LC Treatments and Clinical Trials Archives

When it comes to treatment, lung cancer patients and their care partners have much to consider. There are often many options available, each with advantages and disadvantages. Some people may seek clinical trials, others may have few feasible options. Understanding treatment options, goals, and what to expect are vital to achieving the best possible outcome for you.

More resources for Lung Cancer Treatments and Clinical Trials from Patient Empowerment Network.

Newly Diagnosed Non-Small Cell Lung Cancer | Key Advice for Patients

Newly Diagnosed Non-Small Cell Lung Cancer | Key Advice for Patients from Patient Empowerment Network on Vimeo.

What’s key advice for newly diagnosed non-small cell lung cancer (NSCLC) patients? Expert Dr. Christina Baik from Fred Hutchinson Cancer Center discusses genetic testing, essentials to know about your lung cancer, and patient tips to ensure your best care.

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See More from START HERE Lung Cancer

Related Resources:

Lung Cancer Patient Expert Q&A: Dr. Christina Baik

Lung Cancer Patient Expert Q&A: Dr. Christina Baik 

Bridging gap

Advancing Lung Cancer Treatment: Bridging the Gap in Personalized Care

DNA

Understanding Oncogene-Driven Lung Cancer: Targeted Therapy Advances and Challenges 

Transcript:

Lisa Hatfield:

When a patient is diagnosed with non-small cell lung cancer, is genetic testing always done on the tumor, or do patients know what their mutations are right upon diagnosis if testing is done?

Dr. Christina Baik:

So, as a rule of thumb, they should, all patients should be tested, and there are exceptions. So, for example, in lung cancer, there’s the type that we call small cell lung cancer, and there’s non-small cell lung cancer. So we often, we usually do not do genetic testing on small cell lung cancer, because often these tumors do not have a genetic abnormality that for which we can actually give treatment for. But for non-small cell patients, I would say, if most, my personal opinion is that everybody should be tested with the genetic test and really advocate for that. You know, there are certain types of non-small cell lung cancer where there are genetic targets that are rare, however, you don’t know unless you test. So I would say yes to that question of testing for genetic abnormalities.

Lisa Hatfield:

Okay, thank you. So can you speak to the priorities for newly diagnosed patients, particularly populations who may have poor outcomes?

Dr. Christina Baik:

So, I think there are priorities when it comes to research, and then there are priorities for individual patients, right? So from a research standpoint, as I mentioned before, I think really the priorities, the priority is to develop strategies so that we’re truly personalizing treatment for each patient, and we’re not giving this kind of generic treatment for a bulk of the patients. So from a research standpoint, really understanding the biology, understanding what works for what patient, I think that’s extremely important.

On the individual patient level, we sort of alluded to this earlier, but really knowing the cancer we’re dealing with is extremely important. Know your cancer stage, ask what your cancer stage is, know the type of lung cancer that you have. So I will say as of now, there are, I can think of 12 or 13 different types of lung cancer that I want to make sure I know that patients, you know, what their subtype is.

So know your subtype of lung cancer. Ask those questions. If the knowledge is not known, if they say, “You know your stage is not very clear, your subtype is not clear,” then ask why that is, what type of additional testing that needs to be done. So I think those are the type of questions that each patient and their family member should really ask. And in terms of the poor outcome question, I think the first thing I would say is if a doctor tells you, you belong to a group of patients who are going to have a poor prognosis, then ask why that is, right? And understand the reasons for that.

And if that’s, once you understand, I think I’m a big proponent of getting second opinions, because a lot of these treatments and there’s a lot of medical judgment involved when we recommend treatments, and you just want to get a different perspective with the same type or set of information. So really being an advocate for yourself, I think that’s extremely important when you’re first diagnosed.

Lisa Hatfield:

Great, thank you. You mentioned two things I also feel strongly about, I don’t have lung cancer, I have a different type of cancer, but you said that patients and family members can ask questions.  Having an advocate with you at all times, if that’s possible, a family member, a friend going with you, I think is super important.

And also getting a second consult to understand your diagnosis better. I appreciate you saying that, because some of us are a little bit reluctant to do that, maybe afraid of offending our doctors. So, I appreciate that as a patient myself, so thank you. Okay. So talking about disease progression and recurrence, particularly for metastatic non-small cell lung cancer, what should patients know?

Dr. Christina Baik:

Okay. So when a cancer initially responds to a treatment and it stops responding, there can be many reasons for that. So the first question to really think about is is there another test we can do to identify the reason for the progression? And can we personalize a treatment according to that resistance pattern or the change that occurs in the tumor? This is more relevant to patients who get a targeted therapy, but I think it’s a good sort of rule of thumb in terms of asking your doctor why that is, and is there more testing that’s required?

And the second I would say is once the cancer progresses after the initial treatment, then, unfortunately, in lung cancer the treatment options are much more limited, and the effectiveness is very limited as well. So, it’s really at that juncture to really seek out clinical trials. There are many trials that are out there. So really working with your doctor in identifying these trials. If there is an academic center that’s close to you, at least inquiring about that. In lung cancer, fortunately, there are many wonderful advocacy groups and these advocacy groups can be great resources in finding out about clinical trials and where to seek out opinions. So, I think it does require some homework at the time of progression but really seek those out.

Lisa Hatfield:

Okay. Thank you. Now, if a patient does have an interest in a clinical trial, say maybe they have, their cancer has progressed, would they seek out that trial through the academic center itself? If, say they live in a rural area and they don’t have access, would they contact the academic center itself, or would they seek out a specialist like you first to ask about those clinical trials?

Dr. Christina Baik:

So they sort of come together in a way, because a lot of the specialists are in academic centers. So I think there are two ways to go about it. One is to meet with the specialist who can give you kind of the landscape of where things are and what might be appropriate. So, that’s one way to do it.  The other way to do it is if there’s a particular clinical trial that you’re really interested in based on discussions with other patients or through advocacy groups, if there are particular clinical trials, usually the contact information is listed on the clinicaltrials.gov website, and the contact number is usually for the research team who can give you more information about that particular trial.

Lisa Hatfield:

Okay. That’s very helpful, thank you. And thank you for this overview. I just want to recap a couple of points that you made that’s really important for patients to know. You had mentioned knowing their type, their subtype of lung cancer, knowing their stage, and knowing their mutations and having an advocate. I think those are all really great tips that you gave.


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Advancing Lung Cancer Treatment: Bridging the Gap in Personalized Care

Advancing Lung Cancer Treatment: Bridging the Gap in Personalized Care? from Patient Empowerment Network on Vimeo.

What should lung cancer patients know about the latest treatment and research news? Expert Dr. Christina Baik from Fred Hutchinson Cancer Center discusses immunotherapy, targeted therapy, and resistance mechanisms for treatment.

Download Resource Guide

See More from START HERE Lung Cancer

Related Resources:

Lung Cancer Patient Expert Q&A: Dr. Christina Baik

Lung Cancer Patient Expert Q&A: Dr. Christina Baik 

advice

Newly Diagnosed Non-Small Cell Lung Cancer | Key Advice for Patients 

DNA

Understanding Oncogene-Driven Lung Cancer: Targeted Therapy Advances and Challenges 

Transcript:

Lisa Hatfield:

Dr. Baik, can you speak to the latest news and priorities for the treatment of non-small cell lung cancer? And what are the notable advancements in understanding resistance mechanisms or novel therapeutic targets?

Dr. Christina Baik:

So it’s a good time to be a lung cancer doc, I would say, just because there’s so much advance. We’re seeing different treatments be FDA-approved every other year, if not every year. So it’s really good to have all these options to offer our patients. Now the priority, however, is that not everyone is benefiting in an equal way from all these advances. And really the research priority, including my own personal research, is to really understand why some patients are benefiting and why some are not.

So, for example, in the immunotherapy world, which is a big advance we’ve had in lung cancer in the last 10 years, we know that some patients respond very well, some do not. Yet we give the same sort of treatment to patients. So one thing to understand is who are…and one thing I would say is we don’t personalize immunotherapies for our patients.

So one of the research priorities is to really understand where the different subgroups of patients who are going to benefit from this one treatment type…one type of immunotherapy treatment versus the other. So I would say that’s a big priority for me as well as for the field and all the researchers so that we’re giving the right treatment to the right patient. Now, there have been advances, I would say, in this theme in those patients who are able to receive a targeted therapy. So that is a type of treatment that we give to target the genetic abnormalities that exist in a particular patient’s tumor.

And these treatments work very well. But at some point, it stops working. But nowadays, there are certain sorts of resistance mechanisms as we call it. These are changes that occur in the tumor when a targeted therapy stops working. And we’re starting to understand better in terms of reasons for that and actually develop treatment options for those mechanisms of resistance. So I think we are starting to understand better, and I think we’re going to get there in terms of personalizing immunotherapy. But there’s still a lot of work to be done.


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Lung Cancer Patient Expert Q&A: Dr. Christina Baik

Lung Cancer Patient Expert Q&A: Dr. Christina Baik from Patient Empowerment Network on Vimeo.

In this START HERE lung cancer webinar, Dr. Christina Baik, Associate Professor of Medicine at the University of Washington and Fred Hutchinson Cancer Center, provides valuable insights into priorities for newly diagnosed patients. Dr. Baik also discusses essential tools for managing disease progression and recurrence.

Watch the program and download the guide for tips on creating an actionable pathway to optimize lung cancer care for yourself or your loved one.

Download Resource Guide

See More from START HERE Lung Cancer

Related Resources:

Bridging gap

Advancing Lung Cancer Treatment: Bridging the Gap in Personalized Care

advice

Newly Diagnosed Non-Small Cell Lung Cancer | Key Advice for Patients

DNA

Understanding Oncogene-Driven Lung Cancer: Targeted Therapy Advances and Challenges

Transcript:

Lisa Hatfield:

Hello and welcome. My name is Lisa Hatfield, your host for this Patient Empowerment Network Start Here program where we bridge the expert and patient voice to enable you and me to feel comfortable asking questions of our healthcare teams. The world is complicated, but understanding your lung cancer doesn’t have to be. The goal of this program is to create actionable pathways for getting the most out of lung cancer treatment and survivorship.

Today, I’m delighted and excited to welcome Dr. Christina Baik, a distinguished expert in the field of lung cancer. Dr. Baik serves as an associate professor in the Clinical Research Division at Fred Hutch. She also holds the position of clinical research director of thoracic head and neck oncology at University of Washington. Additionally, she has an associate professor, or she is an associate professor in the Division of Hematology and Oncology at the University of Washington School of Medicine. We’re so happy she’s joining us today. It’s a pleasure to have you with us, Dr. Baik.

Dr. Christina Baik:

Thank you for having me.

Lisa Hatfield:

Okay. Before we dive into today’s discussion, please take a moment to download the program Resource Guide using the QR code. This guide contains pertinent information to guide you both before and after the program. In this program, we’ll provide you with a comprehensive update on the latest lung cancer news and its implications for you and your family.

Following that, we’ll launch into questions we have received from you. So let’s start here. Dr. Baik, can you speak to the latest news and priorities for the treatment of non-small cell lung cancer? And what are the notable advancements in understanding resistance mechanisms or novel therapeutic targets?

