Tag Archive for: lung cancer

PODCAST: HCP Roundtable: Improving Clinician-Patient Conversations in Lung Cancer Biomarker Testing

 

Comprehensive biomarker testing can play a very important role in the personalized treatment for patients with non-small cell lung cancer (NSCLC). 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?

Dr. Heather Wakelee, Professor of Medicine and Chief of the Division of Oncology at Stanford University School of Medicine and Dr. Leigh Boehmer, medical director at Association of Community Cancer Centers (ACCC) weigh in on this very important topic.

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Transcript:

Dr. Nicole Rochester:

Welcome to this Empowering Providers to Empower Patients (EPEP) program. I’m Dr. Nicole Rochester, pediatrician and CEO of Your GPS Doc. In this Patient Empowerment Network program, we connect leading lung cancer expert voices to discuss enhancing physician-patient communication and shared decision-making in lung cancer care. Some of the topics we’re going to tackle in today’s conversation include the challenges and solutions for biomarker testing in the community hospital setting and in academic centers.

We’re also going to talk about removing barriers that can impede a healthcare provider’s ability to treat patients with personalized care, improving clinician-patient communication with regard to NSCLC biomarker testing, and we’re also going to explore opportunities to improve access to personalized care for all patients. I am thrilled to be joined by thoracic medical oncologist, Dr. Heather Wakelee, Professor of Medicine and Chief of the Division of Oncology at Stanford University School of Medicine. Dr. Wakelee is also President of the International Association for the Study of Lung Cancer. I am also thrilled to be joined by Dr. Leigh Boehmer, Chief Medical Officer at the Association of Community Cancer Centers. Thank you both for joining us today.

Dr. Leigh Boehmer:  

Thank you.

Dr. Heather Wakelee:

Thank you.

Dr. Nicole Rochester:

So we know that biomarker testing connects the right patient to the right treatment at the right time and potentially to the right clinical trial, but there also are some challenges and interventions are necessary, and that’s going to really frame our conversation today. So I’d like to start with the general landscape, so I’m going to start with you, Dr. Wakelee, what in your opinion and expertise are the existing challenges as it relates to biomarker testing in academic medical centers?

Dr. Heather Wakelee: 

Thanks for that question, Dr. Rochester. I think that the biggest challenge is making sure that every patient with a new diagnosis of advanced stage non-small cell lung cancer gets the testing done and gets the testing results back before they start treatment, right? And that’s the goal. I guess that’s more of the goal than the problem, and the challenges come in each of those different phases. First is making sure that every patient is given access to the testing, and there are barriers if the patient ends up very, very sick in a hospital setting.

There are some regulations that can make that challenging, they might be…their first encounters with the healthcare system are going to potentially be with pulmonologists, general practitioners, interventional radiology. And those people might not be aware of what needs to happen to get the tissue as quickly as possible into testing, they might not be as aware of drawing a blood test, if we’re going to do a liquid biopsy, and so if those things aren’t initiated first, when the patient gets to see the oncologist some days or even a week or two later, we’re already further down the path.

They might be starting to get symptoms, and then when you start the testing, you might have to wait longer than is really acceptable before you have the results that could inform treatment. And as you said, Dr. Rochester, the testing, when we get those molecular results back, that’s going to help us figure out what’s going on in that tumor that might change our treatment options, because there’s a driver mutation where there’s a new drug approved that’s going to be the best efficacious opportunity for that patient. And if they don’t know, they can’t start it, we also run into issues where if the patient’s symptomatic, we can’t wait, and then they get started on chemotherapy and immunotherapy, which might otherwise be a standard approach, immunotherapy is in the body, chemotherapy is in the body, the toxicity is there, and then if you later find out, oh, there was a driver mutation, your hands are a little tied, because the toxicity can be amplified if you combine agents and the immune therapy is in the system for months.

So these are some of the challenges and really the barriers…the biggest barriers from my perspective are not every patient is being tested with comprehensive testing as early as possible, right?

Dr. Nicole Rochester:

Thank you for that, Dr. Wakelee, you’ve really, really outlined how the challenges around access to testing and even the timeliness and the importance of timely testing and the fact that these patients are often kind of making their way through a series of providers before they get to the oncologist. So I appreciate that. Dr. Boehmer, I know you have a lot of experience in the community setting where we know there are a host of additional barriers, so I’d love for you to weigh in on this question, and what challenges are you seeing with biomarker testing in the community setting?

Dr. Leigh Boehmer:

Thanks very much for the question. Yeah, I think the use of precision medicine was initially touted as this opportunity to address care disparities, whether that’s in racial ethnic minorities, differences between academic and community practices, et cetera, by using the technology to try to determine treatment largely based on things like the genetic makeup of a tumor. And, unfortunately, in reality disparities have sadly only continued to grow in the setting of targeted and/or testing related to things like ability to pay and insurance coverage for testing, mistrust in the healthcare system, and historical injustices related to cancer care delivery. And there’s a significant discordance in literature between patients and clinicians understanding of the importance of biomarker testing relative to treatment planning.

So even now in 2023, as more states are passing legislation to expand coverage of comprehensive testing, we’re hearing from member programs of ACCC running up against increasing prior authorization restrictions and requirements, and there are unfortunate ramifications of that, like additional costs to programs or additional costs to patients, for example, in the setting of reflexive testing, there’s also a lot of ongoing data which suggests concerning continued racial disparities in rates of guideline concordant testing. So there’s a lot of opportunities for us to learn, yes, from what we have done in successful models of rollout of testing, but we’re still confronting some pretty major challenges and barriers, and I’ve got to say that’s true whether you’re talking about community programs and practices or academic partners as well.

