Combat and Courage | A Veteran’s Lung Cancer Battle

Combat and Courage: A Veteran’s Lung Cancer Battle from Patient Empowerment Network on Vimeo.

Derrick, a resilient veteran and lung cancer survivor graciously opens up about his journey, detailing his experience from initial screening and diagnosis through to treatment. He candidly discusses crucial aspects of lung cancer care for veterans and offers insights drawn from his journey. In Derrick’s own heartfelt words, he emphasizes the importance of empowerment through knowledge, stating, “It’s your body and your life, and you deserve to learn all you can to gain knowledge and confidence about your cancer.” 

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

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


Transcript:

Derrick:

Being ACTIVATED in your lung cancer care is a necessity, take it from me. 

After my friend who I served with in Iraq was diagnosed with lung cancer, I knew that it was time to get  serious about my lung cancer screenings at the Veterans Affairs Hospital. As a lung cancer survivor, I want to share my story as a Black military veteran. Lung cancer is the leading cause of cancer-related death in veterans, and Black veterans are less likely to complete lung cancer screening.  However, a recent VA report showed that Black veterans receive equal or superior care through VA hospitals in comparison to Black patients in the general population.

I was already 52 when I received my first lung cancer screening. I only learned later that I should have started receiving screening at age 50 at the VA. It was winter when I went in for my screening. I’d had a nagging cough but didn’t think twice about it. It was a winter season with multiple respiratory viruses circulating at the time. I was shocked when the radiologist informed my doctor that they found a spot on one of my lungs. I felt like I wasn’t old enough to have cancer.

I was really nervous about it beforehand, but I had surgery to remove the tumor from my lung. I felt fortunate to have my friend I served with to talk with about lung cancer, but I know not everyone is this fortunate. I’m sharing my story in the hopes that it will help other veterans. I continue to receive regular scans of my lungs and urge other veterans to start your lung cancer screening on schedule. Ask your doctor or VA administrator if you’re unsure about when you should start. It’s your body and your life, and you deserve to learn all you can to gain knowledge and confidence about your cancer.

There have been a lot of recent advancements in lung cancer diagnosis and treatment. I hope that sharing my perspective will make a difference for other veterans. We served proudly for our country, and we deserve the best lung cancer screening and care as part of the respect that we earned.

Stay [ACT]IVATED with these tips. 

  1. Don’t allow stigmas to keep you from getting the best care, now is the time to get the right care no matter how you got the cancer.
  2. Ask your care team questions to learn about treatment options and what to expect during and after treatment.
  3. Ask if a clinical trial may be a potential treatment option for you.
  4. Stay abreast of lung cancer treatment options and research advancements

Whether it’s combat in war or fighting cancer, no matter who you are, being proactive is everything. Stay [ACT]IVATED by being informed, empowered, and engaged in your care.

Empowering Lung Cancer Patients | Embracing Hope, Treatment, and Teamwork

Empowering Lung Cancer Patients: Embracing Hope, Treatment, and Teamwork from Patient Empowerment Network on Vimeo.

What does the future of non-small cell lung cancer (NSCLC) treatment and care look like? Expert Dr. Samuel Cykert from UNC School of Medicine shares his outlook about the future of care and his advice to patients to help build emotional support.

[ACT]IVATION TIP

“…don’t give up, and one thing I’ve heard from patients over time, particularly among Black patients, there’s a tremendous faith community, and understanding that tremendous faith, faith is excellent, but also use that faith to understand that your belief in God, your interaction with God, God is using those doctors and those healthcare professionals to help you, so it’s not a solo effort, get everybody on the team.”

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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?

Transcript:

Lisa Hatfield:

If you could give one suggestion to patients out there who may not be following up with their appointments, perhaps also in addition to the racial disparities? The unfortunate stigma surrounding lung cancer, and I wonder sometimes if that’s a barrier to continuing treatments or going to appointments, you could give one suggestion or sentence of encouragement to patients to seek out those high volume facilities if they’re diagnosed, if there’s a suspicion of lung cancer and to continue with treatment, what would your message be to those patients?

