In October 2013, Lisa Goldman had a dry cough that wouldn’t go away. “It was bad enough that I went to the doctor, which I don’t do very often,” she says. He ordered a chest radiograph, said her lungs were clear, prescribed codeine cough syrup, and sent her home.
But she kept coughing, so she kept coming back. On her second visit, her doctor said her airways were irritated and prescribed an inhaler and antibiotics. By her third visit, she’d begun to cough up a bit of blood, but her doctor just repeated that her airways were irritated and prescribed steroids.
“I had two or three months of misdiagnosis,” says Lisa, a 41-year-old nonsmoker.
When Lisa visited her parents for the holidays, her cough got even worse. “I was coughing nonstop,” she says. “I was miserable.” Lisa’s mom urged her to go to the emergency room, where she got another chest radiograph and was told she had pneumonia. “More misdiagnosis and another two weeks of delay,” she says.
Then a family friend, who was a retired doctor, came to her parents’ house. “He said it wasn’t adding up, that my treatment didn’t match my symptoms,” Lisa recalls. “He told me to skip my primary care doctor and see a pulmonologist.”
She did that right after getting home in early January 2014. Her pulmonologist ordered a computed tomography (CT) scan, took one look at the results, and scheduled a biopsy. The biopsy revealed that she had stage IV non-small cell lung cancer. “In some ways, I was lucky,” Lisa says. “Many people take even longer to get diagnosed—I don’t think my primary care doctor even knew someone like me could get lung cancer.”
Neither did her pulmonologist. “He said, ‘it can’t be cancer—you’re only 40 and never smoked,'” Lisa says. He thought she had sarcoidosis, an autoimmune disease that can scar the lungs. “It’s serious and there’s no cure,” Lisa says. “But it’s not deadly. When I went into the biopsy, cancer wasn’t even on my mind.”
After scans showed the rest of her body was cancer-free, Lisa had four rounds of intensive chemotherapy. Every 3 weeks, she was hooked up to an intravenous tube that fed her a three-drug mix for 12 straight hours. Next came a maintenance treatment of two of the drugs, but then her lung cancer began to resist one of them.
Fortunately, Lisa had another good option. A few weeks into treatment, she learned her lung cancer had the ROS1 mutation, which can be treated with the drug Xalkori; but she wasn’t sure when she should switch to this targeted treatment.
So she called a lung cancer specialist in another state, who recommended that she stay on her maintenance chemotherapy as long as possible. The idea was, “to save your cards and only play them as needed,” Lisa says. Now she takes Xalkori, a twice-daily pill, and goes in for scans every few months. She’s also keeping her eye out for clinical trials and fast-tracked treatments that target ROS1.
What would she do differently if she knew what she knows now? Lisa would push for a CT scan much sooner. She also would have considered taking Xalkori right away, since this targeted treatment might have controlled her cancer more effectively from the start.
And her advice for others? “Don’t just settle for what your doctor at a community hospital says,” Lisa advises. “It’s really important to get a second opinion.” She also recommends getting genetic testing as soon as possible. “I’m amazed at how many people don’t know about it or don’t get it for weeks or even months,” she says.
Lisa began sharing her lung cancer experiences early on. “There wasn’t a lot out there because, until the new targeted medicines came along, people died pretty quickly,” she says. “Other people’s blogs were very helpful, so I decided to add my voice.”
Follow Lisa on her blog, Every Breath I Take.
Super Patients are cancer survivors who learned to be more engaged in their own care. Cancer Commons believes every patient can be a Super Patient or benefit from a Super Caregiver. We hope these stories will provide inspiration and hope for your or your loved one’s own treatment journey.