Dr. Christina Baik:

So it’s a good time to be a lung cancer doc, I would say, just because there’s so much in advances. We’re seeing different treatments be FDA-approved every other year, if not every year. So it’s really good to have all these options to offer our patients. Now the priority, however, is that not everyone is benefiting in an equal way from all these advances. And really the research priority, including my own personal research, is to really understand why some patients are benefiting and why some are not.

So, for example, in the immunotherapy world, which is a big advance we’ve had in lung cancer in the last 10 years, we know that some patients respond very well, some do not. Yet we give the same sort of treatment to patients. So one thing to understand is who are…and one thing I would say is we don’t personalize immunotherapies for our patients.

So one of the research priorities is to really understand where the different subgroups of patients who are going to benefit from this one treatment type…one type of immunotherapy treatment versus the other. So I would say that’s a big priority for me as well as for the field and all the researchers so that we’re giving the right treatment to the right patient. Now, there have been advances, I would say, in this theme in those patients who are able to receive a targeted therapy. So that is a type of treatment that we give to target the genetic abnormalities that exist in a particular patient’s tumor.

And these treatments work very well. But at some point, it stops working. But nowadays, there are certain sorts of resistance mechanisms as we call it. These are changes that occur in the tumor when a targeted therapy stops working. And we’re starting to understand better in terms of reasons for that and actually develop treatment options for those mechanisms of resistance. So I think we are starting to understand better, and I think we’re going to get there in terms of personalizing immunotherapy. But there’s still a lot of work to be done.

Lisa Hatfield:

Great, thank you. So just a follow-up question to that, when a patient is diagnosed with non-small cell lung cancer,is genetic testing always done on the tumor, or do patients know what their mutations are right upon diagnosis if testing is done?

Dr. Christina Baik:

So, as a rule of thumb, they should, all patients should be tested, and there are exceptions. So, for example, in lung cancer, there’s the type that we call small cell lung cancer, and there’s non-small cell lung cancer. So we often, we usually do not do genetic testing on small cell lung cancer, because often these tumors do not have a genetic abnormality that for which we can actually give treatment for.

But for non-small cell patients, I would say, if most, my personal opinion is that everybody should be tested with the genetic test and really advocate for that. You know, there are certain types of non-small cell lung cancer where there are genetic targets that are rare, however, you don’t know unless you test. So I would say yes to that question of testing for genetic abnormalities.

Lisa Hatfield:

Okay, thank you. So can you speak to the priorities for newly diagnosed patients, particularly populations who may have poor outcomes?

Dr. Christina Baik:

So, I think there are priorities when it comes to research, and then there are priorities for individual patients, right? So from a research standpoint, as I mentioned before, I think really the priorities, the priority is to develop strategies so that we’re truly personalizing treatment for each patient, and we’re not giving this kind of generic treatment for a bulk of the patients. So from a research standpoint, really understanding the biology, understanding what works for what patient, I think that’s extremely important.

On the individual patient level, we sort of alluded to this earlier, but really knowing the cancer we’re dealing with is extremely important. Know your cancer stage, ask what your cancer stage is, know the type of lung cancer that you have. So I will say as of now, there are, I can think of 12 or 13 different types of lung cancer that I want to make sure I know that patients, you know, what their subtype is.

So know your subtype of lung cancer. Ask those questions. If the knowledge is not known, if they say, “You know your stage is not very clear, your subtype is not clear,” then ask why that is, what type of additional testing that needs to be done. So I think those are the type of questions that each patient and their family member should really ask. And in terms of the poor outcome question, I think the first thing I would say is if a doctor tells you, you belong to a group of patients who are going to have a poor prognosis, then ask why that is, right? And understand the reasons for that.

And if that’s, once you understand, I think I’m a big proponent of getting second opinions, because a lot of these treatments and there’s a lot of medical judgment involved when we recommend treatments, and you just want to get a different perspective with the same type or set of information. So really being an advocate for yourself, I think that’s extremely important when you’re first diagnosed.

Lisa Hatfield:

Great, thank you. You mentioned two things I also feel strongly about, I don’t have lung cancer, I have a different type of cancer, but you said that patients and family members can ask questions.  Having an advocate with you at all times, if that’s possible, a family member, a friend going with you, I think is super important. 

And also getting a second consult to understand your diagnosis better. I appreciate you saying that, because some of us are a little bit reluctant to do that, maybe afraid of offending our doctors. So, I appreciate that as a patient myself, so thank you. Okay. So talking about disease progression and recurrence, particularly for metastatic non-small cell lung cancer, what should patients know?

Dr. Christina Baik:

Okay. So when a cancer initially responds to a treatment and it stops responding, there can be many reasons for that. So the first question to really think about is is there another test we can do to identify the reason for the progression? And can we personalize a treatment according to that resistance pattern or the change that occurs in the tumor? This is more relevant to patients who get a targeted therapy, but I think it’s a good sort of rule of thumb in terms of asking your doctor why that is, and is there more testing that’s required. And the second I would say is once the cancer progresses after the initial treatment, then, unfortunately, in lung cancer the treatment options are much more limited, and the effectiveness is very limited as well.

So, it’s really at that juncture to really seek out clinical trials. There are many trials that are out there. So really working with your doctor in identifying these trials. If there is an academic center that’s close to you, at least inquiring about that. In lung cancer, fortunately, there are many wonderful advocacy groups and these advocacy groups can be great resources in finding out about clinical trials and where to seek out opinions. So, I think it does require some homework at the time of progression but really seek those out.

Lisa Hatfield:

Okay. Thank you. Now, if a patient does have an interest in a clinical trial, say maybe they have, their cancer has progressed, would they seek out that trial through the academic center itself? If, say they live in a rural area and they don’t have access, would they contact the academic center itself, or would they seek out a specialist like you first to ask about those clinical trials?

Dr. Christina Baik:

So they sort of come together in a way, because a lot of the specialists are in academic centers. So I think there are two ways to go about it. One is to meet with the specialist who can give you kind of the landscape of where things are and what might be appropriate. So, that’s one way to do it.

The other way to do it is if there’s a particular clinical trial that you’re really interested in based on discussions with other patients or through advocacy groups, if there are particular clinical trials, usually the contact information is listed on the clinicaltrials.gov website, and the contact number is usually for the research team who can give you more information about that particular trial.

Lisa Hatfield:

Okay. That’s very helpful, thank you. And thank you for this overview. I just want to recap a couple of points that you made that’s really important for patients to know. You had mentioned knowing their type, their subtype of lung cancer, knowing their stage, and knowing their mutations and having an advocate. I think those are all really great tips that you gave. So thank you for that overview. It’s that time now where we answer questions that we’ve received from you. 

Please remember, this is not a substitute for your medical care. Always consult with your own medical team, and, Dr. Baik, we have some questions here that people have sent in from patients. So I’ll just jump right into the first question. “What exactly is oncogene-driven lung cancer, and how does it differ from the other types of lung cancer?”

Dr. Christina Baik:

So in lung cancer, there are certain lung cancers where the growth of the cancer is dependent on a particular genetic abnormality. So there is one gene that makes that cancer grow. And because of that, there have been treatments that are developed against that particular genetic abnormality. So, it is referring to lung cancers that have that particular genetic abnormality. A prime example of this is lung cancers that have what we call an EGFR mutation. That means that there is this gene called EGFR that is abnormal, and that’s making the cancer grow.

Now, not everyone has a cancer gene that is driving that cancer. I would say about 30 percent or for 30 percent to 40 percent of patients would have an oncogene-driven cancer for which there may be treatments either as a standard treatment or in clinical trials. But the majority of patients do not have an oncogene, meaning that genetic abnormality where there is a targeted therapy option. So that’s the distinction we make. And I know this term or phrase is used a lot, but that’s what it means. And if you want to know if one has an oncogene-driven lung cancer, you would know based on the genetic test results.

Lisa Hatfield:

Okay. Great. Thank you. And just for clarification too, the genetic mutations are found in the cancer cells, not in their body, the cells? So that’s what the genetic testing is done just on the cancer cells. Is that correct?

Dr. Christina Baik:

Yes. Yes.

Lisa Hatfield:

Okay, great.

Dr. Christina Baik:

Thank you for clarifying that. That’s a very important distinction.

Lisa Hatfield:

Yeah. Thank you. So that leads right into the next question, and it’s kind of a lengthy question. And this person is asking, “Dr. Baik, you have done considerable research around EGFR exon 20 insertion mutations in non-small cell lung cancer, considering their association with poor survival outcomes, what are the survival implications of having EGFR exon 20 insertion mutations compared to other types of EGFR mutations?”

Dr. Christina Baik:

Now this gets a bit complicated, but not all EGFR lung cancers are the same. And there are patients who have what we call EGFR mutation that is a classical mutation. And I throw out that term, because that’s how it’s written on the Internet and a lot of papers. And then, so that’s one group, and the other group are patients who have this exon 20 insertion mutation. And the reason these are separated is because the treatments that work very well in the classical mutations do not work very well in this particular exon 20 mutation.

So when we look at all patients with EGFR mutation, it is true that the prognosis is poor in exon 20 patients just because there are no great targeted therapy options. That said, I am very hopeful that this is changing. There are a number of targeted therapies for exon 20 that are in trials, and I think these are going to be FDA-approved in the future, not too far off in the future, I believe. So I think the survival implications will start to hopefully equalize amongst all the EGFR-mutated lung cancer patients.

Lisa Hatfield:

Okay. Another question, Dr. Baik, from a patient, “For someone who is newly diagnosed with non-small cell lung cancer, what should be the top priorities in understanding and navigating treatment options, especially if I’m in a group that tends to have poorer outcomes?”

Dr. Christina Baik:

So the really, the priorities, when someone is first diagnosed, is really understanding what we’re dealing with and know what they’re dealing with. Now, if you don’t have all this information, I think it’s extremely important to ask. And if you get an answer that indicates that it’s not very clear, and they don’t know, then ask why.

And what are some of the follow-up tests that need to be done so that you can really know. So, I think really the knowledge is extremely important. One thing that I will expand on is that patients, when they’re first diagnosed with non-small cell lung cancer, they should get testing of the cancer, the genetic testing of the cancer to identify the subtype.

And often, it can’t be completed because there’s a lack of biopsy material. So that is often a common situation. So, if that’s a common situation, then ask, “Is there room for another test? Should I get another biopsy? Is there a blood biopsy that will be helpful in this setting?” So really be an advocate for yourself to complete the testing, because the treatment options are drastically different, whether there’s a genetic target in the cancer or not.

The other thing I would say in terms of poor outcomes is that, if you’re told that you’re in a group that has poor outcomes, I think the first question would be to ask why. “Why am I in that group? What makes…what about the cancer that makes it a poor outcome?” And I think this is a setting where you do want to especially get a different opinion potentially just so that the other doctors also agree that you’re in that group. And if so, are there other treatments outside of the standard treatments that you can take advantage of so that it could potentially work better?

