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HCP Roundtable: Overcoming Lung Cancer Biomarker Testing Challenges

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

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

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EPEP Biomarker Resource Guide

EPEP Biomarker Resource Guide 

Practicing Cultural Humility to Empower Your Patients 

How Do You Empower Patients?

How Do You Empower Patients?

Transcript:

Dr. Nicole Rochester: 

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

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

Dr. Jessica Bauman:

Thanks for having us.

Dr. Lyudmila Bazhenova:

My pleasure should be here as well.

Dr. Nicole Rochester:

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

Dr. Jessica Bauman:

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

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

Dr. Nicole Rochester:

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

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

Dr. Nicole Rochester:

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

Dr. Lyudmila Bazhenova:

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

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

Dr. Nicole Rochester:

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

Dr. Jessica Bauman:

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

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

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

Dr. Jessica Bauman:

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

Dr. Nicole Rochester:

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

Dr. Jessica Bauman:

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

Dr. Lyudmila Bazhenova:

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

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

Dr. Nicole Rochester:

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

Dr. Jessica Bauman:

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

Dr. Nicole Rochester:

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

Dr. Lyudmila Bazhenova:

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

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

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

Dr. Nicole Rochster:

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

Dr. Jessica Buaman:

In terms of challenges of discussions with patients?

Dr. Nicole Rochester:

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

Dr. Jessica Bauman:

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

Dr. Nicole Rochester:

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

Dr. Lyudmila Bazhenova:

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

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

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

Dr. Jessica Bauman:

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

Dr. Nicole Rochester:

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

Dr. Jessica Bauman:

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

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

Dr. Nicole Rochester:

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

Dr. Jessica Bauman:

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

Dr. Nicole Rochester:

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

Dr. Lyudmila Bazhenova:

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

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

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

Dr. Nicole Rochester:

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

Dr. Jessica Bauman:

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

Dr. Nicole Rochester:

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

Dr. Lyudmila Bazhenova:

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

Dr. Nicole Rochester:

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

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

Dr. Jessica Bauman:

Thank you.


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How Can I Get the Best Lung Cancer Care?

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

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

See More from Best Lung Cancer Care

Related Resource:

Lung Cancer Treatment Landscape Overview

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Transcript:

Dr. Nicole Rochester: 

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

Dr. Christian Rolfo: 

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

Dr. Nicole Rochester: 

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

Dr. Christian Rolfo:

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

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

Dr. Nicole Rochester:

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

Dr. Christian Rolfo:

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

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

Dr. Nicole Rochester:

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

Dr. Christian Rolfo:

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

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

Dr. Christian Rolfo:

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

Dr. Nicole Rochester:

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

Dr. Christian Rolfo:

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

Dr. Nicole Rochester:

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

Dr. Christian Rolfo:

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

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

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

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

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

Dr. Nicole Rochester:

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

Dr. Christian Rolfo:

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

Dr. Nicole Rochester: 

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

Dr. Christian Rolfo: 

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

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

Dr. Christian Rolfo: 

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

Dr. Nicole Rochester: 

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

Dr. Christian Rolfo: 

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

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

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

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

Dr. Nicole Rochester: 

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

Dr. Christian Rolfo: 

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

Dr. Nicole Rochester: 

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

Dr. Christian Rolfo: 

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

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

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

Dr. Christian Rolfo: 

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

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

Dr. Nicole Rochester: 

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

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

Dr. Christian Rolfo: 

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

Dr. Nicole Rochester: 

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

Dr. Christian Rolfo: 

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

Dr. Nicole Rochester: 

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

Dr. Christian Rolfo: 

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

Dr. Nicole Rochester: 

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

 Dr. Christian Rolfo: 

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

Dr. Nicole Rochester: 

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

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

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

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

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Transcript:

Jill:

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

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

Lung Cancer Advocate Shares Importance of Staying Hopeful During Pandemic

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

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

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Transcript:

Jill:

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

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

Understanding Telemedicine Pros and Cons for Lung Cancer Patients

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

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

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Transcript:

Jill:

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

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

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

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

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

Lung Cancer Patient Shares Why Telemedicine Is an Important Tool

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

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

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

 

Transcript:

Jill:

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

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

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

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

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

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Transcript:

Dr. Nicole Rochester: 

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

Dr. Olugbenga Okusanya: 

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

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

Dr. Nicole Rochester: 

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

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

Dr. Olugbenga Okusanya: 

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

Key Questions for Newly Diagnosed Lung Cancer Patients to Ask

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

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

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Transcript:

Dr. Nicole Rochester: 

