Tag Archive for: newly diagnosed lung cancer

How Should Newly Diagnosed Lung Cancer Patients Deal With Disease Stigma?

How Should Newly Diagnosed Lung Cancer Patients Deal with Disease Stigma? from Patient Empowerment Network on Vimeo.

How can lung cancer patients and advocates fight lung cancer stigma? Dr. Lecia Sequist shares her perspective about why a stigma has developed her advice for all people to start turning the tide against lung cancer stigma.

Dr. Sequist is program director of Cancer Early Detection & Diagnostics at Massachusetts General Hospital and also The Landry Family Professor of Medicine at Harvard Medical School.

[ACT]IVATION TIP:

“…spread the word about lung cancer. Whether or not you have lung cancer, maybe someone you know has lung cancer, but just tell people, lung cancer can happen to everyone, anyone. Lung cancer can happen if you smoked, if you never smoked, anything in between. Anyone who has lungs can get lung cancer.”

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Transcript:

Lisa Hatfield: 

Dr. Sequist, how should a newly diagnosed patient facing lung cancer respond in situations where they encounter lung cancer stigma? There’s a stigma that surrounds lung cancer sometimes. How would you recommend that they deal with that?

Dr. Lecia Sequist:

There’s this…in my opinion, there’s a stigma that surrounds lung cancer all the time, and it’s unfair. And I think if we look back, there were a lot of public awareness campaigns on TV and in magazines in the 1980s about quitting smoking, and you probably remember these ads, it showed people breaking cigarettes in half. And I think the intention of those was good, that they were trying to explain to the public that smoking could be harmful for your health, but it was just much too simplistic, because quitting smoking is really hard. It’s an addictive substance.

Nicotine is addictive, and it’s very…the way to treat addiction is usually not to just say, “Don’t do that, don’t do that.” There’s medically more sophisticated ways to treat addiction. But I think the flip side of that awareness campaign that smoking can be harmful for your health is it really ingrained in our culture this very deep-seated thought that if you choose to smoke, you’ve made a bad choice. And that’s just…it’s so problematic because most people didn’t choose to smoke, it was basically provided to them in these very complex and high-level targeted campaigns from the tobacco companies. And most people would like to choose to quit smoking if they are smokers, and they can’t because it’s an addiction, and it’s very challenging to quit. So basically, I think this is all to say the stigma around lung cancer comes from this misguided, false impression that a lot of Americans hold that lung cancer is because people made a bad choice to smoke or to not quit smoking.

And so it all comes together to make people think that those who get diagnosed with lung cancer did something wrong to deserve it, and that’s just not true. Nobody deserves to get cancer of any type. And lung cancer patients do suffer this unique blame that is not necessarily placed on other patients with other types of cancer, it’s really very unique to lung cancer. And it can be harmful for patients in many ways, it can be harmful in interpersonal interactions, but it also leads to policies and the whole way that our care system is set up that disadvantage lung cancer patients compared to other types of cancer patients. So there are a lot of people working hard on this problem, but something that you can do…

I guess my activation tip for this question would be to just spread the word about lung cancer. Whether or not you have lung cancer, maybe someone you know has lung cancer, but just tell people, lung cancer can happen to everyone, anyone. Lung cancer can happen if you smoked, if you never smoked, anything in between. Anyone who has lungs can get lung cancer. And we have to take the stigma away from this disease. Nobody deserves to have lung cancer. It’s not something that people cause to happen to themselves, and they certainly shouldn’t be blamed if they are finding themselves in a position where they have lung cancer. So just spreading the word, lung cancer can happen to anyone, anyone with lungs can get lung cancer, I think can help start to change the perceptions. 


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How Do You Break Down Lung Cancer Diagnosis to New Patients?

How Do You Break Down Lung Cancer Diagnosis to New Patients? from Patient Empowerment Network on Vimeo.

How might a lung cancer diagnosis be explained to new patients? Expert Dr. Lecia Sequist from Massachusetts General Hospital shares how she breaks down the the tests involved in non-small cell lung cancer (NSCLC) diagnosis and treatment, advice to patients, and best practices she’s learned in communicating information to patients.

Dr. Sequist is program director of Cancer Early Detection & Diagnostics at Massachusetts General Hospital and also The Landry Family Professor of Medicine at Harvard Medical School.

[ACT]IVATION TIP:

“We know that not all patients are offered genetic testing. And if you have a diagnosis of non-small cell lung cancer, or especially the most common subtype of that called adenocarcinoma, genetic testing is most likely an important part of figuring out your treatment. So be sure to ask your doctor if that’s been done and if it hasn’t, should it be done.”

Download Resource Guide

Download Resource Guide en español

See More from [ACT]IVATED NSCLC

Related Resources:

Do Lung Cancer Screening Guidelines Differ for Certain Populations

Do Lung Cancer Screening Guidelines Differ for Certain Populations

Can Artificial Intelligence and Machine Learning Help Advance Screening for Lung Cancer

Can Artificial Intelligence and Machine Learning Help Advance Screening for Lung Cancer

What Are the Noted Disparities in Lung Cancer Screening and Access

What Are the Noted Disparities in Lung Cancer Screening and Access


Transcript:

Lisa Hatfield:

Dr. Sequist, you have a new patient coming into your office just diagnosed with non-small cell lung cancer. How do you explain to that patient? I’m sure they’re wide-eyed and fearful and afraid. How do you explain to the layperson what that is and then the subsequent treatment that they might be experiencing in the coming months with a new diagnosis?