Dr. Nicole Rochester:

I really appreciate you adding that layer, Dr. Boehmer. As someone who does a lot of work in health equity, I was just sharing prior to us recording that these disparities are pervasive, and now we’re learning it’s in lung cancer, and for all of the reasons that you stated, and it’s interesting that when we really start to look at our progress, and when we look at it by comparing different racial and ethnic groups, we find, as you stated, that sometimes the disparities actually widen.

And so it’s not that these aren’t great practices and precision medicine is a wonderful thing, but to your point, if we’re not ensuring that everyone has access to this new technology, then in fact, not only do we continue to see disparities, but sometimes that we inadvertently worsen them. So I appreciate you sharing that. Both of you have been on the ground floor of research in this area with regard to biomarker testing and availability and disparities. So I’d love for you to talk a little bit about the data and what does the data tell us with regard to biomarker testing? It’s important, some of the challenges that you both just stated, and so I’ll start with you this time, Dr. Boehmer.

Dr. Leigh Boehmer:

[chuckle] Thanks, I appreciate it. I’ve been privileged to work with both providers and patients’ caregivers, taking a closer look at some of the barriers and then practical solutions that might be utilized to address some of these concerns around testing. So back in 2021, ACCC used the mixed methods approach to try to understand the motivators of patients and providers, their practice patterns, their attitudes, the educational needs of patients and providers related to biomarker testing and beyond. And you know what’s really interesting, in almost 100 total provider respondents, less than half of community clinicians who responded said that they used biomarker testing to guide patient discussions.

And that was compared to nearly three-quarters of all responding academic clinicians, and it really made us start to think about…so, you know, the impetus for testing in the context of testing. In this particular research, to my earlier comments, we were actually targeting patients with non-small cell lung cancer who were uninsured, underinsured and/or covered by Medicaid. So dual eligible beneficiaries, and it was really interesting because we looked at why and how conversations were happening about biomarker testing between providers and patients, and really identified some tremendous opportunities for education around clinicians’ needs to become more familiar with guideline concordant testing and to have more practical applications of guideline concordant testing, so things like case-based examples, so then ultimately they could have optimal conversations with patients and help coordinate multidisciplinary care.

There’s also data which would suggest a disconnect between ordering testing after initial staging versus ordering testing at the time of initial biopsy. And, Dr. Wakelee, you said something that really resonated with me because if we can identify patients who need to be tested, if we can have access to testing, we still have a disconnect, and this is largely seen in community programs today where clinicians may be waiting 10 days, 14 days, even longer to receive results of testing. And you’re right, we have patients who need treatment initiated sooner than later, and you miss these opportunities because of delays, prior authorizations and a lot of other things, So the data certainly quantitatively, qualitatively is speaking to this hierarchy of problems and there’s definitely some mismatches between patient and provider perceptions of why testing happens, what it’s used for, and timing of the testing and results sharing.

Dr. Nicole Rochester: 

That is fascinating, and we’re definitely going to get deeper into that, this whole patient-provider interaction, so I really appreciate you introducing that and thank you for all the research that your organization has done in this area. So, Dr. Wakelee, you’re on the academic side of things, and you also have been deeply involved in research in this area, so what would you like to offer from your perspective in terms of the data around biomarker testing?

Dr. Heather Wakelee:

Well, thanks, and, Dr. Boehmer, you have a very comprehensive answer there, I think that the differences between academic and community sometimes are broad and sometimes aren’t that big at all, and I do think we face a lot of the same challenges. It’s just…it’s making sure that when a physician is meeting with a patient, and let’s say it’s with the oncologist, that the oncologist is really mindful that any patient with non-small cell lung cancer could have a tumor with a driver mutation. I think it’s easy to stereotype and think that only certain patients are going to, and therefore we shouldn’t be testing everybody. And that gets dangerous. I think it also is a matter of where you’re in practice, and if you’re in a practice where the prevalence of the driver mutations and the tumors is low, you might just say, “Oh, I’m never going to see it,” and you stop testing, and that’s also very dangerous because we have seen in multiple trials, as we get back to that research question, that if we can identify a driver mutation…

And we know that 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.

Usually 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. And if you don’t know that the tumor has a driver mutation, you’re never going to give them that appropriate treatment, and I think that is the real challenge that we face, and there are multiple different angles to that, right? 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.

But it also is making sure that the patients are open about this, because I think there’s still a lot of misperceptions about when we talk about driver mutations and the word mutation, making sure that people understand we’re talking about the cancer and not about the person. And in a short conversation that can sometimes be missed, and then people are afraid of getting tested, afraid of what that might mean for them or their family, and so the communication around, we’re going to test your tumor because your tumor might have a mutation that’s going to allow us to give different care. 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.

And also to avoid that stereotyping about who do we test and who do we not test, pretty much anyone with a non-squamous, non-small cell lung cancer, their tumor needs to be tested, and many people who have a squamous cytology that’s also reasonable. So that’s the people aspect of it, the insurance barriers and the interpretation of the results, those are still there as well. And even if you have perfect communication and the patient understands and you get the testing done immediately, you still have to deal with, is it going to get covered or not? And the results come back, is it going to be interpretable or not? Because that can sometimes be tricky also. 

Dr. Nicole Rochester:

Wow. I would say you two have really uncovered a lot of barriers, and it’s enough to make someone feel a little bit discouraged, I would say, however, because of the work that both of you are doing and so many others, we know that there indeed is hope. And so I’d love to shift a little bit. We’ve talked a lot about the barriers, which are many, what’s on the horizon or what positive trends have you all seen, and specifically what are the opportunities, what are some things that are either happening or that are being explored with regard to removing some of these barriers or all of the barriers that each of you have talked about? I’ll start with you, Dr. Wakelee, give us some hope.

Dr. Heather Wakelee:

All right. Great. Well, I think there is reason to have hope. Absolutely. There always is reason to have hope. And so many organizations, including ISLC, including ACCC, including NCC…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. Patient advocacy groups are very engaged in this as well, making sure that when someone is newly diagnosed, if they reach out to an advocacy group, one of the messages they hear is, have you asked about testing what’s happening with the tumor testing?