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

Dr. Olugbenga Okusanya: 

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

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

Dr. Nicole Rochester: 

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

Dr. Olugbenga Okusanya: 

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

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

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

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

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Transcript:

Dr. Nicole Rochester: 

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

Dr. Olugbenga Okusanya: 

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

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

Dr. Nicole Rochester: 

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

Dr. Olugbenga Okusanya: 

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

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

Dr. Nicole Rochester: 

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

Dr. Olugbenga Okusanya: 

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

Dr. Nicole Rochester: 

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

Dr. Olugbenga Okusanya: 

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

Empowering Lung Cancer Patients to Increase Their Treatment Options

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

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

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Transcript:

Dr. Nicole Rochester: 

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

Dr. Olugbenga Okusanya: 

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

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

Dr. Nicole Rochester: 

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

How Can BIPOC Lung Cancer Patients Guard Against Health Inequities?

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

How can BIPOC lung cancer patients guard against health inequities? Experts Dr. Nicole Rochester and Dr. Olugbenga Okusanyashare advice for questions to ask your doctor and ways to ensure optimal lung cancer care. 

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Transcript:

Dr. Nicole Rochester:

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

Dr. Olugbenga Okusanya: 

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

Dr. Nicole Rochester:

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

BIPOC Lung Cancer Patients and Health Disparities

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

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

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Transcript:

Dr. Nicole Rochester: 

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

Dr. Olugbenga Okusanya: 

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

Dr. Nicole Rochester: 

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

What Are Solutions to Lung Cancer Care Barriers?

What Are Solutions to Lung Cancer Care Barriers? from Patient Empowerment Network on Vimeo.

What are some solutions to lung cancer care barriers? Experts Dr. Nicole Rochester and Dr. Olugbenga Okusanyashare key advice for working to overcome care barriers for optimal care. 

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Transcript:

Dr. Nicole Rochester: 

You’ve gone through a lot of the barriers that patients and their family caregivers may face. Let’s talk about some of the solutions. Are there a few solutions that you can suggest for overcoming some of these barriers that you just described? 

Dr. Olugbenga Okusanya: 

Yeah, I think from the patient perspective, there are a number of things you can do to really help yourself. Number one is a good healthy dose of research, that means getting online, Googling, finding lung cancer experts, preferably in your region, finding out what their interests are, what are the things that they typically research and take care of, and then finding a way to get in contact with them. I think that is really step number one, it’s finding someone who specializes in the disease, and then to find someone that you actually get along, someone who you have a relationship with, a truly therapeutic relationship and invest in that person, and if they’re the right person for you, whether it be personality fit, whether it be background, you will find a relationship with them that will actually help you get through that process. I would also say many programs actually have nurse navigators who are people that help you navigate this process, that is quite literally why they are part of the health system, so if you can find programs and have nurse navigators, they can really be instrumental in setting up appointments that are either overlapped right after one another, all in the same place, things that really help smooth the edges of getting all the work I’ve done at on time.  

And again, I would also recommend the patients, I would try to stack your appointments or stack your visits so that they are not quite so spread out over space and time, because a visit, usually it takes a few days to get a result, which then takes a few days to get a course of action, which then can sometimes provoke another test. 

So, the more times that things are stacked together and information just to get in big packets, I think really the better for moving through the process.      

Dr. Nicole Rochester: 

I think what I’m hearing in your answers is really the importance of patients putting themselves in the driver’s seat, which is another thing that I strongly advocate for. I think many patients and family members don’t see that as their role, and they don’t understand and appreciate the value of doing these things that you just talked about, doing your own research and finding providers with whom you connect, it’s so incredibly important, especially when it comes to cancer and other serious diseases. 

What Are the Barriers to Lung Cancer Care?

What Are the Barriers to Lung Cancer Care? from Patient Empowerment Network on Vimeo.

 What are some barriers to lung cancer care? Experts Dr. Nicole Rochester and Dr. Olugbenga Okusanyadiscuss factors that impact lung cancer care and some ways that care access can be improved for better care. 

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Transcript:

Dr. Nicole Rochester: 

We know that there are many factors that can negatively impact outcomes for patients and families facing a lung cancer diagnosis, including things like social stigma for smoking, geographic location, socioeconomic status, insurance and access to care, financial hardships and access to transportation. So, my question to you, Dr. Okusanya is, what are some of the barriers that both lung cancer patients and their care partners face when they are seeking care? 

Dr. Olugbenga Okusanya: 

First of all, thank you very much for putting a spotlight on lung cancer care, we really need more people to help us treat this really terrible disease. 

