Tag Archive for: lung cancer care

Are There Lung Cancer Outcome Disparities for Veterans?

Are There Lung Cancer Outcome Disparities for Veterans? from Patient Empowerment Network on Vimeo.

Do lung cancer outcome disparities exist for veterans? Expert Dr. Drew Moghanaki from UCLA Health discusses veteran outcome studies for civilian versus VA healthcare, efforts on improving outcomes over time, and proactive advice for accessing the best lung cancer care.

[ACT]IVATION TIP

“…if you’ve got cancer, to really understand lung cancer, to really appreciate that there’s been a lot of advances and if you’re not feeling that you have access to those advances, get a second opinion and go to a bigger place that actually has an integrated approach to lung cancer care with a multidisciplinary team with the doctors in different specialties are working together and are focused on giving the best lung cancer care.”

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Related Resources:

Combating Disparities | Veterans' Healthcare Access and Quality

Combating Disparities: Veterans’ Healthcare Access and Quality

Veteran Lung Cancer Risk | Understanding Exposures and Screening Protocols

Veteran Lung Cancer Risk | Understanding Exposures and Screening Protocols

Lung Cancer Care for Veterans | Advancements in Radiation Oncology

Lung Cancer Care for Veterans | Advancements in Radiation Oncology

Transcript:

Lisa Hatfield:

Dr. Moghanaki, can you discuss any disparities or differences in health outcomes among veterans compared to the general population when it comes to lung cancer treatment?

Dr. Drew Moghanaki:

Yeah, when it comes to lung cancer treatment, there’s new data that’s showing that since the discovery of better drugs and safer surgery and more effective radiotherapy, that survival rates are improving gradually, especially over the last 10 years. We’ve seen this same trend with VA data as well, that veterans, whether they’re getting care in a community or in the VA, the outcomes are getting better.

Are there disparities? Well, there’s notable disparities that we’ve identified which is that although outcomes in general are getting better for female and male and Black and white and other ethnic sections of the population, there continues to be a disparity in the civilian sector in that our Black patients, whether civilian or veteran, have inferior outcomes. And, of course, we know this is associated largely with other socioeconomic issues related to a long history of racism in this country that’s led to segregation and unequal access to health care and well-being opportunities.

But what we see in the VA, whether you’re Black or white, actually the outcomes are the same. So there’s something that VA is doing that’s addressing the barriers that are affecting people in the general population. And in fact, we see in some of our studies, Black veterans actually have better outcomes. And so we’re learning that it’s much more than just biology by itself, that there really are socioeconomic factors. And when you’ve got a healthcare system that’s more than just a healthcare system, it’s a benefit system as well.

We really provide a nice safety net that helps address those disparities. But the sad truth is that it definitely disparities do continue to exist outside the VA healthcare system. So my activation tip is, if you’re a veteran with maybe some less resources than others, again, check into the VA because the VA provides not just healthcare, but also a lot of support services, especially when you have lung cancer, which as mentioned, is just very difficult to deliver and requires more than just access to a doctor.

Lisa Hatfield:

And I’d like to mention a paper also that you published regarding improving outcomes over a certain time period. There was a paragraph in there where you had a discussion about potential contributing factors to the improvement of outcomes over time. Are you willing to discuss those a little bit, what those potential factors are for improving outcomes in patients with lung cancer?

Dr. Drew Moghanaki:

Yeah, there are three main components. One is making sure you get the diagnosis right. Making sure you do the right biopsies and you send the specimens for what’s called biomarker testing to make sure you know what type of lung cancer. There’s now more than a dozen different types of lung cancer. And if you don’t get that biomarker test, you’re not going to know. You’re just going to be treated with standard therapy. If you get the biomarker testing, you can get personalized medicine with a drug that’s more likely to work and probably safer than the older conventional chemotherapies, which still has a role. But sometimes we can skip chemotherapy altogether and go directly to a targeted therapy.

The second big advancement comes in the treatment delivery itself. So surgical treatments are now much less invasive than ever before. In fact, many of our patients, they go to the operating room, they wake up with four Band-Aids, and half their lung is removed. Remarkable technology using robotic and video-assisted technologies. Same with radiotherapy.

Patients lay on a table and the machine, the very sophisticated machine just rotates around them, zaps these tumors. The patient can actually drive themselves back and forth to treatment and go home and and live their lives. We’ve got patients getting lung radiotherapy, and they’re playing golf the next day. It’s unbelievable. And then the third really comes down to survivorship, which is that our patients, even if we really can’t cure their cancer, like a lot of advanced diabetes, we just can’t cure, we can keep our patients going as they live a high-quality life moving forward and make sure that their journey, unfortunately, with their lung cancer that they obviously didn’t ever want to have, that their journey is the best that it can be. 

So my activation tip here is if you’ve got cancer, to really understand lung cancer, to really appreciate that there’s been a lot of advances and if you’re not feeling that you have access to those advances, get a second opinion and go to a bigger place that actually has an integrated approach to lung cancer care with a multidisciplinary team were the doctors in different specialties are working together and are focused on giving the best lung cancer care.


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Combating Disparities: Veterans’ Healthcare Access and Quality

Combating Disparities: Veterans’ Healthcare Access and Quality from Patient Empowerment Network on Vimeo.

Where can veterans locate quality healthcare and healthcare access? Expert Dr. Drew Moghanaki from UCLA Health shares information from VA healthcare research studies and proactive advice for patients to access the best care.

[ACT]IVATION TIP

“…make sure that the quality of care isn’t inferior, check in with the VA and see how they might be able to help you, especially if you’ve got lung cancer, because lung cancer care is complicated.”

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See More from [ACT]IVATED NSCLC Veterans

Related Resources:

Veteran Lung Cancer Risk | Understanding Exposures and Screening Protocols

Veteran Lung Cancer Risk | Understanding Exposures and Screening Protocols

Are There Lung Cancer Outcome Disparities for Veterans?

Are There Lung Cancer Outcome Disparities for Veterans?

Advancements in Lung Cancer Clinical Trials Updates for Veterans

Advancements in Lung Cancer Clinical Trials Updates for Veterans

Transcript:

Lisa Hatfield:

Dr. Moghanaki, are there disparities in the quality of care received by veterans compared with other patient populations? And can you speak to the strategies or programs that have been effective in addressing barriers to healthcare access for veterans?

Dr. Drew Moghanaki:

I love this question because it is one of the most informative things that I’ve learned since becoming a VA physician. Study after study has shown that the quality of care received by veterans is equal or superior to that received in the community. And that’s largely in the VA healthcare system. So again, if you’ve got access to VA healthcare, I think you might be eligible, please look into it. The reports have been fantastic, and that’s because it’s a comprehensive approach to care. But for veterans who are receiving care in the community, it’s a little bit harder, actually it’s a lot harder to track. Because they may not be registered with the VA. And what’s happening, I saw the VA is happening outside the VA.

And I think that largely speaking veterans are just going to get the same kind of level of care as their neighbors might who are civilian. And so where they’re going for their care really affects that. Now, veterans may have more resources, because they can tap into the VA to find out where they may go. VA has incredible tracking systems, a lot of data to help us make better decisions and for them to make better decisions. And so my activation tip here is to make sure that the quality of care isn’t inferior, check in with the VA and see how they might be able to help you, especially if you’ve got lung cancer, because lung cancer care is complicated.


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Do Black and Latinx Veterans Face Unique Lung Cancer Challenges?

Do Black and Latinx Veterans Face Unique Lung Cancer Challenges? from Patient Empowerment Network on Vimeo.

What unique challenges do Black and Latinx veterans face in lung cancer? Expert Dr. Drew Moghanaki from UCLA Health explains the importance of trust, second opinions, and proactive advice for the best care.

[ACT]IVATION TIP

“…for anyone who might have some trust concerns. No one owns you as a provider that you have to get care from them. If you’re comfortable, you can ask for a second opinion. If not, it is absolutely okay. Patients all the time are getting second and sometimes even third opinions. And I strongly recommend getting another opinion if you’ve got any questions or doubts, because that trust alliance is so important to get the best lung cancer care…”

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See More from [ACT]IVATED NSCLC Veterans

Related Resources:

How Can Advanced Lung Cancer Be Explained to Newly Diagnosed Veterans?

How Can Advanced Lung Cancer Be Explained to Newly Diagnosed Veterans?

Lung Cancer Strategies for Veterans | Research and Care Insights

Lung Cancer Strategies for Veterans | Research and Care Insights

Insights into Veteran Healthcare | Perspectives from VA and Civilian Systems

Insights into Veteran Healthcare | Perspectives from VA and Civilian Systems

Transcript:

Lisa Hatfield:

Dr. Moghanaki, what specific challenges do veterans from the Black and Latinx communities face when trying to access healthcare services, and what are we learning from these challenges, and how is that information shaping care for veterans facing lung cancer?

Dr. Drew Moghanaki:

Well, this question just reminds me that healthcare is complicated, especially lung cancer care. And the most important thing for anybody getting care, regardless of what social, economic background or ethnic background they may be from, is to find a team that you trust and who you know will care about you. And that’s the best way to make sure you get the best treatment. I myself as a physician. I’ve also been a patient at times.  And if I don’t trust my care provider, I basically ask for a change. And I know that can be difficult.

And so here’s my activation tip for anyone who might have some trust concerns. No one owns you as a provider that you have to get care from them. If you’re comfortable, you can ask for a second opinion. If not, it is absolutely okay. Patients all the time are getting second and sometimes even third opinions. And I strongly recommend getting another opinion if you’ve got any questions or doubt, because that trust alliance is so important to get the best lung cancer care, because it’s not going to be a one-time visit. You were talking about relationships that can last months or even years to get the best treatment for your lung cancer.


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Lung Cancer Strategies for Veterans: Research and Care Insights

Lung Cancer Strategies for Veterans: Research and Care Insights from Patient Empowerment Network on Vimeo.