Lisa Hatfield:  

Okay, thank you. So this patient mentioned that they are newly diagnosed. And I’m wondering if you can just in really general terms explain what treatment and monitoring might look like. For example, how often might this patient have to come in for treatment? What type of monitoring might be done? I know it has to be really general because every patient is so different. But can you just give a really kind of a high level overview of what that might look like for a newly diagnosed patient?

Dr. Christina Baik:

Yes. So I can speak for patients who have advanced non-small cell lung cancer, which is, unfortunately, still the majority of patients who are newly diagnosed. Most of them have advanced or metastatic lung cancer, meaning that the cancer has gone outside of the original area to other parts of the body. In those settings, if there is a genetic target on the cancer, often the treatment is a pill, which is great. And often, they are fairly tolerable, of course, there are exceptions, but for the most part it is a tolerable type of treatment. So for those patients who have a pill option and they’re tolerating it well, the pills are taken at home, right? They don’t have to come to a hospital for that.

Initially, at least in my personal practice, we do see patients fairly often just so that we can make sure the side effects are being managed and patients are doing well. So initially, it might be every other week type of visits for the first two or three sort of first visits, so the first month or two may be more frequent. But once we get to a point where the treatment is working and side effects are manageable, then I’m essentially seeing them every three months, and they can go. I have patients who travel internationally and just come check with me every three months or so.

So that’s one type of monitoring that we do and in this setting, we would get imaging often with CT scans, every three to four months or so, that number is not exact, there’s no science behind that three to four months. But we would…the point is that we will monitor the cancer using imaging, often with CT scans every three to four months in that setting. Now, and I do want to emphasize that that’s my own personal practice, every doctor does it a little bit differently in terms of intervals. Now, for patients who do not have a targeted therapy option, meaning there’s no pill option, then often patients are receiving some form of infusional treatment. And the infusional treatments vary in terms of the frequency. So some treatments are every three weeks, some are every four, some maybe every six. 

Lisa Hatfield:

Okay, thank you. That’s helpful. So another question, which is a big concern for many patients, I’m sure.  “What signs should I watch for that might indicate the cancer is coming back or progressing? And what steps can I take if I notice any concerning symptoms?”

Dr. Christina Baik:

Right. So the signs are often difficult to identify, mainly because the symptoms can be very similar to kind of normal symptoms, meaning so, for example, one thing we watch out for is back pain, for example, because we worry that the cancer may be going into the bone in the back. However, many of us have back pain chronically, so often it is difficult to tease out what’s what. That said, what I tell my own patients as a rule of thumb is if anything is persisting, so, for example, you have your usual back pain, you know that typically after some rest and some exercise it usually gets better after about a week. The severity may fluctuate a little bit, but most of muscle back pains will change or lighten up after some time if you strained it.

But if there’s a particular pain in a particular part of the body that is just not going away, that’s something to watch out for. Same thing with symptoms like cough, right? So I’ve had many patients who are diagnosed after COVID, where they would have this persistent cough after COVID, but they sort of blamed it on COVID and after a while, since it was not going away they sought medical care. So same thing there, if you had a viral infection, over time the cough should get better.

And if it’s not or if it’s getting worse, then we really have to…really need to investigate the reason for that. So anything that’s persistent, I would say that’s when you want to alert your team. What I tell my own patients is that just tell us, and we’ll figure it out for you or with you. Don’t try to kind of figure it out on your own. I do notice that I do have some patients who tell me that they feel bad about calling and “complaining,” right? And we tell them it’s not complaining, you’re just reporting to us, and we tell you it’s nothing to worry about just watch or something that you need to come in for. So really work closely with your oncology team.

Lisa Hatfield:

Okay, thank you. Well, that’s all the time that we have for today’s Start Here Lung Cancer program. Dr. Baik, you’ve been a phenomenal guest, thank you so much for sharing your experience and expertise with us.

Dr. Christina Baik:

Thank you so much. It’s been great.

Lisa Hatfield:

Yeah, we really appreciate your time. And thank you all for tuning in, it’s these conversations that make a world of difference for patients and their families, particularly when we can hear it from researchers on the ground floor. I’m Lisa Hatfield, and I’ll see you next time.


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Advancements in Lung Cancer Clinical Trials | Updates for Veterans

Advancements in Lung Cancer Clinical Trials: Updates for Veterans from Patient Empowerment Network on Vimeo.

How can veterans help move lung cancer clinical trial advancements forward? Expert Dr. Drew Moghanaki from UCLA Health explains clinical trial groups that need more participants, available support resources for veterans, and patient advice. 

[ACT]IVATION TIP

“…speak up and ask if there is a clinical trial that you may be eligible for to help another veteran. And, of course, when you enroll in a trial, you’ll be getting basically the best treatments that we think are available at this time.”

Download Resource Guide | Descargar guía de recursos

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Combating Disparities: Veterans’ Healthcare Access and Quality

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Veteran Lung Cancer Risk | Understanding Exposures and Screening Protocols

Transcript:

Lisa Hatfield:

Dr. Moghanaki, can you speak to ongoing clinical trials and research specifically for veterans? And are there any clinical trials or research studies available that focus on lung cancer treatments specifically tailored to veterans from underrepresented communities?

Dr. Drew Moghanaki:

Yeah. So we want to focus on the people we care about the most, which for many of us are veterans, but at the end of the day, partnering nationally and globally in clinical trials is probably the best thing that we can do. We don’t really think that the lung cancer is…that our veterans are dealing with is necessarily different than what a civilian may be. So by partnering, we have bigger scale to tackle these problems and get these studies done as quickly as possible.

When it comes to underserved communities, same thing. We do the VA and VA researchers definitely make a point of trying to get more underrepresented communities access to clinical trials. But again, we just usually geographic challenges are our biggest barrier. Someone wants to live in this beautiful part of the country up in a mountainside near a lake, but they’re two-and-a-half hours away from a city. That can be challenging for us.

But the good news is that the VA does provide a lot of housing. So for those veterans who live far away, if they want to come, we’ll take care of them. We’ll provide, if they’re eligible for your VA healthcare, we’ll provide them housing. We can even provide them with their meals. And so, and get them access to the best care. So basically my activation tip here is to be aware that clinical trials are really critical.

It’s how we’ve moved forward. It’s a tremendous opportunity to help other veterans behind themselves who will get lung cancer in the future. There’s nothing we can do at this time to stop the number of people getting lung cancer. And so the more research we can do, the better this world can be. And my activation tip is to speak up and ask if there is a clinical trial that you may be eligible for to help another veteran. And, of course, when you enroll in a trial, you’ll be getting basically the best treatments that we think are available at this time.

 

Lisa Hatfield: Great. Thank you. Thank you so much. Those activation tips were really great and patient-centered. And I think that’s what, at least me as a patient, watching that in the audience, that’s what I want to hear is what can I do to help advocate for myself? So thank you for those responses.

 


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Lung Cancer Care for Veterans: Advancements in Radiation Oncology

Lung Cancer Care for Veterans: Advancements in Radiation Oncology from Patient Empowerment Network on Vimeo.

What should veterans with lung cancer know about radiation oncology advancements? Expert Dr. Drew Moghanaki from UCLA Health explains recent advancements in radiation oncology and radiotherapy, where the advanced therapies are accessible, and proactive patient advice.

[ACT]IVATION TIP

“…make sure you do your homework and try to make sure that the department of radiation oncology you’re going to really does have the best technologies. And there’s lots of different ways to look at this, including going online and reading more about what the quality of care might be in the community.”

Download Resource Guide | Descargar guía de recursos

See More from [ACT]IVATED NSCLC Veterans

Related Resources:

Combating Disparities | Veterans' Healthcare Access and Quality

Combating Disparities: Veterans’ Healthcare Access and Quality

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 any promising advancements or techniques in radiation oncology that could potentially improve outcomes for veterans with lung cancer?

Dr. Drew Moghanaki:

Yeah, there really are. So back in the old days, radiotherapy was just an open beam that we would shine towards a general area of the body. And they did a good job of getting control of the cancer, but, unfortunately, it would injure a lot of normal tissues. Today, radiotherapy is much more precise and targeted. In fact, our precision is within less than a millimeter of what we aim at. And so military analogy is this is like your best sharpshooter that can hit a small, less than a one-inch target from a 1,000 yards away.That’s basically what we’re able to do. We’re not a 1,000 yards away. The machine’s right there. We can see inside the human body. We can see the tumor, especially if it’s moving, and we can deliver highly concentrated high dose X-rays specifically to the tumor with a very little amount of exposure to the area around it.

So we’re just not seeing our patients getting injured from radiotherapy, and we’re seeing sometimes some situations up to 100 percent complete tumor control with no further growth. So it’s really important for veterans to know. So my activation tip is if surgery is on the table, you might want to check in with a radiation oncology team as well to see, well, is radiotherapy an option as an alternative? It might be safer and just as good and maybe better. So a lot of people don’t know about this because this is not taught as much, but radiotherapy is really one of the major forms of curative therapy for lung cancer.

Lisa Hatfield:

Okay, thank you. As a patient, I always have follow-up questions to clarify a couple of things. So I have another follow-up question to this, the question you just answered. So I know that not all veterans are seen at VA hospitals or VA facilities. If they are being seen at a VA facility, will they have access to the latest and greatest radiation radiotherapy services, or do only some centers have these special types of therapies?

Dr. Drew Moghanaki:

Yeah, well, when it comes to the VA’s commitment to provide the best care for every single veteran who’s eligible, there’s a logistical challenge in that it’s hard to deliver care to veterans everywhere, especially super sub-specialty care like thoracic surgery or radiation therapy. The equipment’s expensive. There’s a lot of staff that has to be hired. You can just look at airports. We don’t have a major commercial airport in every town and city in the U.S. They’re in major towns, major cities.

And that’s kind of how things are with the VA medical centers. And even when you look at the network of 130 VA medical centers in the 50 states of the U.S. only just more than 40 of them actually have radiotherapy on site at that VA medical center. So a lot of veterans who actually need radiation therapy are going to be getting that through the VA referred out to the community providers.

And so it’s important to if you’re at the VA, you’re very likely to get high-quality radiation therapy because a lot of oversight, the federal government’s watching. In fact, it’s the most regulated radiation oncology service in this country at this time. But if you’re going out into the community, make sure you do your homework. And my activation tip would be then make sure you do your homework and try to make sure that the department of radiation oncology you’re going to really does have the best technologies. And there’s lots of different ways to look at this, including going online and reading more about what the quality of care might be in the community.


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Unveiling Racial Disparities in Early-Stage Lung Cancer Treatment

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

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

[ACT]IVATION TIP

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

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

Related Resources:

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

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

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

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

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

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

Transcript:

Lisa Hatfield:

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

Dr. Samuel Cykert:

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

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

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

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

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

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

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

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

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

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

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

Lisa Hatfield:

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

Dr. Samuel Cykert:

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

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


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Overcoming Barriers to Accessing Small Cell Lung Cancer Care

Patient Empowerment Network (PEN) has a deep commitment to educate and empower patients and care partners in the lung cancer community. Lung cancer treatment options are ever-evolving with new testing and treatments, and it’s essential for patients and families to educate themselves with health literacy tools and resources on updated information in lung cancer care. With this goal in mind, PEN created the [ACT]IVATED Small Cell Lung Cancer program, which aims to inform, empower, and engage patients to stay abreast of lung cancer care updates.

