In early April 2016, I developed a persistent cough that wouldn’t go away and that ultimately drove me to urgent care. Ordinarily, I would have been alarmed when the X-ray showed a spot on my lung. But the doctors assured me that I had pneumonia, and that a round of strong antibiotics would cure it. When weeks passed and the cough was no better, I went to my primary care provider, a physician assistant. Once again, the X-ray showed the spot on my lung, and once again, I was diagnosed with pneumonia. My PA told me to be patient, that pneumonia could linger for up to eight weeks.
Hurdle Number 1: Getting a Diagnosis
By the end of May, the cough was no better and I was at my wits’ end. I knew something was wrong. I went to my doctor again. This time, I demanded a CT scan. My PA insisted on another X-ray. When the results showed the spot on my lung had grown, he finally relented and ordered a CT scan. The next morning, he called and asked me to come in and bring a loved one with me. That’s when I knew it was cancer. In short order, I had a biopsy, a full PET scan, and tons of blood work. I was diagnosed with stage 4 lung cancer. By this time, the cancer was in both lungs, my lymph system, and my breastbone. By contrast, six months before I was diagnosed with lung cancer, I found a lump in my breast. The same PA had immediately ordered a biopsy and lauded me for being proactive. (It turned out to be nothing.) The difference between that experience and my struggle to get a lung cancer diagnosis could not have been more stark. In the second case, faced with a patient with a persistent cough and a sketchy X-ray, my PA had treated me like a paranoid hypochondriac. One of the main reasons: I don’t fit the stereotype of someone who should be at risk for lung cancer. I’m 41, female, and I’ve never been a smoker. If I’d been a middle-aged male smoker, the stereotypical face of lung cancer, I probably would have been diagnosed much sooner. But the truth is my healthcare provider should have known better. The demographics of lung cancer are changing. Statistics now show that the fastest-growing group of people diagnosed with lung cancer are people like me — nonsmoking females. That message, however, has not gotten out. Not even, apparently, to healthcare providers. RELATED: How to Stay Nourished and Hydrated if You Have Metastatic Non-Small-Cell Lung Cancer
Hurdle Number 2: Learning to Be My Own Advocate
The days and weeks immediately following my diagnosis were very dark. Doctors predicted that I had another 12 to 18 months to live. Counseling helped my husband and me cope with the idea that I might be dying and the best way to prepare my children, ages 8 and 10, for what lay ahead. I tried to be honest with them about what having the disease meant, but also promised to fight as hard as I could to stay with them. The first battle: I refused to accept that there was nothing doctors could do for me. When the first oncologist said my cancer was too advanced for me to undergo surgery on the right lower lobe of my lung, where the tumor was, I went to the Mayo Clinic for a second opinion. There, the doctors said I was young and otherwise healthy enough for the procedure. As with the majority of nonsmokers, my lung cancer had an EGFR mutation. That was good news, amid all the bad, because there are drugs that target these mutations that can be very effective in stalling the cancer. My first drug, Tarceva (erlotinib), got rid of the cancer in my breastbone and lungs, with the exception of one stubborn tumor. Despite being considered “NED,” or no evidence of disease, I left my job as the CFO of a private high school and went on disability to focus on my health and my family. Things went well for several months. Then one day I started experiencing leg pain that was so bad I couldn’t walk. Concerned that I’d developed a blood clot, a common side effect of the medication, I went to urgent care, where the doctor initially refused to order an X-ray. She argued for a wait-and-see approach. But after my earlier experience, I refused to be brushed off. I demanded an X-ray. The X-ray revealed a six-centimeter tumor on the lower part of my femur, where the lung cancer had metastasized. (It’s not uncommon for lung cancer to metastasize to bones.) I underwent a seven-hour surgery to remove the tumor, during which a metal plate that stretched from my hip to my knee was installed to prevent the leg from breaking. Post-surgery, I had 10 rounds of radiation and switched from Tarceva to Tagrisso (osimertinib), another drug used to target the EGFR mutation. In January of 2019, doctors at the Mayo Clinic performed another bronchoscopy. But they didn’t take enough tissue to do genomic testing on the tumor. Genomic testing on lung cancer is key, because it tells you not only whether you have a mutation that can be targeted, like my EGFR mutation, but whether you have acquired new ones. I wasn’t happy about the too-little-tissue situation, so I went to the University of Chicago, where genomic testing is done in–house and requires less tissue. That’s where I learned that my tumor had, indeed, changed. It had developed a resistance mechanism, known as MET amplification, to Tagrisso. My doctors then added another drug to my regimen to deal with the resistance. I’ve been on this regimen for about eight months, with relative stability, but with intense stomach issues and fatigue as side effects. I am extremely lucky to have these treatment options. But I also feel much more can — and should — be done. RELATED: Mapping Your Mutations: What Everyone With Lung Cancer Needs to Know
Hurdle Number 3: Stigma
One thing I’ve learned: People diagnosed with lung cancer face stigma. Almost without exception, the first thing someone says when they learn I have lung cancer is “I didn’t know you smoked” or “How long did you smoke?” These comments are frustrating and hurtful. I usually take the opportunity to educate them about my disease. More importantly, though, I believe this stigma prevents appropriate federal funding because of the misconception that lung cancer is a smoker’s disease and the belief that those affected brought it on themselves. There is an astronomical funding disparity between lung and other more curable cancers like breast, prostate, and colon, for example. But lung cancer is expected to kill more than 135,000 people in 2020, far more than colon cancer, breast cancer, and prostate cancer combined. Federal funding for lung cancer research per related death was just $1,680 compared with $24,846 for breast cancer. Lung cancer funding should better reflect the number of people it affects and kills each year. Like many others, I was blindsided by my diagnosis. I’ll do whatever I can to raise awareness. I’ve been a lung cancer patient reviewer for the Congressionally Directed Medical Research Programs for the past two years and lobbied for increased funding on Capitol Hill. There is movement in the right direction, and every little bit helps save thousands of lives. Working with A Breath of Hope Lung Foundation gives me a way to advocate for my disease while major treatment innovations like targeted therapies and immunotherapies give me hope. We’ll keep making noise until everyone realizes the gravity of this disease, that no one is immune and that we deserve more help in this fight.
