When Summer Farmen first noticed the shortness of breath and persistent tiredness, she didn’t think much of it.
It was early 2020, but COVID wasn’t her first thought, since she otherwise felt fine.
Within a month, she found herself choking and coughing during casual conversations.
The Pennsylvania-based mom of three was used to taking extra care of herself, since she and her husband are primary caregivers for their son with cerebral palsy.
“I always made sure I was eating healthy and staying in shape,” she told Business Insider. “So here I am, 44 years old with, I thought, no risk factors for cancer, but we’re mid-pandemic, and I suddenly was struggling to breathe, gasping for breath, coughing incessantly.”
As the weeks went by, Farmen felt worse and worse. When the family’s routine Fortnite gaming sessions left her exhausted, she wondered if it could be asthma, pneumonia, or coronavirus after all.
After antibiotics and other treatments didn’t help, she went to the emergency room, fighting for air, where doctors drained 2 liters of fluid from her lungs.
“I joke that it was a Diet Coke bottle that had been just compressing my lung,” Farmen said.
She was eventually diagnosed with stage four lung cancer, related to an unusual type of gene abnormality.
A typical patient in her situation might have six months to live, maybe a year and a half with good luck. More than six years later, at age 50, Farmen is not just surviving but thriving. She used her experiences as a patient to advocate for more and better research to help others facing the disease.
“It’s so therapeutic to give back,” she said. “We’re educating and empowering patients that you’re not just riding along for this, you’re in the driver’s seat. Make your voice heard.”
A rare genetic mutation
After ending up in the ER, the last thing Farmen expected was to celebrate a lung cancer diagnosis. But that’s exactly what happened.
Initially, doctors feared her cancer had spread from another organ, such as her uterus, and could be terminal. An end-stage diagnosis would mean the only treatment options would be to keep Farmen comfortable through her final days.
While lung cancer is one of the deadliest cancers, Farmen was diagnosed alk-positive, a specific subtype that’s highly treatable.
“I got the call that it was lung cancer, and my dad and I are in the front yard hugging and crying. We’re so happy,” she said.
Her specific form of cancer is caused by a gene mutation that occurs during the patient’s lifetime, so it can’t be passed down to children.
It responds well to targeted therapy, a precision cancer treatment that blocks the cancer’s fuel sources, such as proteins, to prevent tumors from growing.
Farmen’s treatment plan included medications called tyrosine kinase inhibitors that work by interrupting signals that tell cancer cells to grow and divide uncontrollably.
While Farmen said she’s generally an optimist, the treatment process “wasn’t all sunshine.” She was afraid of never teaching her son to drive or missing her daughter’s high school graduation.
“I went to dark places. I was in the fetal position several times, but I’d never let myself stay there,” she said.
A major turning point as she underwent treatment was finding support groups with other alk-positive patients.
“It was a lifeline immediately. You’re finding out about different patient experiences. You’re getting validation,” Farmen said. “Right away in the beginning, I’m learning about strength and adversity, the importance of patient preferences, the importance of a patient voice.”
From patient to advocate
Farmen’s journey into the alk-positive cancer support community started with an art therapy class on Zoom. Before long, she was helping to expand the program and organizing educational sessions.
“Soon after I became involved, I knew I had to give back. I had to help others,” she said.
The nonprofit behind the programs, Alk Positive Inc., funds cancer research to improve patients’ quality of life while providing resources such as support groups and clinical trial information.
Farmen is now the organization’s vice president and a contributor to a recent study published in the journal Lung Cancer.
The research focused on patient and caregiver preferences in balancing the potential benefits and side effects of treatment options, a key issue in the increasingly personalized world of cancer care.
Farmen said that as a cancer survivor, giving back has helped her come to terms with some of the psychological toll. The physical and emotional strain is ongoing.
“You wouldn’t pick me out of a group as a stage four lung cancer patient, but there are debilitating side effects that everybody experiences differently from these life-extending treatments that we’re on,” she said. “I still have a stage four cancer diagnosis. I still have scans every three months. It’s not if my cancer progresses, it’s when my cancer progresses.
For now, Farmen, who turned 50 in April, is busy celebrating five decades of being alive. “I’m so lucky to be 50. I’m so happy to be here. Growing old is a privilege,” she said.
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