When Summer Farmen began experiencing shortness of breath and persistent fatigue in early 2020, she didn’t think much of it at first. COVID-19 wasn’t on her radar since she felt generally fine. However, within a month, her condition worsened, leading to choking and coughing during everyday conversations.
This Pennsylvania mother of three typically took good care of herself, as she and her husband were primary caregivers for their son with cerebral palsy. “I always prioritized eating healthily and staying fit,” she shared. “So, here I was, 44 years old, assuming I had no real risk factors for cancer. But during the pandemic, I suddenly struggled to breathe, gasping and coughing a lot.”
As time passed, her situation deteriorated. The family’s Fortnite gaming nights left her utterly fatigued, prompting her to consider conditions like asthma or pneumonia, or potentially even COVID. After antibiotics and various treatments yielded no improvement, she ended up in the emergency room, desperately struggling for air. Doctors drained two liters of fluid from her lungs during her visit.
“I joke that it was like a Diet Coke bottle was compressing my lung,” Farmen recalled. Eventually, she received a diagnosis of stage four lung cancer due to an unusual gene abnormality. Typically, someone in her situation might have six months to a year and a half to live, but more than six years later, at the age of 50, she is not just surviving—she’s thriving. Farmen used her experiences to champion better research to assist others battling the disease.
“It’s incredibly therapeutic to give back,” she mentioned. “We’re educating and empowering patients, reminding them that they’re not just passive participants; they can take charge and make their voice heard.”
A rare genetic mutation
After her visit to the ER, Farmen certainly didn’t expect to celebrate a lung cancer diagnosis. Initially, doctors worried that her cancer might have metastasized from another location, like her uterus, which could lead to a terminal prognosis. A diagnosis at that stage would mean treating her simply to keep her comfortable in her final days.
Lung cancer is indeed one of the deadliest cancers, yet Farmen was diagnosed with the alk-positive subtype, which is notably treatable. “When I got the call confirming it was lung cancer, my dad and I were in the front yard embracing and weeping. We were so relieved,” she said.
The form of cancer she has results from a gene mutation that occurs during a person’s life, making it non-hereditary. It is responsive to targeted therapy that blocks the cancer’s energy sources and hinders tumor growth.
Farmen’s treatment involved tyrosine kinase inhibitors, which disrupt the signals instructing cancer cells to grow uncontrollably. Although she usually maintains an optimistic outlook, she admitted the treatment journey was “not all sunshine.” There were fears of never being able to teach her son to drive or missing out on her daughter’s high school graduation.
“I went to some dark places. I found myself in the fetal position on a few occasions, but I never allowed myself to remain there,” she stated. A significant turning point in her treatment was connecting with support groups for other alk-positive patients. “It was like a lifeline right from the start. You learn about different experiences, and there’s validation,” Farmen explained. “Instantly, you start discovering the importance of strength in adversity and the need for patients to voice their preferences.”
From patient to advocate
Farmen’s involvement in the alk-positive cancer support community began with an art therapy class on Zoom. Shortly thereafter, she found herself expanding that program and arranging educational sessions. “Once I got involved, I knew I wanted to give back. Helping others became a necessity,” she reflected.
The nonprofit she works with, Alk Positive Inc., funds cancer research aimed at enhancing patients’ quality of life, while also providing resources such as support groups and information about clinical trials. Now, she serves as the organization’s vice president and contributed to a recent study published in a medical journal.
The research explored the preferences of patients and caregivers in weighing the potential benefits and side effects of treatment options, a vital topic in the increasingly personalized realm of cancer care. For Farmen, being a cancer survivor has been a way to cope with the psychological burden. The physical and emotional strain is still present.
“You wouldn’t pick me out as a stage four lung cancer patient, but there are debilitating side effects that affect everyone differently from these life-extending treatments,” she noted. “I still have a stage four cancer diagnosis. I go for scans every three months. It’s not a question of if my cancer will progress, but when it will do so.”
Right now, as she celebrated her 50th birthday in April, she feels fortunate to be alive. “I’m just so grateful to have reached 50. It’s a joy being here. Growing older is truly a privilege,” she remarked.