Dr. Samuel Cykert:

My message to patients, really it’s two-fold. On the medical side, lung cancer deaths are falling, all cancer deaths are falling, and they’re falling because of earlier detection, but they’re also falling because of these new treatments. And so it’s really, really important, particularly if you’re physically able, if you have a good functional status and you’re able to walk around and do things, it’s important that you really, really consider aggressive treatments because lung cancer isn’t an immediate death sentence anymore.

It is true that there are some lung cancers that are not curable, but with some of the new biologic treatments and chemotherapy regimens, people can live years with a good quality of life, even with some advanced lung cancers. So my advice on that side is don’t give up, and one thing I’ve heard from patients over time, particularly among Black patients, there’s a tremendous faith community, and understanding that tremendous faith, faith is excellent, but also use that faith to understand that your belief in God, your interaction with God, God is using those doctors and those healthcare professionals to help you, so it’s not a solo effort, get everybody on the team.

Lisa Hatfield:

Great message. Everybody on the team, I like that. Thank you, Dr. Cykert, and I appreciate all of your answers, and I’m hoping that this message, what people are watching that, understanding those statistics from your research, people who sometimes miss appointments or have transportation issues, maybe this will inspire them to continue finding ways to get there and to keep going, to keep fighting it and getting everybody on their team, I appreciate your message a lot. Thank you.


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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? from Patient Empowerment Network on Vimeo.

With non-small cell lung cancer (NSCLC) precision medicine, what are disparities and strategies to equitable access? Expert Dr. Samuel Cykert from UNC School of Medicine discusses disparities, strategies to overcome disparities, and proactive patient advice toward optimal care.

[ACT]IVATION TIP

“…I know you do electronic health records, and as soon as this visit is done, you have data about my visit, so have you thought about creating a real-time registry to see how I’m progressing with my care and see how others are progressing with their care, whether to make sure that we don’t have missed appointments and to make sure that I’m not falling behind where I should be.”

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Improving Biomarker Testing Access for Rural Lung Cancer Patients

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Empowering Lung Cancer Patients | Embracing Hope, Treatment, and Teamwork

Transcript:

Lisa Hatfield:

Dr. Cykert, are there any disparities in access to biomarker testing for Black and Latinx patients with lung cancer compared to other racial or ethnic groups, and if so, what strategies or initiatives can be implemented to address these disparities and promote equitable access to precision medicine?

Dr. Samuel Cykert:

Yeah, biomarker testing followed up by precision medicine is really fairly new in the last half-dozen years, so there haven’t been a lot of studies done looking at how well we’re doing in different groups, but there’s a journal called The Journal of Clinical Oncology and precision medicine that published such a study in 2022.

And what that showed…and again, keep in mind that in a lot of…as they do in a lot of database studies, they are a couple of years behind, but what they showed in looking at the cases of over 20,000 patients, is that on first time testing, we talked about initial biopsies, when the initial biopsy is tested, there is actually about a 7 percent difference between Black and white patients with the white number being only 37 percent and the Black number being 30 percent, so that was low all the way around.

And then if you look at any biomolecular testing at any stage of the cancer, those numbers change to around 55 percent for white patients and 44 percent for Black patients, and I want to point out that for Asian patients and Latinx patients, the numbers were also low, but there weren’t enough patients in the database to achieve statistical significance, but it looks like things are going in the wrong direction there too, and when you think about it, in the state of the right now, those numbers ought to be close to 100 percent for everybody, at least in some of the basic markers like ALK and EGFR and PD-L1.

So there’s a lot of work to do. So there is a disparity. It has been documented, but we’re not getting perfect care to even anyone, and in the ACCURE (Accountability for Cancer Care through Undoing Racism and Equity) Study that I had described a little bit earlier, where we did an intervention, we created real-time transparency through up-to-date electronic health records and digital data of where patients were in their care, we were able to create a real-time registry to know what had been done for every patient, and in the case of precision medicine, this would be so easy, because you basically put every patient that’s had a lung cancer biopsy in the registry, then you have another column in the registry tested for X, tested for Y, tested for Z, and then you have a next column that says, treated for X, treated for Y, and treated for Z. We have the digital information now to do all this in real time, and we have to build the systems to do it.

Lisa Hatfield:

Could you share any examples of successful initiatives or programs aimed at improving the implementation of biomarker testing in lung cancer and what factors contribute to the success of these initiatives, and how can they be replicated or scaled in other healthcare settings?

