Enhancing Lung Cancer Care for Black and Latinx Patients | Tackling Challenges, Implementing Solutions

Enhancing Lung Cancer Care for Black and Latinx Patients | Tackling Challenges, Implementing Solutions from Patient Empowerment Network on Vimeo.

What are challenges and solutions to quality care for Black and Latinx non-small cell lung cancer (NSCLC) patients? Expert Dr. Samuel Cykert from UNC School of Medicine discusses challenges, solutions, and proactive patient advice toward quality care.

[ACT]IVATION TIP

“…for things like biomarker testing and advanced treatments, you need to go to the closest high volume center.”

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Improving Biomarker Testing Access for Rural Lung Cancer Patients

Improving Biomarker Testing Access for Rural Lung Cancer Patients

How Can We Advance Equitable Access to Precision Medicine in Lung Cancer Care?

How Can We Advance Equitable Access to Precision Medicine in Lung Cancer Care?

What Urgent Innovations Can Advance Lung Cancer Precision Medicine?

What Urgent Innovations Can Advance Lung Cancer Precision Medicine?

Transcript:

Lisa Hatfield:

Dr. Cykert, what specific challenges do Black and Latinx patients with lung cancer often encounter in advocating for themselves within the healthcare system, and how can they navigate these challenges effectively to ensure they receive equitable and quality care?

Dr. Samuel Cykert:

Yes, and in our past research we discovered that there are certain implicit biases and communication biases that affect patients of color, and because of that, I think it’s really important to approach the clinical encounter with cancer care decision-makers with enthusiasm, that meaning making a direct statement that I’m very enthusiastic about getting care for my lung cancer, I’m very enthusiastic about biomarker testing, tailored therapy, surgery and research protocols. So please consider me for all those results, and I know what I said was just a mouthful.

And even if you can remember to just start with, I’m very enthusiastic about getting treatment, and biomarker testing would be good and I’m positive about it, how do you feel about it? Engage the clinician in the conversation so they really know that you’re part of the team and they’re part of the team, and you’re ready to move toward excellent treatment and you’re willing to consider even research stuff.


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Tailored Approaches to Lung Cancer | The Crucial Role of Biomarker Testing

Tailored Approaches to Lung Cancer | The Crucial Role of Biomarker Testing from Patient Empowerment Network on Vimeo.

How does biomarker testing factor into personalized non-small cell lung cancer (NSCLC) treatment? Expert Dr. Samuel Cykert from UNC School of Medicine explains different ways that biomarker testing is used in personalizing treatment approaches and proactive patient advice for biomarker testing.

[ACT]IVATION TIP

“…have access to personalized medicine, whether it’s a surgical biopsy or a radiologic biopsy by a radiologist, you always make the statement. I would like biomarker testing for my biopsy specimen, and I would like to consider the testing that goes along with research protocols too.”

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Related Resources:

Catalyzing Lung Cancer Care | The Transformative Impact of Early Biomarker Testing

Catalyzing Lung Cancer Care | The Transformative Impact of Early Biomarker Testing

Closing the Gap | Ensuring Equitable Access to Lung Cancer Biomarker Testing

Closing the Gap | Ensuring Equitable Access to Lung Cancer Biomarker Testing

Unveiling Racial Disparities in Early-Stage Lung Cancer Treatment

Unveiling Racial Disparities in Early-Stage Lung Cancer Treatment

Transcript:

Lisa Hatfield:

How does biomarker testing contribute to the personalized treatment approach for patients with non-small cell lung cancer, particularly in identifying actionable mutations like EGFR, BRAF, and other mutations?

Dr. Samuel Cykert:

Yeah, great, great question. Because some of these biomarkers tell you that there’s a specific treatment that will really, really work for you, and some of the biomarkers tell you there’ll be specific treatments that don’t.

And so the importance of them have to do with, again, you talk about personalized treatment, personalized treatment is getting a treatment that works for you, getting a treatment that works for the genetic component of your tumor, and so it’s really, really important that you differentiate, because again, there are studies that show certain immunotherapy medicines like pembrolizumab (Keytruda) and nivolumab (Opdivo), that those medicines will work in certain situations, but in other situations, they really don’t, and there are other medicines, for instance,  tyrosine-kinase inhibitors that work, where in other situations, they don’t, and so it really is the definition of personalized medicine for lung cancer, knowing what’s going to work and what’s not going to work, and what your odds are in certain situations.

My activation tip is to have access to personalized medicine, whether it’s a surgical biopsy or a radiologic biopsy by a radiologist, you always make the statement. I would like biomarker testing for my biopsy specimen, and I would like to consider the testing that goes along with research protocols too.


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Unveiling Racial Disparities in Early-Stage Lung Cancer Treatment

Unveiling Racial Disparities in Early-Stage Lung Cancer Treatment from Patient Empowerment Network on Vimeo.

For early stage lung cancer treatment, what are root causes of racial disparities? Expert Dr. Samuel Cykert from UNC School of Medicine discusses key findings from UNC research and proactive advice to patients to help reduce disparities.

[ACT]IVATION TIP

“…even in advanced disease, there are some excellent responses to these therapies, so getting back to what do I say to patients, don’t feel doom, be enthusiastic about, I really want treatment. I really want to go ahead and see what you can do for me. And even if that involves research testing and protocols. So enthusiasm is important. And the other thing that’s important is, again, because of some of these implicit biases I mentioned, actually asking positive questions to the clinicians and staff saying, I feel really good about going ahead and doing what I can do, how do you think I’ll do? Enlist them as part of your team, get rid of their gloom and doom too.”