There are a number of barriers for our patients in order to get the best care possible. Number one, we actually find this diagnosis, we find that a lot of patients, have long nodules that have been seen because maybe they got a chest X-ray or a CAT scan for some other reason, and maybe they don’t get followed up on because they don’t have a steady source of healthcare, they don’t have a PCP or someone who regularly follows up on their health information. We have trouble also sometimes getting patients in the appropriate diagnostic studies that they need, oftentimes, we find patients that may show up in the hospital that have a significant problem and they may need a special kind of CAT scan or a biopsy, and they simply do not have the resources to get to said CAT scan or get to said biopsy, which is critical in making the appropriate diagnosis so we can get them to the right therapy. One of the biggest things that you mentioned is finding a specialist in terms of all aspects of lung cancer care, whether it is surgery, medical oncology, or radiation oncology, there are medical practitioners that mostly specialize in lung cancer care, and because of that, they’re going to have access to different resources, they’re going to think differently about the disease process and they’re going to approach each patient differently because of the disease process. So, finding someone who really thinks and works in the lung cancer space all the time, I think it’s a barrier to patients getting really good care. 

We also find that one, cancer care has a lot of hurdles, apart from proper CAT scans, biopsies, work-ups, actual interventions, there are a lot of steps that patients have to go, to get from even just getting a diagnosis to getting treatment and having patients move through that period of time, which is we hope usually four to six weeks in a sort of step-by-step manner can be extremely eliminating. So we really are trying to condense those things so patients can meet all the specialists, they need to get all the tests that they need to get in maybe one or two concise visits and then get into care, and lastly, as you mentioned, not having access to what we call multidisciplinary conferences is a limitation because there are more and more nuanced ways that lung cancer is presenting and being treated, that needs to be discussed between a surgeon and radiation oncologists and the medical oncologists, preferably all in the same setting, all at the same time. So having access to those clinics where we can have a really high-level discussion about the best thing to do for a patient, I feel is a significant barrier, especially for our patients with advanced disease 

How Can I Get the Best Lung Cancer Care No Matter Where I Live?

How Can I Get the Best Lung Cancer Care No Matter Where I Live? from Patient Empowerment Network on Vimeo.

How can those living with lung cancer ensure they get quality care even if they live in rural areas? How can lung cancer patients gain confidence in voicing treatment concerns and in communicating with their healthcare team? Watch as Dr. Olugbenga Okusanya shares key points about such vital topics for the lung cancer community.

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Transcript:

Dr. Nicole Rochester: 

Hello and welcome. I’m Dr. Nicole Rochester, your host for today’s Patient Empowerment Network program. Today we’re going to be talking about how long cancer patients can truly get the best care no matter where you and your family live. We’re going to talk about things like how can I remove roadblocks in my care to gain access to state-of-the-art treatment? Will my insurance limit me if I want to get a second opinion? As a care partner, how do I best advocate for my partner, and is a clinical trial right for me? The answers to some of these questions we’ve received revolve around awareness, feeling empowered to ask questions, and connecting to the right resources at the right time. In this program we’ll be learning just that as we meet our guest expert. It is my honor and privilege to be joined by Dr. Olugbenga Okusanya, he is an assistant professor of Thoracic Surgery at Thomas Jefferson University Hospital. Thank you so much for joining us, Dr. Okusanya. 

Dr. Olugbenga Okusanya: 

Absolutely. It’s a pleasure to be here, thank you for having me. 

Dr. Nicole Rochester: 

Now we’re gonna start with talking about some of the barriers to lung cancer care. We know that there are many factors that can negatively impact outcomes for patients and families facing a lung cancer diagnosis, including things like social stigma for smoking, geographic location, socioeconomic status, insurance and access to care, financial hardships, and access to transportation. So, my first question to you, Dr. Okusanya is, what are some of the barriers that both lung cancer patients and their care partners face when they are seeking care? 

Dr. Olugbenga Okusanya: 

First of all, thank you very much for putting a spotlight on lung cancer care, we really need more people to help us treat this really terrible disease. 