What’s important for veterans with lung cancer and care partners to know about research and care? Expert Dr. Drew Moghanaki from UCLA Health discusses research initiatives, screening recommendations, and patient advice for proactive care.

[ACT]IVATION TIP

“…if you’ve got a cough that won’t go away, push hard to say, ‘Look, I really just want to take a look inside my chest.’ It won’t be a low-dose screening chest CT. It’ll be a regular chest CT. And that CT, even if normal, can be a nice baseline for future scans in the future if more scans are needed.”

Download Resource Guide | Descargar guía de recursos

See More from [ACT]IVATED NSCLC Veterans

Related Resources:

How Can Advanced Lung Cancer Be Explained to Newly Diagnosed Veterans?

How Can Advanced Lung Cancer Be Explained to Newly Diagnosed Veterans?

Do Black and Latinx Veterans Face Unique Lung Cancer Challenges

Do Black and Latinx Veterans Face Unique Lung Cancer Challenges?

Insights into Veteran Healthcare | Perspectives from VA and Civilian Systems

Insights into Veteran Healthcare | Perspectives from VA and Civilian Systems

Transcript:

Lisa Hatfield:

Dr. Moghanaki, can you speak to your research around strategic initiatives for veterans facing lung cancer? And what should your patients, their care partners be asking as they seek care?

Dr. Drew Moghanaki:  

I really care about driving down the symptoms and the burden of lung cancer, and there’s a lot of great treatments out there that are safer and more effective than ever before. Our patients are living better lives and longer lives, and I really focus a lot on that type of research. But one of the things that really probably has the biggest benefit is just earlier detection. And early detection takes place by having an annual chest CT scan with a certain type of CT scan that’s a lower dose of radiation that the scan requires. And we don’t scan people who have symptoms.

So I’m talking about people who are at risk. And right now, our best measure of who’s at risk for getting lung cancer are people who smoked a lot of cigarettes in their lifetime. And they basically once a year get a scan, and we’re looking for lung cancers at the earliest time that they’re sprouting, and that’s because if we catch it early, we’ve got the safest treatments and the most effective treatments and the highest cure rates, and so my activation tip is if you know anybody or if you yourself are at risk for lung cancer because there’s a lot of smoking going on, please get your lungs screened and talk to your primary care provider to get that lung screening scan ordered.

Lisa Hatfield:

Okay. And just a follow-up question for that, if a person does have some type of symptoms, or if I guess if they’re a smoker also, but they have some type of symptoms and they say, “Oh, I’d like to have this low dose chest CT scan.” Can they just ask their primary care provider about that? Or are they, are PCPs automatically going to screen people who have symptoms or have been long-time smokers?

Dr. Drew Moghanaki:

It’s really a standard of care to get some imaging of the chest. If you’ve got somebody with a cough that won’t go away or some sort of pain inside the chest. In that situation, we don’t get a low-dose chest CT. We get a regular CT to take a look. Now, one of the things is if a patient has smoked a lot, people really start to worry, this might be lung cancer. But one of the things that we’re seeing is there’s a lot of people getting lung cancer who never smoked or they just smoked a little bit. And the doctor may say, “Well, I don’t think you’re going to get lung cancer.” And they don’t get a scan. And that’s actually a problem.

So for those patients, my activation tip is, look, if you’ve got a cough that won’t go away, push hard to say, “Look, I really just want to take a look inside my chest.” It won’t be a low-dose screening chest CT. It’ll be a regular chest CT. And that CT, even if normal, can be a nice baseline for future scans in the future if more scans are needed. It’s always good to have a baseline at an earlier age, so we can see if new things show up, if they’ve been there for a while, or if they really are new.


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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

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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

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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Lung Cancer Care Decisions | Advice for Self-Advocacy

Lung Cancer Care Decisions | Advice for Self-Advocacy from Patient Empowerment Network on Vimeo.

Program Description: Should you see a lung cancer specialist? Dr. Erin Schenk shares advice for being proactive in your lung cancer care, the importance of speaking up and asking questions, and the benefit of seeking a second opinion with a specialist.

Dr. Erin Schenk is a medical oncologist, lung cancer researcher, and assistant professor in the division of medical oncology at the University of Colorado Anschutz Medical Center. Learn more about Dr. Schenk.

See More From INSIST! Lung Cancer

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Non-Small Cell Lung Cancer Essential Testing | What You Should Know

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Personalized Lung Cancer Treatment | Key Factors to Consider

Personalized Lung Cancer Treatment | Key Factors to Consider


Transcript:

Katherine Banwell:

Because this program is part of our Insist series which empowers patients to insist on better care. Can you tell us why you think it’s important for patients to speak up and engage in their lung cancer care decisions? 

Dr. Erin Schenk:

Absolutely, and I think as a physician it’s important not only to partner with patients but as well as their loved ones and their caregivers who help navigate this diagnosis of lung cancer. There are some diagnoses in the world, cancer being one of them and lung cancer especially that can turn everything upside down. So, it completely changes your world. Suddenly the life as you’ve been living it, the plans you had they all have to be paused or halted in some way to get care for the lung cancer diagnosis.  

One of the – and one of the really hopeful parts about being a doctor who cares for patients with lung cancer is just the speed of the advancements and the speed of the changes in the treatment options that we have for patients diagnosed with really any type of lung cancer.  

And so, I think it’s really important when you’re meeting with your team and you’re talking with your cancer doctor to really try to understand what is the information that they use to make some of these decisions or referrals on your behalf? And also, think about, is there an opportunity for me to get another opinion about what might be the best options?  

Katherine Banwell:

When should patients consider a second opinion or even consulting a specialist? 

Dr. Erin Schenk:

I think any time it’s appropriate. We – at our institution, we’re one of the main lung cancer centers that – you know, within several hundred miles, so we frequently see patients and sometimes it’s just to check in and say you know, the patient says, “Here’s what my team has started me on. You know, what do you think should be the next approach?” and we talk about that, but really anytime I think is appropriate for reaching out for another set of eyes to look at things. I would say perhaps some of those most critical times would be prior to treatment starts especially if – yeah, I would say prior to starting a treatment with that new diagnosis.  

That would be a really critical time because often again, sometimes once we start down a treatment path, we’re in some ways we’re committed, but if that maybe isn’t the optimal treatment path based on, you know, the tumor and the biomarkers and the patient preference starting on that less optimal treatment path could potentially hurt patients in the long run. So, I would say at – you know, potentially at diagnosis when a treatment course is recommended and then if there is a need to change treatments.  

So, for example, especially in the metastatic setting there are certain therapies widely available. People are very familiar with them, can start them no problem, but when those treatments stop being beneficial that might be a time to also meet with a specialist or go to a lung cancer center of excellence to get their opinions on what to do next.  

HCP Roundtable: Overcoming Lung Cancer Biomarker Testing Challenges

HCP Roundtable: Overcoming Lung Cancer Biomarker Testing Challenges from Patient Empowerment Network on Vimeo.

The lung cancer field continues to experience tremendous growth in precision medicine. Oncologists have more tools to treat lung cancer, but access and language remains a big factor in biomarker testing. Drs. Jessica Bauman and Lyudmila Bazhenova discuss current issues in NSCLC biomarker testing, insights on how providers can explain biomarker testing to their patients and their families, and how academic centers and community physicians can work together to overcome challenges in biomarker testing.

See More from Lung Cancer | Empowering Providers to Empower Patients

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Related Resources:

EPEP Biomarker Resource Guide

EPEP Biomarker Resource Guide 

Practicing Cultural Humility to Empower Your Patients 

How Do You Empower Patients?

How Do You Empower Patients?

Transcript:

Dr. Nicole Rochester: 

Welcome to the Empowering Providers to Empower Patients or EPEP program. I’m Dr. Nicole Rochester, a pediatrician and the founder of Your GPS Doc. In this unique program, we connect leading lung cancer expert voices to discuss enhancing physician patient communication and share decision making in lung cancer care. Some of the questions we’re going to talk about today include, what are the major successes and challenges around biomarker testing? How can experts in academic settings work with those in community settings to overcome challenges in biomarker testing? And also, what are the best practices for discussing and explaining biomarker testing to your lung cancer patients? 

Thank you. I’m thrilled to be joined today by noted lung cancer medical oncologist, Dr. Jessica Bauman from Fox Chase Cancer Center in Philadelphia, and Dr. Luda Bazhenova from UC San Diego Medical Center. Thank you both for joining us in today’s round table.

Dr. Jessica Bauman:

Thanks for having us.

Dr. Lyudmila Bazhenova:

My pleasure should be here as well.

Dr. Nicole Rochester:

Thankfully, research in lung cancer is ongoing and remains at a fast pace, but with that pace often comes challenges of keeping everyone up to date, providers included. So we have a lot to cover today. So I want to start by just providing a general overview of biomarker testing and lung cancer therapy. So I’m going to start with you, Dr. Bauman. Can you discuss some of the general guidelines for…sorry. So I’m going to start with you, Dr. Bauman. Can you discuss existing guidelines for genomic biomarker testing for lung cancer?

Dr. Jessica Bauman:

Sure. I’d be happy to. So genomic and biomarker testing in general has really been at the forefront of many conversations about lung cancer over the course of the last decade or longer, 20 years. Because it has really changed our approach to patient care and individualized the way that we treat and make decisions about patients with lung cancer. And so what this means, is for every single person who has a new diagnosis of lung cancer, essentially everybody is now recommended to have molecular testing on their individual tumor samples to help us decide what treatment decisions are the best for them. Now, it used to be that this was really only recommended for patients with a new diagnosis of metastatic lung cancer, but now we’re seeing this really influenced decision-making earlier on than the metastatic setting.

