"You're Home": Why Young Women With Lung Cancer Are Being Missed

Narjust Florez, MD, didn't plan to specialize in young patients and women with lung cancer. The decision came from a single encounter in the clinic, during a research career that, at the time, was headed somewhere else entirely.

"For me, it all dates back to the clinic patient experience and encounter, and hearing the story is the source of motivation for research and for specialization," said Florez, a thoracic medical oncologist at Dana-Farber Cancer Institute, associate director of the Cancer Care Equity Program, and an assistant professor of medicine at Harvard Medical School, in an interview with Targeted Oncology. "I was training at the Mayo Clinic to be a phase 1 trialist… But then [an] interaction with a young patient, in which I realized the needs of this population—how the stigma of the disease negatively affected their outcomes and their survivorship—motivated me to [think] maybe a phase 1 career is not what fills my cup.”

What followed was a deliberate choice to redirect her career toward a population she saw being overlooked. "I strongly believe [you should] go where you're needed the most, and young patients and younger women, particularly, continue to be ignored and continue to be understudied and not included in clinical trials. So that led to the decision to specialize in young patients as well as women,” she said.

A Population Still Flying Under the Radar

Asked what's happening in her field that isn't getting the attention it deserves, Florez doesn't hesitate. "I think there's still not enough attention to young lung cancer," she said. "Since 2018... younger women are getting more lung cancer than younger men, and this is regardless of tobacco use." The persistence of an outdated picture of who gets lung cancer, she argued, is doing real damage. "The fact that lung cancer continues to be associated with white older men is what I think is where the trouble is and the area that we need more attention."

That mismatch between perception and reality has direct clinical consequences. "Women face delays to diagnosis in part because there is no association of the disease with their age or their gender," Florez says. Her team's own research backs this up directly. "In our own study, called the LEAD study, we identify that lung cancer symptoms in young women are often misattributed to anxiety, vs lung cancer, vs [in] a man." The downstream effect of that misattribution, she said, can be severe. "What happens is that when the symptoms are misattributed, that leads to delays in diagnosis, and what could have potentially been a curable cancer becomes a metastatic cancer, and the survival is significantly shorter."

Florez is equally direct about a second, less-discussed gap in care: fertility. "Young women with lung cancer are often not given the option of fertility preservation at all," she said, "and it's not our role as doctors to decide if the patient should or should not have offspring. That's not my role. My role is to give patients options." The same silence often extends to sexual health for both women and men, she noted, despite how long many patients are now living on targeted therapies. "Now, with the [longer] therapies, patients are living 7 or 8 years on the same pill. Are we expecting these patients not to have any sexual life? Are we expecting these patients that are young not to have children, if that was their goal?" For Florez, these aren't peripheral concerns. "We talk a lot about drugs, and the drugs are important, but there are other aspects that are as important."

What She Tells Colleagues

For patients who have received a diagnosis, Florez's focus is on removing guilt. "These women have a lot of guilt. Younger patients have a lot of guilt," she said, describing how the instinct to rationalize symptoms runs deep. She actively works to interrupt that pattern with new patients.

"I often tell them, when they come to my clinic, ‘You're home. You didn't do anything. Now let's figure it out,’” she said. That extends to smoking history too. "If you did use tobacco, so what—will that change? Can you change the time back? There is no point in guilt-tripping patients.”

Beyond the emotional framing, Florez urges colleagues to think about young patients on a fundamentally different timescale than older patients. "I want my colleagues to see patients in a holistic manner—that decisions are not made for tomorrow, but decisions are made for next year. Every decision for a young patient [is] a decision that's going to affect things longer." Because young patients tend to tolerate more lines of therapy over time, today's treatment choices carry a different kind of weight. "Our older patient may get 1 or 2 lines of chemotherapy. I have a young patient right now that has been with me 10 years, and... he's [on] the seventh line of therapy. It's very important to know what the future will hold, and the decisions need to be made smartly, with no rush—because while we decide today for a young patient, there are consequences in 5 years from now."

She also encourages colleagues to ask about the practical realities that come with being diagnosed young—particularly the caregiving roles many patients are already carrying. "Ask things that are unique to young patients: childcare, elderly care. When you are a 42-year-old woman diagnosed with lung cancer, you are the primary caregiver of the world. You take care of your children if you have [them], you take care of your aging parents, and many times you take care of your husband too. So, who cares for the caregiver when the caregiver gets sick?" Florez is candid that she can't undo the structural pressures that put women in that position to begin with. "A lot of these social roles do not disappear, so providing support to patients with social work and patient resources is [key]. You cannot change the system…but I can get the resources to help them."