Download Resource Guide | Descargar guía de recursos

See More from [ACT]IVATED Non-Small Cell Lung Cancer

Related Resources:

Catalyzing Lung Cancer Care | The Transformative Impact of Early Biomarker Testing

Catalyzing Lung Cancer Care | The Transformative Impact of Early Biomarker Testing

Closing the Gap | Ensuring Equitable Access to Lung Cancer Biomarker Testing

Closing the Gap | Ensuring Equitable Access to Lung Cancer Biomarker Testing

Tailored Approaches to Lung Cancer | The Crucial Role of Biomarker Testing

Tailored Approaches to Lung Cancer | The Crucial Role of Biomarker Testing

Transcript:

Lisa Hatfield:

Dr. Cykert, could you elaborate on the key findings or insights uncovered by the UNC research team regarding the root causes of racial disparities in the treatment of early stage lung cancer patients, and also …how do these findings contribute to our understanding of healthcare disparities and inform future interventions in lung cancer?

Dr. Samuel Cykert:

Yeah, and first of all, I want to make a statement up front that in doctor’s treatment of lung cancer and other cancers and other chronic diseases, there is not malevolence here, okay, because doctors go to medical school, the vast majority go as idealists, and so I think it’s really important not to place blame here, but there’s a way that the system is set up, both in terms of health insurance, economics, other socio-demographic factors, where people of color are disadvantaged.

And then you add to that an element of implicit bias, we all have implicit bias, different kind of implicit biases, and in a study that we published in the Journal of the American Medical Association in 2010, we showed that clinicians who take care of lung cancer tend to not want to take risks on patients who aren’t like them, who they don’t feel comfortable communicating with, and so Black patients who had two or more significant comorbidities at the time of surgery virtually never got lung cancer surgery, whereas white patients with two or more comorbidities still did.

So a lot of that had to do with the clinician side of thinking, well, I don’t know if, I mean, you’re kind of sick to start with, and I don’t know how well you’d do, and so the clinician isn’t aggressive in explaining things about surgery and pushing toward surgery, where with a patient that’s like them, when there’s a family member in the room saying, “Doc, Doc, what are you going to do about dad’s cancer?” Then in those cases, the clinical decision making is more aggressive, and so that was a big thing, and another thing that we discovered is if Black patients felt that the shared communication, that the discussions were poor, they were much, much more reluctant to go to surgery, so there’s a communication thing, making sure that people are understanding each other.

And you have to remember a lot of times when people hear the word cancer, they automatically shut down and they start listening, and then on top of that, if the communication and the connection is poor, then the listening and discussion is even worse, so those were two big areas where we found that Black patients were disadvantaged even beyond the socio-economic stuff. As far as interventions go, based on that, based on two things, based on that 2010 trial and based on a community group that I’ve been a part of through the years called the Greensboro Health Disparities Collaborative in Greensboro, North Carolina, that community group has pointed out three ways to overcome disparities in cancer and other medical care.

One way is real-time transparency. When you think about it, all the studies that show disparities in cancer are studies that look at data that are four or five or six years old. Well, if you have cancer and the data are four or five, six years old, if you don’t act on it, you’re dead, and so we need to use real-time data, and there’s no reason we can’t do that today with electronic health records and all the digital data floating around health systems, we can create real-time registries in order to take better care of cancer patients. So that’s one thing.

The second thing that the collaborative pointed out was accountability, I mean, the primary care doctor can’t say, well, it’s the oncologist. The oncologist can’t say, well, it’s the surgeon. The surgeon can’t say, well, it’s the radiation oncologist and the primary care doctor. We can’t diffuse responsibility. We have to have accountability. And so the way we put together accountability in our intervention is we gave feedback to the cancer care teams, and we not only said, this is how well you’re doing with patients completing surgery and patients completing their other treatments, we break it down by the disadvantaged group, so we say, here’s how your white patients are doing, here’s how your Black patients are doing, here are how your Hispanic patients are doing.

Whatever the disadvantaged group is, we compare. And the other great thing about doing that is when you get, for instance, quarterly quality data about how you’re doing with treatment in different groups, you can sit in the room and you can start saying, well, what’s going on here, why are these differences existing? And in one of our studies, for instance, Cone Health in Greensboro noted that in one particular geographic area, transportation was horrendous and patients missed a bunch of appointments, and then they created their own transportation van when scheduling appointments, and the disparity went away, that was based on the transportation problem. Okay? So by looking at those things in real time, you can iterate and decide how you’re going to fix that. So that’s the second thing, accountability.

And the third thing that the group brought up was communication. Doctors often talk in medical jargon. Patients don’t understand. Patients don’t understand and they interpret the conversation in the wrong way. That fosters mistrust, and also, you have that idea that I mentioned earlier, that patients don’t process things after they hear the cancer word, and so instead of just communication right now in this acute setting, you need engagement and re-engagement, and that’s where we brought in a specially trained navigator who was aware of these communication problems, who was aware of particular problems that might affect patients of color, and that navigator would use that knowledge to engage and re-engage patients over time, to bring them back into care.

And just going back to one of my earlier points on real-time transparency, in our studies, we actually built a real-time system where we followed patients over time, and if a patient missed an appointment, an automatic warning would come up that said to the navigator, you need to re-engage the patient, but the other thing we did to deal with implicit bias and clinical inertia is we set time limits in the system.

So if care wasn’t progressing the way we thought it should progress on a time scale that was actually established by medical stakeholders in that community, if, for instance, if the patient didn’t get a follow-up visit or a test within 30 days, bam, a warning came up. If the patient didn’t get a biopsy within 60 days, a warning came up. If they weren’t scheduled for surgery or definitive care within 60 days, a warning came up.

So we not only engaged the patient when the patient was missing, but we engaged the clinical team and said, did you really mean for these delays to happen? And with our intervention, in terms of completing care, we went at baseline from 70 percent, compare completion, 70-ish percent for white patients, compared to 60 percent for Black patients, to almost perfect care for everyone. In over 300 patients, it was 95 percent and 96 percent completing their care. So that was just a phenomenal improvement because we had real-time transparency, accountability and communication.

Lisa Hatfield:

Those are incredible statistics on how you can build this system to help eliminate some of those disparities in healthcare. Would you have any activation tips from the patient perspective? I mean, you explained this so well, do you have any tips for patients?