And so we now have treatment approaches that change based on molecular testing for early stage one cancer as well. And so, although it used to be more of a later stage, necessity, now we really…we really now need the information sooner than ever before. And when we say molecular testing, this is really looking at the individual tumor and what is potentially driving the cancer to grow. So to look for oncogenic drivers that change treatment. So I call this with my patients, I call this the alphabet soup. But this includes, EGFR mutations, ALK, ROS1, RET, HER2 as well as many others that influence the potential treatment options that we have for our patients.

Dr. Nicole Rochester:

Awesome, thank you. That is a great overview. Do you have anything to add to that, Dr. Bazhenova?

Dr. Lyudmila Bazhenova:  No, I think that was very nicely summarized. I think an important thing is that we have to test, we cannot guess. We have to know what our patients…what mutations our patients have, and then we have to know what to do with that. That’s kind of a second part of the question.

Dr. Nicole Rochester:

Wonderful. So it sounds like this is really kind of revolutionary in the sense that, like you said, we can now provide very individualized treatment for lung cancer patients. So I’d love for the two of you to talk about some of the successes in testing over the past decade for lung cancer patients. And we’ll start with you this time, Dr. Bazhenova.

Dr. Lyudmila Bazhenova:

I think our successes actually became our challenges. We have seen an explosion of targetable oncogenic drivers. If you look at the FDA approvals for oncogenic driven therapy, we have a first approval in 2004 and then there was kind of a silence for almost a decade. And then starting in 2014, every year we now have three or four drugs approved. And also those drugs are being approved for the same indication, but different companies. So I think it is very hard for a practicing oncologist who have diseases other than lung cancer to actually keep up with exploding information that they need to know. And I think that’s why I say our success is our challenge, our success is that we are now in lung cancer have 10 oncogenic drivers that we have treatment for.

Our challenge is to remember that there are 10 oncogenic drivers. It’s becoming even more complicated because if you take, for example, an EGFR story, we don’t just need to know that the patient has an EGFR mutation. We need to know what type of EGFR mutation we have, that patient has. And it is no longer three categories. Like even looking in atypical mutations, we now separate out so-called pack mutations, which are treated differently than anything else. So it’s difficult for a practicing physician, or mid-level practitioner to remember what even to do for lung cancer, but they have to do a breast cancer and colon cancer and everything else. So it is a challenge currently.

Dr. Nicole Rochester:

I appreciate you highlighting that. A lot of times it’s like a double-edged sword, right? What are your thoughts, Dr. Bauman, and in terms of the successes as well as some of the challenges?

Dr. Jessica Bauman:

So I absolutely echo what Dr. Bazhenova is saying in terms of the amazing successes, right? We now have for multiple different populations, we have an oral medication that can treat their cancer with the hope that it keeps that cancer under control for many, many months and for some people even years. And I think the challenge is absolutely keeping track of all of those different mutations and then what is actually targetable. And if you have, is it a mutation? Is it a fusion? Is it… What exactly is it that allows you to then use that targetable therapy? Is certainly one challenge. The other challenge is getting that information as soon as we can get it. So you can imagine, so somebody comes in to see me with a new diagnosis of metastatic lung cancer, right? Their biopsy was done say two weeks at a different hospital, and their first scan was done six weeks ago.

So now they’re already six weeks into the concern of a diagnosis of lung cancer, and they’re symptomatic and they come to see me and say, what am I going to do? And we have to get all of that information as fast as we can, because it completely changes the way we’re going to treat them. And so creating systems, in particular reflex testing systems such that this is sent immediately so that by the time they’re seeing me we already have this information is really important. But that, I think that is sort of at its infancy. At Fox Chase, we’ve worked on our sort of reflex system for a very long time. And it’s still, every time there’s a new approval, it seems like it changes slightly or there’s a new system that we have to think about it. But at the end of the day we also…one of the challenges is making sure that we streamline the processes in which we get this information in the best way we can because tissue can be limited.

There is a lot, making sure that you actually get adequate tissue sampling to be able to test for everything that you need to test for is really important. Then figuring out where to send the testing. Many academic centers have internal panels that they send for molecular testing, but there are so many different companies that advertise doing some kind of molecular testing. And so knowing which of those companies to consider using, what they’re offering, which ones offer RNA sequencing, for example, because that is a particularly important aspect, in addition to DNA sequencing that we need. And so sort of keeping track of all of that is particularly challenging. And then I think the last thing is, I think it’s the needing this information earlier and earlier in a diagnosis.

Dr. Jessica Bauman:

And so once upon a time, it really was the medical oncologist who could drive this and run the show because it was really, we needed it for somebody with metastatic disease, right? And we’re sort of the captains of the ship per se, when someone has a new diagnosis of metastatic disease. However, now there’s adjuvant therapy for patients who have EGFR mutations after a surgical resection. And so we need, the surgeons also need to really understand that we need this information. And they often are now getting these tests before a medical oncologist even sees the patients. And so it isn’t just medical oncology, it’s also now, it’s going into multiple different specialties who also need to understand what these mutations mean and what to do about them, and then how it influences therapies.

Dr. Nicole Rochester:

Wow, you all have really done such a great job highlighting both the successes and the challenges. And it’s a perfect segue into my next question because you just alluded to, Dr. Bauman, this idea of academic medical centers and the challenges that you all are facing in cancer centers. And we know that many patients are receiving their care in the community, and in fact, sometimes it’s this dichotomy between what happens in the academic setting and the community setting that can actually create and perpetuate disparities. So my next question really has to do with how can lung cancer experts in academic settings partner with, collaborate, work with those experts in the community settings to overcome some of these challenges that you all just talked about as it relates to biomarker testing? So I’ll start with you, Dr. Bauman.

Dr. Jessica Bauman:

So, that’s a million dollar question. I do think there are many opportunities of educational opportunities to continue to educate everybody in terms of lung cancer. I think lung cancer is a very common diagnosis. And so we know that many community providers absolutely deliver excellent lung cancer care. And so making sure that there are many opportunities for them to participate in, either citywide or nationwide educational opportunities for updates on lung cancer. We have in Philadelphia, we actually have an academic, sort of a multi-multidisciplinary, multi-institutional tumor board, thoracic tumor board that happens quarterly, which we invite community providers to to discuss some of the latest literature. Certainly our emails are always available, so we can always bring there, certainly we get many different questions that come in from other providers, but I’m sure we could do a better job. And I’m very curious to hear what Dr. Bazhenova thinks about this as well, because I think it is such a huge challenge.

Dr. Lyudmila Bazhenova:

I agree with you fully, and I think my two cents here is I think we have to recognize and accept that one size does not fit all in this situation. And whatever works for my institution is probably not going to work for a smaller community practice. But as long as we recognize that this needs to be done and each community practice can work with their stakeholders in the molecular testing pathway, like molecular pathologists, regular pathologists, surgeons. Each institution has power to establish their own internal pathways. Would it be what Dr. Bauman says, reflex testing, which is probably not going to be an option for a majority of the community setting because they do not have their own NGS. It’s going to be a sendout. Or like in our institutions, we don’t have a reflex molecular testing. It’s us medical oncologists who are ordering it, but we kind of get it on the backside.

We can get the patient in within 24, 48 hours from the consult was put in. And so that’s why we didn’t do the reflex testing, but as the reason we did it is because we sat down as a team and we decided this is what works for us. So I encouraged the community groups again, sitting down saying, okay, the task in hand is lung cancer patient has to have molecular testing at the time of the diagnosis. How are we going to get it and how are we going to make sure that we are not missing, you know, have some kind of internal QI, and make sure you know what your practice is doing rather than assuming that your practice is doing molecular testing for all the patients.

Dr. Nicole Rochester:

Thank you so much. Did you have something you wanted to add, Dr. Bauman?

Dr. Jessica Bauman:

Yeah, I was just going to say, and I think that so many things are happening before they ever see us, that includes a pulmonologist is going in and doing a biopsy, right? Or an interventional radiologist is getting a biopsy. So it has to start way upfront of the actual diagnosis because the, what you want to try to get to capture the information as soon as you can, right? So you don’t want to get just an FNA biopsy, for example, of a liver lesion knowing that three weeks later what you really need is a core biopsy, right? So it really, the path you do, it involves so many different stakeholders when you’re having conversations about how to streamline this for your own institution and practice.

Dr. Nicole Rochester:

So both of you have really touched on the challenges even among physician-to-physician communication and the fact that by virtue of the diagnosis and the treatment, there’s lots of different specialists involved, the timing of which can be very crucial. And so shifting to physician patient communication, which we know is fraught with even more challenges. Can you each share some examples from your own practice around improving physician patient communication that may serve as exemplary for providers that are watching this program? And we’ll start with you, Dr. Bazhenova.

Dr. Lyudmila Bazhenova:

I think it also has some challenges, because in the current environment of practicing medicine, we are, as physicians, we are pushed to see more patients, it’s all about productivity. So when you do that, something has to give. And a time that we can spend with the patient is limited. And I think it’s important, for myself, as a practice, I have the same, I call it spiel that I give to all my patients. It’s the same picture I write down when I speak and I give that paper to the patients. I’ve had, you know, created some preprinted things that I used to give to the patients. Don’t do it anymore. But I think that’s another thing, have some kind of information that is a patient level that I can give to the patients.

And I think we have to educate the patients as well, either by ourselves or using the platforms that we are exhibiting here, that is outside of our primary institutions. And to make sure that the patients are aware that each one of them who have a stage IV lung cancer, as well as early stage lung cancer needs to be tested for the molecular testing. And kind of put it also have the patient question the physician, did you do that? Was that test done? That’s one part of information.  And I think the second part is, we do have to do better in allowing our patients to get a faster access to us. And we kind of accept the fact that we are going to be working after hours. When the clinic is over, that’s where I’m going to go to my charts, and I’m going to answer my patient’s question.