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

SCLC [ACT]IVATED

Small Cell Lung Cancer and Proactive Patients

Unfortunately, the stigma of lung cancer follows small cell lung cancer (SCLC) patients as well. Patient navigator Diana explained some of the history of lung cancer stigma. “Even though smoking is a major risk factor for SCLC, nobody deserves to get cancer. Nicotine is an addictive substance that is extremely difficult for many smokers to quit – especially for those who started at a very young age. Past TV ads to stop smoking built a stigma around cigarette smoking that has created an environment of blame around lung cancer. The stigma is many times greater for extensive stage small cell lung cancer patients.

Advancing on the path to informed and optimal care requires patients to make efforts in self-education and empowerment. These efforts come in various forms but include approaches like improving clinical trial access, learning more from credible resources, asking questions to ensure your best care, and helping to educate others about lung cancer. Cancer patient Lisa Hatfield spoke with lung cancer expert Dr. Rafael Santana-Davila, Dr. Vinicius Ernani, and Beth Sandy to learn some key questions and actions for patients to take. 

Small cell lung cancer falls under one of two categories – limited stage or extensive stage. Dr. Rafael Santana-Davila explained the distinguishing factors and the importance of communication between the medical team members. “In the majority of cases, there’s a very clear distinction, for example, patient has metastatic disease to the liver, that clearly is extensive, stage, but there are occasions where, limited and extensive is very hard to know…all of medicine is a team sport, but treatment of cancer is more because the medical oncologists need to talk to the radiation oncologists to make sure that we’re on the same page as to what is the best treatment we can offer a patient.“

It’s essential for SCLC patients and care partners to prepare themselves for the treatment journey to help ensure their best care. Dr. Santana-Davila shared some key questions to ask to empower themselves for treatment. “…key questions that families should ask at the outset of care, and this is for extensive stage cancer as well as any other cancer, is ‘What are the goals of treatment? What do I expect it to be? How is my life going to look a few months from now? And what can I expect?’ That is, for me, very important that patients know before they start on the journey of treatment.

Thoracic medical oncology nurse practitioner Beth Sandy from Abramson Cancer Center shared patient advice for questions to ask at the outset of care to help patients empower themselves. “…make sure you know your stage, make sure you’re understanding what your treatments will be, and then make sure you understand what support services are available to you.”

Patients from underrepresented communities and all patients should ask questions to help ensure optimal care. Dr. Santana-Davila shared advice on proactive questions to ask. “’What are the latest developments in the treatment of this lung cancer? And am I eligible to receive those treatments? And is this a time where I should seek a second opinion or be referred to a clinical trial and another center?’”

Nancy Gatschet

Nancy Gatschet

Small cell lung cancer patients must be heard by their doctors for their best care. SCLC survivor and PEN Board Member Nancy Gatschet shared her experience with her care team members and their roles in her care. “Doctors matter. A lot. I was treated at an NCI-designated Comprehensive Cancer Center by several exceptional doctors. What made them exceptional? Their listening and observational skills first and foremost, their dedication to staying current with research, and their caring.”

Small Cell Lung Cancer Clinical Trials and Future Treatments

 Clinical trials are vital for refining and advancing treatments for small cell lung cancer. Dr. Santana-Davila shared his perspective about clinical trials and also explained that many clinical trials can assist patients with transportation and lodging costs. “So it’s important for patients to consider clinical trials. That is where we’re analyzing the future medications, and many of those future medications will become the standard of care and by participating in clinical trials, patients will have access to those medications.

Even though non-small cell lung cancer has had more treatment advancements in comparison to small cell lung cancer, that doesn’t mean that the future is bleak. Dr. Santana-Davila shared his perspective about the future of SCLC care and clinical trial opportunities. “So although it’s true that patients with non-small cell lung cancer have had more advances, there is still a lot of hope for the future. And what I can tell you it’s changing rapidly. And in a year, the treatments that we may have available will be different. And all those things are right now going into clinical trials.”

Dr. Vinicius Ernani from the Mayo Clinic sees a bright future for SCLC treatment as well. He shared his perspective with Lisa Hatfield, “…we have some important drugs coming in early development, like I mentioned before, ADCs, antibody drug conjugates. So my hope, that is we are going to be in a better spot in the near future.

SCLC [ACT]IVATED

[ACT]IVATED Small Cell Lung Cancer Program Resources

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

[ACT]IVATED Animated Video Series

[ACT]IVATED Expert Interviews

[ACT]IVATED Toolkit

[ACT]IVATED Guides

Though there are small cell lung cancer challenges and stigma, patients and care partners can take action to educate themselves to help ensure optimal care. We hope you can benefit from these valuable resources to aid in your lung cancer care for yourself or for your loved one.

PODCAST: What Non-Small Cell Lung Cancer Treatment is Right for You?

 

What’s the best approach for YOUR lung cancer? Dr. Isabel Preeshagul discusses the importance of engaging in your lung cancer care decisions, shares advice for working with your team to determine a treatment approach, and reviews factors that affect therapy options. Dr. Preeshagul also provides an update on the latest research and clinical trials.

Dr. Isabel Preeshagul is a thoracic medical oncologist at Memorial Sloan Kettering Cancer Center. Learn more about Dr. Preeshagul.

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See More From INSIST! Lung Cancer


Transcript:

Katherine Banwell:

Hello and welcome. I’m Katherine Banwell, your host for today’s program. Today, we’ll discuss the latest advances in non-small cell lung cancer care as part of our Insist series, which encourages patients to play an active role and insist on better care. Before we get into the discussion, please remember that this program is not a substitute for seeking medical advice. Please refer to your healthcare team about what might be best for you. Well, let’s meet our guest today. Joining me is Dr. Isabel Preeshagul. Dr. Preeshagul, it’s so good to have you with us. Thank you. Would you introduce yourself? 

Dr. Isabel Preeshagul:

Yes. Thank you so much for having me and for the very kind introduction. My name’s Isabel Preeshagul. I am a Thoracic Medical Oncologist at Memorial Sloan Kettering Cancer Center, and it is a huge honor to be here with you today. 

Katherine Banwell:

Well, we’re so glad to have you with us. I’d like to start with a question pertaining to our series title, Insist. Why is it essential for patients to collaborate with their providers on care treatment decisions? 

Dr. Isabel Preeshagul:

So, collaborating is so important, right? I always tell my patients this is not a dictatorship, right? This is a collaborative effort where I’m here to guide you, but you are the captain of the ship. 

You are the one that needs to make all of the decisions, and I’m here to make sure that the ship goes in a smooth direction, so making sure we have open lines of communication that the patients and their caregivers feel comfortable talking to me and my team and also vice versa and that we trust each other. It’s so important because we are going for a marathon, right? We’re not going for a sprint. This is a long-term relationship, whether we’re treating for cure or we’re treating you with palliative intent and it’s treatable but not curable. We’re going to be following with each other for a long time.  

Katherine Banwell:

A lung cancer healthcare team, of course, consists of a number of different providers. Would you tell us about the various members on a team? 

Dr. Isabel Preeshagul:

Sure. So, there is – there are the people that do the scheduling, that make sure that the CAT scan is scheduled, that the MRI is done, your chemo gets scheduled, all of that. The schedulers are super important and an integral part of our team.  

And then we also have our office coordinators  that answers the phone calls and passes along the messages and assists with scheduling and sort of sets expectations and is the face of the practice. Then you have an office practice nurse or an oncology practice nurse who is the doctor’s right hand, making sure that the patients get proper chemotherapy teaches, making sure that they understand about possible side effects, risks versus benefits, making sure medications are up to date, assessing symptoms.  

They are sort of the front line when it comes to any patient call they’re triaging, and they’re escalating or deescalating. That would be the office practice nurse. And then you have an advanced care practitioner, an APP. You either have a nurse practitioner or a PA that’s working with you that’s sometimes seeing patients independently, sometimes putting chemotherapy orders, you know, really serving as almost as another doctor. 

If for some reason there is something that the doctor’s not available to do, the doctor needs in a pinch, or my patients that are almost at long-term follow-up that are doing great that are just kind of coasting, I will share with my NP and make sure that they know her just as well as they know me. And sometimes there’s a fellow or there’s a resident or there’s a med student that’s part of the team as well because see one, do one, teach one. It’s really important to teach those that are coming after you and serve as mentors and really include them in part of the team and part of the decision-making. And then you have the doctor that just kind of oversees everything.  

Katherine Banwell:

Of course. How would you define treatment goals for people with lung cancer? 

Dr. Isabel Preeshagul:

So, the goal of treatment, I think, is really contingent upon someone’s stage, but it’s also contingent upon what’s important to the patient, right? So, we have patients that are stage I all the way to stage IIIC that we treat with intention to cure.

And patients that have stage IV disease, it’s treatable but not curable. So, I am very transparent with that as long as I have the information to have that discussion. With that being said, there are some patients with stage IIIdisease or stage I disease that don’t really want treatment and want to focus on quality of life. And that’s okay too. And in which case, you know, at some point, their cancer will likely progress. How quickly or when that will happen, we don’t know. Could they pass from something else? It’s possible. But you really need to talk about what’s important to the patient, because it’s not always cut and dry.  

Katherine Banwell:

As you mentioned, Dr. Preeshagul, there are several different support members on a team. What would you say to patients or even care partners who can sometimes feel like they’re bothering their healthcare team with their questions and comments? 

Dr. Isabel Preeshagul:

So, we do get that concern a lot. And I always say, “I’m here for you 24/7. And, if it’s not me, it’s someone that’s just as qualified to answer your questions no matter what.” 

“And I would rather get a phone call at 3:00 a.m. than get a phone call at 9:00 a.m., and you need to go to the hospital right now or God forbid something happened. I get a phone call from someone in the ICU that you went overnight and terrible things happened. So, I want the phone calls to come through to keep you out of the hospital and keep you from going south. So, call me.” And I never try to – I don’t try to outline contingency plans or criteria of what would warrant a call, because then you end up getting in trouble.  

I always just tell my patient, “Think about how you’re feeling now in front of me. If you’re feeling any different than how you feel at this very moment, call me.”  

Katherine Banwell:

Good advice. I’d like to turn to the clinical side of non-small cell lung cancer. What tests help you identify the type and stage of lung cancer?  

Dr. Isabel Preeshagul:

Obviously, you need a CAT scan. You need a CAT scan of the chest, abdomen, pelvis, and you need an MRI brain and a PET scan.  

Those are really the gold standards for determining clinical staging. In regards to pathologic staging, it’s really important to have tissue samplings. So, you biopsy a site of disease that’s concerning to you. If it looks like there’s only disease in the chest, you want to biopsy the site where there’s the tumor, and then you talk with your thoracic surgery or pulmonary team to determine the best way to sample the mediastinum for full staging.  

Katherine Banwell:

Why is an accurate diagnosis so important?  

