criteria right now be very aware of their bodies and their lungs, and ask for what they need," she said. "I go to a lot of funerals, and they are typically people that were not eligible for screening. It's just very, very painful."
Torrison remembers her final conversation in the hospital with her aunt who had late-stage lung cancer.
"She said, 'I deserved to die because I can't beat smoking,'" Torrison recalled. "There's a really major stigma attached to this disease, and most lung cancer patients, whether they smoked or not, get sort of societal blame."
Numerous studies have shown that smoking is not the only lung cancer risk factor; others include family history, radon exposure and air pollution. More than half of all lung cancers occur in people who have quit smoking or never smoked.
"I feel that stigma is still pressing down on the [lung cancer health care] field and holding back certain areas from advancing like they should for the world's deadliest cancer," she said.
Over 11 years of advocating for lung cancer patients, Torrison has discovered multiple barriers that hinder the improvement of survival rates, such as the lack of funding in research and health inequity in minoritized communities. Half of those with lung cancer live in low-income communities, and Black men have the highest rate of lung cancer in the country.
"If you don't even know you can be screened for lung cancer, if you don't have a doctor, you're not going to get screened for lung cancer," she said. "Identifying the people that are eligible is a challenge for health care systems."
To overcome this disparity, ABOHLF is conducting a Great Minnesota Screen-Together campaign in collaboration with partners such as Mayo Clinic, Allina Health and the University of Minnesota. In the next two weeks, a statewide advertising drive will urge people to take a CT-scan eligibility quiz with three simple questions. There is also a lung cancer education exhibit at the Minnesota State Fair hosted by ABOHLF in the KARE 11 Health booth, where volunteers will be sending out the quiz.
"In such a disadvantaged cancer like lung cancer, we want every patient to have every advantage and educate themselves," Torrison said. "It's an easy and simple test that can save your life. There's no shame in being screened for lung cancer. So why wouldn't you do it if you're one of the 'lucky' eligible ones?"
More information about lung cancer, its symptoms and prevention: youandlungcancer.com/en-lc/home#