Dr. Samuel Cykert:

Yes. I mean, patients…first of all, patients are in a situation where lung cancer, the narrative around lung cancer over time has been one of nihilism and doom. And people think once I have the diagnosis of lung cancer, I’m dead and there’s nothing I can do about it. Well, in early stage, non-small cell lung cancer, the cure rates have gone up, especially with adjuvant chemotherapy, and now it looks like it’s going to happen with some neoadjuvant biological and chemotherapy, so things are getting better and better.

And even in advanced disease, there are some excellent responses to these therapies, so getting back to what do I say to patients, don’t feel doomed, be enthusiastic about, I really want treatment. I really want to go ahead and see what you can do for me. And even if that involves research testing and protocols. So enthusiasm is important. And the other thing that’s important is, again, because of some of these implicit biases I mentioned, actually asking positive questions to the clinicians and staff saying, I feel really good about going ahead and doing what I can do, how do you think I’ll do? Enlist them as part of your team, get rid of their gloom and doom too.


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Closing the Gap | Ensuring Equitable Access to Lung Cancer Biomarker Testing

Closing the Gap | Ensuring Equitable Access to Lung Cancer Biomarker Testing from Patient Empowerment Network on Vimeo.

How is biomarker testing implementation going in lung cancer care? Expert Dr. Samuel Cykert from UNC School of Medicine discusses biomarker testing trends, challenges, and proactive advice for patients.

Download Resource Guide | Descargar guía de recursos

See More from [ACT]IVATED Non-Small Cell Lung Cancer

Related Resources:

Catalyzing Lung Cancer Care | The Transformative Impact of Early Biomarker Testing

Catalyzing Lung Cancer Care | The Transformative Impact of Early Biomarker Testing

Unveiling Racial Disparities in Early-Stage Lung Cancer Treatment

Unveiling Racial Disparities in Early-Stage Lung Cancer Treatment

Tailored Approaches to Lung Cancer | The Crucial Role of Biomarker Testing

Tailored Approaches to Lung Cancer | The Crucial Role of Biomarker Testing

Transcript:

Lisa Hatfield:

Dr. Cykert, can you provide an overview of the current landscape of biomarker testing implementation in lung cancer care, and highlight any key trends or challenges that you’ve identified in your research or practice?

Dr. Samuel Cykert:

Yes, if you look at the history of innovations in cancer treatment, patients of color, especially Black patients and Native Americans, also always get exposed to the innovation late compared to other patients, and I don’t want that to happen for biomarker testing and treatments, just because some of the results, especially in lung cancer are so, so good. And so what I would say right now is, number one, for advanced cancer, there are already data that show that people of color are falling behind in both initial testing and subsequent testing.

So we really, really have to work on that. But a second thing that’s happening on the innovation front, is there was a study published in the New England Journal of Medicine, just about a year-and-a-half ago, that showed that biomarker testing and treatment could possibly be effective in early curable lung cancer, something called neoadjuvant therapy, where you actually treat patients with the biologic treatment before surgery. In this case, it’s a kind of immunotherapy that works better, it works really all throughout different types of cancer, but with one particular biomarker PD-L1, it works really, really well. And so it’s looking more and more like biological treatments and testing for lung cancer are going to make a big difference.

Lisa Hatfield:

Great, thank you. I do have a quick follow-up question to that too, when I put my patient lens on, so when you talk about the biomarker testing, are all of those biomarkers tested by biopsy or can they be done via blood test, and if a patient didn’t have them done on initial diagnosis, is it possible to have it done after a patient has been diagnosed, if it wasn’t done originally, can they go back and look at that tissue to see if those biomarkers are there?

Dr. Samuel Cykert:

Yes. Right now they’re pretty much all done on tissue specimens, and so it’s important to think about it upfront because obviously you don’t want to go through a biopsy twice if you don’t have to, but it is true that as long as there’s enough tissue taken at the initial biopsy, that preserved tissue can be tested later for other biomarkers that haven’t been done.


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Catalyzing Lung Cancer Care | The Transformative Impact of Early Biomarker Testing

Catalyzing Lung Cancer Care: The Transformative Impact of Early Biomarker Testing from Patient Empowerment Network on Vimeo.

For non-small cell lung cancer (NSCLC) patients who receive early biomarker testing, what are the impacts? Expert Dr. Samuel Cykert from UNC School of Medicine discusses the benefits of biomarker testing and proactive advice for patients. 

[ACT]IVATION TIP

“…make sure you discuss with the doctor who’s doing the biopsy that I really want biomarker testing at the beginning of treatment.”

Download Resource Guide | Descargar guía de recursos

See More from [ACT]IVATED Non-Small Cell Lung Cancer

Related Resources:

Closing the Gap | Ensuring Equitable Access to Lung Cancer Biomarker Testing

Closing the Gap | Ensuring Equitable Access to Lung Cancer Biomarker Testing

Unveiling Racial Disparities in Early-Stage Lung Cancer Treatment

Unveiling Racial Disparities in Early-Stage Lung Cancer Treatment

Tailored Approaches to Lung Cancer | The Crucial Role of Biomarker Testing

Tailored Approaches to Lung Cancer | The Crucial Role of Biomarker Testing

Transcript:

Lisa Hatfield:

Dr. Cykert, what are the main benefits of early and comprehensive biomarker testing in non-small cell lung cancer patients, and how does it impact treatment, decision-making, prognosis, and overall patient outcomes?

Dr. Samuel Cykert:

And 80 percent of patients with lung cancer are diagnosed with advanced disease, and really over the last half-dozen years, biomarker testing has become so important because in advanced disease, biological treatments have actually shown good benefits for a lot of patients and for some patients, just explosive benefits. And so on the treatment side, it’s very important to get a battery of biomarker tests, just to understand, as a patient, if you’re eligible for one of these treatments that are really good in terms of improving length and quality of life.

The second reason they’re important is a lot of work is being done on the research side of biomarker testing and biomarker treatments, so if a patient is to qualify for a really strong research study, biomarker testing is just something that’s very, very important. And so on the current treatment side and on the research side, there are really, really tremendous reasons to go ahead and get tested, and so my tip is since not every patient gets tested, make sure you discuss with the doctor who’s doing the biopsy that I really want biomarker testing at the beginning of treatment.