Dr. Isabel Preeshagul:

So, an accurate diagnosis is so important because lung cancer is by no means black and white anymore. There are so many histologic subtypes that we are learning about. There are so many different molecular drivers that we are learning about. So, making sure you have the right diagnosis, full and next-generation sequencing testing, all of the imaging that you need could really make or break your treatment plan.  

Katherine Banwell:

Dr. Preeshagul, let’s talk about biomarker testing. How is biomarker testing for lung cancer different from hereditary genetic testing?

Dr. Isabel Preeshagul:

So, we do do hereditary genetic testing for lung cancer patients as well. So, I think let’s backtrack a little bit. When you’re doing on a patient, there’s germline mutations and there’s somatic mutations. And germline mutations are mutations that you might get from Mom and Dad that they got from their parents and so on and so forth that you could give to your children or your brother and sister or whatever. So, that’s germline testing that could be passed along.  

That would be like BRCA or any other APC gene, but we are learning more and more that there are mutations in lung cancer that do have a hereditary aspect to them. So, we are learning now that while we do somatic testing, which is to find a mutation that just spontaneously happened in your tumor all on its own, it’s really important to pair that with germline testing to make sure that there isn’t some kind of heritable mutation that’s also driving this lung cancer.  

Katherine Banwell:

You mentioned hereditary genetic testing. Should family members of people with lung cancer undergo genetic testing then just to be reassured? 

Dr. Isabel Preeshagul:

So, if there is a germline mutation, then they should – the family members should be referred to a geneticist to have that discussion.   

Katherine Banwell:

What are common lung cancer biomarkers? 

Dr. Isabel Preeshagul:

So, we have nine biomarkers within approval right now, but there are so many. There’s more than I could even talk about today. But some of the more common ones are EGFR, ALK, ROS1, MET exon 14. You have KRAS, KRAS-G12C, which is a newer one. We have NTRK. We have RET. The list goes on, HER2. I could talk for – there’s not enough time on this Zoom video to talk about all of the mutations. But there are nine mutations with approvals as of now to date, this very moment. That could change tomorrow.  

Katherine Banwell:

Of course, it could. How do biomarkers in lung cancer affect treatment options for lung cancer patients? 

Dr. Isabel Preeshagul:

So, it used to only be in stage IV, but now we are learning that biomarker testing is really important from the get-go because we have induction or neoadjuvant protocols that are looking at giving targeted therapy before patients go to surgery. 

We know that there’s FDA approval for patients to get targeted therapy after surgery, and there’s a survival advantage there. So, make sure that you have next-generation sequencing testing regardless of your stage.  

Katherine Banwell:

Okay. That’s good advice. So, we’ve heard how testing and a patient’s individual disease can lead to more targeted options. And you just mentioned targeted therapies. How do they work? 

Dr. Isabel Preeshagul:

So, there’s many different targeted therapies that we have. Some of given as an infusion. For HER2, for example, we have TDXD, and we have T-DM1. TDXD is the only drug that’s FDA-approved in this setting. There are clinical trials looking at T-DM1. For EGFR Exon 20, we have another infusional drug called amivantamab (Rybrevant). For EGFR Exon 19 and Exon 21, we have a pill called osimertinib (Tagrisso). For KRAS, there’s a pill. For most of the driver alterations, it’s a pill, but some of them it does require infusional therapy. 

But these are therapies that are targeted at the cells that harbor that mutation.  

Katherine Banwell:

Let’s turn to immunotherapy. What is it, and how does it work? 

Dr. Isabel Preeshagul:

So, immunotherapy is basically teaching your body to recognize cancer as foreign. So, when you have – I always kind of use this hand model. So, basically, a normal cell has, let’s say, three prongs. And then sometimes what happens is cancer will grow a marker called PD-L1 that makes it hide from the immune system. So, the body thinks that this is a normal cell. So, what immunotherapy does is it comes up and it sort of puts a cap on that PD-L1 so that the cell looks foreign again and the body can attack that cell and get rid of it. So, it’s almost like ramping up your immune system to recognize that marker and get rid of that cell. 

Katherine Banwell:

What is the regimen for immunotherapy, and how often is treatment administered? 

Dr. Isabel Preeshagul:

So, immunotherapy is approved in the neoadjuvant setting, which means before chemotherapy. It’s approved after chemotherapy, and it’s approved in the stage IV setting. There are many different regimens and many different dosings and many different drugs. But it’s typically given in your veins, either once every three weeks or once every four weeks for a certain amount of time. If it’s given in a curative setting and it’s given indefinitely or until there’s disease progression or intolerance in the stage IV setting.  

Katherine Banwell:

Okay. Let’s touch upon the side effects of these types of treatment. You’ve mentioned that there are so many, but what are some of the major side effects, and how are they managed? 

Dr. Isabel Preeshagul:

Side effects of immunotherapy can include pneumonitis, which is inflammation of the lungs, any kind of endocrinopathy like issues with your thyroid, issues with your pancreas like diabetes.  

It can cause colitis, which is diarrhea, inflammation of the colon, hepatitis, inflammation of the liver. It can cause cerebritis, inflammation of the brain. It can cause arthritis or arthralgias, inflammation of the bones. And it can also cause rash and fatigue. 

Typically, if it’s the thyroid, it’s managed with thyroid replacement hormone or a drug that would calm down the thyroid if it’s overactive. Pneumonitis is steroids. Hepatitis is sometimes treated with steroids. Colitis, steroids typically. Steroids usually come somewhere in there, usually not with the endocrinopathies, but the other itis’s, it’s typically – we start with steroids and go up from there. And the goal is to really recognize these toxicities before they become a problem and just at the glimmer of them just starting.  

Katherine Banwell:

So, would you consider these treatments to be personalized medicine then? 

Dr. Isabel Preeshagul:

So, it’s personalized in the sense that if someone has a high PD-L1 expression, there may be some data to demonstrate that they may benefit from immunotherapy or have a response. If someone can’t tolerate chemotherapy or is not interested in chemotherapy or has other reasons that may preclude them from getting it, it might be reasonable. So, in that sense, it is considered personalized.  

Katherine Banwell:

How would you define personalized medicine? 

Dr. Isabel Preeshagul:

To me, personalized medicine takes into account the biologic makeup of a patient’s disease like if they have a mutation and what their PD-L1 status is, what the histologic makeup of it. What’s their stage? And then, on the other hand, what’s important to that patient? If they’re a tailor, you want to make sure you’re not giving them a medication that’s going to cause neuropathy, so they can’t use their hands.  

If they enjoy playing the harp or the piano, same thing. If their goal is to continue to run marathons, you may want to avoid something that’s going to cause inflammation of the lungs and risk them for pneumonitis. Tailoring to make sure that the treatment is part of their life but does not become their life. 

Katherine Banwell:

If the test results don’t reveal one of the biomarkers you’ve been talking about, what other treatments are available?  

Dr. Isabel Preeshagul:

So, if I don’t have an FDA approval, then sometimes we look to see if there is a clinical trial in our early phase drug development program, and we talk about a clinical trial. If there’s no clinical trial and I don’t have an FDA approval, then we have to talk about what options are considered standard of care and how to make that work into the patient’s lifestyle.  

Katherine Banwell:

What about surgery? When is it used?  

Dr. Isabel Preeshagul:

Surgery is typically used in the curative setting with early-stage disease. We’re really trying to give patients some kind of chemotherapy or some kind of treatment before they go to surgery. It’s shown to improve outcomes. It just gives us a en vivo view of how the tumor will respond to the treatment. So, we typically use surgery in the curative setting. And, at times, it’s appropriate to use surgery for a metastasectomy when you have one little site that’s growing. Sometimes after a tumor board discussion, it might be reasonable to resect that area.  

Katherine Banwell:

Is radiation still used? 

Dr. Isabel Preeshagul:

Same thing. It can be used in the curative setting, typically for patients with stage IIIB or stage IIIC disease and combined with chemotherapy patients that are not considered surgical candidates, or it’s used in the palliative setting when patients have painful metastases. 

Katherine Banwell:

Would you define the B and C? You’ve mentioned that a couple of times.  

Dr. Isabel Preeshagul:

Yeah. 

Katherine Banwell:

We’re used to hearing Stage 1, 2, 3, 4. But what’s a stage IIIB and a stage IIIC? 

Dr. Isabel Preeshagul:

Yeah. Sure. Sure. So, it does get a little bit into the weeds here about the size of the tumor and the amount of lymph nodes and location of the lymph nodes. But basically, stage IIIA is considered resectable. That means – that could be the size of the tumor with no lymph nodes, or it could be a smaller tumor with a lymph node on the same side as the disease. Stage IIIB would be a lymph node right underneath the windpipe at the station 7. And stage IIIB also includes lymph nodes that have crossed over to the contralateral side. And stage IIIC would be lymph nodes that are maybe up at the contralateral supraclavicular space. 

Katherine Banwell:

Okay. Do treatment options change if the lung cancer returns? 

Dr. Isabel Preeshagul:

Yes, they do change depending on if this is the same tumor type that’s come back. It’s typically a different treatment algorithm, yeah.   

Katherine Banwell:

Okay. And should biomarker testing be done again if a relapse occurs? 

Dr. Isabel Preeshagul:

100 percent. Because it guides everything about a patient’s treatment. It’s super important.  

Katherine Banwell:

Okay. What are you excited about right now in lung cancer research? 

Dr. Isabel Preeshagul:

I am excited and overwhelmed by the fact that we have so many approvals and so much exciting data that was just presented at ASCO and World Lung and ESMO that it’s next to impossible to keep up. And I’m happy that we have that problem, and I’m happy that the patients have – there’s a spotlight on lung cancer when we were in the shadows. And now, I think we have the spotlight. 

And all of these approvals, you know, with it being Lung Cancer Awareness Month as well, I think is just so important. Just to make sure that we get the knowledge of these new approvals out there though, that is another struggle. 

Katherine Banwell:

Well, are there any current clinical trials that look promising to you? 

Dr. Isabel Preeshagul:

Yeah, I think there are many clinical trials. In the induction setting, there was some data that was just presented on ALINA looking at adjuvant alectinib (Alecensa). We just had a – we have approval for adjuvant osimertinib (Tagrisso) and the ADAURA trial.  

But we are learning more and more that as these targeted therapies have approval in stage IV, we’re trialing them in stage III, and then we’re going to trial them in earlier stages and earlier settings. So, this has been the pattern of how drugs get approved. So, yes, there’s lots of exciting data coming through. 

Katherine Banwell:

That’s excellent. Can you talk about antibody drug conjugates and where they fit into lung cancer care? 

Dr. Isabel Preeshagul:

Yeah. That’s a great question. I don’t think anyone knows the answer as to where they fit in just yet. 

We have probably over 300 antibody drug conjugates that are in development right now. And one of the more common ones that we use is trastuzumab deruxtecan (Enhertu), or TDXD, which is used in patients that harbor HER2 alterations in the stage IV lung cancer setting. It is basically almost like a Trojan horse. So, you have this antibody.  

It’s typically IgG1, immunoglobulin. And then you have a linker, and then at the end of that linker is the warhead or the chemotherapy agent. So, the antibody comes in towards the cancer cell looking very innocent. It binds to the cancer cell. And, once it binds, then everyone inside the Trojan horse or this warhead rush into the cell and get to do its damage. So, it’s a totally different mechanism. We’re trying to outsmart some of the bypass mechanisms that cancer cells develop. And this may be the new wave, but stay tuned, more to come.  