It’s kind of an intrinsic, is the work of the physician. Hours is…unfortunately, doesn’t really count. There is no limit to that. So whatever it works, like having a nurse educator. We have in our institution, we have…we call her tissue coordinator, but she’s the person who can actually make sure that the tissue is done, she can also make sure that reports are sent to the patient and make sure that patient has ability to ask questions of somebody. And I think the EMR, electronic medical record, it’s kind of a love-hate relationship, I think, with all of us. But one thing that I find it made it much easier for me is to communicate with my patients using my chart and this ability to release the result to the patient by one click of a button, that saves time for me so I can spend that time to actually visit the patient and explain to the patient what needs to be done.

Dr. Nicole Rochster:

That is awesome, thank you. Do you have anything to add, Dr. Bauman?

Dr. Jessica Buaman:

In terms of challenges of discussions with patients?

Dr. Nicole Rochester:

Yeah, and best practices. So Dr. Bazhenova mentioned using portal, which I think is awesome, and really educating patients in a way that allows them to ask questions of their providers. Any other insights or tactics that you use?

Dr. Jessica Bauman:

Yes, yes, I agree that I think that this overall requires a lot of education, and especially when patients come in and they want to know tomorrow or yesterday, actually, what they’re going to get for treatment and what we’re going to start with. And so telling them that actually we still can’t decide for at least another week or two, that in of itself can be challenging. I think the other piece of this that’s always important is, in general, when we’re doing molecular and biomarker testing, we’re looking for changes in the tumor, we’re looking for what we call somatic mutations, but there is also the second concern where on rare occasion, issues with molecular testing can bring up issues with germline testing, meaning some abnormality that’s found that may impact their own familial risk for cancer, and so that of course requires a lot of thought and careful education as well, in addition to the treatment decision-making that we’re really ordering the test to decide upon.

Dr. Nicole Rochester:

Really good point. Because if there’s a familial aspect, like you said, that brings up an entirely another layer of discussion and worry and concern as well. Well, Dr. Bazhenova I know that you lead a weekly tumor board for lung cancer, and I’d love to learn more about some of the things that you can share that may be insightful for other lung cancer experts as a result of the tumor board.

Dr. Lyudmila Bazhenova:

At UC San Diego, we actually have two tumor boards where lung cancer patients can be presented, one is just a traditional multidisciplinary thoracic tumor board, which is attended by a medical oncologist surgeons, radiation oncologist, pathologist, interventional people, clinical trial coordinators. And I think this is not unique to UC San Diego. The multidisciplinary tumor boards are available in all major academic institutions. And I think lung cancer care is becoming more and more multi-disciplinary, especially with the new advances of new adjuvant to chemo immunotherapy and controversies we still have to this point in management of stage three disease. And I think what I find in a multidisciplinary tumor board…

Because I think what I want to build upon as Dr. Bauman statement that she said that times of an essence here, and I think the multi-d tumor board help us make medical decisions on the spot rather than me sending a patient to see a surgeon or sending a patient to see radiation oncologist and sending patients to see interventional radiologist, and then the IR is telling you, “Oh, we can’t do that biopsy, you gotta send it to the pulmonologist.” I think that actually streamlines the patient care. The second tumor board what we have, that maturity of the lung cancer patients actually don’t get presented there, it’s a molecular tumor board. And the reason why we don’t present majority of the lung cancer patients there because management of antigen-driven lung cancer is pretty straightforward.

I think only presentations I would ever make there if they have an unusual mutation that I can’t find any information about, then I need the help of our molecular pathologist, but it is a good avenue for those weird rare molecular abnormalities that I’ve seen in other malignancies and so that is another option. And there’s actually…many institutions have molecular tumor boards as well. We do open our tumor board not to all communities. So we are not as good as you, Dr. Bauman. So only one community practice can join us because they’re kind of part of us, so we don’t usually…we don’t have it open to the whole community, and I think as an academic institution, we probably should strive to have an open tumor boards where everybody can join and listen and present and that’s the most important.

Dr. Jessica Bauman:

I do want to say, we don’t..I must have misspoken, we definitely don’t include community practices. So I do think that that would be a fantastic offering in the sense of some of the… I don’t know that we could do that on a weekly basis, but consider something like on a monthly basis or even a quarterly basis of a true tumor board where people can present cases in real time from community practices.

Dr. Nicole Rochester:

Awesome, yeah, I think based on everything that you all have shared, that would definitely be an added benefit for sure. So circling back to communicating with patients, you all have already shared the challenges related to productivity and the limited time that we have with patients and some of the things that you have been able to institute. I wonder if either of you or both of you have any thoughts around unique things that you’ve implemented that have allowed you to really connect and communicate with your patients in spite of these time limitations. So I know we talked about using the portal, which is an amazing resource. Are there any unique things that you all have implemented in real time, like face-to-face, when communicating with patients?

Dr. Jessica Bauman:

So I would say we did a pilot study that has not been implemented full time, and really I think we’re still working on how to best implement something like this but we did a pilot study using sort of educational materials, and this whole sort of pathway and educational system in coordination with our nurse navigators, where you could send sort of a prescription to the patient of reading material or of educational material, as they’re going along. And so, with the idea that early on that one of those prescriptions would be more information about molecular testing and biomarker testing, decision making, all of those types of things.

We did a small pilot study to incorporate that, which on the surface is fantastic but it was surprisingly challenging to do, to actually implement. And I think that was…we were doing this, again, in collaboration with one of the researchers, the nurse researchers at our institution, and we hit more barriers than expected, because I think we all, as you say, we all want to educate, we all want to make sure that our patients understand and get the information that they need, but the practicality of doing that really successfully and in a streamlined way but that’s also consistent across providers across the institution, it’s a challenge.

Dr. Nicole Rochester:

Yeah, I can imagine. Are there a chance to extend the pilot or to maybe modify it based on what you all learn from the initial study?

Dr. Jessica Bauman:

I think that that’s… It’s certainly in discussion about how to best implement something like this. Part of that is… Again, sort of systems change. The role of the clinic nurse, the nurse navigators has changed a little bit and so even how we envision implementation is going to need to shift somewhat.

Dr. Nicole Rochester:

Wonderful. What about you, Dr. Bazhenova? Any pilot studies or any other maybe tips and tricks that you employ independently?

Dr. Lyudmila Bazhenova:

Yeah, we haven’t had any pilot studies but I think the more I think about it…so the challenge of discussing those molecular testing with the patients is the fact that majority of those molecular testing discussions happen in stage four patients and majority of those discussions happen during the first visit for a patient with stage four lung cancer where we just discussed that this is an incurable cancer with limited life expectancy. And then how much does our patient actually absorb anything else we said afterwards is still remain to be seen. And I actually have seen like when I talk to the patient because they are so understandably fixated on their prognosis and survival, because it’s going to affect their lives that after that my patient asked me a question that I know I’ve discussed it already because I have my spiel.

I tell the same thing to everybody. And I think now kind of thinking about it out loud after that, during that discussion and maybe we could set up another appointment with a nurse practitioner afterwards, that after the patient kind of already digested all that information, to go over again the management of the molecular abnormalities. And one thing I actually want to highlight and build upon something that Bauman said before, that in those patients we actually usually wait for the molecular testing to come back before we start their therapy. And it is much easier to just prescribe chemotherapy immunotherapy for those patients.

But then you’re going to run into issues of toxicity because if you gave immunotherapy before you give for example EGFR TKI and some ALK TKIs, you can actually going to run into toxicity and you can permanently prevent your patients from continue on tyrosine kinase inhibitors. And so that’s why this is an information that not all oncologists, especially those who practice in a tobacco belt where they don’t see a lot of oncogenic driven patients, they might not be aware of that. And I think how do we pass that information to the physicians, and also how do we pass that information to the patients that there is an easy way, but easy way in this situation is not the right way?

Dr. Nicole Rochester:

Wow, so many competing priorities. This has been a fascinating conversation. It’s time for us to wrap up but I really want to thank both of you for offering your insight and your expertise. And I’d love to get some closing thoughts. We’ve shared, you all have shared so much about the challenges, as well as the successes, you’ve offered some insight into some things that can probably be further developed in the future. So as we wrap up, I’ll start with you, Dr. Bauman, what are some closing thoughts that you would share with the providers that are watching this program?

Dr. Jessica Bauman:

I think I would again highlight just how imperative it is to create systems early on to identify how you’re going to get molecular testing on all of your lung cancer patients, and then have a good tracking system to make sure that it’s incorporated in your notes that you have potentially a database within your practice, so that you really are aware of the different molecular abnormalities that your patients have and then potential treatment options that they have later. And that to understand that this really is a multi disciplinary approach where everybody needs to understand the importance of adequate tissue, and how it can influence decision-making, even now with somebody with a stage one lung cancer.

Dr. Nicole Rochester:

Thank you so much. What about you, Dr. Bazhenova?

Dr. Lyudmila Bazhenova:

I fully agree with Dr. Bauman. So the one thing, kind of to add upon, as we’ve talked about before that molecular abnormalities and lung cancer becoming very complex NTRK point mutations is not the same thing as NTRK fusion. One responds to NTRK therapy and the other does not. And for every physician, you know what, if you’re using the molecular testing companies outside of your own institutions, just be aware that that molecular testing company does have a molecular pathologist on staff that you can actually talk to, and they do respond and they do reply. So if you have a mutation that you’re like, “I don’t know what that is.” Pick up the phone and call that company and they will be very, very happy to discuss the mutation with you and just highlight what is an appropriate treatment for that patient.

Dr. Nicole Rochester:

Thank you. Thank you both so much. Just to summarize, I mean, I have learned a lot which I always do in these programs, and to summarize, you all have spoken about the importance of biomarker testing, the evolution of testing and the importance and how it’s used now for not just late stage but early stage cancer. You’ve talked about the complexities associated with biomarker testing and really the need to fully adopt a multidisciplinary approach, not just as it relates to diagnosis and treatment, but even as it relates to communicating with patients and bringing in those nurse educators and those navigators and making sure that we take a multidisciplinary approach.