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Becoming an Empowered and [ACT]IVATED Lung Cancer Patient

Patient Empowerment Network (PEN) is committed to helping educate and empower patients and care partners in the lung cancer community. Lung cancer treatment options are ever-expanding with new testing and treatments, and it’s vital for patients and families to educate themselves with health literacy tools and resources on up-to-date information in lung cancer care. With this goal in mind, PEN initiated the [ACT]IVATED Non-Small Cell Lung Cancer program, which targets to inform, empower, and engage patients to stay abreast of the latest in lung cancer care.

The [ACT]IVATED Non-Small Cell Lung Cancer program is geared to newly diagnosed lung cancer patients, yet it is beneficial at any stage of disease. [ACT]IVATED helps patients and care partners stay abreast of the latest options for their lung cancer, provides patient activation tools to help overcome barriers to accessing care and powerful tips for self-advocacy, coping, and living well with cancer.

How Can BIPOC NSCLC patients overcome discrepancies in the timelines of their diagnosis?

Lung Cancer Stigma and Disparities

Lung cancer is unique in comparison to other types of cancer. Overcoming the lung cancer stigma in the U.S. that was partially created by TV advertising campaigns to quit smoking. Cancer patient Lisa Hatfield spoke with Dr. Lecia Sequist from Massachusetts General Hospital. Dr. Sequist explained lung cancer stigma. “…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 disadvantages lung cancer patients compared to other types of cancer patients.

Though smoking can sometimes lead to lung cancer, this isn’t true for all lung cancer patients. Dr. Lecia Sequist shared some of the data about lung cancer risk and what’s still unknown about lung cancer risk. “…it’s true that cigarette smoking is one risk factor for lung cancer, but it’s not the only one. And we don’t fully understand what all the risk factors might be, but we know that there are people who have smoked a lot in their life and never get lung cancer. And on the flip side, we know that there’s people who have never smoked or who maybe quit 30, 40 years ago and will still get lung cancer. And how do we know who’s at risk?”

Access to lung cancer screening can also vary across the U.S. depending on what state you live in. Dr. Sequist shared about this key difference. “Lung cancer screening is really effective as far as finding cancer in the earliest stages. It’s not equally available across the country. Some of it has to do with there are certain states that expanded their Medicaid coverage as part of the medical care reform…and there are some states that didn’t expand the Medicaid, and then that situation translated into whether lung cancer screening was easy to get started in hospitals in that state. So there are some regions of the country, and a lot of them are in the South as well as the Western U.S., where if you want to get lung cancer screening, you may have to travel more than 30 miles or even more than 50 miles in order to get lung cancer screening.

Dr. Sequist also shares how BIPOC lung cancer patients or other underrepresented patients can guard against care disparities. “You don’t have to ask permission to get a second opinion, you can just make an appointment with a different oncologist or go to an oncologist if you haven’t seen one before. Because lung cancer is changing and treatments are more successful, and we all have to do more as a community to make sure that those treatments are offered to everyone.”

About Dr. Lecia Sequist

Solutions for Better Lung Cancer Care

Patient education and empowerment are key pieces to receiving informed and optimal care. These efforts can take many forms but include approaches like improving clinical trial access, learning more from credible resources, asking questions to ensure your best care, and helping to educate others about lung cancer.

Dr. Lecia Sequist shared about the importance of learning about lung cancer information from credible resources. “A lot of people get lost in the terminology, the medical terminology. Don’t be afraid to ask questions or go to a website that is recommended, that’s been vetted by doctors to really have good quality information to help you understand what these terms mean. There’s also a lot of misinformation on the websites, that’s why you have to go to a site that maybe your doctor or your patient network recommends to make sure you’re getting accurate information. 

And lung cancer patients and patient advocates can help continue advancements in lung cancer screening and treatments. Dr. Lecia Sequist shared advice for how to take action on behalf of patients. 

“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.”

The use of artificial intelligence (AI) has led to improvements in lung cancer screening. Dr. Lecia Sequist explained how AI has advanced the detection of  lung cancer. “The computer looks at a different type of pattern that human eyes and brains can’t really recognize and has learned the pattern, because we trained the computer with thousands and tens of thousands of scans where we knew this person went on to develop cancer and this one didn’t. And the computer learned the pattern of risk.

Patient empowerment sometimes means that patients must advocate for their best care, and Dr. Sequist shared advice about testing. “…be sure to ask your doctor if genetic testing has been performed on your cancer, and if not, can it be performed? It’s not always the right answer, depends on the type of cancer that you have and the stage, but if you have adenocarcinoma and an advanced cancer, like stage III or stage IV, it is the standard to get genetic testing and that should be something that can be done.”

[ACT]IVATED Non-Small Cell Lung Cancer Program Resources

The [ACT]IVATED Non-Small Cell Lung Cancer program series takes a three-part approach to inform, empower, and engage both the overall lung cancer community and patient groups who experience health disparities. The series includes the following resources:

Though there are lung cancer disparities and disease stigma, patients and care partners can be proactive in gaining knowledge to help ensure optimal care. We hope you can benefit from these valuable resources to aid in your lung cancer care for yourself or for your loved one.

[ACT]IVATION Tip: 

By texting EMPOWER to +1-833-213-6657, you can receive personalized support from PENs Empowerment Leads. Whether you’re a lung cancer patient, or caring for someone who is, PEN’s Empowerment Leads will be here for you at every step of your journey. Learn more.

Persistencia frente a la atención médica desdeñosa: El viaje de un paciente

Persistencia frente a la atención médica desdeñosa: El viaje de un paciente from Patient Empowerment Network on Vimeo.

Wanda fue diagnosticada con cáncer de pulmón de células no pequeñas (CPCNP) en la flor de su vida. Se defendió ferozmente incluso después de enfrentar inicialmente una atención médica desdeñosa. Wanda comparte la importancia de “no equiparar una sentencia de muerte con un diagnóstico de cáncer solo porque un miembro de su equipo de atención dice que no le queda mucho tiempo de vida”. Ella comparte valiosas lecciones aprendidas de su viaje por el cáncer de pulmón y la importancia de escuchar su intuición y su cuerpo.