Katherine Banwell:

Right. So, it’s promising.  How can patients find out more about current clinical trials? 

Dr. Isabel Preeshagul:

So, you can always ask your healthcare practitioner if there are any clinical trials at the institution that you’re at, but clinicaltrials.gov has all the clinical trials that are available nationally and internationally.  

You just type in your disease type. You can type in a couple keywords, EGFR maybe or ROS1 or stage IV, something along those lines, and then it should populate a list of clinical trials and what institutions have them open, if they’re still accruing or if they’re not, and a contact on that trial.  

Katherine Banwell:

If a patient is interested in a clinical trial, what kinds of questions should they be asking their healthcare about the trial? 

Dr. Isabel Preeshagul:

So, the first question to ask is, “Do we have any clinical trials that are appropriate for me?” If the answer is yes, “Are they appropriate for me now, or are they appropriate for me if what I’m on right now is not working?” 

So, trying to figure out where that will be, and if they are appropriate for you now, how can I get evaluated, and how can we get things underway? 

Katherine Banwell:

Yeah. What would you say to patients who are interested in participating in a clinical trial, but they’re nervous about it?

Dr. Isabel Preeshagul:

I think one thing that I love about being on a clinical trial is that there are more eyes are on you, because we are looking to get something approved, and we are just watching every single little granular detail. In a way, it’s almost like you’re being more micromanaged than if you were on standard of care because of just how many stops and checks there are, how many eyes are looking at your labs after the doctor and the nurse and the nurse practitioner, and the fellow take a look at everything. It’s 10 other people. So, it’s almost like it’s extra safe because of all of that. It’s exciting because you are hopefully getting tomorrow’s treatment today, right? 

You’re trailblazing the way for other people after you. So, I think it’s exciting, but, of course, it’s nerve-wracking. It’s something new. You don’t know if it’s going to work. But I have to believe that the way that clinical trials are designed now and the clinical trials that we choose to open here, we really hope are going to be pushing the space forward. 

Katherine Banwell:

Yeah. I’d like to get to a few questions that we received from audience members prior to the program. How do you help a family member that is an overwhelmed caregiver but refuses help? Any tips on how to provide support to this person?  

Dr. Isabel Preeshagul:

I mean, I think we see caregiver burnout thousands of times a day, unfortunately, and the first thing is knowing how to recognize it. And the second most important thing is taking the time away from the visit with the patient to address the burnt-out caregiver, because there is not enough time in any visit to ever – there’s never enough time in my mind to spend with a patient.  

I’m always pulled in a thousand different directions. And I think we all feel that. But taking the appropriate time to sit down and to say, “Hey. Listen. I recognize that you’re burnt out. I can see it. Who is in your corner helping you?” And just directing focus away from the patient just for a moment and to really focus on that caregiver and to rely on the social work team and the case manager and the support groups that your institution may have and to make sure that they know about those resources. 

Katherine Banwell:

Yeah. Here’s another question we received. “Can you share more information regarding treatments available for stage IV lung cancer and their side effects?” 

Dr. Isabel Preeshagul:

It depends on if this is non-small cell or small cell. It depends on if you have a driver alteration or not. So, I think that is a little bit challenging to talk about in just one session. But basically, you’re probably looking at some kind of targeted therapy if you have a mutation versus standard of care if you don’t have a targeted mutation versus a clinical trial. And I think those are kind of like the big baskets.  

Katherine Banwell:

When is a second opinion necessary? Dr. Isabel Preeshagul: A second opinion is necessary anytime you want a second opinion.  

Dr. Isabel Preeshagul:

There is no right or wrong time, any time. You’re just not jiving with your oncologist after the first day you met them, second opinion. You’re at the end of the line and you really want toknow more, second opinion. You’ve met two other doctors. You’re not jiving, third opinion. It’s always appropriate anytime you want. 

Katherine Banwell:

So, the patient shouldn’t feel obligated to stay with that one provider? 

Dr. Isabel Preeshagul:

Never. Never, never, never, never, never. No. Please don’t feel that way. There are no hard feelings. And, if there are, that’s not the right oncologist for you. It needs to feel like a perfect friendship. And, if it’s not that, it’s not the right thing.    

Katherine Banwell:

Before we close, Dr. Preeshagul, I’d like to get your final thoughts. What would you say to the audience about the future of lung cancer care and treatment? 

Dr. Isabel Preeshagul:

I do think that the future is bright because, as I mentioned, there is now this light that is shining in the lung cancer space. And things are getting approved. and discoveries are getting made faster than we can even keep up, which is exciting and overwhelming and daunting. But I am happy that, finally, this space is taking off, so I feel optimistic.  

Katherine Banwell:

Okay. All right. Well, I wanna thank you so much for taking the time to join us today, Dr. Preeshagul.  

Dr. Isabel Preeshagul:

Thank you so much for having me. These were wonderful questions, and I look forward to many more discussions with you. Thank you.  

Katherine Banwell:

And thank you to all of our partners. To learn more about lung cancer and to access tools to help you become a proactive patient, visit powerfulpatients.org. I’m Katherine Banwell. Thanks for being with us today.   

INSIST! Non-Small Cell Lung Cancer Resource Guide

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What Non-Small Cell Lung Cancer Treatment is Right for You? Resource Guide

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PODCAST: Why Test Results Matter | Accessing Personalized Non-Small Cell Lung Cancer Treatment

Can test results affect non-small cell lung cancer treatment options? Dr. Erin Schenk reviews essential lung cancer testing, discusses how the results may influence treatment approaches, and explains why it’s important for patients to take an active role in their care and treatment choices.

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.

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Transcript:

Katherine Banwell:

Hello, and welcome. I’m Katherine Banwell, your host for today’s program. Today we’re going to discuss the latest advances in lung cancer including the role of genetic testing and how this may affect treatment options. Before we get into the discussion, please remember that this program is not a substitute for seeking medical advice. Please refer to your healthcare team about what might be best for you. Well, let’s meet our guest today. Joining me is Dr. Erin Schenk. Dr. Schenk, welcome, would you please introduce yourself? 

Dr. Erin Schenk:

And thanks so much, Katherine. I’m Dr. Erin Schenk. I’m a medical oncologist at the University of Colorado and I have a great position where I’m able to take care of patients with lung cancer in the clinic and also, do laboratory-based research on new and different therapies for lung cancer. Thanks so much for having me. 

Katherine Banwell:

That’s so great. Oh, I’m so glad you were able to join us today. 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:

Thank you for that Dr. Schenk, that’s helpful as we begin our discussion today. I’d like to start with some basics. What are the various subtypes of lung cancer, and how are they identified?  

Dr. Erin Schenk:

Absolutely. So, there are a number of different subtypes of lung cancer that are important for us to identify, because it helps to stratify or helps to select the right treatment approaches for a patient. So, usually when someone is diagnosed with lung cancer there was a scan done at some point that noticed a mass or masses in the body. 

What happens next is a biopsy happens where a needle is used to sample the tissue, and that could be in the lung, that could be in lymph nodes or other parts of the body and that tissue that’s sampled is first sent to my colleagues in pathology.  

And they’re a group of doctors who look at tissues underneath the microscope and try to identify what those are. And based on that initial pathology analysis, we can identify usually pretty straightforward, what is the type of cancer that they see under the microscope.  

And so, in very general terms there are non-small cell lung cancers, there is a group called small cell lung cancers, and there’s also a group called neuroendocrine cancers as well. Oftentimes, times we’re able to differentiate these types of tumors, these types of lung cancers based on how different markers show up, and these are called stains. 

And these stains can differentiate non-small cell between adenocarcinoma versus squamous cell carcinoma. And then they can also help differentiate small cell lung cancer. And then, of course, they can also help to identify if this is a neuroendocrine tumor. 

Katherine Banwell:

Okay. Thank you so much for explaining that. Today we’re going to focus on non-small cell lung cancer. Are there specific tests that patients should ask their doctor for following a diagnosis?  

Dr. Erin Schenk:

Absolutely, and I think it’s sometimes helpful to understand what are all the pieces of information I need when I first meet a patient to make decisions about treatments? So, we just went over the histology or another word, the pathology, what does the cancer look like underneath – under the microscope? That can help and that’s one of the pieces, understanding what type of non-small cell lung cancer is present. 

Additional information that’s needed includes certain tests, and you might hear say like, molecular testing or sequencing. Those pieces of information can be really important for treatment selection. So, whether there’s a diagnosis of adenocarcinoma or squamous cell lung cancer, we always try to know the PD-L1 status. And that’s actually a surface marker that’s present on the outside of the cancer cells and is able to help us select immunotherapy treatments as appropriate.  

Oftentimes, patients with lung adenocarcinoma will get further sequencing of the tumor itself. And again, you might hear of this called molecular testing or next-generation sequencing, NGS. There are a lot of terms we use for it, but fundamentally, what we’re trying to do is understand the vulnerabilities of the cancer cells. 

And these vulnerabilities can be identified by these molecular tests. They often are able to recognize mutations or fusions or genetic changes within the cancer cells that are present. This is critically important, because we have a whole number of oral targeted therapies that can go after these mutations or alterations, and in other words, they go after the vulnerability in the cancer cells. That’s the adenocarcinoma histology.  

That’s the majority of non-small cell lung cancer diagnoses but I think also if you have been told your diagnosis is of squamous lung cancer, classically we don’t often think of those driver alterations or those fusions or mutations that I just spoke about. But I think it’s also quite important for patients in that situation to also undergo molecular testing.   

As we learn more and more, sometimes those squamous lung cancers can also bear those same alterations. Not to the same frequency, but they can be present, and I think it’s important as you’re thinking about a patient to try to understand what are all the tools I have for them to do that sequencing just to make sure you’re not missing something. So, that’s a really in-depth look to molecular testing.  

I’d like to transition to some of the other tests that would be necessary to help put that molecular testing in context. Another important piece is something called staging. And staging is a way to determine if the lung cancer has traveled elsewhere in the body.  

Sometimes it can be involved in the lymph nodes of the middle of the chest. Sometimes it can go outside the chest. For example, to the bones or the liver or the brain, and understanding that information, understanding that lay of the land before we start treatment, is really important, not only for treatment selection, like the treatments, the medicines I would give as a medical oncologist.  

But also, in thinking about which other colleagues of mine who help take care of patients with lung cancer should I also involve in some of these treatment decisions. So, staging can often involve CT scans of the chest, abdomen, pelvis. A PET scan can be done. As well as an MRI of the brain. 

Katherine Banwell:

Dr. Schenk, I just want to confirm that you’ve been speaking about molecular testing, that’s the same as biomarker testing, right?  

Dr. Erin Schenk:

Exactly. Exactly.  

Katherine Banwell:

And how is it performed? 

Dr. Erin Schenk:

So, biomarker testing, molecular testing, NGS, there’s a whole range of synonyms we use, that is done primarily on the tumor tissue.   