There are a number of barriers for our patients in order to get the best care possible. Number one, we actually find at diagnosis, we find that a lot of patients have lung nodules that have been seen because maybe they got a chest x-ray or a CAT scan for some other reason, and maybe they don’t get followed up on because they don’t have a steady source of healthcare, they don’t have a PCP or someone who regularly follows up on their health information. We have trouble also sometimes getting patients in the appropriate diagnostic studies that they need, oftentimes, we find patients that may show up in the hospital that have a significant problem and they may need a special kind of CAT scan or a biopsy, and they simply do not have the resources to get to said CAT scan or get to said biopsy, which is critical in making the appropriate diagnosis so we can get them to the right therapy. One of the biggest things that you mentioned is finding a specialist in terms of all aspects of lung cancer care, whether it is surgery, medical oncology, or radiation oncology, there are medical practitioners that mostly specialize in lung cancer care, and because of that, they’re gonna have access to different resources, they’re gonna think differently about the disease process and they’re gonna approach each patient differently because of the disease process So finding someone who really thinks and works in the lung cancer space all the time, I think it’s a barrier to patients getting really good care. 

We also find that one, cancer care has a lot of hurdles, apart from proper CAT scans, biopsies, work-ups, actual interventions, there are a lot of steps that patients have to go, to get from even just getting a diagnosis to getting treatment and having patients move through that period of time, which is we hope usually four to six weeks in a sort of step-by-step manner can be extremely eliminating. So we really are trying to condense those things so patients can meet all the specialists, they need to get all the tests that they need to get in maybe one or two concise visits and then get into care, and lastly, as you mentioned, not having access to what we call multidisciplinary conferences is a limitation because there are more and more nuanced ways that lung cancer is presenting and being treated, that needs to be discussed between a surgeon and radiation oncologists and the medical oncologists, preferably all in the same setting, all at the same time. So having access to those clinics where we can have a really high-level discussion about the best thing to do for a patient, I feel is a significant barrier, especially for our patients with advanced disease. 

Dr. Nicole Rochester: 

Thank you so much. Wow, you have given us so much to think about and I appreciate your thorough answer. One of the things that I’m struck with as you talk about all of these steps and the fact that ideally, they need to be undergone within a certain time period, of course, it’s time-sensitive. And you mentioned navigating, and certainly, that’s something that I deal with on a regular basis, just the challenges of navigating through each one of those steps can be extremely difficult, you’ve gone through a lot of the barriers that patients and their family caregivers may face. Let’s talk about some of the solutions. Are there a few solutions that you can suggest for overcoming some of these barriers that you just described? 

 
Dr. Olugbenga Okusanya: 

Yeah, I think from the patient’s perspective, there are a number of things you can do to really help yourself. Number one is a good healthy dose of research, that means getting online, Googling, finding lung cancer experts, preferably in your region, finding out what their interests are, what are the things that they typically research and take care of, and then finding a way to get in contact with them. I think that is really step number one, it’s finding someone who specializes in the disease, and then to find someone that you actually get along, someone who you have a relationship with, a truly therapeutic relationship and invest in that person, and if they’re the right person for you, whether it be personality fit, whether it be background, you will find a relationship with them that will actually help you get through that process. I would also say many programs actually have nurse navigators who are people that help you navigate this process, that is quite literally why they are part of the health system, so if you can find programs and have nurse navigators, they can really be instrumental in setting up appointments that are either overlapped right after one another, all in the same place, things that really help smooth the edges of getting all the work I’ve done at on time. 

And again, I would also recommend the patients, I would try to stack your appointments or stack your visits so that they are not quite so spread out over space and time, because a visit, usually it takes a few days to get a result, which then takes a few days to get a course of action, which then can sometimes provoke another test. 

So, the more times than things are stacked together and information just a get to get in big packets, I think really the better for moving through the process. 

Dr. Nicole Rochester:

I appreciate that. I think what I’m hearing in your answers is really the importance of patients putting themselves in the driver’s seat, which is another thing that I strongly advocate for. I think many patients and family members don’t see that as their role, and they don’t understand and appreciate the value of doing these things that you just talked about, doing your own research and finding providers with whom you connect it’s so incredibly important, especially when it comes to cancer and other serious diseases. So, I want to switch gears a little bit and talk about racial and health disparities, ethnic and health disparities, specifically in lung cancer care. I know that you have done some research in this area, and certainly being a person of color, this is something that I would imagine you relate to, so we know that the CDC and many other healthcare organizations have now declared racism a public health crisis, and certainly in 2021, we continue to see worse outcomes for cancer and many other chronic illnesses in people of color, so I’m curious, what do you think are the notable health disparities that are consistently seen in treating BIPOC patients living with lung cancer? 

Dr. Olugbenga Okusanya: 

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

Dr. Nicole Rochester: 

That is extremely heartbreaking, and it’s sad to hear that we see the same disparities in lung cancer that we see with every other chronic condition, with every other cancer, certainly what we’ve seen recently with COVID-19 as well, and it really underscores what you said previously, which is the importance of being an advocate for yourself and doing your research and making sure that you really are getting the best care, which could be difficult when you’re struggling with your cancer diagnosis. Sometimes I get angry, I feel like we’re putting so much responsibility and so much burden on the patient. With that said, what are some things that patients of color can do in order to protect themselves from these inequities that you’ve talked about, starting with diagnosis and treatment, what can we do? What can patients of color do? 