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, you know, when you can argue, this patient isn’t getting the FDA-approved best care for their cancer because that testing wasn’t done, that’s a really powerful statement. And I think that’s what we’re seeing change happening.

Dr. Nicole Rochester:

That is incredible, thank you. Thank you so much. I can smile again.

[laughter]

Dr. Nicole Rochester:

What about you, Dr. Boehmer? I know you’re getting…your organization is doing a lot of work in this area, so tell us about some of the advances, some of the improvements and tackling some of these barriers that both of you have elucidated today.

Dr. Leigh Boehmer:

So, Dr. Wakelee, thank you for all of those hope-inducing concepts and methodologies, because I honestly believe that so many of us learn best today by seeing someone like me doing X, Y, Z, so I know I can do it as well. So I think it’s about documentation of justification of testing for prior authorization claims. I think it’s about working together with the multidisciplinary team, pharmacist, advanced practitioners, oncology-certified nurses to help manage that back and forth with testing and external pathology and laboratory companies, to make sure that results show up in the right spot in the electronic health record so that they can be interpreted, shared with patients, communicated and contextualized in real time. I think it’s about greater incorporation as we’ve seen across so many of our programs of the tenets of shared clinical decision-making, and how to have a meaningful conversation with a patient and/or their caregivers about testing and its role on treatment and drug selection, and outcomes, and progression-free survival. And there are a lot of programs out there that are doing bits of this or different points along that continuum.

ACCC, for example, building on the research I shared before, 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, and so for lung, and also, for example, for breast cancer, 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. And those are just examples of us not being overly duplicative, but putting all the resources in one place, talking about timing, 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. 

Dr. Nicole Rochester:

That is wonderful. You both have nicely taken us into the next part of the conversation, and, Dr. Boehmer, you just talked about shared decision-making, and as someone who works very closely with patient advocates and health advocates, it’s so important that any effort to improve care with regard to any disease or illness, it has to involve the patient and their family, so I really appreciate you all sharing that. So, with that in mind, and as we begin to think about how the patient-provider relationship and the patient-provider communication plays a role in addressing some of these barriers that we’ve been talking about and then making sure that patients are appropriately being tested and treated, I’d love to hear from you all regarding the role of the patient-provider partnership as it relates to biomarker testing. So, let’s see, I’ll start with you, Dr. Boehmer.

Dr. Leigh Boehmer:

So I really, really think this question is critical, and I’m going to bias by saying, an exciting new position on the multidisciplinary cancer care team that we are learning about it, some of our member programs, is that of a precision medicine steward or navigator. So if you’re at all familiar with the idea of a patient navigation service or the services provided by financial advocates or financial navigators, this is really identifying that it is getting so complex in the world of targeted testing, targeted treatments today, that it literally requires in some places and settings an FTE or multiple to try to navigate testing, pathology, external labs, medical oncology, pharmacy services, nursing administration, and then, of course, patients and caregivers, and communication and context building, working with patient advocacy groups who are out there publishing great resources on testing and what they mean and targeted treatments. But trying to put all of that together, I will admit as a community clinician, as you probably see 15, 18, 20 patients a day, sometimes with as many different discrete types of cancers, it gets overwhelming.

And so, having a support person on staff who can help you manage some of that information and the patient-provider conversations, ACCC is very, very much about recognizing multidisciplinary teams of providers, so it’s critical to have navigation, to have social work providing distress screening and psychosocial support, to have pharmacists talking about targeted therapies and how they match with, to Dr. Wakelee’s points, mutations and fusions and rearrangements and everything we’re testing for with our big panels of next-generation sequencing, right? So I really want to encourage us all to utilize as patients and as team members, everybody else on the team, which is also to say patients and caregivers, are team members too, right? They have rights and responsibilities as members of their own team. And I will end with this, I say all of this, and I feel justified in saying all of this because we’ve done research at ACCC, and without that critical infrastructure, there’s potentially a real disconnect. So, for example, we asked patients with lung cancer what resources would be most impactful for you as you embark on your treatment journey, and they said things to us like psychosocial support and financial assistance.

When we asked the provider respondents a similar question in their own survey, the number one thing they identified, they thought patients needed were educational handouts or websites to go seek information about their diagnosis. Now that’s not to shake a finger at anybody or to say that you were right or you were wrong, that’s just to say, we need people who can approach this whole patient-provider construct from different perspectives, because Leigh is going to ask different questions than Heather is going to ask, than Nicole is going to ask, and that’s the beauty of multidisciplinary care coordination. We do need to come at it from different angles, different perspectives, and always make sure we’re remaining open and inclusive and asking what patients need and want right now. Because we don’t always have the answers, we have to remember that. We’re human, we have biases, it’s always better to ask and provide and then ask again.

Dr. Nicole Rochester:

You are really speaking my language, Dr. Boehmer.

[laughter]

Dr. Nicole Rochester:

And I see, Dr. Wakelee, both of us are shaking our heads the entire time that you’ve been speaking and just around this idea of multidisciplinary teams that include the patient and the family, and ideally at the center. Dr. Wakelee, do you have anything to add?

Dr. Heather Wakelee:

Hard to add. That was very impressive, Dr. Boehmer, [laughter] and highlighting that just…we talk about multidisciplinary sometimes, the first version, some people think of it’s just it’s a team of a few different types of doctors. And obviously that’s not at all what we’re talking about, this is to provide the best possible care for a patient dealing with cancer, that physician-to-patient interaction is critical, but the patient to physicians to family is critical. And then you’ve got to also think about all the psycho-social needs and whether that’s going to be with a social worker or… We have a lot of people working in oncology who are psychologists and psychiatrists particularly focused in that because the coping with the disease is such a big part of it. And it’s also the pharmacy teams and the nursing teams. It is…multidisciplinary is many, many different levels of circles, but at the core, it’s the patient and family and the primary physician, that’s kind of the way I think at it, but I’m an oncologist, so perhaps I’m a little biased in my viewpoint there.

