Guidance for Patients Facing Lung Cancer Treatment Decisions

Dr. Justin Gainor, director of the Center for Thoracic Cancers Program at Massachusetts General Hospital, shared guidance for patients with lung cancer facing treatment decisions in an interview with CURE.

He stressed the importance of understanding the disease, cancer stage and the intent of treatment — whether it aims to cure, reduce symptoms or manage the disease. Patients should also know the rationale for a chosen therapy, potential side effects and available alternatives. Gainor noted that sometimes there is a clear standard of care, while other times evidence is limited, making transparency essential.

Gainor highlighted that anyone can develop lung cancer, including people who have never smoked, and addressed the stigma that can affect screening rates. For patients and caregivers, he recommended writing down questions, reviewing visit notes and recording conversations with permission to support informed, productive discussions with care teams.

CURE: When patients are facing a new treatment decision, what information do you think is most important for them to feel informed and empowered?

Gainor: I think it's critical for patients to understand the disease itself, to understand the stage of the cancer and the intent of the treatment — is this intended to make it go away forever? Cure it? Is it meant to reduce symptoms but not cure it? I think those are important to clarify. In my own practice, I also think it's really important for people to understand the rationale for why we're pursuing a given therapy, what the side effects are, and what the alternatives are. Sometimes we have a clear standard of care where one drug is clearly superior, and other times we don't have that level of evidence, and it's important to be honest about that. As an academic medical oncologist who focuses on clinical trials, I also think talking about whether a clinical trial is an option and what that looks like is really important.

What do you often hear from patients with lung cancer that you wish more people understood about the day-to-day experience of care?

The first thing I would want to emphasize is that anyone with lungs can develop lung cancer. A big misconception is that people can't get lung cancer if they've never smoked, and that's simply not true. About a third of patients with lung cancer have never smoked, so this is an important public health point. I also bring this up because there's tremendous stigma associated with lung cancer. People commonly just associate it with smoking, and that has major implications for screening. Lung cancer screening is critical because it saves lives, but rates are far lower than they should be nationally. Only about 18% of eligible people are screened. We need to screen individuals roughly 50 to 80 years old who have a tobacco exposure of roughly 20 years or more, using a simple CT scan.

For patients and especially caregivers trying to make sense of all these complex options, what advice do you have for having productive conversations with your care team?

In my practice, I really encourage people to write things down. It's a series of conversations, and it's unusual to cover everything in one visit, especially at the time of initial diagnosis. It's hard to process everything and come up with questions on the spot. Writing things down is very helpful. I encourage patients to follow up on the notes we write or to record my conversation — always asking permission for that — and I've found that both are very helpful.

Transcript has been edited for clarity and conciseness.

For more news on cancer updates, research and education, don’t forget to subscribe to CURE®’s newsletters here.