And you’ve also shared some insight about tips for communicating with patients, despite the time limitations that we face in the clinical environment and so I’m just really thankful for your time today. Really grateful for your expertise, and I want to thank all of you for tuning into this Empowering Providers to Empower Patients program. Have a wonderful day.

Dr. Jessica Bauman:

Thank you.


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How Can I Get the Best Lung Cancer Care?

How Can I Get the Best Lung Cancer Care? from Patient Empowerment Network on Vimeo.

How can lung cancer patients access optimal care? Expert Dr. Christian Rolfo from Mount Sinai and Dr. Nicole Rochester discuss the latest lung cancer treatments and research, lung cancer testing, equitable care, and patient-centered care for the best health outcomes.

See More from Best Lung Cancer Care

Related Resource:

Lung Cancer Treatment Landscape Overview

How Do Lung Cancer Patients Benefit From MRD Testing?

What Are the Latest Lung Cancer Treatment Updates?


Transcript:

Dr. Nicole Rochester: 

Hello and welcome. I’m Dr. Nicole Rochester, I’m a pediatrician, a professional health advocate, and your host for today’s Patient Empowerment Network program. We are so happy that you tuned in. How can you access the best possible lung cancer care? What do the latest combination therapies mean for you? Should you consider a clinical trial as a path to enhancing your lung cancer care? This Best Lung Cancer Care program focuses on providing actionable steps to achieving equitable care and connecting to patient-centered care on your path to empowerment. We are joined today by international lung cancer expert, Dr. Christian Rolfo, Professor of Medicine and Associate Director for Clinical Research in the Center for Thoracic Oncology at the Tisch Cancer Institute. Thank you so much for joining us today, Dr. Rolfo.

Dr. Christian Rolfo: 

Thank you, Dr. Rochester, for having me. It’s a pleasure to be here. 

Dr. Nicole Rochester: 

Wonderful. I’m looking forward to our conversation. Now, following this program, you will receive a survey and we would be thrilled to get your feedback because this helps inform future lung cancer programs we produce. Please remember that this program is not a substitute for seeking medical care, so please be sure to connect with your healthcare team regarding the best options for your care. Now, let’s delve into this very important topic, how can I get the best lung cancer care? And, Dr. Rolfo, we’re going to start with an overview of the lung cancer treatment landscape. We know that this landscape is rapidly changing and keeping up with the pace of developments could be a challenge not only for doctors, but certainly for patients and family members, so I was hoping that you could give us an overview of the current lung cancer treatment landscape.

Dr. Christian Rolfo:

In the last year, lung cancer treatment was changing radically. We have actually, including some of their new concepts as precision medicine or personalized medicine, that we have actually different therapies that are specifically for some group of patients, that they have specific alterations in their tumors. And when I’m talking about alterations I refer to mutations, genomic alterations that can be targeted nowadays with specific medications, and currently, some of them are actually, the majority of them are actually pills, for example. So it was changing radically and we are not using it like before chemotherapy for everyone. Another area of important interest was the introduction of immunotherapy, this is also an important tool for fighting cancer, and there you have a substance that are administered generally, all of them are intravenous, and this is the principle of that is to await from your own inner system, from the patient immune system, they are the tools to fight against the cancer, so it’s a very innovative way to approach cancer, and this is.

The good thing is that these two approaches targeted therapies, immunotherapy, and also still obviously the combination with chemotherapy in some of the case with immunotherapy, we can use not only metastatic patients, so in patients who have advanced disease, but also we can use in patients who have earlier stage that they were operated, for example, and we want to prevent that this patient is not going to a further process of cancer metastases, or there are several, several innovations. Then we have innovations that are coming also from local treatments and we call local treatments the one that, for example, surgery or radiation, we have new technologies also that are arriving there, and the combination sometimes with the medical treatment or systemic treatments that are going everywhere that is the description of systemic are helping these patients to have not recurrence and improving. Actually, lung cancer survival was really improving in the last years, and we are very excited by that because, unfortunately, it’s very still an aggressive disease that we were able to change with all this armamentarium the prognosis of these patients.

Dr. Nicole Rochester:

Wow, that’s a lot. I mean it’s exciting to hear that there are so many new developments on the horizon and that so much has happened just in the last year as it relates to therapy. What have we learned about drug resistance as it relates to non-small cell lung cancer? Are there any new developments in that area?

Dr. Christian Rolfo:

Yeah, obviously the patients of the…as I just commented, we have different patients with different needs and different scenarios, so we are now fragmenting a lot of the diseases and we have actually different diseases, and one big disease that is the lung cancer, so now we are treating patients in a different way. And some patients have, for example, patients who are under treatment with targeted therapies, they can develop mechanics of resistance that we can nowadays not only identify but also treat. 

So we can treat and change the recurrence of these patients. One of the tools that we are using for that is liquid biopsy, for example, that is this blood draw that we are going for the patients, and actually, we are trying to do this determination from the very beginning and also monitoring the patients after we have this information to see if we are able to determine the mechanics of resistance, see also the outcomes of some of the therapies and change the treatment when it’s necessary. In immunotherapy, we have alterations that are resistant or refractory, that is another way of definitions so refractory we say patients that are not responding during the treatment and resistance of patients that or simply patients that are after the treatment having a progression in a very short time, so we need to identify these two categories and try to treat them in different ways that we have armamentarium for that as well.

Dr. Nicole Rochester:

Wonderful, thank you for that. So you’ve mentioned a lot about updates, are there any other exciting updates that patients and families should know about related to lung cancer, maybe things that are in the works that we may hear about in 2023?

Dr. Christian Rolfo:

Yeah, I said, for example, liquid biopsy I was mentioning liquid biopsy, and we are focused obviously, and in patients that have advanced disease or when they have this disease that is already confirmed. But we are now moving the tools that we have to the dedication of cancer using liquid biopsy from the very beginning, so we can use a minimal residual disease that is patients after the surgery. And I think I hear answering one of the questions that we have in the chat that this minimal residual disease is the quantity of two more that sometimes we are not able to see in the images or is very tiny, and we have equivocal information, the possibility to discover the patients that after surgery, have the possibility to recurrence or have come back of the disease is really important. 

And also we are looking for early detection of lung cancer trying to identify patients with the high-risk populations that they are maybe having the opportunity to be in lung cancer screening because they are smokers, or because they have all the characteristics on top of this model that we can also use the liquid biopsy there. But one of the most important messages that I want to say, because I mentioned it here smokers and I want to remind you that we have a big proportion of patients around 20 to 25 percent of the patients that they never smoked and that they can develop lung cancer, so we have a motto, we say if you have a lung, you can have it because we want to break this stigma that lung cancer has the only patients who are smoking, obviously, smoking and tobacco are related highly with lung cancer. 

Dr. Christian Rolfo:

But also we have patients that are second-hand smokers or they have other causes of lung cancer, so we need to be aware and we need to try to get attention for that because, in this special population of non-smokers, we know that there is a special characteristic that we can treat them completely different, so it’s very important that we identify those patients as well.

Dr. Nicole Rochester:

I really appreciate you sharing that, Dr. Rolfo, because as I’m sure you know, there’s a lot of stigma associated with lung cancer and the assumption that if you have lung cancer, then that automatically means that you are a smoker, and not that we know that people who smoke, those are challenges, but to just acknowledge that not everybody with lung cancer is someone who is a smoker, and also that the approach, the treatment approach may be different, so I really appreciate you pointing that out.

Dr. Christian Rolfo:

And actually Dr. Rochester, you know this stigma was causing several domino effects. We have less funding for research, we have less support from the community sometimes like other tumors have, for example, breast cancer. So if we are looking specifically in lung cancer, the quantity of women that are dying or are going to a diagnosis of lung cancer, it’s very impressive, but actually it’s killing more people sometimes than other tumors. So we need to be very careful with this stigma because we need…and this is a call for action, now we need more funds, we need more support from the community, because this is a very important area that will need research.

Dr. Nicole Rochester:

Absolutely, so that brings me to the next section of our program, you’ve mentioned a lot of these therapies already, I just want to go a little bit deeper into exploring some of the lung cancer treatment strategies and also talk about clinical trials, so you talked about bio-markers. Can you expand a little bit on that? We know that no two lung cancers are the same. Can you explain to the audience how biomarkers help with lung cancer treatment and they can be so important? 

Dr. Christian Rolfo:

Yeah, we have different…as I say, we are looking at specific characteristics from the tumor when I’m referring to genomic alterations that I’m not referring to something that you can get from your family and bring to your descendants. So I’m talking about mutations that are occurring inside the tumors and only for the tumor, and so affecting only the subject that have this patient that has this alteration. So these biomarkers are an important way to identify populations that we can treat specifically, and I would like to be a little bit more specific on that. We have some of the alterations, for example, one of the mutations that we call EGFR or epidermal growth factor receptor mutation that is supported in different populations in different frequencies. 

For example, if we have patients that are with an Asiatic origin, we have there the possibility to have a…and I’m referring, for example, Chinese, Japanese, this area of the East Asia, we have a hyper-prevalence of these mutations in around 50 percent of the patients with lung cancer, non-squamous we’d say this is another characteristic of the tumor can have this specific alteration. If we are moving, for example, to Latinos, the pains of the areas of Latinos they are coming from, if you have Mexican or for example, Peruvian, they have also due to their ancestry, they are similar to the Asiatic population, 40 percent we’re going to white populations and Anglo-Saxons or Europeans, they have around 7 to 15 percent according to the different regions. 

