Activist urges participation to crack the code.
Jill Feldman with family
Jill Feldman is passionate about advocating for lung cancer research. A mother of 4 young children, she was diagnosed at age 39 with EGFR positive lung cancer. She is the fifth member of her immediate family to have lung cancer, having lost two grandparents (on different sides of the family), both her parents, and an aunt to the disease.
Even before her own diagnosis, Feldman was looking for a way to connect to others touched by lung cancer. She connected with a couple of organizations involved in patient advocacy and support, including GO2 for Lung Cancer.
“It was a way for me to confront this disease that had devastated my family,” said Feldman. She also co-founded EGFR Resistors, a grassroots, patients-driven community dedicated to improving outcomes in patients with EGFR positive lung cancer.
A key to improving outcomes: More and better research.
Cracking the code on lung cancer.
When the Addario Lung Cancer Medical Institute (ALCMI) and GO2 for Lung Cancer launched the Epidemiology of Young Lung Cancer (EoYLC) study, Feldman jumped at the chance to participate. The study seeks to identify common risk factors among younger lung cancer patients to help researchers crack the code on a young lung cancer diagnosis.
“I believe one of the most important communities to look at within lung cancer are the young people who don’t have common risk factors,” says Feldman. “They don’t have a smoking history and they haven’t been exposed to radon. So what is it genetically about the people who do get it?”
Feldman and others eligible for EoYLC fill out a confidential, online survey capturing information about demographics, medical history, active and passive smoking history, early life exposures, and more. They also provide a small blood sample.
“The blood draw was easy,” said Feldman. “The phlebotomist came to my home.”
As for the survey, Feldman stressed that it’s eminently doable. “It can be overwhelming when people see they have to answer a lot of questions. But you don’t have to answer them all at once.”
Research: the power to change the future.
Feldman urges all eligible lung cancer patients to participate in the EoYLC study.
“Research matters,” she said. “If it weren’t for people participating in research, we wouldn’t have the treatments available to us today. I’m also motivated to crack the mystery of lung cancer for my kids. That’s huge.”
Finally, Feldman notes that research offers lung cancer patients a lifeline. “Participating in EoYLC and other studies is the power we have to change the future,” she said.
If you were diagnosed with lung cancer before age 40, we encourage you to find out more information and enroll in the currently recruiting Epidemiology of Young Lung Cancer study.
I am a Lung Cancer survivor. I was diagnosed when I was twenty – six years old. I am forty-five years old now. I was diagnosed with Stage IV Lung Cancer ten days after giving birth to my third child. In October of 2003, my left lung was removed after failed attempts at chemo and radiation therapy. In the spring of 2004, I learned there was metastasis to my brain, resulting in two cancerous lesions, and ultimately a craniotomy and full brain radiation. I lost complete use of my right side. I went through rigorous physical therapy in order to walk and use all extremities on that side. Due to my lung collapsing during attempts at a biopsy, I didn’t know it was considered a smokers cancer until after the pneumonectomy. I smoked for five years but was a current smoker. I didn’t fit inside the proverbial box. I was embarrassed at the time considering people might consider it my fault, I had Lung Cancer. I learned later that wasn’t always the truth of how Lung Cancer works.
At the time, I was strongly advised not to get pregnant again, due to hormones setting off Cancer, so shortly in remission. In 2005, I found out I was pregnant again. This realization fell shortly after I had finished full brain radiation. I was advised to terminate the pregnancy, but I was already in my fourth month when I found out. Long story short, I now have four children and one Grandchild. During my experience with Cancer. I longed for a success story admist the bad news. I also realized the importance of patient advocacy, but that’s for another time.