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How Patient-Led Advocacy Is Changing Lung Cancer Research

lung cancer-research-study-stage
lung cancer-research-study-stage

Even though it is one of the most commonly diagnosed types of cancer, there are a lot of misconceptions and stigmas attached to lung cancer.

Not all lung cancer is caused by smoking, for instance, and those in the lung cancer community stress the fact that anyone with lungs can get lung cancer. But medical professionals and researchers are learning new things, too, with the help of patient-led research studies that can help deliver better patient outcomes and quality of life. 

“Historically a lot of research was driven by investigators,” said Dr. Ibiayi Dagogo-Jack, M.D., an oncologist and researcher at Mass General, who study tumors or cell lines derived from tumors that they then explore in the lab or clinical trials with partnerships with pharmaceutical companies.

But, Dr. Dagogo-Jack says, in the last decade or so, more and more research has been informed and spearheaded by the patients themselves. 

“Patients may form these oncogene-specific groups,” explains Dr. Dagogo-Jack, referring to patients who all have a type of lung cancer caused by the same genetic marker. “They may form these groups and communities or around their shared lung cancer to inform the research questions, raise funds, help support clinical trials, and work very closely with the clinicians, and lung cancer oncologists, as well as scientists who are studying it.”

The difference in treatment

After a drug has gone through clinical trials and been approved, Dr. Dagogo-Jack says that clinicians and researchers sometimes find that the treatment doesn’t always have the same effect for the general population as it did for the patients in the study.

“What we learn with patient-led or patient-sponsored research or with patient partnerships and advocacy groups is that our patients are the ones who are experiencing the side effects of these treatments,” she says. “And so I think they’re best equipped to tell us how well a medicine is tolerated. They’re uniquely positioned to tell us what makes a study attractive for a patient to participate in and help us achieve the best balance of good science, but also serving our patients.”

Like with nearly all cancers, early detection gives patients with lung cancer the best chances of survival and quality of life. In many cases, patients aren’t eligible for a lung cancer screening unless they have a recent history of smoking, even though not all lung cancer is caused by smoking and many people who never smoked have been diagnosed with lung cancer.

Dr. Dagogo-Jack says patient-led research and advocacy groups can help make a difference here, as well. 

“One of the important things that they’re doing is raising awareness that lung cancer can occur in people who have never smoked,” Dr. Dagogo-Jack says. “Now, that hasn’t translated into policy, but I think at the individual level that can empower a patient to speak up or a primary care provider to broaden their differential when a patient is presenting with symptoms that in a different context, they might have considered lung cancer.”

Early detection shows best outcomes

There are stark differences in outcomes for patients whose cancer is caught early versus those who didn’t catch it until a much later stage.

“For some patients with the earliest stages of lung cancer — so you have a Stage IA lung cancer or Stage I in general lung cancer — that means it’s just contained in the lung,” Dr. Dagogo-Jack explains. For these patients, whose cancer is still just a nodule or mass in the lungs, with appropriate surgery or radiation, the chances of being alive at five years without evidence of cancer can exceed 80%.

The problem is that this is not the case for most patients. “Most people who have lung cancer are not detected when it’s just contained in the lungs because they present with symptoms,” Dr. Dagogo-Jack says. When there are symptoms, that usually means the cancer has already spread. “By the time we get to a Stage IV lung cancer, that means that it’s traveled outside of the lungs and it’s metastatic.”

At that point, the chance of survival at five years is less than 5%. 

“Lung cancer is a leading cause of cancer-related mortality, but it isn’t the leading contender for research dollars,” Dr. Dagogo-Jack says. “And I think that it’s because of this stigma. Increasing awareness is something that is being done by doctors too, but I think, for the most part, it’s really being led by our patients and our patient advocacy groups, getting the idea out there that anyone with lungs can get lung cancer. And I think that is in and of itself a powerful message.”

The good news is that treatments, especially targeted and localized treatments at the early stages of detection, are improving. “And so I think it’s important to note that as we are learning more about the makeup of the cancer, and as we are wedding our clinical efforts with laboratory efforts, we’re finding more selective and broader ways to treat lung cancer.”

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