African-Americans within 15 to 20 percent. So these kinds of alterations are giving us the opportunity to treat and we have nowadays inhibitors and that’s drugs that are from first, second and third generation, so we were evolving in January, this pharmaceutical in January to develop all drugs that are able to penetrate in the brain and acting not only in the tumor, but also in brain metastases. And patients who have this mutation, for example, are treated in first line, in front line, or the first treatment that they receive are pills, no chemotherapy. 

So for this reason, and that is something that is important because when we know that patients, when they start this journey of lung cancer diagnosis before they see an oncologist, they were struggling to get the diagnosis and then we’re passing through several doctors from the general practitioner or to the emergency room, going to CT scan and then a biopsy then a pulmonologist until they get the diagnosis, it’s a big period of time sometimes that we are very nervous because we want to each patient to have a treatment as soon as possible, and sometimes when they arrive to us, we say they need to wait until we have the results of these biomarkers.

So it’s difficult to understand, I put in the place of the patients and the families are really difficult to understand that I was passing a lot, I went here, I came here and I want your treatment right away, but this period that we are asking to wait is really important because we will have information that can change radically the treatment and the history of these patients. So one of the problems that we have in America is the lack of testing, so we have all the tools to test the patients, but if we are looking at some of the statistics, 50 percent of the patients have been tested…39 percent if we are moving to groups, for example, of African-Americans, so we need to be very careful that don’t push to get the treatment very quickly without having all the elements to this thing, which kind of treatment is the most adequate for the patient. 

Dr. Nicole Rochester:

That is such important information, and I really appreciate that, I appreciate it. That you put it in the perspective of the patients and family members. And that grueling, long wait, long time to diagnose this, and finally you’re in front of a specialist and the perception is that, Okay, now I’m going to get this treatment that I need, and then like you said to hear, now you have to wait a little bit longer, but also to understand that that wait is important to make sure that you get the treatment that is meant for your specific type of cancer, I think that is so incredibly important.

Dr. Christian Rolfo:

And believe me, we are trying to push as well from the that there are unfortunately technical times that we cannot overcome that are for testing and for having these results, and we can do that by like I said liquid biopsy, but also tissue biopsy, so we are sending the tissue that the patients gave for a biopsy in a biopsy or in a resection when they have surgery. We take these small biopsies and we send them for analysis and take longer sometimes, so it’s a pity, and we know but it’s the only way to go for the right treatment.

Dr. Nicole Rochester: 

So with regard to the biomarkers, you mentioned that these are kind of unevenly distributed among different populations depending on your origin, and so how does that play into the progression of the disease, what do we know about why patients with specific biomarkers have a different degree of disease progression?

Dr. Christian Rolfo: 

Yeah, so we know more or less that the characteristics, I mean more or less in terms of the evolution of the clinical characteristics of these patients, in terms of organ affection in case of progression, but what is most important of this is that we are able to continue to identify, and I say monitoring these patients with liquid biopsy for example, this is a good tool to understand or to understand it a bit better, which kind of mechanistic involvement. So because we have, for example, patients who were receiving the case that I was discussing before EGFR mutations and they received one graft from the very beginning, a third generation TKI is the one that is approved for the first line, and this patient has a progression.

 The possibility to have a mechanism of resistance is different, so we can have mutations that are coming in the same pathway, so in the same area, same kind of mutation, but different location, just to the people understand is the kind of line and we have the mutation that is here, the one that we are attacking, but we have another mutation that is in this area and it’s not covered by the track that is covering this mutation. 

Dr. Christian Rolfo: 

So we have nowadays drugs that are going to, in this area in clinical trials, or we have in other cases other areas of the task of mutations that have nothing to do with the original one. So we are activating another kind of pathway, or we are transforming the tumor from one kind of tumor to another kind of tumor, so for this reason, identify which kind of mechanism of resistance is in place can have an important or have important implications for how we are treating these patients, so we need to look at that to treat the patients.

Dr. Nicole Rochester: 

Wonderful. And speaking of resistance, we know that there are some patients who end up trying multiple therapies in order to treat their lung cancer, are there alternative treatment strategies for lung cancer patients who have failed all therapies? 

Dr. Christian Rolfo: 

Yeah, absolutely, we have research in lung cancer is never stopping in oncology generally, but in lung cancer it’s really exciting to see how this research is evolving and it’s arriving to the patients the meaning of the research when we are doing access to the patients, to the discovery of the finding that we have, and obviously, we have strategies in the clinical practice, but also we have the clinical trials. So clinical trials, and that is something we need to try to define very well because some patients believe that when we are going to clinical trials there are no more options or we don’t have any other options to do. We are sometimes using clinical trials even in the first line, so even in patients that are for the first time being treated. 

Because we know that some of the cases we are treating patients with from some standard of care and using drugs on top, we want to explore it, we can improve these outcomes that we already know. That could be also a clinical trial, that is also a clinical trial. So don’t take the participation in a clinical trial as the last option that you have, sometimes you will go to your doctor and the first time that you see a doctor for your first diagnosis, they can propose a clinical trial. 

And this is really valuable. What we really appreciate is the collaboration of the patients to be in clinical trials, because we need to remember that the drugs that we are using today were analyzing other patients before, so the treatment that you are receiving in a standard of care today were before a clinical trial, it’s really important how we can interact with the research and the clinical practice very easily, so we have also some options that are…for what we call early drug development, that there are some drugs that are in patients who are receiving the standard of care, and they have the opportunity to be treated in new drugs, and you can discuss…believe me there, and 

I know that there is a lot of questions about clinical trials but the clinical trial setting is really restrictive, it’s very well-coordinated, so you would be part of a very coordinated and structured things that they try to protect the patients in the first instance, and try to understand also how we can help the patients and the future generations. So that is really why we appreciate patients, that the contribution of patients that are giving to this clinical research because it’s helping to advance the knowledge for the new patients as well.

Dr. Nicole Rochester: 

And I really appreciate how you described clinical trials, and particularly your distinction about it’s not always this last-ditch effort that sometimes you all are using clinical trials as first line therapy. One of the common things is that clinical trials are tomorrow’s medicine today, and helping patients and families to understand that there’s value in being involved in clinical trials and that…and I think with COVID there’s a little more understanding, but certainly, we have a long way to go, and so I appreciate you sharing that. Do you have any specific examples of patients in your practice, and not names of course, but examples of…that have benefited from clinical trials?

Dr. Christian Rolfo: 

Absolutely, we have several of examples and actually FDA was doing a terrific job in the last year to try to get access quickly access to the drugs for patients, and some of this access that was granted was based in clinical trials that we’re starting for a phase one or phase two trials, so we are really doing a very rapid evolution of the drug development, and this is a revolution actually of the drug development because we have access very quickly. I can tell you that it was certainly in my career, several patients in clinical trials that they got benefits. Obviously, clinical trials are answering questions, so that is the way that we can answer questions scientifically and is the only way that we can advance in clinical therapeutics. 

Dr. Nicole Rochester: 

Wonderful. So I want to move into treatment access, we’ve talked a little bit today about some of the differences that we see in lung cancer with regard to the biomarkers, you and I know, and I’m sure that was in the audience, know that health disparities are widely reported here in the United States with really any all conditions, including lung cancer. So I’d love for you to talk a little bit, Dr. Rolfo about some of the challenges related to appropriate access to lung cancer care as it relates to different socio-demographic populations, and then how can we begin to address those disparities.

Dr. Christian Rolfo: 

Yeah, this is a topic that is really in my heart because I was coming with you before we start the communication, the recording of this. I was working in Europe before coming to the United States. I was shocked by the disparities that we see in some healthcare situations, so in my position before in Europe, we have a healthcare system that discovering for patients and we have, obviously, difficulties, but here I saw in some communities really underserved in terms of access to different service and healthcare is one of them. So we need to be conscious about that when we have patients that are struggling to get transportation, we have patients that are struggling to get approval for some drugs. 

So, there are a lot of areas that need to be addressed, disparity also in terms of language, we have also patients that are not understanding the doctors,  we have patients that are having difficulty when to get to the app information when we are saying, “Oh, you can see your report in your app,” so it’s not easy for some of them, we have generational gaps as well, these are disparities as well. So taking or being conscious of all these factors is making us take action and how we can take actions in our institutions, and in several institutions in the country, we have the support of an experienced team that is addressing that and teams are specific that are working for disparities. Some of them are social workers, some of them are advocate patients, so we have a big team of institutions that are helping to the patients to go for different scenarios, and even we have patients that are homeless, so how we treat patients in these conditions when we know that the patient is in a shelter, so if you have toxicity, what will we be doing. 

So all these things are taken into consideration, believe me, because it is like New York, you have a big disparity of or a big diversity, and we say of populations in one consultation morning, you can see all of them in your waiting room, so we need to try to address all this, and there are politics that are coming from us as a healthcare system, but there are also politics that they need to come from governmental politics, so try to use these…all the tools that we have at our disposal are important, and also we have a very good support of advocacy groups. 

Dr. Christian Rolfo: 

And this is something that I want to really profit their patient to say thanks because we have several, several advocacy groups that are doing a terrific job from testing to helping patients to go through this journey. So it’s really an important job, and obviously families, families are helping to these disparities and patients, so patients themself. So what I say always to the patient, raise your voice, empower yourself.

 Try to ask for your rights if you don’t understand your doctor… Ask again, if you want to have a second opinion, talk to your doctor, that is the most important thing. We are very open to help the patients, and that is our mission. So if I say to my patients, If you want to have a second opinion, please let me know, and I try to direct you to somebody who is an expert in the field and can help us to learn better your disease or your treatment, but I think it’s a situation that everyone is winning, especially the patient, but also ask for future patients understanding better every case.

Dr. Nicole Rochester: 

Well, as an independent patient advocate, myself, Dr. Rolfo, I always get super excited when physicians like yourself are talking about and emphasizing the importance of patients and families advocating for themselves, so I just want to reiterate a couple of things that you said just to make sure that our audience heard it very clearly and asking questions is one of the things that you said that is, I believe one of the most important ways that we can advocate for ourselves and for our family members in healthcare settings, and I really appreciate that you offer advice around second opinions.