Dr. Samuel Cykert:

I’ll have to plead my ignorance on this question because I haven’t talked to enough cancer centers on whether or not they’re creating real-time registries for whether all their patients with probable lung cancer are, [a] getting biopsied promptly, [b] getting biomarker testing, and then following those patients over time to see if they’re getting the treatments to match to that, so I know that at my own institution at the University of North Carolina Lineberger Cancer Center, we’re actively talking about building these systems, but we haven’t built them yet.

And so going back to the work that our UNC team has done in partnership with Greensboro Health Disparities Collaborative, we’ve done an intervention with real-time transparency in lung cancer treatment and breast cancer treatment, and real-time quality improvement and audit and feedback for accountability in those treatments and using navigation, particularly for high risk patients to make sure that they’re able to follow through with their diagnosis and treatment.

So with that combination in lung cancer, we got almost perfect care, 96 percent and 95 percent completing treatment, so there’s no reason that the same system cannot be applied to biomarker testing and biologic and immunotherapy, and we need to look at it and implement it and apply it as soon as possible, because when you think about all this, and I’m not just talking about cancer, but when you’re thinking about the whole picture, when you look at, for instance, Black, white disparities, whether it’s in cardiovascular care, whether it’s in diabetes, whether it’s in cancer care, if you look at the result of that in one year, if we brought up care to benchmark levels of the Black community on all those things, we would save 74,000 lives a year.

That’s incredibly impactful. And we need to quicken up the pace of doing this. I’ve been a disparities researcher and intervention researcher for over 20 years, and people really haven’t taken note of really doing interventions until the last five or six years. We need to pay attention, we need to move. It’s important. People’s lives depend on it. And care improved for everyone with these systems, it improved for white patients too. It’s not a zero-sum game.

Lisa Hatfield:

I’m wondering, as a patient, is there anything that I can do or that a patient can do to request or to ask if they use real-time data, that institution to help with the treatment or help with testing or whatever, is there a question the patient might be able to ask to ensure the real-time data is used? Because I imagine it’s not being used as often, so it could be, like you said, there probably isn’t a system in place.

Dr. Samuel Cykert:

Here’s my double activation tip. So at an institution, you don’t know if you have a problem until you look. So the first problem is, as I go back and look behind, am I making sure whether or not I’m seeing disparities, whether it’s a man, woman, Black, white, Latinx, do we have disparities in our treatment application and treatment outcomes in our institution? Because if we look at that, we can start brainstorming on how to possibly fix it, and then the second thing is, I know you do electronic health records, and as soon as this visit is done, you have data about my visit, so have you thought about creating a real-time registry to see how I’m progressing with my care and see how others are progressing with their care, whether to make sure that we don’t have missed appointments and to make sure that I’m not falling behind where I should be.

Lisa Hatfield:

Great, that’s perfect, thank you. Having the patients be…have that accountability too, to ask the question, if that exists, that real-time data, if there’s a way to use that. So thank you, I appreciate that myself personally, so thanks. 


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What Urgent Innovations Can Advance Lung Cancer Precision Medicine?

What Urgent Innovations Can Advance Lung Cancer Precision Medicine? from Patient Empowerment Network on Vimeo.

How can non-small cell lung cancer (NSCLC) precision medicine be advanced through urgent innovations? Expert Dr. Samuel Cykert from UNC School of Medicine discusses technology and research innovations and epigenetics.

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Empowering Lung Cancer Patients | Embracing Hope, Treatment, and Teamwork

Transcript:

Lisa Hatfield:

In your opinion, what are the most pressing research priorities or areas of innovation needed to further advance the implementation of biomarker testing and precision medicine in the management of lung cancer?

Dr. Samuel Cykert:

Yeah, there are two areas of this, the health services researcher side of me says institutions have to implement systems that follow patients in real time to making sure that they’re getting the testing and treatment that they need from the initial suspicion of lung cancer all the way to biomarker testing and therapies, whether they include surgery, chemo, radiation, biologics or immunotherapy. Those systems need to be areas of priority so that we’re really proactive of not only following patients, but from time to time, whether there are side effects or whether there is confusion, having those systems so we know when to re-engage patients when they’re not progressing along, so on the health services side, we have a lot of just phenomenal, phenomenal new treatments, and we have to make sure that every patient who is eligible is getting those treatments. Okay?