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Related Resources:

What Do Lung Cancer Patients Need to Know to Build a Treatment Plan

What Do Lung Cancer Patients Need to Know to Build a Treatment Plan

Persistencia frente a la atención médica desdeñosa: El viaje de un paciente

Persistence in the Face of Dismissive Healthcare: One Patients’ Journey

What Are the Noted Disparities in Lung Cancer Screening and Access

What Are the Noted Disparities in Lung Cancer Screening and Access?


Transcript:

Mi nombre es Wanda y me diagnosticaron cáncer de pulmón de células no pequeñas cuando tenía poco más de 40 años. Soy una mujer negra y, como muchas otras, mi camino hacia el diagnóstico no fue sencillo. Mis síntomas empezaron sintiéndome fatigada y como si fuera a desmayarme. Mi intuición me dijo que algo iba mal y me hice pruebas para diagnosticar el problema. Me detectaron un nódulo en el pulmón, pero el médico no me dio importancia a pesar de que yo conocía bien mi salud y posibles problemas de salud.

Solicité un escáner para investigar más a fondo el nódulo pulmonar, pero mi médico desestimó mi preocupación y no quiso hacerme la prueba. Después de que me hicieran una tomografía por emisión de positrones (PET), el especialista pulmonar que la revisó desestimó mis preocupaciones y decidió hacerme otra en 6 meses. Durante los seis meses siguientes, mis síntomas siguieron empeorando: fatiga, pérdida de peso y sibilancias.Sabía que tenía cáncer de pulmón y me sentía atrapada porque tenía que esperar a la exploración de seguimiento. 

Cuando por fin recibí el diagnóstico de adenocarcinoma, sentí una mezcla de alivio por tener razón y rabia porque mi cáncer había empeorado en los últimos 6 meses. Después de dos operaciones para extirparme los ganglios linfáticos y una parte del pulmón, estoy bien y me alegra compartir mi historia para ayudar a otras personas que puedan sentirse descartadas por sus médicos.

Algunas de las cosas que he aprendido en mi lucha contra el cáncer de pulmón son: 

  • Infórmate y haz preguntas a tus médicos. Infórmese sobre las opciones de tratamiento disponibles y coméntelas con su médico. Los médicos esperan que los pacientes tengan preguntas.
  • Pregunte sobre las opciones de ensayos clínicos, si es necesario viajar y si habrá gastos que usted o alguien tendrá que cubrir en su nombre. Pregunte si existen programas que puedan ayudarle con los gastos no cubiertos. 
  • Siempre es buena idea buscar una segunda opinión. Buscar una segunda opinión no es algo por lo que debas sentirte culpable, y tu vida o la de tu ser querido depende de un diagnóstico preciso.
  •  Escuche a su intuición y a su cuerpo. Yo sabía que algo iba muy mal, pero mis médicos me ignoraron durante meses antes del diagnóstico.
  • Evite a los médicos negativos y no equipare una sentencia de muerte con un diagnóstico de cáncer. Que un miembro de tu equipo médico te diga que no te queda mucho tiempo de vida no significa que esté escrito en piedra.

Estas acciones fueron clave para seguir en mi camino hacia el empoderamiento.


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Persistence in the Face of Dismissive Healthcare: One Patient’s Journey

Persistence in the Face of Dismissive Healthcare: One Patient’s Journey from Patient Empowerment Network on Vimeo.

Wanda was diagnosed with non-small cell lung cancer (NSCLC) in the prime of her life. She fiercely advocated for herself even after initially facing dismissive healthcare. Wanda shares the importance of “not equating a death sentence with a cancer diagnosis just because a member of your care team says you don’t have long to live.” She shares valuable lessons learned on her lung cancer journey and the importance of listening to your intuition and body.

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Related Resources:

What Do Lung Cancer Patients Need to Know to Build a Treatment Plan

What Do Lung Cancer Patients Need to Know to Build a Treatment Plan

Persistencia frente a la atención médica desdeñosa: El viaje de un paciente

Persistencia frente a la atención médica desdeñosa: El viaje de un paciente

What Are the Noted Disparities in Lung Cancer Screening and Access

What Are the Noted Disparities in Lung Cancer Screening and Access?


Transcript:

My name is Wanda, and I was diagnosed in my early 40s with non-small cell lung cancer. I’m a Black woman, and like many others, my path to diagnosis wasn’t straightforward.

My symptoms began with feeling fatigued and like I might faint. My intuition told me that something was wrong, and I had testing done to help diagnose what the issue might be. A nodule was found in my lung, but I felt dismissed by my doctor even though I was knowledgeable about my health and potential health issues. I requested a scan to further investigate the lung nodule, but my doctor dismissed my concerns and wouldn’t run the test. After I eventually received a PET scan of my lung, the pulmonary specialist who reviewed my scan dismissed my concerns and decided to do another scan in 6 months.  

Over the next 6 months, my symptoms continued to worsen with more severe fatigue, weight loss, and wheezing. I knew that I had lung cancer and felt trapped that I had to wait for the follow-up scan. When I finally received my diagnosis of adenocarcinoma, I felt a mixture of relief that I was right and anger that my cancer had worsened over the last 6 months. After two surgeries to remove lymph nodes and a portion of my lung, I’m doing well and am happy to share my story to help others who may feel dismissed by their doctors.

Some of the things I’ve learned on my lung cancer journey include:

  • Educate yourself and ask your doctors questions. Learn about the available treatment options and discuss each one with your doctor. Doctors expect patients to have questions.
  • Ask about clinical trial options, whether travel is required, and if there will be expenses that you or someone will need to cover on your behalf. Ask if there are programs that can help you with uncovered expenses.
  • It’s always a good idea to seek a second opinion. Seeking a second opinion is nothing to feel guilty about, and you or your loved one’s life depends on an accurate diagnosis.
  • Listen to your intuition and body. I knew something was seriously wrong but was dismissed by my doctors for months before my diagnosis.
  • Avoid negative doctors and don’t equate a death sentence with a cancer diagnosis. Just because a member of your care team says you don’t have long to live doesn’t mean it’s written in stone.

