When you picture someone with Stage IV lung cancer, what comes to mind? For most people, it’s likely to be a frail-looking older man or woman with thinning hair tethered to an oxygen tank and moving slowly. Not a vibrant younger woman, like 40-year-old Jamaican-American Sydney Barned, MD, who has abundant long hair and energy to spare. She was diagnosed with Stage IV non-small-cell lung cancer (NSCLC) in 2017 at age 33. And she is all for busting stereotypes about lung cancer and who gets it.

Barned had a full plate in February 2016—a medical residency on the horizon, work, a serious boyfriend and regular 5K runs—when she first felt the left side of her chest “wasn’t really working properly. It just felt very tight,” she says. Accustomed to years of ballet, dancing and running almost daily, she realized that her exercise tolerance had slipped. At the time, she was in Jamaica, where she had attended medical school and was working in a hospital emergency department while awaiting acceptance into a medical residency program. An X-ray showed that the bottom half of her left lung was “filled with gunk.” She was diagnosed with walking pneumonia and prescribed antibiotics.

A chronic cough followed the tightness, so in April, Barned had another X-ray. Still present, the abnormality was less opaque, and the pulmonologist appeared unconcerned. He prescribed a steroid and recommended a follow-up X-ray in a month. Life intervened with her acceptance into a Washington, DC, residency program and a move to the United States. But over the summer, Barned, who has a strong family history of asthma, started wheezing and saw another pulmonologist. Testing late in the year ruled out asthma, and she had a third X-ray, the results of which were ominous.

Sydney Barned, MD

Sydney Barned, MDMatthew Rakola

“This eagle-eyed radiologist saw a small left lower lobe consolidation, which is what I had the year before,” Barned says. “And I immediately started crying because if I still have this abnormality, it means there is something in my lung.” A CT scan confirmed that a mass was compressing the airways in her left lung, causing the wheezing. The pulmonologist moved quickly to schedule a bronchoscopy, which revealed that the tissue was friable.

“Friable in medical jargon is cancer,” Barned says. “Always, invariably cancer.” And on February 7, 2017, the pathology results confirmed that she had NSCLC.

Heartbreak and Hope

Barned was referred to a tertiary care center, where she would get specialized treatment. Soon, another bronchoscopy found a positive lymph node, pushing the diagnosis to “at least Stage III.” Barned’s doctors also arranged for a video-assisted thoracoscopy to get a better look inside her lung and take additional biopsies.

“I went to the oncologist thinking I was Stage III, that I would do chemo to shrink the mass and then get a lobectomy,” Barned says. But in that meeting, also attended by her Jamaican boyfriend, David, and surgeon father, she learned that she already had Stage IV cancer.

Unbeknownst to Barned, her doctors had sent out her biopsy sample for biomarker testing, which identified a mutation in the ALK gene, one of the biomarkers examined in NSCLC. Fortunately, targeted medications are available for that mutation, and Barned would have to be on one of them for the rest of her life, her oncologist explained. She added that the treatment was palliative, not a cure, and teratogenic, meaning it could cause birth defects, so she wouldn’t be able to have children.

Barned was devastated. She and her dad both cried—“the first time I ever saw my dad cry in my entire life”—while David sat in shock.

“To hear, ‘Oh, it’s Stage IV,’ which means it’s terminal, which means that my life expectancy is just—what is my life expectancy?” Barned says. “I have my person I want to spend the rest of my life with. We’ve already spoken about marriage and kids, and now everything is coming to a screeching halt.

“On top of that, I had just started residency. And now cancer? How am I going to do all of this? And the other thing: If you stop working, you don’t have insurance. And if you don’t have insurance, you can’t do treatments.”

After the onslaught of difficult news, Barned and David decided not to wait, and her sister and residency friends threw together a wedding for them two weeks later—“sweet and small, like pandemic-sized before the pandemic.”

Finding a Stage IV Future

The targeted treatment Barned’s oncologist wanted to start her on had not yet been designated as a first-line treatment, and Barned’s insurance refused to pay for it. That meant starting on an older ALK inhibitor—one pill twice a day. Barned’s first dose caused “horrible, horrible, horrible” diarrhea. But this common side effect wore off, and Barned was able to complete her residency, even achieving the accolade of chief resident.

Barned was on the first med for five years—several years longer than most patients, she says—before the cancer spread to her brain in 2022. She switched to the treatment originally suggested, by then a first-line option, which she remains on today.