Now, on the other side of things, we’ve talked about racial disparities and other ethnic disparities in care, and one thing that people are observing over time is that in individuals and communities where racism is experienced, where the stress of racism is felt on a frequent basis, we know that outcomes are worse. And part of that may have to do with stress hormones themselves and how stress hormones interact with cancer treatments and hypertension treatment and other treatments, but the other possibility is there is a field called epigenetics, where genes change because of stressors.

And so it’s very conceivable now, in terms of the Human Genome Project, there is hardly a difference in the genome between white and Black people. Genetic race is a social construct, and genetically we’re almost identical, but if we’re experiencing epigenetics, if we are experiencing racism and that grind in daily life, it changes things within us, and so I think it’s important to get enough tissue on the research side from Black patients and other disadvantaged groups to look at the epigenetic part of it, because there may be new genes and new biomarkers we’re not experiencing now that are more prevalent in disadvantaged peoples, and so I think research has to go in that direction too, and even let’s talk about going upstream, maybe if we can prevent the effects of racism. I wish racism would end tomorrow, right, or today, but it doesn’t look like that’s happening. And so, is there any way we can attenuate the stresses of racism so that the downstream effects are prevented?

Lisa Hatfield:

Really interesting point you make about the stress of that. That’s super important. It’s something I hadn’t thought of. So thanks for mentioning that too. 


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Improving Biomarker Testing Access for Rural Lung Cancer Patients

Improving Biomarker Testing Access for Rural Lung Cancer Patients from Patient Empowerment Network on Vimeo.

What are the barriers for rural patients hoping to access biomarker tests? Dr. Samuel Cykert discusses the barriers for underrepresented lung cancer patients in rural areas face in accessing biomarker testing, citing issues like health insurance, economics, and language.

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

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What Urgent Innovations Can Advance Lung Cancer Precision Medicine?

Transcript:

Lisa Hatfield:

Dr. Cykert, one of the main barriers preventing Black and Latinx patients with lung cancer in rural areas from accessing biomarker testing, and what steps can be taken to address these barriers, including improving awareness, affordability, and availability of testing facilities?

Dr. Samuel Cykert:

Yeah, great, great question. There are several issues here. One is the issue of rural, and the other issue is patients of color who may have barriers of health insurance, barriers of economics, barriers of education, and especially in the case of Latinx folks, barriers of language. So it really is a multiple question, but one thing for sure is we know from past studies that technology diffusion is slow and tends to get out to rural areas later than other areas, and the other problem is treatment volume in rural areas.

So a lot of rural hospitals don’t do bio specimen testing, don’t have the capability of doing that, and so you have this kind of double whammy of low volume testing plus low volume treatment, it’s well-known that surgeons who do more operations, for instance, do better. So given all those factors, I would recommend that rural patients who have presumptive diagnosis of lung cancer, even a suspicion of lung cancer, for instance, a large mass, a greater than 2 centimeter mass on an x-ray or a CT scan, that those patients ask to be referred to the closest high volume center.

I think that’s an important step, and we also have to have close interactions with our rural colleagues so that they’re comfortable of treating aggressively things that are well-treatable in the rural environment and going on to the high-volume centers, the more specialized centers, when things have to be done more aggressively.

When you look at a lot of different healthcare disparities, especially in advanced diseases, a lot of them come from being in areas where technology diffusion hasn’t happened and people don’t have access to the same treatments that they do at higher volume centers.  My activation tip here is, for things like biomarker testing and advanced treatments, you need to go to the closest high volume center.


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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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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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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.

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

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

Can Artificial Intelligence and Machine Learning Help Advance Screening for Lung Cancer? from Patient Empowerment Network on Vimeo.

How will lung cancer personalized medicine be improved with advanced technologies? Expert Dr. Lecia Sequist explains how artificial intelligence and machine learning help advance screening for lung cancer and shares advice for 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:

“… if you are 50 and you have smoked in the past, I would urge you to talk to your doctor about whether you can access lung cancer screening. But if you’re younger or you haven’t smoked in the past, you can’t access lung cancer screening right now. And we’re hoping to change that with AI that can really help figure out who is at risk of this disease.”