These actions were key for staying on my path to empowerment.


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Tumor Genetics vs. Family Genetics in Lung Cancer: What Is the Difference

Tumor Genetics vs. Family Genetics in Lung Cancer: What is the Difference? from Patient Empowerment Network on Vimeo.

What do lung cancer patients need to know about genetic testing? Dr. Lecia Sequist explains the two types of genetic testing and how the test results are used to create optimal treatment plans for personalized care.

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:

“…if you’ve been diagnosed with cancer, you should talk to your doctor about whether you should get genetic testing, either of your cancer cells or of your familial genetic background. And sometimes the answer will be yes to both those. But know that there are two different types of genetic testing.”

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What Are the Noted Disparities in Lung Cancer Screening and Access?


Transcript:

Lisa Hatfield:

Dr. Sequist, can you please explain what genetic testing is for cancer patients?

Dr. Lecia Sequist:

Yeah. This can be a really complicated area, so I’m so glad you asked me this question. I think genetic testing basically is looking at the genes. So inside each cell in our body, there are…there’s DNA, which is the genes, and the DNA is kind of like an instruction manual for your cells, and like any instruction manual it has different pages, it has different chapters and individual words. And when they’re doing genetic testing, they’re looking to see if any of those chapters or pages or words have a typo or maybe were deleted, sometimes a whole page or a whole chapter is deleted, or sometimes a chapter is picked out of where it’s supposed to go and shoved in another part of the book. And looking for these different kinds of mistakes or edits in the genes is what genetic testing does. But we can do genetic testing on different parts. When you’re talking about a patient who has cancer, there’s basically two different areas that can be tested genetically. One is the patient’s healthy body, the genes they were born with, that they inherited from their parents, that they’ve had their whole life or they could pass on to their children if they have children. And so that type of genetics is called the germline genetics, but it basically is the type of genes you can get from your parents or pass on to your children.

If you have been diagnosed with cancer, there’s a separate set of DNA, set of genetic testing, which is done on the cancer cells. And a lot of times those genes have not been with you your whole life, they just came up at the time that the first cancer cell appeared in your body. And they may be different than the germline genes you inherited from your parents. And so depends on the type of cancer that you have, there are some types of cancer where it is very common to look at the germline cancer gene…sorry, the germline genes to see if you have a predisposition for cancer. This is done a lot of times in breast and ovarian cancer and sometimes with colon cancer, where we know there are genes that can run in families that can predispose people to getting cancer. And the reason that’s done, if you’re diagnosed with cancer and they wanna check your familial genes, it’s because they wanna know if other people in your family might be at risk for the same type of cancer. Does this have implications for how your sister should be treated medically or your child?

Separately for lung cancer, for example, which I treat, we’re usually doing genetic testing on the cancer, and we’re looking at what’s making that cancer cell tick. Are there treatments, are there different drugs or therapies that we can give that will kill the cancer based on the genes that are in the cancer? And so that tumor cancer genetic testing is often called genotyping or it’s testing the somatic, which just means the cancer cells, the somatic genetic testing. But it’s complicated, and I think people, rightfully so, get confused about all these different types of genetic testing. I guess my activation tip for this question would be, if you’ve been diagnosed with cancer, you should talk to your doctor about whether you should get genetic testing, either of your cancer cells or of your familial genetic background. And sometimes the answer will be yes to both those. But know that there are two different types of genetic testing. 


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Expert Advice for Lung Cancer Patients Considering a Clinical Trial

Expert Advice for Lung Cancer Patients Considering a Clinical Trial from Patient Empowerment Network on Vimeo

What do lung cancer patients need to know about clinical trials? Dr. Lecia Sequist shares her perspective about the benefits of clinical trials, common misconceptions about trials, and advice to patients considering clinical trials.

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:

“…ask your doctor if you should go to another center, maybe in a bigger town or city, to ask about clinical trials there? And that’s a great reason to have a second opinion. Sometimes the latest, most active treatments are only available on a clinical trial.”

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Transcript:

Lisa Hatfield:

Dr. Sequist, why is clinical trial participation so important in lung cancer, and what advice do you have for patients who are considering a clinical trial, and especially as they’re thinking about access to that clinical trial, how can they access those trials?

Dr. Lecia Sequist:

Clinical trials can come in all flavors, in different shapes and sizes. And so it is…I think clinical trials are very important for the field of cancer, they’re how we move the field forward. When scientists invent a new treatment, it can’t come to your door step unless there are clinical trials that are done to show that it works in cancer, that it’s safe, that it’s better than the older treatments. And so clinical trials are critical to cancer treatment and the progress of cancer treatment. I think a lot of people understand that, but they also think, Well, they’re really important, but someone else can do them. I don’t want to participate in a clinical trial, I don’t want to be experimented on, I don’t want to be a lab rat. And I can definitely understand that fear. But clinical trials, again, like I said, they come in all shapes and sizes, some of them are more experimental where maybe you’re getting a drug that hasn’t been tried in that many people before, some of them are less experimental where maybe there’s a drug that’s approved and works really, really well in breast cancer. It hasn’t come to lung cancer yet because it needs a clinical trial. And you can access that treatment before everyone else if you participate in the clinical trial.