But it’s that communication right there where you sort of have all of the information that the physician’s holding, that’s coming from all of the different treatment disciplines, and then you’ve got all the information that the patient’s holding, that’s coming from their understanding of them and all of their other aspects of their life, and that’s sort of that interaction at the core, and making sure that both sides are seeing each other and seeing all of the other layers of that, so that you could make sure that at each point the recommendations and what the patient is actually doing, everyone’s coming from a point of understanding. I think, to me, that’s the most critical piece. And you don’t have that understanding if you don’t also have all the information you need about the tumor, and you’re not making that right decision if you don’t have all the information you need about all the aspects of who that patient is as a person, and that goes into their decisions as well, and that’s to me, that’s what we’re aiming for, right? 

Dr. Nicole Rochester:

Absolutely, you all have done such an incredible job really highlighting the importance of involving the patient and family, involving this multidisciplinary team, which as you said, Dr. Wakelee, it’s not just a bunch of different types of doctors. So before we conclude, I just want to talk a little bit about that communication, because most of you have shared how important that communication is, and we know that there are challenges, inside and outside of cancer with regard to communicating with patients, and certainly as a physician that some of the complexity of the topics that you all have discussed I would admit is even a lot for me, and so we can imagine that for someone without any medical training, this is very difficult, these topics of biomarker testing and genetics and mutations and precision medicine. So I’d love for you, Dr. Wakelee, to start by just sharing some best practices, things you’ve learned over the years with how can providers who are watching this program really engage in effective, thoughtful conversations with patients and their family members about biomarker testing?

Dr. Heather Wakelee:  

So that’s a great, great question. And really, the communication is to me, like I said, the core there, when I’m talking about biomarker testing with the patient, I usually try to frame it from the context of what makes the cancer different than the rest of you. And what we’re trying to figure out is what is it about the cancer that makes it different than the rest of you, so we can then target what’s different, and hopefully with that, being able to control the cancer without harming the rest of you. So that’s sort of one framework of it, and depending on the patient’s level of understanding, and then sort of layer in different levels of…for people who are understanding DNA and mutations, then you can start talking about those specifics, and for folks who don’t necessarily want to think about it that way, or haven’t had the education about it that way, then just starting from that framework. And I think about it this way too, is how is the cancer different than the rest of the person? And what can we do to therefore attack the cancer differently than we would the rest of the person?

And then from there, if there is a mutation or a translocation or something else that we found, can use the name of that gene and say, “This is different in the cancer than in the rest of you, and this is a targeted therapy that’s going to go after that, and it’s going to work for a period of time, but the cancer is always evolving.” And so we kind of plant that seed from the beginning also, that it’s not curing, that the cancer continues to evolve, and eventually it’s going to change in a way where that doesn’t work, but for right now, that’s the best treatment. So that’s how I’m going about with that communication with people on it. And then, again, I practice in Silicon Valley, so a lot of people will come in with books, practically, of all the research that they’ve done, and so that’s a very different conversation than someone who comes in and says, “Whatever you think is best, doc.” And even when I hear that, which I don’t happen to hear too often anymore, I really feel it’s critical that the patient is still understanding, why are we picking this treatment for your particular cancer, and what are our expectations from it?

Dr. Nicole Rochester:

I really appreciate the plain language, and I think that’s important, and also your acknowledgment that patients come to us with different levels of knowledge and expertise, and so really it’s about meeting them where they are, so I really appreciate that. And, Dr. Boehmer, we’re going to allow you to wrap up on this topic, I know that the Association of Community Cancer Centers has done research about what patients want to hear and some of the biases around providers, maybe thinking that patients don’t want or don’t need some of this information, that it may be too confusing for them, so I’d love for you to share some knowledge around your experience in this area and some best practices around communicating with patients.

Dr. Leigh Boehmer:

Thanks very much, I appreciate the opportunity, I’ll try and keep it targeted. I think number one, Dr. Wakelee, you’re correct. We have visual learners, auditory learners, we have people that want more direction and less direction, so simply starting by asking, how do you prefer to learn? It’s a wonderful place to start. It could be drawing pictures, it could be giving them that academic print out of literature published in a cutting-edge journal. But we need to know how patients learn and respect the fact that we’re all individuals and we as providers talking to patients may need to alter our approach based on different patients’ characteristics. I also think our research has shown that consistent terminology must, must be utilized, biomarker testing, molecular profiling, next-generation sequencing, mutation analysis, whatever it is, that you have decided to make your consistent terminology, please in your teams, then in the next level of teams, then in your health system, and then with your colleagues, talk about what it is, why it is, does it go against another group or is it in agreement with A, B, C groups. Because we have to, as a collective, really agree on and start utilizing consistent terminology, because until we do, we’re just continuing to stir the pot and cause confusion amongst patients, caregivers, other patient advocacy organizations and ourselves.

The other thing I’ll say, at ACCC, we’ve got a lot of resources aggregated in one place about shared decision-making, what it is, how to do it, how to assess yourself, health literacy, how do you evaluate your program to make sure you’re asking the right questions before you ever, ever have a conversation with a patient about biomarker testing or different targeted treatments for patients with non-small cell lung cancer? There’s little things that you can do today that’s so important. Little things you can do today that will make a positive influence on your patients’ outcomes and experience just by asking, addressing your own biases, being inclusive with your language and using consistent terminology. All of that is on our website and it’s truly incremental. Go easy on yourself, we’re all learning here, and acknowledging your bias and trying to be more inclusive is very, very worthwhile, and it’s okay if it’s small steps every single day made.