So, the first test that usually comes back is a marker on the cancer cell. 

That’s PD-L1. That is an IHC test that is able to be done pretty quickly and we’re able to have a turnaround time of just a few days to understand that first biomarker. But the PD-L1 status does not make sense unless we have all of the other information to get the best context, the best understanding of the tumor and what drives the tumor. That additional testing is actually the next-generation sequencing where the genetic material of cancer cells, the DNA and RNA is sequenced in a laboratory to look for those mutations or fusions or other alterations that can drive the cancer cells. And again, it helps me identify additional vulnerabilities in the cancer cells to allow me to pick the optimal therapy for the patient in front of me. 

The tissue testing is the gold standard and we try to get all of our answers from the tissue. Sometimes we’re also able to get additional information from the blood, and that’s what’s called a liquid biopsy. Cancer cells – in some patients, cancer cells shed their genetic material into the bloodstream.  

And these specialized tests are able to pick up that genetic material, have the sequencing done on that, and then report back to me about what may or may not be found.  

Now, as I mentioned, not all of lung cancers shed this information into the blood, so it’s not – if the blood does not reveal an answer or information, that’s – we still need to look closer at the tissue, but occasionally if the blood reveals certain alterations, that can be acted upon, and we don’t have to wait for the tissue testing. 

I think one of the challenges that I absolutely sympathize with their biomarker or molecular testing is that it can take a series of weeks to really get all of the information necessary to make the best choice for the patient in front of us.  

And I have a saying I like to share with patients that is really important and I think really fundamental to the treatment choices for patients with lung cancer and that is, it’s better to get started on the right treatment rather than the fast one, and that’s true. We know through a series of clinical trials that if I were to start a patient on a treatment that wasn’t appropriate to their biomarkers I actually hurt them. So, I actually reduce how well their later therapies will work. 

And so, it’s a tough wait and I anxiously wait with all of my patients but it’s a really important – it’s really important to get all of that information together. 

Katherine Banwell:

Well, would the cancer change dramatically over a period of three or four weeks? 

Dr. Erin Schenk:

That’s it, you know, that’s a question I hear a lot from patients, and, again, to empathize with the agony of waiting, it’s hard to wait but I can tell you as a doctor who’s taken care of many, many patients with lung cancer the weeks do not make a difference in terms of will have – will it hurt me? So, it will not in general it does not hurt to wait. It’s better to get started on the right treatment because the right treatment has the highest chance of being effective. 

So, the two to three weeks very rarely in my experience has that changed a situation for a patient, but that’s also why we frequently do the liquid biopsy testing at the same time as the tissue testing, because we too want to try to get the answer as quick as possible. So, we try to exhaust all of the routes that we have to get the answer that we need for our patients. 

Katherine Banwell:

What about the latest advances, is there anything in lung cancer testing that patients should know about? 

Dr. Erin Schenk:

Yes, absolutely. I think more and more we’re using these liquid biopsies in different situations for patients with lung cancer. So, Katherine, you and I have mostly been talking about patients who’ve been diagnosed with metastatic disease or a disease that’s been spread outside of the lungs. The liquid biopsy testing, though we’re starting to use in patients who have tumors we can remove with surgery or tumors we can try to cure with a combination of chemotherapy and radiation therapy. 

And we’re using more as a marker of response, and what I mean by that is let’s say someone with a cancer that can be surgically resected or removed by surgery, we can check their liquid biopsy. And if we see a marker in their liquid biopsy, we can then follow that over time in conjunction with scans to try to understand is the cancer – you know, with all the information we can, is the cancer completely gone or are we starting to see that marker again? Do we need to think about doing different scans or different tests to look for a potential area of recurrence of the cancer? 

Katherine Banwell:

What sort of questions should patients be asking about their test results? 

Dr. Erin Schenk:

I think the primary question is “Have you sent my tissue for biomarker testing?” 

And this is true – in my opinion, this is true regardless of the stage of diagnosis, again in the non-small cell lung cancer space, and that’s because we are starting to use some of our targeted therapies as well as our immunotherapies in patients with cancer that can be resected by surgery or maybe would get chemotherapy and radiation therapy. So, these biomarkers are also important in that decision-making for patients that have an earlier stage of disease. And so, I think the first question is, “Has my tissue been sent for biomarker testing?” because I think that’s a part as a necessary part of care given the advances that we’ve made.  

That’s the first question, two, “When do you expect the results? When did it get sent off?” and then three, you know once that has been sent off and whether that’s tissue testing, liquid biopsy, or both, talking with your doctor and your team about what it means.  

How they incorporate this data into your treatment decisions, and then occasionally, asking about did they get all the information they need? Because while we’ve been able to do this biomarker testing for lung cancer for years now, you know, no test is perfect and sometimes cancer cells aren’t the best material to start with when you’re trying to get a really definitive answer.  

So, occasionally patients might need to be biopsied again to really and truly get the full spectrum of information necessary prior to making treatment decisions.  

Katherine Banwell:

Yeah, great suggestions. Great ideas, thank you. We’re hearing the term personalized medicine a lot these days. Would you define the term for our audience? 

Dr. Erin Schenk:

Absolutely, and I think the treatment of non-small cell lung cancer is one of the poster childs for children – for personalized medicine because based on the result of the biomarker testing that’s what drives my choice of therapy because the biomarkers help to tell me what is this cancer most likely to be vulnerable to and that in my mind that’s a wonderful application of the promise of personalized medicine.   

Katherine Banwell:

Okay. Let’s move on to treatment now, Dr. Schenk. Would you walk us through the current treatments being used to treat non-small cell lung cancer? 

Dr. Erin Schenk:

Absolutely, and there are a broad range of options, and thankfully we have so many choices in how to best help patients. And it’s often why visiting with a center that sees a lot of patients with lung cancer can be beneficial so that you have all of the parties at the table that need to be there as we’re making these treatment decisions. So, I would start thinking about patients with early-stage disease. Often surgery if tumors are small enough and there’s not you know, no lymph nodes are involved with the cancer and it’s not anywhere else.  

Sometimes surgery is all that patients might need in terms of their treatment. Those are for patients with smaller tumors and really early-stage disease. As we move forward in the stages, meaning going from stage one to stage two, so a little bit bigger of a tumor, lymph nodes might be involved.  

That’s when really the multi-disciplinary approach happens, and what I mean by that is for example, at my institution where people like me, medical oncologists, radiation oncologists, and surgeons all sit down together to talk about a patient, their scans, you know, what is their health status, what is their biomarker testing, to try to come together to form a treatment approach. And so, at our institution, you know, frequently in stage two to stage three tumors based on biomarker testing we either select upfront surgery followed by chemotherapy followed by sometimes targeted therapies or TKIs.  

Those are the medicines, the TKI, those are the medicines that are really dependent on the presence of biomarker testing. So, the biomarkers often tell us for example if there’s an EGFR mutation. If that’s present then I would use an EGFR TKI, for example. 

But if those biomarkers don’t show a alteration where I have TKI to use, then we frequently are giving patients chemotherapy plus immunotherapy before surgery. This approach is called a neoadjuvant chemoimmunotherapy approach, and it’s one of the newer changes to lung cancer care within the past year that I think really is going to have a positive impact on outcomes for patients with lung cancer.   

So, just again in broad strokes, and then as we move into stage three patients where we can’t resect the tumor, that’s where we give chemotherapy medicines plus radiation therapy. Oftentimes followed by immunotherapy and then when patients have disease that spread outside of the chest, outside of the lungs, the metastatic setting or stage IV, that’s when we think about the whole host of therapies available through medical oncology, systemic therapies is another way to call them.  

And there we think about immunotherapy-based treatments plus or minus chemotherapy or we think about targeted therapy-based approaches with those TKIs. And again, it’s all based on those molecular markers, those biomarkers. 

Katherine Banwell:

Do clinical trials play a role in lung cancer treatment? 

Dr. Erin Schenk:

Clinical trials are incredibly important for the treatment of lung cancer. These are the tests and the procedures that we do that have continuously advanced our ability to care for patients with lung cancer. You know, it was clinical trial data that helped us get alerted to doing chemotherapy and immunotherapy before surgery really can help patients do better. And similarly, clinical trials have helped us define when do we use TKIs or targeted therapies. 

So, I think that’s another great question to ask your team of, “Based on all of the information you know about me and my cancer are there clinical trials options that are available here where I’m at or ones that are really interesting or appealing elsewhere that might be worthwhile for me to consider?” So, clinical trials are a critical part of how we help patients do better.  

Katherine Banwell:

Personalizing therapy involves taking into account a number of patient factors. What should be considered when deciding on a treatment regimen for a given patient?   

Dr. Erin Schenk:

Yes. That’s a great question and one that is really important in formulating a treatment plan. So, some patients because of their health status, for example, aren’t able to undergo surgery, and that happens. And so, occasionally sort of their health status maybe their lungs don’t work as well as they used to or the heart doesn’t pump as well as it used to. 

You know, those sorts of health concerns can help us tailor and personalize treatments to what would be the most – the safest but also the most effective approach. Occasionally patients have another long-term chronic disease where using immunotherapy might be more dangerous than helpful because they’re sometimes autoimmune diseases.  

Especially ones that affect the brain, so for example multiple sclerosis can be one of those or disease that affect the lungs, you know, interstitial lung diseases. Those would put a patient at great risk of receiving immunotherapy, but outside of the health status, it’s also important I think to talk about what your preferences are as a patient as well.  

Because sometimes we will come to you and say, “Here are these multiple different choices and what’s important to you or maybe what you’re worried about or what you’re concerned about are considerations that we want to hear about and understand so that we can talk you through the process and help make some of these decisions.” You know, for example, if you’re receiving chemotherapy plus radiation together for your cancer care that can be a huge time commitment.  

What I mean by that is when patients get radiation in certain circumstances, that can be once a day every day, Monday through Friday for six weeks at a time and sometimes patients have challenges with transportation. Or sometimes they have you know, challenges balancing a job or childcare or other things like that. So, these are all part of the – just part of bringing it all together and putting together a treatment plan that makes sense for what we understand about the lung cancer itself, but also what we understand about you as our patient. 

You know, how can we make changes or make suggestions that would best fit for you and your needs? 

Katherine Banwell:

You’ve brought up some really good points and of course, patients should be involved in these decisions. If a patient is feeling uncomfortable with their care plan, why do you think it’s important for them to speak up? 

Dr. Erin Schenk:

In my experience, when people are worried about certain things or they say they definitely don’t want this therapy it’s because they have seen other loved ones or family members suffer because of that particular type of treatment in the past. And I think bringing up those concerns can be helpful for me as someone’s doctor to talk them through, okay, this is what chemotherapy looks like. This is what we do to help reduce your side effects.  

These are the resources we have to support you through treatment if any of these side effects come about and I think I also impress upon them that receiving treatment is ultimately their decision now. My bias of course, I think we can help patients quite a bit with their treatments, but I think it’s also important to recognize you know, they have autonomy to say no at any point in time. And I think just acknowledging those fears, acknowledging those concerns, putting together a plan you know, before any of those potential worrisome side effects happen can be really powerful to help reduce some of the stress and worry around treatment. 