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Transcript:

Lisa Hatfield:

Dr. Sequist, technology is advancing at such a fast pace, and we’re hearing words like artificial intelligence and machine learning. And I just read an article about a team that you’ve been working with that is developing or has developed an AI model that can detect future lung cancer risk. I believe it’s based on CT scans. Can you speak to that a little bit more and also talk a little bit more about where you see this AI technology taking cancer research and predicting cancer and also any challenges that we might face with AI and machine learning in healthcare?

Dr. Lecia Sequist:

Yeah. AI seems to be everywhere. You turn on the news or you look at your phone, and it’s talking about AI. And some of it seems scary, and Hollywood doesn’t help because there’s lots of movies about computers or robots kind of taking over the human race. And I think we have to separate Hollywood from real life. Artificial intelligence or machine learning, it’s a very general term. It can mean a lot of different things depending on what the context is. But it’s basically just a tool for understanding patterns. And we all understand patterns in our own life or our own house. I personally know that my dog is going to want to, as soon as we wake up in the morning, is going to want to go outside and then is going to want to have some food, and there are different patterns that you know in your daily life that you recognize, and you can anticipate what’s going to happen next.

AI is a tool that helps us anticipate what’s going to happen next for patterns that are way more complex than, yeah, your dog’s going to want to go outside and eat some food. So computers can sometimes pick up patterns that the human brain can’t really pick up, because they’re just too complicated. And that’s what we’ve found in our research. One of the vaccine things about lung cancer and trying to figure out how we can prevent lung cancer or find it at the earliest stage when it’s most curable is that it’s very hard to know who’s at risk. We know that lung cancer is one of the most common cancers out there, but knowing who is truly at risk and separating one person from the next is not so simple.

In the past, it’s mainly been, you know, determined by whether or not you ever smoke cigarettes. And 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? That’s what we tried to solve with our research that I worked on with my colleagues at Mass General Hospital where I work and also at MIT, Massachusetts Institute of Technology, which is just down the road from us. And so we brought together our medical knowledge and our computer knowledge and tried to come up with a way to predict for any given individual person, are they at risk for lung cancer.

By looking at their lungs and not looking at the lungs the way a human radiologist sort of says, okay, there’s the right lung, there’s the left lung, and they’re looking for things that already exist like a tumor or a mass. 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. And so using an X-ray or a CAT scan to predict future risk is something a little different. In medicine, we usually use an X-ray to say, okay, what’s happening now? Why does this patient have a fever? Why is this patient bleeding? And using an X-ray or a CAT scan in this case to predict the future is kind of a new thought for doctors. But we think that it could be a really valuable tool to help us understand who’s at risk for many different kinds of diseases. We happen to look at lung cancer, but I think you could use this idea for other diseases too.

Lisa Hatfield:

So will this AI model become mainstream anytime soon if a patient wants to access that? Or is it only being used for research purposes?

Dr. Lecia Sequist:

Well, we do before we start to offer anything mainstream or as part of routine care, we really need to understand how it can be used to help patients. So we are running some clinical trials right now to try and understand, is this a tool that could be used, for example, to give someone access to lung cancer screening? Because right now, if you want to have lung cancer screening, which is a very effective screening test to try and find cancer in people who feel completely well, trying to find cancer at the earliest stage before it has spread, can we give people access to lung cancer screening by using this AI test? Right now and if you want to get lung cancer screening, you have to be 50 or older, and you have to have smoked in the past. And if that fits your, if you are 50 and you have smoked in the past, I would urge you to talk to your doctor about whether you can access lung cancer screening. But if you’re younger or you haven’t smoked in the past, you can’t access lung cancer screening right now. And we’re hoping to change that with AI that can really help figure out who is at risk of this disease.

Lisa Hatfield:

Thank you. I’m excited to see where this goes in the future. 


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How Can Lung Cancer Patients Ensure Quality Care No Matter Location?

How Can Lung Cancer Patients Ensure Quality Care No Matter Location? from Patient Empowerment Network on Vimeo.