Dr. Nicole Rochester:

A wonderful way to end this program. I have learned a lot as always, I’m sure that those of you watching have as well. We have talked about the challenges around biomarker testing on the clinician side, on the patient and family side, we’ve explored some amazing solutions to some of these challenges and barriers, and I just want to really thank both of you for being here, and lastly, give you an opportunity if there’s something that you really feel like we should have talked about that we didn’t get to. Any closing thoughts or anything that you want to leave the audience with. And I’ll start with you, Dr. Wakelee.

Dr. Heather Wakelee:

Thanks. I think just to make sure everyone is always thinking, if you’ve got a patient and they’re coming to see you and they have lung cancer, that you’ve done the biomarker testing, that the patient understands about it, that you’ve had an opportunity to include that as part of the conversation whenever you’re talking about treatment.

Dr. Nicole Rochester:

Thank you, Dr. Boehmer.

Dr. Leigh Boehmer:  

The only thing I would add is that if you’re thinking about creating resources, if you’re trying to target at-risk populations or communities in your area, please always, always remember to invite those individuals as you are talking, creating and disseminating. Because we don’t have all the answers, and that’s okay. I give you permission, but please invite people in and let them be a part of the discussion and the proposed solutions.

Dr. Nicole Rochester:

Wonderful. Well, thank you again to both of you, Dr. Wakelee, Dr. Boehmer, this has been an amazing conversation. And thank you again for tuning in to this Empowering Providers to Empower Patients program.

Dr. Leigh Boehmer:

Thank you.

Dr. Leigh Boehmer: Why Is It Important for You to Empower Patients?

Dr. Leigh Boehmer: Why Is It Important for You to Empower Patients? from Patient Empowerment Network on Vimeo.

How can healthcare providers help with patient empowerment? Expert Dr. Leigh Boehmer from Association of Community Cancer Centers (ACCC) shares her perspective about patient empowerment and methods they have used at ACCC to help empower patients.

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Transcript:

Dr. Leigh Boehmer:

At ACCC, we’ve made a commitment to including patients and patient advocates in all of our ongoing educational initiatives, we no longer want to create or disseminate resources that weren’t first designed and vetted within communities for which they’re being built, and we also believe in rooting all of our work in health equity. Because all people deserve to be offered safe and effective cancer care, and I think…I feel so passionate about patient empowerment because I identify as a cancer survivor myself, I have my own patient story, and, unfortunately, cancer has touched the lives of so many across the globe, and so I advocate for recognizing patients and caregivers as vital components of any care delivery team, and I  think it’s so critical because to be honest, we’re always going to be stronger together.

Dr. Heather Wakelee: Why Is It Important for You to Empower Lung Cancer Patients?

Dr. Heather Wakelee: Why Is It Important for You to Empower Lung Cancer Patients? from Patient Empowerment Network on Vimeo.

How can healthcare providers continue improving patient-provider communication? Expert Dr. Heather Wakelee shares methods she has used to help empower her patients and to improve communication with her patients. 

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Dr. Ana Maria Lopez Why Is It Important for You to Empower Patients

Dr. Ana Maria Lopez Why Is It Important for You to Empower Patients

Transcript:

Dr. Heather Wakelee: 

So, to me empowering patients is about having a two-way communication with patients at all times, and never coming in and telling them that we’re doing something and walking out of the room, but coming in and asking, first, how they’re doing, questions they have, and then going through, these are the things I’m thinking, and why I’m thinking about them and what I’m suggesting. And then turning it back to them so that they can respond and ask additional questions.

So that to me, it’s that two-way communication is how I empower patients, and it’s absolutely critical, because if you have someone on a cancer journey and they don’t know where they are, why they’re there, or where they’re going, then they’re feeling lost, and it’s really important for people to understand the journey as they’re going on it, at least the parts that we can’t understand, there’s plenty that you can’t, it’s still a scary journey, but what we can do as care providers is to give patients the power of understanding and that free communication, that’s how I look at it.

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

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

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

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

[ACT]IVATION TIP:

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

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What 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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Expert Advice for Lung Cancer Patients Considering a Clinical Trial

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

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

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

[ACT]IVATION TIP:

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

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Do Lung Cancer Screening Guidelines Differ for Certain Populations


Transcript:

Lisa Hatfield:

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

Dr. Lecia Sequist:

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

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

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


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How Should Newly Diagnosed Lung Cancer Patients Deal With Disease Stigma?

How Should Newly Diagnosed Lung Cancer Patients Deal with Disease Stigma? from Patient Empowerment Network on Vimeo.

How can lung cancer patients and advocates fight lung cancer stigma? Dr. Lecia Sequist shares her perspective about why a stigma has developed her advice for all people to start turning the tide against lung cancer stigma.

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

[ACT]IVATION TIP:

“…spread the word about lung cancer. Whether or not you have lung cancer, maybe someone you know has lung cancer, but just tell people, lung cancer can happen to everyone, anyone. Lung cancer can happen if you smoked, if you never smoked, anything in between. Anyone who has lungs can get lung cancer.”

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Expert Advice for Lung Cancer Patients Considering a Clinical Trial


Transcript:

Lisa Hatfield: 

Dr. Sequist, how should a newly diagnosed patient facing lung cancer respond in situations where they encounter lung cancer stigma? There’s a stigma that surrounds lung cancer sometimes. How would you recommend that they deal with that?

Dr. Lecia Sequist:

There’s this…in my opinion, there’s a stigma that surrounds lung cancer all the time, and it’s unfair. And I think if we look back, there were a lot of public awareness campaigns on TV and in magazines in the 1980s about quitting smoking, and you probably remember these ads, it showed people breaking cigarettes in half. And I think the intention of those was good, that they were trying to explain to the public that smoking could be harmful for your health, but it was just much too simplistic, because quitting smoking is really hard. It’s an addictive substance.

