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Lung Cancer Care: Are All My Options Being Considered?

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Dr. Narjust Florez from Dana-Farber Brigham Cancer Center and Harvard Medical Schol explains why treatment options can vary by care location, how to ask the right questions about targeted therapy, immunotherapy, and clinical trials, how early trial conversations can expand options, and what patients should know about work accommodations, disability paperwork, and supportive resources.

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Transcript

Deandre White:

Dr. Florez, some patients don’t always receive the most up-to-date treatment right away. So what steps can newly diagnosed patients facing lung cancer take to make sure they are being considered for all appropriate treatment options, including targeted therapies, immunotherapies, and even clinical trials? And along with that, what key questions should the patients even be asking, such as: What are all my treatment options? Can we discuss each one, and why are some recommended to me but some are not? Finally, how can patients use second opinions and early conversations about clinical trials to make sure they fully understand every option that’s available to them?

Dr. Narjust Florez:

So, the latest and the greatest change where the patient is. Not every cancer center has all treatment options, so I’m in an ivory tower at Dana-Farber and Harvard. Where I have all the resources. So, all available options will change, unfortunately. Rural United States and the Southern part of the United States has limited resources, unfortunately. But what you said is very key. What are all my treatment options? That’s a very good question. And then, can you break them down for me? Can you write it down for me? It is very important that…

often we…I think sometimes patients hear something in the media, I want the latest and greatest from the media but it may not be the best fit. So, that’s why what are treatment options for me is the right way to start. For example, there has been a lot of data about this vaccine for a form of lung cancer, but it’s a very rare form of lung cancer, and I’m getting patients asking me, what about the vaccine? So then we explain, yes, that’s the latest. But for this subtype of lung cancer. So, it’s not like I’m not listening to you, yeah, I wish I could have a vaccine for every type of lung cancer, but this is why it’s not a good fit for you.

Clinical trials, we have to eliminate the stigma around clinical trials and the misbelief. Most oncology trials are non-placebo trials. So where are placebo trials? When the patient gets active therapy versus a sugar pill? That’s not oncology. Most of the trials in oncology are new drugs or new combinations of drugs versus other combinations. Most patients get treatment.

And populations of color often are not offered clinical trials due to provider bias. So what can patients do? They can ask, what are my options for clinical trials? I’m going to tell you the story of one of my heroes, which is one of my patients. I’m walking down the cancer center. I think I was going to get a coffee, and she stopped me, and she says, can you be my doctor? And I was like, hi, how are you? I’m Dr. Florez. And then we started talking in the hallway. And I was like, well, I don’t know what kind of cancer you have, like, I only treat lung cancer. But I was like, has somebody offered you a clinical trial? And she’s like, no, I don’t want to be part of a clinical trial. And then I sit down, and I went beyond the no.

Because of this myth about lung cancer. I’m going to see her tomorrow. She has 36 cycles in that trial, which is a pill once a day. And what is 36 cycles? It’s three years. And she’s my shero, that I applaud her, because she went and found another woman of color that was walking in a cancer center, randomly introduced herself and said, can you be my doctor? I Googled you. And then she listened to go beyond the no of what her perceptions for clinical trials were. And now she’s spreading the gospel of clinical trials. She’s in the waiting room, and she’s like, “have you asked your doctor about clinical trials?”

Because clinical trials often offer the opportunity to get access to drugs that would take 10 years to get FDA-approved. And I do what I preach, because my father was diagnosed with cancer two years ago, and he’s in a clinical trial, right? So there’s no just preaching, you’ve got to do what you’re saying. 

So, are clinical trials are an option for me? And they’re not only drugs, there are clinical trials for many things. We’re doing exercise clinical trials. Patients are getting a bike at home to have a dedicated routine for exercise. So, it goes beyond drugs. There are clinical trials for supportive care, for exercise, for meditation, for wellness.

And all of those sometimes provide extra support, fees for transportation, a specialized scheduling team, a specialized nurse. When patients often come off clinical trials, they feel like they have been downgraded. They’re like, oh, now I go to standard of care? So, ask, I think for our patients asking, because sometimes unconscious bias affects the doctors that treat you, all providers. Nobody is immune to unconscious bias.

Deandre White:

Thank you for that, Dr. Florez. And I do have a follow-up question. So, when it comes to understanding treatment options, it’s very important that patients understand also the social factors that can influence their options. So, while we’re talking about clinical trials especially, some trials may have very strict protocol guidelines and demands for visits that may be enough to render some patients ineligible. So, from a provider’s perspective, how should the conversation go between you and a patient when discussing options that may be, in some ways, unrealistic for some of your patients?

Dr. Narjust Florez:

I think being real. I think being real is very important. Being real with the patients and most trials’ consents have the schedule. They have a schedule table. And then I have patients who are like, “oh, I want to be part of the clinical trial.” And like, stop and think about it. You have to be here every week and you live in Maine, which is 5 hours away. And the winter is coming. So just being in reality is important because patients want to do everything they can. Why not? They have been diagnosed with lung cancer. I want to do everything I can, but bringing that touch of reality, I think, is very important.

And patients, one thing, one tip here, [ACT]IVATION tip is: when you sign a screening consent for a trial, you’re not going in the trial right away. You’re signing consent to be screened for the trial, so you have several weeks to make a final decision in the trial.

So you can sign consent. Take the consent home, read it with your family, understand what are the requirements for transportation, for infusions, for side effects, because one side effect may be acceptable for one patient may not be acceptable for another patient, right? So, when you sign the screening consent for a trial, you’re not going in the trial. They’re screening you. And also, patients can come off trials anytime. And the relationship with your provider should not be affected. And if the relationship with your provider got affected because you decided to come out of a clinical trial, you’re going to find yourself a new doctor. This is not personal, this is your health, okay? 

So, that is very important. Another thing is it’s very good to start thinking what you’re going to need from work. I ask my patients, start with FMLA. Bring the handicap. Let’s fill everything, because it takes weeks to get it completed. Let’s start right away.

Let’s do the docket thing, Aflac, if you want to go on disability, they start thinking about that. Because all that paperwork takes a long time. It takes weeks to get disability, it gets the FMLA paperwork, all of that. So that should be in the second visit, if not the first visit, which the discussions start about that and social work. Social work referrals or patient resources referrals are part of cancer care. There are a lot of resources that I’m not aware of because they change. These are grants from the government, from foundations. They change every day. 

So, asking to meet with a social worker doesn’t mean that you are too poor, that doesn’t mean that you are not a good doctor. Social workers, a lot of them provide emotional support, guidance, and a different voice, a different voice than the doctor. Somebody that has been trained for this. 

So I think asking for a social worker, bringing all the paperwork ahead of time, planning for FMLA, planning for your own disability is better to have the paperwork and don’t need it, than need it and don’t have it, because cancer care is extremely expensive, and that needs to be taken into account, not only what you don’t earn, but also what you have to pay out of pocket. 

Like parking, tolls, food in the hospital, all of that needs to be taken into account as a barrier. And despite the food in the hospital being awful, it’s still very expensive.

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