Dr. Olugbenga Okusanya: 

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

Dr. Nicole Rochester: 

Just have to repeat what you said, you said, I teach as much as I operate. That just really resonated with me, and I think that… That’s so incredibly important. Doctor means teacher, right? I think that’s the Latin… We are obligated to teach our patients, so I just really appreciate that that’s something that you incorporate in your daily practice. If we shift gears a little bit and talk about access and some of the concerns about treatment access for lung cancer patients, which you’ve actually alluded to, we know that sometimes these barriers that patients face actually limit their access to treatments, and you indicated surgery as being the mainstay and some difficulties with that, so how can we empower patients so that they don’t feel limited in their care, and how do we make them aware of these treatment options that are available, so that if they are in an office and maybe something’s being offered, but that’s not actually, the standard of care, how do we empower them to get that information and then to act on it? 

Dr. Olugbenga Okusanya: 

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

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

Dr. Nicole Rochester:

Wow. Free of charge. Okay, I see you’re teaching me something that I didn’t know. I’m a huge proponent of second opinions, I’ve talked to so many patients and family caregivers who think that they’re offending their doctor if they ask for a second opinion, so I appreciate that you brought that to the forefront and you deserve to have multiple opinions as you’re making these very important life-changing decisions. So, thank you for sharing that. This is a perfect segue. You mentioned telehealth, and we know that one of the barriers to receiving care, and you’ve indicated that in terms of having access to a multi-disciplinary team, having access to thoracic surgeons as opposed to general surgeons, so we know that that is impacted by where we live, and that often our geographic location can actually be a barrier to the receipt of quality care, so I’d love for you to just talk a little bit about how patients who may be in more remote locations can make sure that they are also receiving appropriate care for their lung cancer. 

Dr. Olugbenga Okusanya: 

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

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

Dr. Nicole Rochester: 

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

Dr. Olugbenga Okusanya: 

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

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

Dr. Nicole Rochester: 

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

Dr. Olugbenga Okusanya: 

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

Dr. Nicole Rochester: 

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

Dr. Olugbenga Okusanya: 

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

Dr. Nicole Rochester: 

Love it, love it. Alright, Dr. Okusanya, so we’re gonna talk now about staying on that theme of empowering patients, we know that all of these barriers that we’ve been discussing can impact and limit treatment options, and we know that late diagnoses or not getting the proper care at the outset will lead to more complications and unfortunately, even death in some situations, and as you’ve alluded to, we know that patients who are educated about their illness, patients who take an active role in their medical care receive better care, they have better outcomes. So, what are some key questions that patients and care partners should ask at the very beginning when they are first beginning this journey with lung cancer? 

Dr. Olugbenga Okusanya: 

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

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

Dr. Nicole Rochester: 

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

That is very powerful. 

Dr. Olugbenga Okusanya: 

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

Dr. Nicole Rochester: 

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

Dr. Olugbenga Okusanya: 

Number one, I tell patients to bring someone with them to their appointments, someone who can stand by as within reason someone who can be there to listen as well, ’cause usually I say, if I tell you 100 things in an appointment which can legitimately have, I could give you 100 unique points of information and in 1 45-minute visit. If you catch 30 of them or 35 of them, you really understand that. I think that’s a lot because they’re very emotionally charged. So, hopefully someone else, it’s with you, maybe catches another 30 or 40, and that gets you to a point where you can really sit down later and understand. I encourage patients to take notes to write things down, and if they want to, to record, to have audio recording of the session, I wouldn’t say anything to you now that I wouldn’t say in a month or in a year, or anywhere else. I’m gonna tell you exactly what I think and I… And if I have uncertainty, I will expose that uncertainty, I will let you know that this is a case that could go either way. And this is a piece of information that I’m looking back and forward between these two options and that really helps the patients later on go back and say, Did I really hear that right? Did I really understand it, right? So that you can feel like you’re getting the best care, and I really think that you have to make sure that you feel comfortable with the provider. 

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

Dr. Nicole Rochester: 

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

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

Dr. Olugbenga Okusanya: 

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

Dr. Nicole Rochester: 

Awesome. Well, I really enjoyed this time. Thank you so much, Dr. Okusanya, you have given us so much useful information, and I wanna thank all of you again for tuning into the Patient Empowerment Network program.