Katherine Banwell:

Dr. Schenk, 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.  

Katherine Banwell:

You know, one thing patients are often concerned about is the financial aspect, the financial burden that is involved in their treatment care. How do they deal with that? Are there resources available for them? 

Dr. Erin Schenk:

There can be and this definitely can vary based on what treatment you’re being given and where you are, at what institution and what state you’re being treated at since resources are different. But for example, the targeted therapies or the TKIs I made reference to earlier, those can have some significant out-of-pocket costs and most of the,  if not all of the manufacturers of those various TKIs have patient assistance programs that help to reduce the out-of-pocket costs for those specific medicines.  

When I prescribe a TKI for a patient often what’s part of that is a prior authorization to try to understand what’s the out-of-pocket cost for the patient and then kind of get on top of whether or not we need to apply for patient assistance to help pay for the cost of that medication. So, that’s one way that we can help. 

I think, in again, this is specific to my institution and our clinical practice, but we often have – we work very closely with other cancer doctors in the community. So, if traveling to our site is a major burden we can usually have them visit with a oncologist who’s close to them so there’s less travel, there’s less costs in you know gas and staying somewhere. But they still can be connected with us. So, while they can get most of their care under a doctor that’s closer to them, every so often they come back and see me and just talk about how things are going and what you know might be worthwhile to consider down the road.  

And I would also recommend that if there are other costs or concerns you know, kind of above and beyond these things that we’ve touched on, connecting with a social worker through the cancer center can be helpful in dealing with paperwork for disability or retirement or sometimes connecting to resources if there’s a childcare need. 

Or you’re caring for a spouse and you need additional help at home. You know all of the different burdens that are present in life that just get magnified with a cancer diagnosis and you know, we can – there’s usually a really big attempt to try to find a way to help figure out navigating those so that you can get the care you need.  

Katherine Banwell:

Yeah. Before we close, Dr. Schenk, I’d like to get your final thoughts. What would you like to leave the audience with? Are you hopeful? 

Dr. Erin Schenk:

Yes. There are tremendous – there has been tremendous growth and change in the practice in how we treat patients with lung cancer, even just in the past handful of years and it’s made marked improvements in how well people do and for how long they do well. 

And that – you know that trajectory I anticipate continuing based on the clinical trials I’ve been involved with as well as the data I hear about from other clinical trials thinking about new and different medicines that we could use in the diagnosis of lung cancer. As well as applying some of the medicines we already have in different ways and different situations you know, to help better control the cancer or help even increase the cure rate in certain situations.  

So, I think there are a number of reasons to be hopeful and if you visit with your team of doctors and that you don’t get that sense of hope or you don’t hear about all the different ways that they can help you, you know that might be a time to really think about, “Perhaps I need to get a second opinion and hear about some of these developments or some these other ways that potentially I could be treated with my new diagnosis of lung cancer.”   

So, I think there are a lot of reasons to be hopeful. Lung cancer, of course, is still a serious life-changing diagnosis, but there are ways we can help regardless of what the stage is or where you’re at in life. I think there are opportunities for us to still help you. 

Katherine Banwell:

It sounds promising, Dr. Schenk. Thank you so much for taking the time to join us today. 

Dr. Erin Schenk:

Absolutely. Thank you for the invitation.  

Katherine Banwell:

And thank you to all of our partners. To learn more about lung cancer and to access tools to help you become a proactive patient visit powerfulpatients.org.  

I’m Katherine Banwell, thanks for being with us today.   

Why Test Results Matter | Accessing Personalized Non-Small Cell Lung Cancer Treatment Resource Guide

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Empowering Providers to Empower Lung Cancer Patients

Empowering patients is at the heart of efforts at Patient Empowerment Network (PEN), and work toward reducing health disparities is part of conversations among healthcare professionals. Precision medicine and the use of biomarker testing is one area of interest in efforts to eliminate healthcare disparities

With this in mind, PEN has taken on a new initiative, the Empowering Providers to Empower Patients (EPEP) initiative. Starting in lung cancer, the program expands PEN’s reach to healthcare professionals with the goal of improving physician-patient communication; shared decision-making; and the role that lung cancer patients, survivors, care partners, and healthcare professionals each play in the shared decision-making process.

The EPEP initiative includes the following resources:

  • Needs Assessment outlines key factors that enable patient empowerment, attributes of an empowered patient, and advice for healthcare professionals to perform a needs assessment for each patient.
  • EPEP Roundtables with lung cancer experts Dr. Heather Wakelee, Dr. Lyudmila Bazhenova, Dr. Leigh Boehmer and Dr. Jessica Bauman as they discuss a range of topics including ways to improve physician-patient communication, learnings from tumor boards, collaboration between academic and community oncologists, biomarker testing, and addressing barriers to biomarker testing.
  • EPEP Vignettes where lung cancer clinician Dr. Jhanelle Gray from Moffitt Cancer Center shares her experience in biomarker testing, personalized combination therapeutics, and best practices in treating and empowering patients toward more equitable and culturally sensitive care.
  • EPEP Biomarker Testing Resource Guide that covers benefits of biomarker testing, when to test, dos and don’ts of biomarker testing, perspectives from a patient and a clinician, and resources for patients.
  • EPEP Portal utilizes PEN’s robust resource library and that of numerous trusted advocacy partners to create a vetted list of patient education resources. PEN delivers a curated PDF according to your interests and delivers it efficiently to your inbox.
  • Infographics that address the differences between cultural competence versus cultural humility and key steps to work toward practicing cultural humility to help empower your patients in their lung cancer care.

Dr. Jhanelle Gray quote

Key Takeaways to Help Empower Lung Cancer Patients

PEN had the opportunity to interview experts Dr. Jhanelle Gray, Dr. Heather Wakelee, and Dr. Leigh Boehmer to learn about some of their expertise. They shared their perspectives about vital ways that they work with patients to help empower them and to work toward the best personalized care for each patient.

Dr. Boehmer shared the importance of biomarker testing to identify driver mutations, “…more than half of patients who’ve developed lung cancer who have never smoked or have a light smoking history are going to have an actionable driving mutation, and even in people who do have a smoking history, of any ethnic background, they’re still 10 to 20 percent or maybe more as we identify more of these driver mutations, where that’s what’s really the force in the tumor.

And if you find it and you can start someone on the appropriate targeted therapy, usually across multiple trials, the toxicity is less than you would get with chemotherapy or immunotherapy…the probability of response is over half, you know, if someone’s going to have a benefit that that’s going to help them feel better for a period of time in controlling their cancer, it really drastically changes their whole tumor outcome, they’re going to be living longer, feeling better, and ultimately that’s our goal when we’re helping someone with metastatic disease…You have to have the physician aware of the importance of finding the mutation, altering the treatment as necessary, and giving that patient the best possible option for care.

Dr. Gray and Dr. Boehmer also have preferred medical terms when they explain to their patients about biomarker testing. Dr. Gray prefers to steer away from terms that have to do with genomics or genetics and uses the terms “biomarker testing” or “comprehensive biomarker testing” instead. While Dr. Boehmer shares, “I think that’s really important that people always remember to talk about the tumor and not about the mutation in the person, that’s really, really critical.

Physician Best Practices for Biomarker Testing

With her experience in using biomarker testing in planning personalized combination therapeutics, Dr. Gray shares advice for other healthcare providers. “I think for a provider it is going to be very important when a patient is newly diagnosed with non-small cell lung care especially when they have advanced and later stages as this should be a comprehensive test. This should be a certified assay. I think they should also look at turnaround time for this testing, does the assay include a liquid biopsy portion and a tissue biopsy portion? Is there one that you want to run before the other?

Many times what I will do when I meet a patient initially and they have an advanced or metastatic stage non-small cell lung cancer, I’ll send off the liquid biopsy right then and there, the same day in the hope that I can get the test results back within 7 to 10 days. I will also order the tissue testing. Should the liquid biopsy results from the blood specimen come back sooner, then I can cancel the tissue testing if I feel confident enough in the results. This will then preserve tissue for later analyses. It can also preserve tissue should they need to enroll in an innovative clinical trial and expand their therapeutic options.”

HCP Roundtable

Advocacy for Biomarker Testing

Dr. Wakelee speaks to advocacy for biomarker testing, “…many organizations, including IASLC, including ACCC, including NCCN…I mean, you could name any organization that’s involved in cancer care and education, is really focusing on this issue of making sure that every oncologist knows the importance of doing biomarker testing for patients with non-small cell lung cancer, that we are trying to expand that not just to the oncologist, but also to the folks making the diagnosis, so they can be aware as well…The more people who are aware that’s a standard of care in treating lung cancer, the more that’s going to happen, and then continuing to explore those financial barriers, and as more agents are FDA-approved, where that becomes a preferred first sign option, but you only know that if the testing’s happened, that leads to campaigning to make sure that the testing is being covered as well.”

Dr. Boehmer further explains about the logistics of advocating for biomarker testing. “ACCC…recognizes that a lot of community programs don’t have kind of operational best practices for how to incorporate biomarker testing into a patient’s journey…we’re working on creating care pathways which will help multidisciplinary clinician teams integrate discussions of biomarker testing and its impact at various critical time points along a patient’s diagnosis to treatment, to survivorship or end-of-life care…talking about when and how to have meaningful conversations, and then doing it with health-literate, vetted resources and through a lens of equity and shared decision-making, because you look like me, you had success with it. I’m going to do it for my at-risk patients as well, because one, it’s the right thing to do. And two, you taught me how to do it, and three, you told me what success looks like so I can measure myself against you, and that’s a successful model for scalability.”

And Dr. Gray shares advocacy organizations and ways to move toward biomarker testing equity for all patients. “For those again who are having some difficulty with getting biomarker testing for their patients, I would strongly encourage you to find an advocacy organization such as American Lung Association, LUNGevity, GO2 Foundation, there are many many others out there that are very much interested in improving access to patients with non-small cell lung cancer. This is really a critical area of need and that we really have to drive forward with healthcare equity in this setting…And so, I think putting all this together and coming together as a field is where we can move together and with the patients, the providers, and the advocacy organizations I think that we should all feel empowered to move the needle forward for our patients.”

The bottom line is, while oncologists have more tools to treat lung cancer, access and language remains a big factor in biomarker testing. Comprehensive biomarker testing can play a very important role in the personalized treatment for patients with non-small cell lung cancer (NSCLC), but many questions remain. How do we improve clinician-patient conversations in biomarker testing? And how do we remove barriers that can impede an HCP’s ability to treat patients with personalized care? As the lung cancer field continues to experience tremendous growth in precision medicine, we hope healthcare providers can take advantage of these timely resources of the EPEP initiative to work toward equitable and culturally sensitive care for lung cancer patients. 

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

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

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

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

[ACT]IVATION TIP:

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

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Related Resources:

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

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

What Patients Are Candidates for Immunotherapy in Lung Cancer Care

What Patients Are Candidates for Immunotherapy in Lung Cancer Care? 

What Are the Noted Disparities in Lung Cancer Screening and Access

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


Transcript:

Lisa Hatfield:

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

Dr. Lecia Sequist:

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

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

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


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