Clinical trials are not for everyone, but I think that in my opinion, most patients who are diagnosed with cancer should hear about clinical trials, should learn a little bit more about what they really mean, and then they can decide for themselves if it is something that they would like to take part in. Clinical trials aren’t available at every hospital or every clinic, that’s the other thing, is that they may not offer clinical trials where you’re being treated, but you can…

I think my activation tips around clinical trials are, one, to learn more about it because most of us don’t know that much about clinical trials. And you can start by asking your doctor, but it’s possible your doctor doesn’t know that much about clinical trials either if clinical trials aren’t done or offered at your hospital or your clinic. And so you can ask your doctor if you should go to another center, maybe in a bigger town or city, to ask about clinical trials there? And that’s a great reason to have a second opinion. Sometimes the latest, most active treatments are only available on a clinical trial. So I think another misconception people have is that, well, that’s for when everything else has been tried, it’s like the last-ditch effort. That’s definitely not true. Sometimes the best treatments that we would love to give a patient first when they’re first diagnosed, because we think it has the highest chance of working, but it’s only available on a clinical trial. So it’s not something to think about only after you’ve tried five or six other things. Clinical trials should be considered, I think for every cancer patient from day one. They may not be a good fit for every patient, but they should at least be talked about and thought about, so we can really find the best plan for you. 


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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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Expert Advice for Lung Cancer Patients Considering a Clinical Trial


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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What Steps Can BIPOC Lung Cancer Patients Take to Guard Against Care Disparities?

What Steps Can BIPOC Lung Cancer Patients Take to Guard Against Care Disparities? from Patient Empowerment Network on Vimeo.

How can BIPOC lung cancer patients or other underrepresented  patients help guard against care disparities? Expert Dr. Lecia Sequist shares advice for non-small cell lung cancer (NSCLC) patients to help ensure they receive optimal treatment with the most advanced treatments available.

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:

“You don’t have to ask permission to get a second opinion, you can just make an appointment with a different oncologist or go to an oncologist if you haven’t seen one before. Because lung cancer is changing and treatments are more successful, and we all have to do more as a community to make sure that those treatments are offered to everyone.”

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Tumor Genetics vs. Family Genetics in Lung Cancer: What is the Difference


Transcript:

Lisa Hatfield:

So, Dr. Sequist, we know that there are significant disparities in the treatment and the outcomes of minority patients who have non-small cell lung cancer. How can patients avoid these discrepancies in the timeliness of their diagnosis, because that can be an important factor in their outcome?

Dr. Lecia Sequist:

Yeah. I think lung cancer has changed a lot, but in the last 10 years, and there are better treatments than there used to be, and there’s a lot more treatments than there used to be, but not all doctors are aware of these new developments. And I think some doctors still have a kind of an old-fashioned nihilistic view about lung cancer, which can be very negative, which is that lung cancer can’t be treated effectively and patients are just going to do very poorly. That’s not true anymore. It may have been true 20, 30 years ago, unfortunately. But with treatments today, lung cancer patients can live longer, be cured more often and have better quality of life than with some of the older treatments.

And I think in the ideal world, the responsibility really should be on the physicians to make sure that they’re offering those treatments to patients, but in the real world, that doesn’t always happen. And so I think something that patients can do to empower themselves is also to ask their physicians if there’s anything else that can be done or if they should see a second opinion. If you’re feeling like your doctor is not offering you really many options or is being kind of nihilistic, having a very negative picture of what might happen to you with your cancer, then I would just get a second opinion. You don’t have to ask permission to get a second opinion, you can just make an appointment with a different oncologist or go to an oncologist if you haven’t seen one before. Because lung cancer is changing and treatments are more successful, and we all have to do more as a community to make sure that those treatments are offered to everyone. But until that day comes, I think patients also need to feel empowered to ask for other treatments and other opinions. 


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What Are the Noted Disparities in Lung Cancer Screening and Access?

What Are the Noted Disparities in Lung Cancer Screening and Access? from Patient Empowerment Network on Vimeo.

What are some lung cancer disparities in the U.S.? Dr. Lecia Sequist shares insight about disparities in lung cancer screening and care, some causes of the disparities, and ways that advocacy groups are trying to decrease disparities. 

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:

“…be sure to ask your doctor if genetic testing has been performed on your cancer, and if not, can it be performed? It’s not always the right answer, depends on the type of cancer that you have and the stage, but if you have adenocarcinoma and an advanced cancer, like stage III or stage IV, it is the standard to get genetic testing and that should be something that can be done.”

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How Should Newly Diagnosed Lung Cancer Patients Deal with Disease Stigma


Transcript:

Lisa Hatfield:

Thank you. Dr. Sequist, with cancer care, there are some noted disparities, particularly with access to screening and care. What are some of those disparities with lung cancer screening and care?

Dr. Lecia Sequist:

Lung cancer, unfortunately, there are a lot of disparities around the globe, but even if we focus on the U.S., there’s a lot of regional disparities as far as who’s getting cancer, who’s getting lung cancer, where the cancer treatment centers are located, where the screening is available. Lung cancer screening is really effective as far as finding cancer in the earliest stages. It’s not equally available across the country. Some of it has to do with there are certain states that expanded their Medicaid coverage as part of the medical care reform that happened about seven, eight years ago, and there are some states that didn’t expand the Medicaid, and then that situation translated into whether lung cancer screening was easy to get started in hospitals in that state. So there are some regions of the country, and a lot of them are in the South as well as the Western U.S., where if you want to get lung cancer screening, you may have to travel more than 30 miles or even more than 50 miles in order to get lung cancer screening.

There’s lots of activists and patient advocacy groups that are working to try and fix that problem so that anyone could have access to lung cancer screening within a reasonable distance of where they live, but there’s a lot of barriers. Similarly, there are barriers to getting genetic testing performed. We know that doing genetic testing on a lung cancer, it can be really helpful, especially if you have adenocarcinoma, the most common type of lung cancer, getting genetic testing done to see if there are targeted therapies that can be used to treat the cancer is a really important step in the diagnosis, but not all patients are having that done. And as you might imagine, there’s disparities, racial disparities in who’s getting these tests ordered and who is not having that testing done. And so it is important. My activation tip for patients would be to be sure to ask your doctor if genetic testing has been performed on your cancer, and if not, can it be performed? It’s not always the right answer, depends on the type of cancer that you have and the stage, but if you have adenocarcinoma and an advanced cancer, like stage III or stage IV, it is the standard to get genetic testing and that should be something that can be done. 