Nicotine is addictive, and it’s very…the way to treat addiction is usually not to just say, “Don’t do that, don’t do that.” There’s medically more sophisticated ways to treat addiction. But I think the flip side of that awareness campaign that smoking can be harmful for your health is it really ingrained in our culture this very deep-seated thought that if you choose to smoke, you’ve made a bad choice. And that’s just…it’s so problematic because most people didn’t choose to smoke, it was basically provided to them in these very complex and high-level targeted campaigns from the tobacco companies. And most people would like to choose to quit smoking if they are smokers, and they can’t because it’s an addiction, and it’s very challenging to quit. So basically, I think this is all to say the stigma around lung cancer comes from this misguided, false impression that a lot of Americans hold that lung cancer is because people made a bad choice to smoke or to not quit smoking.

And so it all comes together to make people think that those who get diagnosed with lung cancer did something wrong to deserve it, and that’s just not true. Nobody deserves to get cancer of any type. And lung cancer patients do suffer this unique blame that is not necessarily placed on other patients with other types of cancer, it’s really very unique to lung cancer. And it can be harmful for patients in many ways, it can be harmful in interpersonal interactions, but it also leads to policies and the whole way that our care system is set up that disadvantage lung cancer patients compared to other types of cancer patients. So there are a lot of people working hard on this problem, but something that you can do…

I guess my activation tip for this question would be to just spread the word about lung cancer. Whether or not you have lung cancer, maybe someone you know has lung cancer, but just tell people, lung cancer can happen to everyone, anyone. Lung cancer can happen if you smoked, if you never smoked, anything in between. Anyone who has lungs can get lung cancer. And we have to take the stigma away from this disease. Nobody deserves to have lung cancer. It’s not something that people cause to happen to themselves, and they certainly shouldn’t be blamed if they are finding themselves in a position where they have lung cancer. So just spreading the word, lung cancer can happen to anyone, anyone with lungs can get lung cancer, I think can help start to change the perceptions. 


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

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

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

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

[ACT]IVATION TIP:

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

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Expert Advice for Creating an Optimized Lung Cancer Treatment Plan

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

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


Transcript:

Lisa Hatfield:

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

Dr. Lecia Sequist:

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

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


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

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

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

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

[ACT]IVATION TIP:

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

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

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How Should Newly Diagnosed Lung Cancer Patients Deal with Disease Stigma


Transcript:

Lisa Hatfield:

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

Dr. Lecia Sequist:

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

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


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Expert Advice for Creating an Optimized Lung Cancer Treatment Plan

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

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

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

[ACT]IVATION TIP:

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

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


Transcript:

Lisa Hatfield: 

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

Dr. Lecia Sequist:

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

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

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

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


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

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

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

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

[ACT]IVATION TIP:

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

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


Transcript:

Lisa Hatfield:

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

Dr. Lecia Sequist:

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

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

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


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What Patients Are Candidates for Immunotherapy in Lung Cancer Care?

What Patients Are Candidates for Immunotherapy in Lung Cancer Care? from Patient Empowerment Network on Vimeo.

What is the role for immunotherapy in lung cancer care? Dr. Lecia Sequist explains how immunotherapy works against lung cancer and other medical conditions that may increase risk for immunotherapy as treatment for certain patients.

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

[ACT]IVATION TIP:

“…talk to your doctor about whether immune therapy is a possibility for treating your cancer. And if not, just ask why not. There are lots of good reasons why it may not be recommended, but just make sure that it’s been thought about and about whether it should be part of your treatment plan or not.”

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

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Can Vaccines Play a Role in Preventing or Helping to Treat Lung Cancer

How Should Newly Diagnosed Lung Cancer Patients Deal with Disease Stigma

How Should Newly Diagnosed Lung Cancer Patients Deal with Disease Stigma


Transcript:

Lisa Hatfield:

Dr. Sequist, is there a role for immunotherapy in lung cancer especially for newly diagnosed patients, or is that done more after a recurrence of lung cancer?

Dr. Lecia Sequist:

Yeah. There’s a big role for immunotherapy in lung cancer. Immunotherapy is a broad term. A lot of different drugs could fall into the category of being immune types of drugs. But in general, what this whole category of treatments is trying to do is to teach your body’s own immune system how to recognize the cancer and then be able to attack it. A lot of times when cancer develops, one of the ways that it’s been able to even go from one cell to a tumor that is visible or causing problems is that it’s been able to evade the immune system or sort of hide from your body’s immune system and pretend like it’s not there. And these newer immune treatments, they work in different ways. But essentially what they have in common is that they can rip off the camouflage, they can kind of expose the cancer to the immune system so that the immune system sees the cancer and starts attacking it like it should.

So there are lots of different ways that we can try to stimulate the immune system. And these drugs have gone in a short period of time from being something that was experimental and only given after everything else had failed, to now being given as soon as patients are diagnosed with lung cancer or even after a surgery. If a small tumor is taken out, sometimes we give immune therapy after a surgery or we give immunotherapy before a surgery in anticipation of it being taken out, trying to make the surgery easier or the results of the surgery even better. So immunotherapy has really changed a whole landscape of how lung cancer is treated, but immune therapy is not for everybody. So I know sometimes you might be reading on the Internet about a patient who had a really wonderful outcome with immunotherapy and you think, of course you think, well I want that drug, I want that outcome.

But there are some types of lung cancer that it doesn’t work well for. And there are some patients who might have a medical condition where the immune therapy could actually be dangerous for them. So there are a number of exceptions and not everybody should receive immune therapy. It depends on the type of cancer you have, the markers on the cancer, but also your medical background. And if you’ve had some medical conditions where the immune system is really active. Examples might be rheumatoid arthritis or Crohn’s disease, psoriasis. These are some of the common ones. But there’s a lot of different diseases that you might have had before you even had cancer where the immune treatment might be very risky for you or dangerous. So my activation tip is to talk to your doctor about whether immune therapy is a possibility for treating your cancer. And if not, just ask why not. There are lots of good reasons why it may not be recommended, but just make sure that it’s been thought about and about whether it should be part of your treatment plan or not. 


