Usha Jain (left) and daughter, Amita Jain (right)

Lung cancer doesn’t just impact one person—it affects all those who love them. Perhaps no family understands this better than the Jain-Patkar family.

Meet Usha Jain, a retired professor in the Department of South and Southeast Asian Studies at UC Berkeley and the author of the definitive textbooks for teaching Hindi. During a trip to Spain in July 2018 she started suddenly coughing in a concerning and uncontrolled way. She came home and was diagnosed with Stage IV lung cancer. Two years of chemotherapy followed.

“I tolerated the treatments quite well,” says Usha Jain. “My family and friends were amazed that I had only a few side effects from the chemotherapy.”

And meet Usha’s daughter, Amita Jain, a pediatrician in the San Francisco Bay area. Six months after her mother’s diagnosis, Amita was experiencing subtle neurological symptoms—enough to worry her family. She had an MRI in January 2019 and was diagnosed with Stage IV lung cancer. Like her mother, she’d never smoked.

“I am lucky to have an ALK mutation,” says Amita Jain. “Because of research, I’m on a medication that did not exist five years ago.”

Now Usha worries about her daughter, and Amita worries about her mother. And they both worry about what it means for the next generation.

“We used to go to the in-person Living Rooms, and we would always ask about our children,” says Amita. “They don’t think it’s genetic because we have different versions. But it’s an unknown.”

That next generation includes Neha Patkar, Usha’s granddaughter and Amita’s daughter, a sophomore at Stanford University. Neha is studying human biology and Spanish, and she shared that she’s interested in learning more about how environmental factors impact people’s health.

“Living in the Bay Area, two months of the year we have horrible air quality and can’t go outside,” says Neha Patkar. “This obviously impacts lung health.”

Finding a community at GO2 for Lung Cancer

It was Neha Patkar who first found GO2 for Lung Cancer as she was searching for information—and support for her mother and grandmother. She and her parents started attending the monthly episodes of the Lung Cancer Living Room. Since COVID-19, they’ve watched online. Usha, too, watches online.

“For my mom and my grandma, it was a place of support, and a strong community that we wanted to be a part of,” says Neha. Her mother agrees, saying it was empowering to be in a room with other patients.

Neha also signed herself and her mom up for March’s Voices Summit. During congressional meetings, her mother told lawmakers, “I am sitting here today speaking to you because of the medications and innovations that have come out of lung cancer research. We need to continue funding this research to make life-changing and life-saving discoveries.”

Neha, meanwhile, says listening to her mother and others with lung cancer reminded her that “doing something as simple as sharing our story can have a profound impact.”

Neha Patkar says the other big takeaway from the Voices Summit was learning more about women and lung cancer. “I learned a lot of statistics that are staggering,” she says, “and especially the young women who are getting lung cancer. It’s a little jarring for me.”

You can find out statistics about women and lung cancer on a downloadable fact sheet.

GO2 for Lung Cancer and the Addario Lung Cancer Medical Institute are studying the epidemiology of young lung cancer, including environmental and childhood exposures. If you or someone you know was diagnosed with lung cancer before age 40, learn more about this research study.