Tag Archive for: lung cancer
Understanding Oncogene-Driven Lung Cancer: Targeted Therapy Advances and Challenges
Understanding Oncogene-Driven Lung Cancer: Targeted Therapy Advances and Challenges from Patient Empowerment Network on Vimeo.
How do the genetic mutations of EGFR and exon 20 impact lung cancer? Expert Dr. Christina Baik from Fred Hutchinson Cancer Center discusses oncogene-driven lung cancer and how it differs from other lung cancer types.
See More from START HERE Lung Cancer
Related Resources:
Newly Diagnosed Non-Small Cell Lung Cancer | Key Advice for Patients |
Advancing Lung Cancer Treatment: Bridging the Gap in Personalized Care |
Transcript:
Lisa Hatfield:
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.
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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.
See More from START HERE Lung Cancer
Related Resources:
Advancing Lung Cancer Treatment: Bridging the Gap in Personalized Care |
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.
See More from START HERE Lung Cancer
Related Resources:
Newly Diagnosed Non-Small Cell Lung Cancer | Key Advice for Patients |
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.
See More from START HERE Lung Cancer
Related Resources:
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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Dr. Joshua Sabari: Why Is It Important for You to Empower Patients?
Dr. Joshua Sabari: Why Is It Important for You to Empower Patients? from Patient Empowerment Network on Vimeo.
Dr. Joshua Sabari emphasizes the importance of active listening and non-judgmental communication in patient care. Dr. Sabari shares how allowing patients to express themselves fully and addressing all their concerns without interruption fosters trust and empowerment.
See More from Empowering Providers to Empower Patients (EPEP)
Related Resources:
Dr. Samuel Cykert: Why Is It Important for You to Empower Patients? |
Dr. Charlotte Gamble: Why Is It Important for You to Empower Patients? |
Transcript:
Dr. Joshua Sabari:
I think the key thing to empower patients is to listen and not to judge. The second a patient feels that you are cutting them off, you are judging them, they’re going to shut down. Family members shut down. Allowing patients to express themselves, to explain what the questions they have, never leave a visit when your patient has not finished their questions.
And I know that sounds silly, but you’d be surprised how many physicians walk out of office visits when patients still have many questions. That’s our job, that’s our role. You can set up another visit, you can set up a video visit, but make sure that you allow patients to ask their questions in an open manner, in a non-judgmental manner. Even myself, we all have biases. I find myself changing my facial sort of nuances when I think a patient is asking a silly question.
So understanding those biases that we all have and again, being open, sort of being sort of willing to hear and listen to our patients is critical. We’re not the person diagnosed with the lung cancer. It’s the patient there in front of us, the family members. I think being open, being able to listen broadly to patients’ concerns, even if they’re not in line with our concerns, I think is critical. Any point at which you shut down that conversation that may close that patient relationship down, that may close some of those questions that may have been critical for patients.
So, one thing that I always end our visits with is an open, this is an open discussion. This is how you contact me, this is how you contact our team. We are here for you. We are service providers to you. And I think that in itself having this sort of motivational but also open dialogue is going to empower your patients, not only to ask questions and the right questions, but to allow them to tell you when they’re not feeling well, when something is going wrong.
Combating Disparities: Veterans’ Healthcare Access and Quality
Combating Disparities: Veterans’ Healthcare Access and Quality from Patient Empowerment Network on Vimeo.
Where can veterans locate quality healthcare and healthcare access? Expert Dr. Drew Moghanaki from UCLA Health shares information from VA healthcare research studies and proactive advice for patients to access the best care.
[ACT]IVATION TIP
“…make sure that the quality of care isn’t inferior, check in with the VA and see how they might be able to help you, especially if you’ve got lung cancer, because lung cancer care is complicated.”
Download Resource Guide | Descargar guía de recursos
See More from [ACT]IVATED NSCLC Veterans
Related Resources:
Veteran Lung Cancer Risk | Understanding Exposures and Screening Protocols |
Advancements in Lung Cancer Clinical Trials Updates for Veterans |
Transcript:
Lisa Hatfield:
Dr. Moghanaki, are there disparities in the quality of care received by veterans compared with other patient populations? And can you speak to the strategies or programs that have been effective in addressing barriers to healthcare access for veterans?
Dr. Drew Moghanaki:
I love this question because it is one of the most informative things that I’ve learned since becoming a VA physician. Study after study has shown that the quality of care received by veterans is equal or superior to that received in the community. And that’s largely in the VA healthcare system. So again, if you’ve got access to VA healthcare, I think you might be eligible, please look into it. The reports have been fantastic, and that’s because it’s a comprehensive approach to care. But for veterans who are receiving care in the community, it’s a little bit harder, actually it’s a lot harder to track. Because they may not be registered with the VA. And what’s happening, I saw the VA is happening outside the VA.