Throughout it all, David has been her rock, making sure Barned takes her meds and accompanying her to every appointment, including sitting in the car and FaceTimeing when the pandemic prevented him from joining her indoors. “When my fatigue was ridiculous, he researched and made different juices to give me pick-me-ups,” Barned says. “He cooked different meals. He put turmeric in everything because he read that turmeric has anticancer properties—I’ve gotten used to everything being yellow.”

But the years since have not been easy. The calculus of cancer is different for a thirtysomething than it is for a sixtysomething. “As a young person, I didn’t really get my whole career set up. I didn’t have private insurance or disability insurance,” she says. “And now I am ineligible. So if something were to happen to me now, how would I be able to pay for my living expenses?”

And then there’s the general life stuff. “It makes planning for the future fuzzy. I struggled with ‘Do I buy a house, knowing that I definitely won’t be around for 30 years to pay off the mortgage?’” At 33, she wouldn’t let herself think about reaching 40 because it was seven years away. So when she turned 40 last fall, she celebrated with a trip to Bali with friends “because this was a milestone I didn’t think I was gonna reach.”

As for her career, Barned loved cardiology going into residency, but “afterward, it was like, It doesn’t make sense for me to do any sort of specialty because that is going to be at minimum three additional years, much less to be in a program that’s going to require 80-hour weeks,” Barned says. Instead, she settled on being a generalist and now works as a hospitalist at Anne Arundel Medical Center in Annapolis, Maryland, caring for hospitalized patients.

“Not enough thought [is given to] young cancer patients, what recourse they have,” she adds, noting that older patients have lots of resources, including Medicare, because cancer is traditionally a disease of the old.

Advocating for Lung Cancer Knowledge

Barned is active with GO2 for Lung Cancer (GO2) and the Lung Cancer Research Foundation, among other advocacy organizations. And she has been busy promoting GO2’s Lung Cancer Voices Summit in Washington, DC, held March 3 to 5, where lung cancer advocates share their stories with their congressional representatives, who make federal funding decisions.

She also advocates for more widespread knowledge about lung cancer. For example, most people who hear that she has cancer assume it’s breast cancer because of her age. She is quick to point out that lung cancer kills more women than breast cancer and nearly as many people as breast, colon and prostate cancer combined. Yet annual lung cancer research funding through the Department of Defense Congressionally Directed Medical Research Programs is a mere $25 million, while breast cancer receives $150 million, prostate cancer receives $110 million and ovarian cancer, which is far rarer, receives $45 million. Lung cancer needs to “catch up with the other cancers that are more well-known but kill less people,” she says.

Part of the problem, Barned notes, is that lung cancer has had such a deadly prognosis that there haven’t been enough survivors to tell their stories. In addition, the stigma of smoking and its link to lung cancer have made family members of those who died reluctant to take up the cause. Lack of education has led to the underutilization of available therapies, and only 6% of people eligible for lung cancer screening with annual low-dose CT scans are getting them. Plus, screening is limited to smokers and former smokers “even though this is a disease that can affect anyone,” she says.

Among newly diagnosed lung cancer patients, roughly 20%, like Barned, have never smoked, and that proportion is growing. “Alarmingly, lung cancer is being diagnosed in young women a lot more than in young men and in a lot of young women who never smoked,” she says. And many people with Barned’s mutation are former runners, like her. That raises a question about what environmental factors might be linked with this cancer.

 

A Representative for Others

Other reasons compel Barned to do advocacy work. Her aunt, another nonsmoker, was diagnosed with lung cancer three years after Barned was and died in July 2023. What’s more, “I realize that I had privileges that someone who looks like me would probably not have had,” she says. Among these advantages are having highly trained, caring doctors who listen to her, being treated at a top medical institution and, as a medical doctor, being health literate.

“As much as I am not technically African American, I am Black, and I can be a good representative for them,” she says. Currently, she is learning more about the history of health disparities “so that I can be a better advocate and everyone can have the opportunities that I did.”

Barned particularly wants younger people to know that cancer “can happen to anyone, and they shouldn’t let a doctor discount them because of their age.” She encourages them to speak up for themselves, especially if a doctor discounts their symptoms. “What you should say is, ‘If another patient presented with these symptoms, what would your differential diagnosis be? And how have you ruled it out in me?’ And if the only quantifier is age, you can say ‘Take age out of it.’ Because age doesn’t discriminate.”