Dr. Lecia Sequist:

Yeah, this is a very confusing time for most patients because they’re trying to wrap their head around what’s going on. They’re usually being fed information at such a rate. It’s like drinking from a fire hose, and it’s hard to take it all in. On top of that, they may not be feeling well physically. So I think it is important to repeat things, to pause a lot, to ask if there are questions, and to give people an opportunity to get back in touch with you with questions later, because, of course, it’s happened to all of us. As soon as we walk out of the doctor’s office, that’s when the question pops into our brain. But non-small cell lung cancer, it’s a very common cancer. And it basically is a type of cancer that starts in the lung, but it can spread to other parts of the body.

And some of the most important pieces of information that your doctor will need to help figure out a treatment plan along with you is to get a biopsy to confirm that the diagnosis is what they think it is. And that is usually an invasive procedure where a small piece of the cancer is removed from the body so that you can look at it under the microscope, and they can confirm that it’s that type of lung cancer. And then probably a series of scans or radiology tests where they’re looking at different parts of the body, maybe with different lenses such as a CAT scan or a PET scan or an MRI. Those are just different types of radiology exams to see if the cancer might have spread to any of the different places.

And for lung cancer, we usually try to look head to toe, essentially look at the whole body and get a complete picture of what’s going on. And the third important thing that doctors will need to come up with a treatment plan is to do something called genetic testing. This can be confusing for people because we’re not looking at their family. We’re not looking for genes that could have come from their parents or have been passed on to their children. We’re really looking at the genes of the cancer. And together looking at the biopsy, the genes that are activated within the cancer, if any, and where the cancer might be in the body, that helps the doctors put together a treatment plan of how to attack the cancer.

Lisa Hatfield:

Great. Thank you. Do you have any tips specifically for patients when they’re first diagnosed?

Dr. Lecia Sequist:

Yeah. My activation tip for someone with newly diagnosed lung cancer would be to make sure that they’re asking their doctor if genetic testing should be done on their cancer. We know that not all patients are offered genetic testing. And if you have a diagnosis of non-small cell lung cancer, or especially the most common subtype of that called adenocarcinoma, genetic testing is most likely an important part of figuring out your treatment. So be sure to ask your doctor if that’s been done and if it hasn’t, should it be done. 


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Expert Advice for Recently Diagnosed Lung Cancer Patients

Expert Advice for Recently Diagnosed Lung Cancer Patients from Patient Empowerment Network on Vimeo.

A lung cancer diagnosis can be overwhelming. Lung cancer specialist Dr. Estelamari Rodriguez shares key advice for recently diagnosed patients, including tips related to essential testing and preparing for appointments.

Dr. Estelamari Rodriguez is Associate Director of Community Outreach – Thoracic Oncology at the Sylvester Comprehensive Cancer Center, University of Miami Health System. Learn more about Dr. Rodriguez, here.

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Why Lung Cancer Patient Advocacy Is Essential

Why Non-Small Cell Lung Cancer Patients Should Speak Up About Symptoms and Side Effects

Fact or Fiction? Busting Myths About Non-Small Cell Lung Cancer


Transcript:

Katherine Banwell:

What key advice do you have for recently diagnosed lung cancer patients? 

Dr. Estelamari Rodriguez:

I think that a couple of things. When it’s a diagnosis of lung cancer, it’s very overwhelming, and fortunately now there’s a lot of resources online, but at the beginning there’s a lot of information that you don’t know. So, sometimes if you go online all you do is get scared. I think that you need to answer some very specific questions from your doctor. What is your stage? And then, after your stage, my next question is; what is a molecular driver of my tumor, the sequencing of my tumor?  

In the past, we thought all the lung cancers were the same, but now we know they’re many, many different types of lung cancer. And they’re the EGFR-driven cancers, the ALK, the ROS, they’re all different, they all have different treatment options. And when you go and look online, there’s organized advocacy groups around each of these mutations, and then you can get better information, and valuable kind of insight from the information that is out there. So, I think the first thing is to before you go in the internet, talk to your doctor about your stage and require, not ask lightly.  

Require that your genetic mutation, your sequencing is done at the time of diagnosis of advanced lung cancer. Because that would really determine your treatment.  

So, I think that is very important for patients that get diagnosed. And then also, understand that there are a lot of resources out there, so that you need to ask for questions, bring someone with you. During COVID a lot of the clinics were closed, but we were able to have family members join virtually the visits, and now patients can come in with their family members. 

I find that having someone else in the room who wrote answers and wrote notes, will really help you kind of get the most out of your consultation. And also ask questions for the next time you come, or we have a portal where patients ask questions online. So, the first visit where you get the most questions answered, and sometimes it’s part B and part C. So, you have to keep until you feel satisfied that you understand the plan. We also tell patients that doctors don’t know everything, sometimes the doctor that you have is not the one that you feel you have a connection with. So, know that you have rights, and there are other doctors out there, and you can get second opinions. 

So, you are the best advocate, it’s your life, and you can rely on your doctor, and their physician extenders, physician assistants, nurses, to get as much as you can from that. But also, look outside of your institution, maybe there’s a better option for you.