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Can Vaccines Play a Role in Preventing or Helping to Treat Lung Cancer?

Can Vaccines Play a Role in Preventing or Helping to Treat Lung Cancer? from Patient Empowerment Network on Vimeo.

What’s the latest in lung cancer research and treatment updates? Expert Dr. Lecia Sequist shares information about emerging research currently under study, new treatments that have shown success, and her perspective about second opinions for patient 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:

“…ask your doctor if they think a second opinion could be helpful.”

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


Transcript:

Lisa Hatfield.

Dr. Sequist, fortunately, the lung cancer arsenal keeps expanding. What promising treatments do you see on the horizon or that are newly available to lung cancer patients?

Dr. Lecia Sequist:

Yeah. The field is changing so fast, it almost makes your head spin. And I think it’s wonderful that there are so many options. It’s actually been a challenge for the doctors to keep on top of the latest treatments, because they’ve been coming out so fast, especially over the last five years. 

And some of the things that I’m personally excited about in lung cancer is that there may soon be an opportunity to think about vaccines that could help prevent or could help treat lung cancers. That’s something that scientists are working on that aren’t available, but it does look like it’s realistic, that it could happen. Some of the technologies that helped develop, for example, the COVID vaccine in such a short period of time might be available to personalize treatment against an individual’s tumor. So my vaccine, if I got cancer, could be different than your vaccine if you got cancer, because they’re kind of personalized.

There’s also a new type of treatment called antibody drug conjugates, which are a smarter way of delivering chemotherapy. We’ve always just given chemotherapy to the whole body, usually through a vein, through an intravenous in the arm, and it drips in and it circulates around with the bloodstream. And the good thing about that is that it can go everywhere. So if there’s a cancer cell that’s hiding somewhere too small to be seen on the scan, the chemotherapy can get there. But it does, there’s a lot of collateral damage from toxicities from delivering chemo where there is no cancer. And with these antibody drug conjugates, the idea is that there’s an antibody in the front that’s honing into some kind of target on the cancer cell. And it still goes in through the IV, but when it reaches a cancer cell and attaches, then the backend sort of drops a bomb, which is a chemotherapy on that area.

So instead of the chemo being given to the whole body, every time the front end of this thing hits cancer cells, it engages and that triggers the backend, which is the chemotherapy kind of bomb to be dropped. So there are a lot of these types of drugs where it’s more like targeted delivery of chemo. Some of them have already been approved for cancers like breast cancer, but we don’t have an approved antibody drug conjugate in lung cancer yet. But there are a couple that are moving towards potential FDA approval. So I think given how complicated the new treatments are, my activation tip for patients would be to ask your doctor if they think a second opinion could be helpful. And I think a lot of patients feel that that might be rude or their doctor might not react in a positive way to them saying, do you think I should get a second opinion?

But as a physician, I can tell you that it’s not taken that way by most doctors. And in fact, a lot of oncologists will even suggest to their patients, you know, “Hey, this is a complicated area. I would love to get input from my colleague. I’m going to  send you to a city nearby for a second opinion.” We all rely on our colleagues a lot, and not everybody can know everything about every cancer, especially with how quickly things are changing. So second opinions are not a sign that you don’t trust your doctor or you don’t like your doctor. It’s just a sign that you really want more input. The more minds, the more brains that are thinking about your cancer, the better. And don’t be afraid to ask your doctor if they think a second opinion could be helpful for your case. 


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

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

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

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

[ACT]IVATION TIP:

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

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What Are the Noted Disparities in Lung Cancer Screening and Access


Transcript:

Lisa Hatfield:

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

Dr. Lecia Sequist:

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

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

In the past, it’s mainly been, you know, determined by whether or not you ever smoke cigarettes. And it’s true that cigarette smoking is one risk factor for lung cancer, but it’s not the only one. And we don’t fully understand what all the risk factors might be, but we know that there are people who have smoked a lot in their life and never get lung cancer. And on the flip side, we know that there’s people who have never smoked or who maybe quit 30, 40 years ago and will still get lung cancer. And how do we know who’s at risk? That’s what we tried to solve with our research that I worked on with my colleagues at Mass General Hospital where I work and also at MIT, Massachusetts Institute of Technology, which is just down the road from us. And so we brought together our medical knowledge and our computer knowledge and tried to come up with a way to predict for any given individual person, are they at risk for lung cancer.

By looking at their lungs and not looking at the lungs the way a human radiologist sort of says, okay, there’s the right lung, there’s the left lung, and they’re looking for things that already exist like a tumor or a mass. The computer looks at a different type of pattern that human eyes and brains can’t really recognize and has learned the pattern, because we trained the computer with thousands and tens of thousands of scans where we knew this person went on to develop cancer and this one didn’t. And the computer learned the pattern of risk. And so using an X-ray or a CAT scan to predict future risk is something a little different. In medicine, we usually use an X-ray to say, okay, what’s happening now? Why does this patient have a fever? Why is this patient bleeding? And using an X-ray or a CAT scan in this case to predict the future is kind of a new thought for doctors. But we think that it could be a really valuable tool to help us understand who’s at risk for many different kinds of diseases. We happen to look at lung cancer, but I think you could use this idea for other diseases too.

Lisa Hatfield:

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

Dr. Lecia Sequist:

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

Lisa Hatfield:

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


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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? from Patient Empowerment Network on Vimeo.

What do lung cancer patients need to know about treatment options? Expert Dr. Lecia Sequist shares an overview of treatment classes for non-small cell lung cancer (NSCLC), advice for patients, and how each treatment class works against cancer.