Now that lung cancer patients have access to in-person and telemedicine visits, how can they ensure quality care no matter location? Experts Dr. Nicole Rochester and Dr. Olugbenga Okusanyashare their advice on maximum travel times to in-person providers, when telemedicine visits make sense, and how to ensure you get the best fit for you as a patient. 

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Transcript:

Dr. Nicole Rochester: 

You mentioned telehealth, and we know that one of the barriers to receiving care, and you’ve indicated that in terms of having access to a multi-disciplinary team, having access to thoracic surgeons as opposed to general surgeons. So, we know that that is impacted by where we live, and that often our geographic location can actually be a barrier to the receipt of quality care, so I’d love for you to just talk a little bit about how patients who may be in more remote locations can make sure that they are also receiving appropriate care for their lung cancer. 

Dr. Olugbenga Okusanya: 

Yeah, I think this is a very substantive challenge, I think this is one of the holes in healthcare, there are these regions in the country where you just are not going to have access to any number of surgical sub-specialists or radiation oncologists, or lung cancer specific oncologists. I think that is a really big challenge. I think we have actually learned through the pandemic that the physical barriers really are not the reason to not get the best care, so I think those patients should be exquisitely interested in telehealth and in phone calls, and I think most healthcare systems now, because the reimbursements have been approved for telehealth and actually now built infrastructure to support it as an ongoing concept. So now, if you are a patient that’s in Arizona and you want to talk to a doctor who’s in New Jersey, you can do that, you can make that happen. If you find someone, you Google them, you find a friend in that area who knows someone, you can call their office and say, “I want to have a telehealth visit.” And as long as you have broadband Internet and a phone, you can do it. You can have that conversation. 

So, I would advocate for people to really make sure that you at least feel like people in the sort of local regional area that you can perhaps get to maybe two, three hours away. But you can imagine a scenario where you can get there, you can try and establish some level of care and some level of rapport with them. I think that’s something that has really opened, has been one of the few good things to come out of the pandemic. 

Dr. Nicole Rochester: 

I was going to say the exact same thing. That is one…there haven’t been a lot of positive things, but that certainly is one of the positive outcomes of the pandemic, is this surge, and it’s not that we already had the capability, but it certainly was not being used to its maximum capacity. I appreciate that. So, speaking of telemedicine and COVID, I think one of the challenges that patients and often care partners have is understanding when is a telemedicine or telehealth visit appropriate versus when do you actually need to go see that doctor in-person, so…can you help clarify that? 

Dr. Olugbenga Okusanya: 

Yeah, so I think in general, even if you start with the telehealth is, I think there’s very little downside to telehealth for almost anyone in general, because a lot of the information can be garnered from the patient record, from their scans. I think in general; it gives you 85 percent of what you need out of that interaction, and it may be more convenient for the patient, a lot of times it’s actually more convenient for the doctors, doctors have now found ways to work from home. They do have to have their clinic from home, it’s a much more relaxed environment than more efficient. I think there are times like for instance, I have to make decisions about offering surgery to patients who I consider to be moderate or high risk, I think there is a benefit and having that patient come and see me in the office because they have to somehow pass what we call the eyeball test, and that is a little bit of where this disparity comes in in lung cancer surgery, because it depends on whose eyeball is looking at you, making your determination about what they think is going to happen with you in surgery. 

I remember…actually one of my favorite patients ever. She had data that did not look like she would tolerate surgery, everything about her data did not look favorable. And I saw her, I remember seeing her in-person, and you could see the spark in her eye and energy that she had, and I said, “You know what, we’re going to do it.” And she did great, she did phenomenally well. And that is a case where if you’re in the population of patients that may be slightly more moderate, slightly more high-risk, and you need someone to really look you in the eye and you say, “I’m going to do what it takes to get through this.” I think that’s the patient where the in-touch, in-person visit really is that extra touch that can be benefited. 

Dr. Nicole Rochester: 

Wow, I love what you said about the spark in her eye and also how you connected that to health disparities, and I don’t know the race or ethnicity of the patient that you’re describing, but we certainly know that that makes a difference, and I just wonder if that had been a different physician, would they have seen that same spark? And I think it just goes back to what we were talking about earlier, and the importance of finding a physician or health care provider with whom you connect, someone that actually respects you, someone that listens to you and sees you as a whole person. So, the fact that you were willing to go beyond that data on her chart, which screamed, This is a poor surgical candidate, met her in-person, and something about her let you know that she was going to be okay. 