A lot of people feel that they are sending their doctor if they ask for a second opinion, but a confident doctor like yourself and a good doctor is going to encourage that, particularly if the patient or family just needs that extra reassurance, so I just really appreciate that you brought that up. Before we wrap up, there are a few questions from our audience that I would love to present to you, and so one of them comes from MacKenzie and MacKenzie asked, can you speak about MRD testing and what that means for lung cancer?

Dr. Christian Rolfo: 

Yeah, and that we were discussing briefly. So minimal residual disease is the… As I say, when we have an operation, we can have the opportunity to have completely resected a tumor, but we don’t know more than with the CT scan when the patient will recover. So we are without an answer believing every follow-up visit what has happened, seeing if it has gone). So we are trying to reduce this…reduce the anxiety first of all, to try to get the tools that are able to identify patients that they can recurrence, have a recurrence so liquid biopsies, one of them, and we have now the several methods that are trials and several data coming that there are some companies that actually they are a market for some of the options, we are still having validations,  required validations, but we will certainly be there very shortly in time to identify these patients and to treat them in the proper time.

Dr. Nicole Rochester: 

Wonderful, and I think you just addressed a question that came in from Herald, which was is liquid biopsy playing a role in monitoring disease recurrence in lung cancer?

Dr. Christian Rolfo: 

Sure, we are actually tailoring treatments and checking the patients, and I have several, several experiences in patients that they’re monitoring over the time, and we have actually some of the vendors that are proposing this approach monitoring, liquid biopsy is a great tool because it’s minimally invasive, it’s just a blood draw and we can continue. Not all the patients have the possibility in terms of they are not all cheaters, that is something we need to know DNA, so it’s the majority of them, we can do it in some minimal proportion, we cannot do it when there are also possibilities to follow them.

Dr. Nicole Rochester: 

Excellent, and our last question from the audience comes from Laura, and she wants to know, “Are immunotherapy combinations in the metastatic setting, expanding to treat earlier stage lung cancer?”

Dr. Christian Rolfo: 

Yeah, absolutely, we have actually an FDA approval for us, one of the immunotherapeutic drugs in patients after the resection of the disease with some characteristics, but we are there and actually we are having more and more clinical trials using in earlier stages so we will say in the other stage from the earlier stage from that is the neoadjuvant and we call that when we are doing a treatment to reduce two months to be operated later on, so we have also some trials that are going there, but we have an approval already for the adjuvant setting that is after the surgery in some patients.

Dr. Nicole Rochester: 

That’s wonderful. You’ve given us a lot of good news. A lot of hopeful news, Dr. Rolfo, it is time for us to wrap up. I want to thank you again for being here for sharing your expertise. In closing, is there any takeaway that you want to leave with our audience today regarding lung cancer and advocating for themselves.

 Dr. Christian Rolfo: 

I will say that, first of all, thanks for the opportunity and it was a pleasure to discuss with you and I’d write to the population and say, Try to ask for your rights as a patient, so ask for your rights, be proactive in terms of your disease, you are the main actor here,  we are tools of trying to help you to arrive to the destination, but the good important thing is to create a good relation with your doctor, and to create a good relation with your doctor is part of the trust from both sides, so having an open communication… Open communication with the family as well. Sometimes we are smuggling or hiding things as a patient for our families to don’t help them, and vice versa that is not helping in this process, absolutely. And if you want, if you have that asking if you’re never deserving, so this is what we are here and all the team is here to help you.

Dr. Nicole Rochester: 

Wonderful. Well, I just want to echo what Dr. Rolfo said about asking questions about being an active member of your medical team, the doctors are there to assist you, but you are ultimately the expert for your disease for your body, so I just wanna thank you again deferral for being here for sharing such important information thank you all again for tuning into this patient empowerment network program. If you’d like to watch this webinar again, there will be a replay and you will receive an email when that recording is available, and remember, following this program, you will receive a link to a survey, please fill out that survey. Let us know what was helpful so that we can serve you better in the future to learn more about lung cancer and to access tools to help you get the best care no matter where you live. Visit powerfulpatients.org/lung cancer. I’m Nicole Rochester, thank you so much for joining us. 

Lung Cancer Patient Shares Why Telemedicine Should Be a Long-Term Tool

Lung Cancer Patient Shares Why Telemedicine Should Be a Long-Term Tool from Patient Empowerment Network on Vimeo.

Can lung cancer patients look to telemedicine as a long-term tool in their care? Watch as lung cancer patient Jill explains how telehealth has been a benefit for her care and how it can serve as a benefit for other patients.

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Transcript:

Jill:

In the future, I hope that telemedicine plays a really significant role in my care and in the care of others as well, so I would really like to not have to travel to my cancer clinic for every single appointment. For some of them, I definitely want to go. There are times when we want to look our doctor or nurse in the eye and really have strong, stronger communication, but for the most part, I would rather not have to travel and I live really close to my cancer center, so I always think about people who live farther away, and there are so many people who travel hours, there are people who travel days to get to their appointments, there are people who have to leave their communities and be, away for an extended period of time, and that’s not something that I would want to do, especially when we’re in a going counter treatment, we can feel so alone and fragile, and I would rather that people had more support and other people with them could stay at home, could stay in their communities and just have a call and their people could be with them if they wanted it during the call, they can all gather around and listen to.

And I think it matters so much. It’s not just convenience, it’s better care for people to have their loved ones near them, that’s one thing we’ve learned during COVID, even more so that it’s not good to be alone. It’s good to have our loved ones near us supporting us, and so as much as possible, if we can keep telemedicine as an option to use for the times when it doesn’t really matter if we’re in person or not, let’s make that choice, let’s make second opinions available let’s work out whatever permissions need to be in place for people to get care across regional lines or state lines, let’s get those things in place so that we can provide the best care possible, and let’s always be thinking about our most vulnerable people, and those are usually the people in the rural and remote regions, the people with a really hard cancer diagnosis, the people who are feeling alone and vulnerable, let’s take it, care of them.

Lung Cancer Advocate Shares Importance of Staying Hopeful During Pandemic

Lung Cancer Advocate Shares Importance of Staying Hopeful During Pandemic from Patient Empowerment Network on Vimeo.

How can lung cancer patients stay hopeful during a pandemic? Watch as lung cancer patient Jill shares her advice on coping methods that have been helpful for her during the COVID-19 pandemic.

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Transcript:

Jill:

These are really hard times, and we need to recognize that we’re not alone, that we’re not the only ones, we’re not the only one going through the hard time, and it’s so important to reach out to others, to reach out to someone, to ask for help, and we hear some really, really sad stories of things like people being turned away from the ER or we can have a lot of fear about what might happen. And I think it’s really important to not let those fears rule our lives, that can be really challenging to do, it’s very easy to say, but it takes a lot of skills to live without letting fear take hold at times. So, reach out for help. Talk to people, ask them, how do they cope? What do they do? For me, I talked to friends and my friends help remind me of what’s real and what’s true, my friends helped me hold on to hope. I’m a person of faith, so I believe in Jesus, and I read the Bible and I pray, and that really helps me too.

But each person finds their own ways to hold on to hope and let go of fear, and fear is, fear is not our friend. Good things don’t come from fear. So the other thing is we need to be advocates for ourselves, sometimes we need to ask for what we want, and if we believe in something, we need to fight for it, we can’t just sit back and expect things to be dropped in our lap, so they’re gonna be tons, when we’re going to have to really, really work hard, and that could hurt and in my life is an advocate, I find there’s a lot of pain and a lot of hard work, but there’s also a lot of real joy, and I get to meet some of the most amazing new people, and those are people who helped me have hope, so grab a hold of the people who help you have hope and don’t let go, call them up and reach out to them, lean on them.

Understanding Telemedicine Pros and Cons for Lung Cancer Patients

Understanding Telemedicine Pros and Cons for Lung Cancer Patients from Patient Empowerment Network on Vimeo.

What can lung cancer patients expect for telemedicine opportunities and challenges? Watch as lung cancer patient Jill shares some situations telemedicine has served well and some patients who have run into care disparities.

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Transcript:

Jill:

Telemedicine offers some opportunities as well as challenges, so I’ll speak to some of the challenges at first, which are…we don’t in-person, tend to build relationships as quickly. In general, I find when we’re just talking over the phone, when we’re in-person, we can get to know each other more comfortably, for the most part, everyone is unique, so you could be different, but for me, the relationship-building aspect is something that I’ve missed out on to some degree. 

And the doctor may miss some visual cues, so for example, there might be something that he or she would pick up on, would notice some sort of symptom or side effect that we had perhaps not noticed, we’re not, thought important enough to raise. So those are challenges. How do we get past not being able to see each other, so also, what if the doctor is delivering some tough news that could be harder to do if we’re not in-person, if we’re not able to see those visual, non-verbal cues, that can help us understand how to help the doctor understand how the patient is processing, receiving the news. Another thing is that sometimes patients, and I’m not going to say that I do this, but I’ve heard quite a few patients say that they might try to hide some of their side effects because they’re concerned that they’ll get a reduced dose and they’re concerned that it won’t be as effective. 

Now, from what I’ve heard, you know I understand that’s not a really wise choice to make, but everyone makes their own choices, and so if the patient is trying to hide the side effects from their doctor and their nurse, it might be more helpful for that patient to actually be present with their healthcare team, so the healthcare providers can actually notice and pick up on things. 

The opportunities are really powerful though, because it frees up so much more time for the system and generally, we often, I’ve had an awful lot of appointments, I know my oncologist quite well because I’ve had the same one since 2013, and we don’t need to talk for a long time, so usually 10 minutes is good and it saves the travel time in. Also, it opens up possibilities for remote consults with potentially anyone anywhere in the world, which is so terrific as an opportunity for a second opinion perhaps, or for someone who doesn’t have a doctor in their community, it makes it so much easier for them to gain access to care that they need.

