Registry aims to treat lung cancer during pregnancy based on data, ‘not just a hunch’
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Narjust Florez, MD, vividly recalls the urgent message she received from a colleague 3 years ago.
“You’ll never believe what has happened,” the colleague told Florez, proceeding to describe how a young pregnant patient of hers had been diagnosed with lung cancer. “You’re the one who specializes in younger patients — you’re my last hope.”
Florez — associate director of the Cancer Care Equity Program and thoracic medical oncologist at Dana-Farber Brigham Cancer Center, as well as assistant professor of medicine at Harvard Medical School — agreed to take over the patient’s care.
“I conducted a literature search, mostly to know what to do with this patient,” Florez told Healio. “That’s when I discovered there was almost no data on this.”
Florez’s inquiry on behalf of one patient quickly evolved into deeper concern for the increasing number of young pregnant women with lung cancer, the poor outcomes they traditionally achieve with chemotherapy and targeted treatment, and the lack of available evidence to guide their care.
To fill this knowledge gap, Florez and colleagues in her lab created the first international registry that focuses on the diagnosis and treatment of lung cancer during pregnancy. Clinicians around the world will be able to contribute case information.
Updates published at 6-month intervals will provide insights into estimated incidence and prevalence rates of lung cancer among pregnant women, describe maternal and fetal outcomes, and offer guidance about optimal treatment strategies for this population.
“Every day I have younger and younger women coming to my clinic,” Florez said. “We really want to get the word out so providers can enter their cases and we can support these women ... because given the increasing rates of lung cancer among young women, this situation isn’t going to get better. It’s only going to get worse.”
‘What is happening here?’
When Florez took over the care of the initial patient, a literature search revealed only 66 cases of pathologically confirmed lung cancer during pregnancy.
“A lot of these were from years ago,” she said. “Much of the data was extrapolated from breast cancer, although it shouldn’t be. They are very different diseases.”
The patient had a genetic mutation, but Florez found no data on the use of targeted therapies for lung cancer during pregnancy so she opted against that treatment approach.
Florez spoke with the patient, conferred with her obstetrician and ultimately decided on chemotherapy.
The patient delivered her baby at term, but the relief Florez felt didn’t last long.
“I got a WhatsApp message 2 days later from someone in Italy who had a pregnant patient with lung cancer and was asking me for advice,” Florez said. “I thought, ‘What is happening here? I haven’t even published on this. How do people know?’”
As word spread about Florez’s interest and expertise in this area, she received messages from clinicians in Brazil, Mexico and the Philippines who sought her guidance about how to treat pregnant women with lung cancer.
Then she encountered a case that strengthened her resolve to take action.
Two months after the U.S. Supreme Court issued its ruling in Dobbs v. Jackson Women’s Health Initiative — allowing individual states to decide parameters around abortion services — a young woman with metastatic lung cancer was facing an unplanned pregnancy. She had been on a targeted therapy regimen and had been taking an antiseizure medication that would be toxic to a fetus.
The woman experienced a seizure within 48 hours of being taken off that medication, which fell under the FDA’s Category X, meaning the risks when administered to a pregnant woman clearly outweigh potential benefits.
In fact, ultrasounds revealed permanent damages to the neural tube of the fetus.
The patient decided to terminate the pregnancy, but Florez could not find a practice willing to do it.
“This woman has metastatic lung cancer with brain metastases and the pregnancy was not viable, but nobody would do it,” Florez said. “She had to drive [several states away] to terminate the pregnancy.”
‘Not just a hunch’
Florez’s experience with this patient convinced her she needed to do something to address the larger issue.
“I realized I needed to create a registry that is able to collect cases and create guidelines so physicians have some data to guide these decisions on a global scale,” she said.
Since its launch in December, more than 15 cases have been added to the registry.
“Anyone in the world can enter cases,” Florez said. “To avoid legal repercussions in countries where abortion is illegal, there is no linkage between the patient’s identity and the information we collect. This is for science and for patient care, and only for that.”
It takes about 20 minutes to report a case to the registry. Collected information includes the cancer type, mutation profile, gestational information, treatments the patient received during pregnancy, and pregnancy outcome.
Data also are collected about lactation, given how many cancer drugs affect breast milk, as well as about the patients’ mental health during and after pregnancy.
“We want to know how to support these women,” she said. “There is a grief to this — it can be traumatic.”
Florez intends to submit initial data from the registry for presentation at this year’s World Conference on Lung Cancer, which will be held Sept. 7-10 in San Diego.
She hopes the registry will provide insights into what has worked for these patients, what hasn’t worked, and what factors may increase risk for complications.
Florez said she hopes the registry will ensure the evidence base better reflects current treatment options.
“Targeted therapies may be safe, but we just don’t know,” she said. “We want to bring it up to date with the contemporary time. ... This way, when I give my recommendations, they’re based on data and not just a hunch.”
Clinicians who want to contribute to the database may contact Florez by email at YoungLungResearch@dfci.harvard.edu to request a link to the registry.
For more information:
Narjust Florez, MD, can be reached at Dana-Farber Cancer Institute, 450 Brookline Ave., Boston, MA 02215; email: narjust_florez@dfci.harvard.edu.
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