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

[ACT]IVATION TIP:

“…ask your doctor if immune therapy, targeted therapy, or chemotherapy are appropriate for your cancer. And if not, why not? There’s probably a good reason if they’re not recommending one of those things. But just make sure that you understand why you’re getting the treatment recommendation that you are.”

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Confusion to Clarity: Expert Explains the Importance of NSCLC Mutations

Confusion to Clarity: Expert Explains the Importance of NSCLC Mutations

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

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

Expert Advice for Lung Cancer Patients Considering a Clinical Trial

Expert Advice for Lung Cancer Patients Considering a Clinical Trial


Transcript:

Lisa Hatfield:

Okay. Dr. Sequist, what are the different treatment options for lung cancer?

Dr. Lecia Sequist: 

That’s a really important question. And there are so many treatment options. But I think a way that I often explain it to my patients is sort of thinking in broad strokes and categories. So one way to think of it is there’s three main types of doctors, types of specialists that treat lung cancer. And they each have their own type of treatment that they offer. So there are medical oncologists like myself, who give drugs or different medical treatments. Some of them come in pills, some of them come in intravenous infusions, but they’re all medications. Then there are radiation oncologists who give radiation, which is strong, but invisible X-ray beams that are focused at the cancer to try and kill the cancer cells that way. And then there are surgeons who, that’s some of the most, that’s the one that people usually can understand the easiest.

They’re going to cut out a cancer surgically. And so together, the surgeon, the radiation oncologist and the medical oncologist will work together to come up with the best treatment plan for each patient. Now within my field, which is medical oncology, again, we have lots of different types of medicines that we can give for lung cancer, but most of them fall into three main buckets or types. So one of them is traditional chemotherapy. Chemotherapy drugs, there’s a whole bunch in this bucket. There’s a lot of different chemotherapy drugs. But what they all have in common is that they’re trying to kill dividing cells. They’re counting on the fact that maybe the cancer cells in the body are dividing more often than the healthy cells. And so if it goes in there and kills all the dividing cells, you’re going to kill more cancer than healthy cells.

The second type of treatment that medical oncologists give lung cancer patients is targeted therapy. These are drugs that go after some kind of target or flag or marker on the cancer cell. So a lot of times the oncology team will want to test the cancer to see what markers exist, and then if they have a treatment that goes after those markers, that’s called targeted therapy where you’re giving someone a treatment because of the markers that are seen in their cancer. A lot of those markers are found in genetic testing, but some are found through other types of testing. And then the third bucket of cancer drug treatments is called immunotherapy. And these are treatments that are trying to convince the body’s own immune system to fight the cancer. We’re supposed to be fighting things that are foreign to our body, like infections or bacteria and cancers. But sometimes when a cancer is developed, it’s tricked the immune system into ignoring it.

And so what we try to do with immunotherapy is wake up the immune system, explain what the trick is and say, hey, this is the foreign thing that you’re supposed to go after and try and kill. And so depending on the type of cancer that someone has, where it is in their body, what markers are on the tumor, then your doctors can come up with what they think is the most aggressive or likely to work combination of radiation or chemo or drug treatments that might, that might include traditional chemotherapy or targeted therapy or immunotherapy.

So my activation tip for this question would be to ask your doctor if immune therapy, targeted therapy, or chemotherapy are appropriate for your cancer. And if not, why not? There’s probably a good reason if they’re not recommending one of those things. But just make sure that you understand why you’re getting the treatment recommendation that you are. 


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Confusion to Clarity: Expert Explains the Importance of NSCLC Mutations

Confusion to Clarity: Expert Explains the Importance of NSCLC Mutations from Patient Empowerment Network on Vimeo.

What are some key lung cancer concepts that patients can learn about? Dr. Lecia Sequist explains lung cancer versus metastatic lung cancer and additional terms that can be helpful for patients to educate themselves about for empowered care.

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

[ACT]IVATION TIP:

“…you’re not alone. The terms are confusing. A lot of people get lost in the terminology, the medical terminology. Don’t be afraid to ask questions or go to a website that is recommended, that’s been vetted by doctors to really have good quality information to help you understand what these terms mean.”

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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

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What Patients Are Candidates for Immunotherapy in Lung Cancer Care

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

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


Transcript:

Lisa Hatfield: 

Dr. Sequist, we know that cancer isn’t just one disease. There are different types of cancer and even within one type of cancer, there are many different mutations that can occur within those cancer cells. Can you speak to some of those mutations with non-small cell lung cancer?

Dr. Lecia Sequist: 

Yeah. Cancer is really complicated, and it gets confusing, for both doctors and patients. We usually call a cancer by the organ that it started in.  So if the cancer starts in the lung, it’s usually called lung cancer. And it gets confusing because if the cancer spreads to another part of the body, it’s still considered lung cancer. So if someone started with a cancer in their lung, but it’s spread to their bones, the doctors would usually call it metastatic lung cancer that went to the bones as opposed to, I think a lot of people think of that as, now I have bone cancer. And so it can be very confusing. In addition to the broad type of cancer, like lung cancer, there are subtypes and then there are genetic subtypes. So there’s a lot of terms that get thrown out. And sometimes learning that you have cancer and learning about it, it’s almost like learning a foreign language. There’s so many terms that you have to first learn what the terms mean.

So I think my activation tip for this question would be, you’re not alone. The terms are confusing. A lot of people get lost in the terminology, the medical terminology. Don’t be afraid to ask questions or go to a website that is recommended, that’s been vetted by doctors to really have good quality information to help you understand what these terms mean. There’s also a lot of misinformation on the websites, that’s why you have to go to a site that maybe your doctor or your patient network recommends to make sure you’re getting accurate information. But the terms can be confusing. But it’s important to understand what you’ve been diagnosed with, so you can understand what your options are. 


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