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Expert Advice for Creating an Optimized Lung Cancer Treatment Plan

Expert Advice for Creating an Optimized Lung Cancer Treatment Plan from Patient Empowerment Network on Vimeo.

What lung cancer treatment factors are considered in creating a treatment plan? Dr. Lecia Sequist explains factors that play a role in an optimized treatment plan and advice to patients to help ensure their best care.

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:

“…bring someone with you when you go to the oncologist office. It’s always best to have another pair of ears listening to the information that’s being presented to you, but also to get another viewpoint about how is this treatment going to work in your life, how are we going to be able to get back and forth to the appointments? Are there other options, are there other satellite sites that the hospital might have that are easier for you to get to?”

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Transcript:

Lisa Hatfield: 

Dr. Sequist, I know there are many factors that go into developing a treatment plan for patients. How do you work with your patients to develop the best treatment plan for an individual patient?

Dr. Lecia Sequist:

That’s a great question. It really is different for every patient. But I think the general steps are for me to make sure that I understand the complete picture about the patient’s cancer. And that usually means a biopsy, several types of radiology scans. Genetic testing of the tumor is often done for lung cancer. And then I definitely talk to my colleagues who give different types of treatment. So I give drug treatments. I’m a medical oncologist. But I work with colleagues who are surgeons and I work with colleagues who are radiation oncologists. If I have any questions about some of the data, I also ask, you know, if I’m not sure about what the scans are showing, I really, it’s important to talk to radiologists who are experts in reading those scans so that we really make sure there’s no gray areas, we understand what’s happening. If I have questions about the biopsy, I talk with the pathologists. So on my end I have to talk to a lot of different colleagues to make sure that I understand the patient’s situation when it comes to their cancer. But it’s also really important to understand the patient’s situation when it comes to their life.

So for that, the patient is the expert and it’s really important for me to understand where they live, who do they live with, what are the things that are challenging for them at home? For example, do they have a lot of stairs to go up and they’re having trouble breathing, or do they live really far from public transportation and they don’t have a car, what are the…they might work certain days or certain hours, or they have childcare responsibilities on certain days or certain hours. So I need to have an understanding of what their life is like too, so that we can figure out what’s the best treatment that will fit into their life, and if it’s goin to not fit so nicely into their current daily routine, how can we help them temporarily change their daily routine so that they can get through the cancer treatment.

All these things are really important. And so if there’s other experts on the patient’s side too, like family members or caregivers, those…it’s really important to engage all these different people to come together to find the best plan for that patient. So my activation tip for this question is to bring someone with you when you go to the oncologist office. It’s always best to have another pair of ears listening to the information that’s being presented to you, but also to get another viewpoint about how is this treatment going to work in your life, how are we going to be able to get back and forth to the appointments? Are there other options, are there other satellite sites that the hospital might have that are easier for you to get to?

Do they have weekend hours? If weekends are easier for you to go for some treatments or tests. There are lots of different things that are out there, and it’s hard for any one person to think of all the questions. So if you bring someone with you, it’s always helpful. 


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Exciting Lung Cancer Data and Studies: A Look at Neoadjuvant Treatment

Exciting Lung Cancer Data and Studies: A Look At Neoadjuvant Treatment from Patient Empowerment Network on Vimeo.

What are new developments in lung cancer treatment? Dr. Lecia Sequist shares some new ways of sequencing treatments that have shown success, benefits of clinical trial participation, and advice for patients for empowered care. 

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:

“…if surgery has been recommended to you for lung cancer, to ask if you should be getting any treatment before the surgery, because that’s what a lot of the newer studies are looking at.”

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Transcript:

Lisa Hatfield:

All right, Dr. Sequist, we know that the abstracts for ASCO, which is coming up in a couple months, are not published yet, but what lung cancer data or studies are coming out of major medical conferences like ASCO or there is one coming up in Florida also, but what studies are coming out that you are the most excited about?

Dr. Lecia Sequist:

I think one of the areas that’s changing the most in lung cancer recently has to do with what’s called neoadjuvant treatment. And that just means treatment that’s given before a surgery. Historically, if a lung cancer was of a size, in a location where surgery was feasible, from a technical standpoint, it was often recommended. And sometimes the cancer might have spread to the lymph nodes or maybe it spread to another part of the body and surgery wasn’t able to be done. And it was kind of just a yes/no. Yes, we can do surgery or no, it doesn’t look like we can do surgery. And that line has gotten a little bit more blurry lately, because now multiple studies are coming out showing that you can actually give treatment like drug treatments such as chemotherapy and immune therapy before surgery is done. And sometimes that can really improve the outcome of the surgery or can improve the outcome for the patient of not having a cancer come back in the future.

And so now when someone’s newly diagnosed with lung cancer, it’s not so much just a yes no. Are we going to surgery? Yes or no? A lot of times it’s more complicated based on the newer data. Is surgery an option ever? Maybe we should try some drug treatment first and surgery might be something that we can do later. It really still depends on the…every patient has a unique situation so it’s hard to paint with a broad brush. But one of the areas that’s changing the most is around surgery, around who should have surgery and should they have treatments before or after the surgery that can help the surgery work better. So my activation tip for this question is that if surgery has been recommended to you for lung cancer, to ask if you should be getting any treatment before the surgery, because that’s what a lot of the newer studies are looking at.

And to ask if there’s any research studies that you can be part of. Because the way that these advances happen is research studies are done on patients that would like to participate in research. Participating in research, I think there’s a lot of confusion around what that means. And one of the most common things I hear patients say is, “Well, I don’t want to be a lab rat.” And I can assure you that if it’s gotten to the point of a clinical trial, it’s been very well-thought about, very well-designed with your safety, you as a patient, your safety in mind, and also that you would be completely informed about what you’re saying, what you’re getting involved in. So you’re not just throwing yourself up to be a lab rat.  But if you’re interested in a research trial, your doctor can talk to you about what that would involve, how it would be different than not being in a research study. And it may be a way for you to be able to access the treatment of tomorrow today. 


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