And we really need to focus on the disparities that occur, especially people in rural and remote regions can miss out on some of the best healthcare. And if this is a great opportunity for us to serve them better.

Lung Cancer Patient Shares Why Telemedicine Is an Important Tool

Lung Cancer Patient Shares Why Telemedicine Is an Important Tool from Patient Empowerment Network on Vimeo.

How can telemedicine serve as a vital tool in lung cancer care? Watch as stage IV lung cancer patient Jill shares how telehealth has helped her during the COVID-19 pandemic and how she views it in the future of her care.

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Lung Cancer Patient Shares Why Telemedicine Should Be a Long-Term Tool

 

Transcript:

Jill:

I was diagnosed with stage IV lung cancer back in 2013, and prior to the COVID pandemic, I had never had a telemedicine appointment, but now that I’ve had quite a few.

I think they’re such an important tool in lung cancer care, especially during a pandemic, when they protect us from exposure to various potential infections, not just COVID, but it can protect us from illness, so that’s terrific. But also, they’re really convenient, I just have a quick 10-minute appointment, there is no waiting in the waiting room, there’s no traveling to the clinic, which is…I’ll be honest, that’s not a very big inconvenience for me because I live quite close to my cancer center, but especially for people in rural and remote regions, what a game changer it can be to just be able to talk on the phone or perhaps have a video chat with a health care provider. So, I think that telemedicine is a very important tool in lung cancer care, and I hope that it will continue, maybe not 100 percent of the time, but there will still be available to him after the pandemic is over.

How Can Lung Cancer Patients Take a More Active Role in Their Care?

How Can Lung Cancer Patients Take a More Active Role in Their Care? from Patient Empowerment Network on Vimeo.

As a lung cancer patient, how can someone take a more active role in their care? Experts Dr. Nicole Rochester and Dr. Olugbenga Okusanyaprovide advice for patients to empower themselves and questions to ask themselves about their lung cancer care team members for their best care. 

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Transcript:

Dr. Nicole Rochester: 

What advice do you give to patients that you see so that they can feel empowered, Dr. Okusanya? Is there any specific advice that you give when you see patients and things that just helped them to take this active role that you’ve been describing? 

Dr. Olugbenga Okusanya: 

Number one, I tell patients to bring someone with them to their appointments, someone who can stand by as within reason someone who can be there to listen as well, because usually I say, if I tell you 100 things in an appointment which can legitimately have, I could give you 100 unique points of information and in one 45-minute visit. If you catch 30 of them or 35 of them, you really understand that. I think that’s a lot because they’re very emotionally charged. So, hopefully someone else is with you, maybe catches another 30 or 40, and that gets you to a point where you can really sit down later and understand. I encourage patients to take notes to write things down, and if they want to, to record, to have audio recording of the session, I wouldn’t say anything to you now that I wouldn’t say in a month or in a year, or anywhere else. I’m going to tell you exactly what I think and I…and if I have uncertainty, I will expose that uncertainty, I will let you know that this is a case that could go either way. And this is a piece of information that I’m looking back and forward between these two options and that really helps the patients later on go back and say, “Did I really hear that right? Did I really understand it right?” So that you can feel like you’re getting the best care, and I really think that you have to make sure that you feel comfortable with the provider. 

I think that’s just the number one thing. Are you happy with them? Do you like the way they comported themselves? Did you like the way they spoke to you? Did you like their staff? Also remember, you’re likely going to be interacting with their staff as much as you interact with the physician, so the other people in the office, the front desk people, the nurse practitioners, the medical assistants, those are the people that you’re going to spend a lot of time talking to. Did you have a good rapport with them? Also, all that stuff counts to make sure that you’re getting the best experience possible and that you can really be an advocate for yourself. 

Dr. Nicole Rochester: 

I just want to reiterate, you share so many pearls today, but I just want to reiterate a few of them, and they really resonate with me as a former caregiver and as a health advocate, but that’s the importance of asking questions, the importance of bringing a buddy, and I appreciate that, particularly in your field, when we go into a doctor’s office and the word “cancer” is stated, everything else goes out of the window, and even in less threatening situations, there’s data that shows that…I think about 20 percent to 25 percent of what we say as physicians is actually retained, so certainly when you get a bad diagnosis, that number is even lower, so bringing somebody with you who is not necessarily emotionally detached, but they can literally kind of be the note taker, and they may even pick up on some nuances and things that you may have missed as a patient is so incredibly important. I love that you’ve offered the option of recording, I think that’s also another tool that many patients and family members aren’t aware of, and I think there’s an assumption, and it’s true to some degree that doctors don’t want to be recorded, but knowing that that is an option. 

The fact that the care that we receive really is impacted by whether or not the person specializes in lung cancer, a thoracic surgeon, and being empowered to ask that question, “Is this your specialty? How often do you see patients like me?” And being empowered to ask those questions that ultimately won’t lead to improved care is just so incredibly important, and I think just everything that you’ve shared that really allows the patients and the caregivers to understand just how important their role is you’re the one that’s going to take out the cancer and you’re the one that’s going to get them better, but there are so many things that happen before that step, before they are on that operating room table that is so important 

Dr. Olugbenga Okusanya: 

I think for patients and their advocates, I think it’s really important number that you’re putting together a health care team. You’re putting together a group of people like the avengers. You’re putting together a bunch of people to come together to help you deal with this health problem. You are entering into a therapeutic relationship, so that relationship has to be healthy in order for you to have the best possible outcome, you should feel good about, you know, your doctor is going to be very skilled, become very knowledgeable, and just like we talked about before. You really want to find someone who has the heart of a teacher, someone who can sit down and explain it to you in a way that’s going to be digestible and that is going to be actionable. So, I think if patients and advocates remember that you want to build a really solid, a really healthy relationship with someone who’s going to help you take care of your health, I think if you do that, you’re going to be in excellent hands. 

Key Questions for Newly Diagnosed Lung Cancer Patients to Ask

Key Questions for Newly Diagnosed Lung Cancer Patients to Ask from Patient Empowerment Network on Vimeo.

As a newly diagnosed lung cancer patient, what are key questions to ask? Experts Dr. Nicole Rochester and Dr. Olugbenga Okusanyashare advice on questions to lung cancer care providers and the reasoning behind specific questions to work toward optimal care. 

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Transcript:

Dr. Nicole Rochester: 

What are some key questions that patients and care partners should ask at the very beginning when they are first beginning this journey with lung cancer? 

Dr. Olugbenga Okusanya: 

So, I would say…question number one that I would ask is like, “Do you specialize in this? Is this something that you do on a regular basis? What percentage of your practice is lung cancer care?” You would really like an answer that’s more than 50 percent, you would like someone who sees lung cancer patients and takes care of lung cancer patients as a matter of routine. And something I would also say as a patient, you kind of want your care to be routine, you don’t want to be someone where things are just being figured out for the first time, you really want to have someone who does this all the time. The other questions I would ask are, “Can you tell me what all the options are, not just the one you’re offering to me? I really want to know what all the options are.” And I always tell patients the options are really very broad. And a physician chose the option is one, you may want to not do anything that is an option, you know saying, “We know it’s there, we understand, and we’re going to watch it or not do anything,” is a very reasonable option they should tell you about biopsies or surgery or non-invasive therapeutic modalities. 

You really want to say, “I want you to give me the laundry list, all the things that are possible in the institution that I’m sitting in.” And then I would also ask, “What are the things that you are not considering before that might be options? What are the things that maybe you’ve ruled out in your mind, and can you tell me more about that?” Because we’re very physicians, we’re very good at heuristics, really good at skipping steps and making next logical jobs, so it’s good to ask one of those steps that you skipped in your mind, and why did you skip them?” And then the last thing I would ask is, “Is this the kind of case that should be discussed in a multi-disciplinary clinic or conference? Is there anybody else I should talk to about this problem?” And I think if you can ask those questions and feel very confident about asking those questions again, most practitioners who are high level and specializing in this will not be offended, they will be glad that you’re asking the question, it will be a relief for both of you. I think if you can ask those questions, you can really help to eliminate some of those ascites and really get on the right trajectory from the beginning.  

Dr. Nicole Rochester: 

Those are such important questions, starting with the first one you provided, which is, “Do you specialize in this?” I think that we spend a lot of time sometimes betting, other professionals, even hair stylists, or if we want to get our car fixed, we want to go to the person that specializes and whatever is wrong with that particular problem, but we don’t always take such care with our most precious commodity, our body. So, I think that’s so incredibly important that we ask that question, and it’s not to make bad comments about those who don’t, but people like yourself have trained for many years, and there’s something to be said about that when this is your area of focus, and this is what you do day in, day out. So, I love that, I also really love what you said about kind of getting inside of the brain of the doctor, because you’re right, we’re skipping steps and we’re going through algorithms, but we don’t often bring the patient into that process, and so I really love the idea of the patients questioning, “Are there things that you didn’t consider and why?” And really having a full understanding, understanding of all of those treatment options, and maybe if the doctor has erroneously ruled out one of those possibilities based on maybe an assumption that gives the patient an opportunity to clarify that. 

Dr. Olugbenga Okusanya: 

And I would say, as a patient, oftentimes, we want to ascribe very positive feelings towards your physician, it’s a notch, a very natural thing to do because you want them to be good, so that eventually you’ll be good, and they’ll take good care of you. You want to ascribe those positive thoughts, and I think that’s very reasonable. But we should approach that with a little bit of question, because this is someone who has a lot of information and a lot of knowledge, and you want to make sure you are getting everything in the middle, so it doesn’t get lost in translation. You want to make sure you’re there for that conversation. 

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