Dr. Olugbenga Okusanya: 

And that’s why in medicine and surgery are still art at the end of the day, it’s still an art. You make decisions, best informed decisions, but there’s a lot of it that is still really special and mystical in a way. And I think having that in-person interactions will let you practice that and it’s exactly what you said, you want to have a really nice relationship with the physician, especially anyone that’s going to be doing anything that might be invasive or dangerous because for the most part, you meet someone for 45 minutes and then you sign up for what could be a life-threatening event. So, you, the physician and the patient should feel really good about that interaction and whatever that energy is, it’s really important, it’s a little bit kind of sacred, I think, and I think it’s really valuable to invest in that if you don’t like the surgeon, you really don’t feel like it’s a good fit or you don’t like your oncologist, find someone else. You’ll do better in the long run, for sure. 

Dr. Nicole Rochester: 

That is so incredibly important. I agree, 100 percent. So much of healing is beyond just the nuts and bolts of the medical care that we provide, or in your case, the surgical care, there’s so much more to that, that’s not really well studied, but that relationship and that connection is key. 

Dr. Olugbenga Okusanya: 

Critical, and that’s not to say that necessarily the person has to be like the warmest, friendliest, the most fun person you ever met, some people prefer a more yes ma’am, no ma’am, clear-cut, well-defined boundaries of a relationship. Some people prefer a big hug and a laugh and a joke. So if you’re getting what you need, that’s exactly what you need. And if you’re not getting what you need, you should think about your other options 

Empowering Lung Cancer Patients to Increase Their Treatment Options

Empowering Lung Cancer Patients to Increase Their Treatment Options from Patient Empowerment Network on Vimeo.

How can lung cancer patients be empowered to increase their treatment options? Experts Dr. Nicole Rochester and Dr. Olugbenga Okusanyaexplain ways to improve access to lung cancer treatments and to process information more completely for the best care. 

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Transcript:

Dr. Nicole Rochester: 

If we shift gears a little bit and talk about access and some of the concerns about treatment access for lung cancer patients, we know that sometimes these barriers that patients face actually limit their access to treatments, and you indicated surgery as being the mainstay and some difficulties with that, so how can we empower patients so that they don’t feel limited in their care, and how do we make them aware of these treatment options that are available, so that if they are in an office and maybe something’s being offered, but that’s not actually, the standard of care, how do we empower them to get that information and then to act on it? 

Dr. Olugbenga Okusanya: 

Yeah, so number one, which is something I think people do and they don’t realize how valuable it is, bring a friend to the appointment, don’t come by yourself, because you are in an incredibly vulnerable position, you’ve learned or are learning something incredibly emotionally charged and usually very scary. So, you want to bring someone who obviously is going to love you and care about you, but has enough emotional distance from it that they can be your advocate, they can ask those questions in the room that you may just not be there mentally to ask. Number two, never be afraid to get a second opinion, if you’re lucky enough to live in a populous area with multiple health systems, get a copy of your chart, get a copy of your data, get your disc, make an appointment to see another specialist in another health system and see what they say. Because at the very least, if the information is concordant, then you’re going to feel pretty good about saying, “Okay, then I should just go where I think I feel best or who I have the best sort of relationship with?” And again, if you are not lucky enough to have that opportunity, I would be very aggressive about seeing if telehealth is an option to reach out to someone who is a specialist, I’ve had not happened to me in the past, I remember I had a woman who telehealth, me from Ohio, because she’d actually read one of my papers about lung cancer, and she sent her scans, uploaded them, I looked at them and I gave her my opinion, and this is the new age or medicine. 

This is where we’re at now. This is a viable option, and even if telehealth isn’t an option, you can always just get on the phone. As a lung cancer specialist, a lot of the information I need can be garnered from test scans and images, so frankly, the physical exam has some role, but is not the mainstay of how a lot of the decisions are made. So even if I see your scans and I talk to you, I can give you an opinion over the phone, it takes me 15 to 20 minutes, and a lot of times, those visits may not even be charged, depending on who you actually ask to give you an opinion. 