And I think that largely speaking veterans are just going to get the same kind of level of care as their neighbors might who are civilian. And so where they’re going for their care really affects that. Now, veterans may have more resources, because they can tap into the VA to find out where they may go. VA has incredible tracking systems, a lot of data to help us make better decisions and for them to make better decisions. And so my activation tip here is to make sure that the quality of care isn’t inferior, check in with the VA and see how they might be able to help you, especially if you’ve got lung cancer, because lung cancer care is complicated.
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Combat and Courage | A Veteran’s Lung Cancer Battle
Combat and Courage: A Veteran’s Lung Cancer Battle from Patient Empowerment Network on Vimeo.
Derrick, a resilient veteran and lung cancer survivor graciously opens up about his journey, detailing his experience from initial screening and diagnosis through to treatment. He candidly discusses crucial aspects of lung cancer care for veterans and offers insights drawn from his journey. In Derrick’s own heartfelt words, he emphasizes the importance of empowerment through knowledge, stating, “It’s your body and your life, and you deserve to learn all you can to gain knowledge and confidence about your cancer.”
Download Resource Guide | Descargar guía de recursos
See More from [ACT]IVATED NSCLC Veterans
Related Resources:
Transcript:
Derrick:
Being ACTIVATED in your lung cancer care is a necessity, take it from me.
After my friend who I served with in Iraq was diagnosed with lung cancer, I knew that it was time to get serious about my lung cancer screenings at the Veterans Affairs Hospital. As a lung cancer survivor, I want to share my story as a Black military veteran. Lung cancer is the leading cause of cancer-related death in veterans, and Black veterans are less likely to complete lung cancer screening. However, a recent VA report showed that Black veterans receive equal or superior care through VA hospitals in comparison to Black patients in the general population.
I was already 52 when I received my first lung cancer screening. I only learned later that I should have started receiving screening at age 50 at the VA. It was winter when I went in for my screening. I’d had a nagging cough but didn’t think twice about it. It was a winter season with multiple respiratory viruses circulating at the time. I was shocked when the radiologist informed my doctor that they found a spot on one of my lungs. I felt like I wasn’t old enough to have cancer.
I was really nervous about it beforehand, but I had surgery to remove the tumor from my lung. I felt fortunate to have my friend I served with to talk with about lung cancer, but I know not everyone is this fortunate. I’m sharing my story in the hopes that it will help other veterans. I continue to receive regular scans of my lungs and urge other veterans to start your lung cancer screening on schedule. Ask your doctor or VA administrator if you’re unsure about when you should start. It’s your body and your life, and you deserve to learn all you can to gain knowledge and confidence about your cancer.
There have been a lot of recent advancements in lung cancer diagnosis and treatment. I hope that sharing my perspective will make a difference for other veterans. We served proudly for our country, and we deserve the best lung cancer screening and care as part of the respect that we earned.
Stay [ACT]IVATED with these tips.
- Don’t allow stigmas to keep you from getting the best care, now is the time to get the right care no matter how you got the cancer.
- Ask your care team questions to learn about treatment options and what to expect during and after treatment.
- Ask if a clinical trial may be a potential treatment option for you.
- Stay abreast of lung cancer treatment options and research advancements
Whether it’s combat in war or fighting cancer, no matter who you are, being proactive is everything. Stay [ACT]IVATED by being informed, empowered, and engaged in your care.
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.
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?’”
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.”
[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
- Battling Small Cell Lung Cancer | One Man’s Journey
- Lessons From a Small Cell Lung Cancer Care Partner
- Small Cell Lung Cancer Care | Communication As a Key
- Moving Past Small Cell Lung Cancer Stigma | A Patient Navigator Explains
[ACT]IVATED Expert Interviews
- What Is the Difference Between Limited Stage and Extensive Stage Small Cell Lung Cancer?
- Key Questions to Ask About Extensive Stage Small Cell Lung Cancer
- What Treatment Options Are Available for Small Cell Lung Cancer?
- Small Cell Lung Cancer Care and Outcomes in Underrepresented Communities
- Small Cell Lung Cancer and Immuno-Oncology | What Patients Need to Know
- How Small Cell Lung Cancer Patients Can Best Self-Advocate
- Small Cell Lung Cancer | Hope for Treatment Advancements
- Key Resources for Small Cell Lung Cancer Patients and Families
- Advice for Small Cell Lung Cancer Patients Considering Clinical Trials
[ACT]IVATED Toolkit
- [ACT]IVATED SCLC Shared Decision Making Checklist
- SCLC Specialist Treatment Centers
- Expert SCLC [ACT]IVATION Tips
[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.