She’d been suffering from a persistent cough, and thought it might be bronchitis, a diagnosis with which her doctor initially agreed. When treatment for that failed to help, he thought it might be pneumonia. And when treatment for pneumonia didn’t help, he though perhaps it was asthma. The cough continued. Finally, her doctor sent her for an X-ray and a CT scan, which found a mass in her lung. Next he sent her for a positron emission tomography (PET) scan. A PET scan uses a radioactive drug to detect disease by illuminating tissue and organ function. Castevens had significant metabolic activity in her lungs, an indication that something was very wrong. The most likely diagnosis was lung cancer. “I never expected to hear that word,” says Castevens. “I was thinking it was some kind of horrible pneumonia or lung infection that it might take months to get over, but not cancer.” When she asked the doctor the likelihood that it was lung cancer, his response was “Ninety-nine percent.” RELATED: How Exercise ‘Prehab’ and Rehab Can Change the Game for Lung Cancer Patients Suddenly the symptoms that had dogged Castevens for months — persistent coughing, chest pain, shortness of breath, and weight loss — made sense. But the how of it did not. Castevens had never smoked. As a result, neither she nor her doctor even considered lung cancer as a possibility when she first complained of symptoms. Her case represents a growing and mystifying trend: While the incidence of lung cancer is decreasing overall, as is mortality from the disease, according to the most recent statistics, there has been a significant uptick among women who have never smoked, particularly young women. In February 2016, Castevens went in for surgery without knowing exactly what doctors would do. Biopsies and scans indicated that the cancer was still localized in her left lung. Doctors said that with surgery to remove either the entire lung, or the lower lobe, she would likely be cancer free. When she woke in the recovery room, she turned to her husband Joe for an update. “Lobe or lung?” she asked. “Neither,” he responded. “They didn’t do anything because they found all these tumors. The cancer is stage 4.” The earlier tests and predictions had been wrong. The cancer was everywhere, rendering surgery useless. The news was far from encouraging. The American Cancer Society puts the five-year survival rate for stage 4, defined as lung cancer that has metastasized beyond the lungs, at a grim 3 percent. Following her aborted surgery, the Castevenses spent more than two hours in consultation with an oncologist who patiently explained what lay ahead, including a reason to be hopeful. RELATED: 9 Things to Know About Targeted Therapies for Metastatic Non-Small-Cell Lung Cancer
Taking Advantage of Targeted Therapy
For years, lung cancer has been treated with a standard regimen of chemotherapy. But in the last decade or so researchers have discovered that some tumors respond to a type of immunotherapy drug known as a checkpoint inhibitor, and that, in these cases, survival is much more likely. What’s more, many lung cancers contain specific mutations for which targeted drugs are available. People with these mutations generally survive longer, as well. Genomic testing of Castevens’s tumor revealed that it was EGFR positive, meaning that it had a mutation, known as an epidermal growth factor receptor (EGFR) Exon 19 deletion that responds to targeted therapy. Her doctor prescribed afatanib (Gilotrif, Afanix, Giotrif), a type of drug known as a tyrosine kinase inhibitor, which works by blocking the enzymes that promote the growth and spread of cancer. It had a steep price tag ($17,000 a month) and some pretty rough side effects, like diarrhea and a full-body rash, but the drug stabilized her health and life. Castevens was well aware that she’d been given time many in her position didn’t have. When she asked why there was no lung cancer support group at her treatment center, the care coordinator said because no one ever lived long enough to attend. Castevens decided to retire from work and went on disability. She spent the next year traveling and enjoying quality time with family and friends. As with the majority of patients whose disease responds to targeted therapies, the drug gave her time, not a cure. In August of 2017, her follow-up scans showed that the cancer had grown and moved close to her heart, the first progression since she started afatinib. Doctors tried to combat the spread with four rounds of intensity-modulated radiation therapy (IMRT), precisely targeted photon or proton beams used to shrink a tumor without harming healthy tissue. Fifteen months later, a new round of genetic testing found she now had the T-790M mutation, which usually responds well to another targeted drug, Tagrisso (osimertinib). Castevens felt as if she’d hit the lottery for the second time. “We celebrated because we thought ‘this gives me at least two more years,’” she said. Unfortunately, Tagrisso did not impede the disease’s advance. “It just didn’t work for me. I never had a clear scan the whole time I was on that drug.” RELATED: A Lung Cancer Survivor Celebrates by Taking on Stigma
Advocating for More Lung Cancer Funding
Scans taken just before Christmas 2019 show the cancer is now in Castevens’s spine and soft tissue, with new lesions in her right lung. The T-790M mutation is also gone, along with any known treatment options. She recently completed a combination of chemo and immunotherapy and takes a combination of drugs for the pain and side effects. Castevens eventually found an online lung cancer survivors group, including women with the same mutation. They share hope, inspiration, and practical tips on living with the disease. “I’ve got hundreds of lung cancer friends who are nonsmokers like me,” she says. “Many of them are women in their twenties and thirties. I feel lucky that I made it to 58 before being diagnosed.” Spreading the word about the disease has become her mission. She especially wants people to know that, although lung cancer is the number one cause of cancer death, it receives much less funding per death than breast cancer. “There is a disparity in the way lung cancer is treated compared with other cancers. It takes more lives than the next three cancers combined. And if you made nonsmokers lung cancer its own cancer, it would be number 10.” Castevens is doing her best to change this. Since being diagnosed, Castevens has traveled to Washington, DC, and Raleigh, North Carolina, to lobby legislators to restore lung cancer research funding cut 10 years ago. Her hope: Someone, somewhere down the road, will benefit, even if it’s too late for her. RELATED: Lifting the Stigma of Lung Cancer