Dr. Nicole Rochester: 

I’m a huge proponent of second opinions, I’ve talked to so many patients and family caregivers who think that they’re offending their doctor if they ask for a second opinion, so I appreciate that you brought that to the forefront and you deserve to have multiple opinions as you’re making these very important life-changing decisions.

How Can BIPOC Lung Cancer Patients Guard Against Health Inequities?

How Can BIPOC Lung Cancer Patients Guard Against Health Inequities? from Patient Empowerment Network on Vimeo.

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Transcript:

Dr. Nicole Rochester:

What are some things that patients of color can do in order to protect themselves from these inequities that you’ve talked about, starting with diagnosis and treatment, what can we do? What can patients of color do? 

Dr. Olugbenga Okusanya: 

So, I think the number one thing is to ask questions, the number one thing is to say, what are my options? What am I dealing with? What should I do or what shouldn’t I do? And to really make sure you get the most at that time when you see a physician, because that is really what we’re there for apart from the surgery, I’m really there to be an educator. I teach as much as I operate on a daily basis whether it be the medical training is whether in my patients, my job is to communicate information back and forth, so you really want to spend the time asking questions and getting as much information out, as much as you can. Number two is, see a specialist. There’s also very good data to indicate that as a Black patient, if you see a board-certified thoracic surgeon, you are more likely to get lung cancer surgery than if you were to see a surgeon of unknown specialization, a general surgeon. So clearly the training gives specialist the ability to make finer determinations and discernments that I think in large part favor Black and minority patients, so you want to find someone who deals with these disease processes all the time because they’re going to look at it in a much higher level and look at it with a lot more granularity. 

Dr. Nicole Rochester:

Just have to repeat what you said, you said, I teach as much as I operate. That just really resonated with me, and I think that…that’s so incredibly important. Doctor means teacher, right? I think that’s the Latin…we are obligated to teach our patients, so I just really appreciate that that’s something that you incorporate in your daily practice.  

BIPOC Lung Cancer Patients and Health Disparities

BIPOC Lung Cancer Patients and Health Disparities from Patient Empowerment Network on Vimeo.

What do some BIPOC lung cancer patients experience in terms of health disparities? Experts Dr. Nicole Rochester and Dr. Olugbenga Okusanya explain health disparities at the different stages of lung cancer diagnosis and treatment – and note differences in diagnosis and survival statistics. 

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Transcript:

Dr. Nicole Rochester: 

So I want to talk about racial and health disparities, ethnic and health disparities, specifically in lung cancer care. I know that you have done some research in this area, and certainly being a person of color, this is something that I would imagine you relate to, so we know that the CDC and many other healthcare organizations have now declared racism a public health crisis, and certainly in 2021, we continue to see worse outcomes for cancer and many other chronic illnesses in people of color, so I’m curious, what do you think are the notable health disparities that are consistently seen in treating BIPOC patients living with lung cancer?  

Dr. Olugbenga Okusanya: 

Yeah, unfortunately, this is an area of interest of mine. And it turns out that the disparities are literally every single stage, there’s not an aspect of lung cancer care, which there is not a significant disparity that hinders the ability of minority patients to get better care, period at all stages. So overall survival for lung cancer for Black patients is worse than white patients, even though Black patients get diagnosed on average two to three years younger than their white counterparts. Black patients are less likely to get surgical therapy for early-stage disease, which is the actual care for an early-stage disease dates than Black patients, than white patients, that gap has been narrowing over the last 20 years, but it is by no means closed. Black patients are unfortunately less likely to get an appropriate work-up to get the indicated tests. They are also less likely to get the chemotherapy when it is indicated, and they are less likely to be enrolled in clinical trials. So, literally at every step there is a significant inequity that affects Black patients, and I think it’s really disheartening to see in a field where lung cancer is the most common killer and cancer, and frankly, there are lot    s and lots of patients who have options, who have good options that never get investigated and never get delivered. 

Dr. Nicole Rochester: 

That is extremely heartbreaking, and it’s sad to hear that we see the same disparities in lung cancer that we see with every other chronic condition, with every other cancer, certainly what we’ve seen recently with COVID-19 as well. And it really underscores what you said previously, which is the importance of being an advocate for yourself and doing your research and making sure that you really are getting the best care.