Accessing Personalized Treatment for Lung Cancer

 

Accessing Personalized Treatment for Lung Cancer from Patient Empowerment Network on Vimeo.

Lung cancer expert Dr. Heather Wakelee defines personalized medicine and explains the factors that are considered when determining a treatment approach.

Dr. Heather Wakelee is a thoracic medical oncologist and deputy director of the Stanford Cancer Institute where she also serves as the division chief of medical oncology. Learn more about Dr. Wakelee, here.

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Transcript:

Katherine:

We’ve been hearing the term “personalized medicine” a lot more often. How would you define that term?

Dr. Wakelee:

That’s a great question. So, I think back when I first started taking care of patients living with lung cancer 20 years ago, we really just had chemotherapy for those with metastatic disease. And for those with earlier stage disease, it was just surgery radiation. And since that time, we’ve learned a whole lot and brought in a lot of different types of treatment. Surgery and radiation still have important roles for many patients.

And we think about them as being targeted and personalized based on stage, but it’s a little bit different. When we talk about personalized, we’re thinking more about what are aspects about the tumor that allow us to pick the right systemic treatment. So, “systemic” meaning a pill or something that we give IV.

With chemotherapy, we don’t have much to pick between them as far as specifics for the tumor. We can look at what we call the histology, which is how it looks under the microscope, whether it’s the squamous type or the non-squamous type and some of the chemotherapy drugs matter there. But, in the last 15, 20 years, we’ve learned about the specific what we call “gene mutations” that define the tumor.

And, depending on the gene mutation in the tumor, for some patients, we can give them pill therapy drugs that will work well. So, that’s personalized. Or, immune therapy now is an option for a lot of patients. That’s usually IV therapy.

And, there are some aspects of the tumor that can help us pick that also. 

Which Lung Cancer Treatment Is Right for You? What You Need to Know

 

Which Lung Cancer Treatment Is Right for You? What You Need to Know from Patient Empowerment Network on Vimeo.

What do you need to know before deciding which treatment is best for YOUR lung cancer? Lung cancer specialist Dr. Heather Wakelee reviews key factors that help guide treatment decisions, including biomarker testing, and shares advice for partnering with your team to advocate for the best care.

Dr. Heather Wakelee is a thoracic medical oncologist and deputy director of the Stanford Cancer Institute where she also serves as the division chief of medical oncology. Learn more about Dr. Wakelee, here.

This program is brought to you by the Patient Empowerment Network. It is made possible through support from Daiichi Sankyo, Foundation Medicine, Illumina, Merck, Novartis, and generous donations from people like you.

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Transcript:

Katherine:

Hello, and welcome. I’m Katherine Banwell, your host for you today’s program. Today, we’re going to discuss how to access the most personalized lung cancer therapy for your individual disease and why patients should insist on essential testing. Before we get into the discussion, please remember that this program is not a substitute for seeking medical advice. Please refer to your healthcare team about what might be best for you.

Let’s meet our guest today. Joining me is Dr. Heather Wakelee. Dr. Wakelee, would you please introduce yourself?

Dr. Wakelee:              

Sure. Thank you so much and I’m really delighted to be on this and get to address all of our listeners. So, I am Dr. Heather Wakelee and I am a lung cancer specialist. I work at Stanford University where I’m also the chief of the Division of Medical Oncology.

Katherine:                  

Excellent. Thank you. Before we get into an in-depth discussion on lung cancer treatment, we’ve been hearing the term “personalized medicine” a lot more often. How would you define that term?

Dr. Wakelee:              

That’s a great question. So, I think back when I first started taking care of patients living with lung cancer 20 years ago, we really just had chemotherapy for those with metastatic disease. And for those with earlier stage disease, it was just surgery radiation. And since that time, we’ve learned a whole lot and brought in a lot of different types of treatment. Surgery and radiation still have important roles for many patients.

And we think about them as being targeted and personalized based on stage, but it’s a little bit different. When we talk about personalized, we’re thinking more about what are aspects about the tumor that allow us to pick the right systemic treatment. So, “systemic” meaning a pill or something that we give IV.

With chemotherapy, we don’t have much to pick between them as far as specifics for the tumor. We can look at what we call the histology, which is how it looks under the microscope, whether it’s the squamous type or the non-squamous type and some of the chemotherapy drugs matter there. But, in the last 15, 20 years, we’ve learned about the specific what we call “gene mutations” that define the tumor.

And, depending on the gene mutation in the tumor, for some patients, we can give them pill therapy drugs that will work well. So, that’s personalized. Or, immune therapy now is an option for a lot of patients. That’s usually IV therapy.

And, there are some aspects of the tumor that can help us pick that also.

Katherine:                  

Well, I imagine that much of personalized immunotherapy for a patient requires a number of tests and then a thorough review of the results. So, can you provide an overview of important tests following a lung cancer diagnosis?

Dr. Wakelee:              

That’s a fabulous question. When we think about the tests that we need to have done, they’re mostly tests that are done on the tumor, so, either if someone has a surgery or at the time of biopsy. and, that’s where we can figure out what we call, again, the histology that’s squamous or non-squamous. That’s when they look at it under the microscope. But, they also, with the tumor specimen, you can pull the DNA out of the tumor and then test for the gene mutations in the tumor. And, I always emphasize these are not changes in the genes that are in the whole person. They are things that are unique to the tumor. They are what make the tumor different from the rest of the person.

So, we look at those gene mutations or that’s kind of a biomarker. So, there are a lot of terms that we use, and I know it gets really confusing. So, I try to use “biomarker” to mean all of these things, but that gene mutation is what we look at in the tumor tissue to see if there are specific changes that will allow us to give a pill therapy, a targeted pill therapy. And then, there are also aspects of the tumor that help us figure out whether or not the immune therapy might work, and most commonly, that’s something called PD-L1. That’s a protein that we look at on the surface of the tumor, and so again, under the microscope.

Katherine:                  

And, when you talk about extracting DNA, is that via a blood test?

Dr. Wakelee:              

So, we have two different ways to do that. So, what I was talking about before was from the tumor tissue, you can extract the DNA. But now, there are these liquid biopsies where we can draw blood and find the tumor DNA that is different from the rest of the person’s DNA and look for those gene mutations in the tumor.

And that is where there’s a lot of developments happening. And, that’s so fabulous because they’re often faster results for patients, and it means that you can not have to go through another biopsy. We still need the biopsy to establish whether or not there is even cancer. But, once we know that there’s cancer for sure, then we can use the liquid biopsies to get a faster information result on those gene mutations and to follow over time to see how the tumor evolves because tumors change after they’ve been treated.

Katherine:                  

Do you use imaging at all?

Dr. Wakelee:              

Yes. Always. So, when someone is first diagnosed with cancer, we usually find that because of imaging, so, a CT scan or an X-ray, maybe they had a screening CT scan or maybe they had a cough that led someone to go get an X-ray, an examination. So, the imaging is a part of the original diagnosis. And in addition to CT scans, we’ll often get a PET scan that helps us look for, in a different way, the rest of the body, maybe an MRI of the brain to look in that area.

And then, wherever we’ve found the tumor, we will track that area with scans over time. And, it gets a little complicated for a patient that was found with what we call early-stage disease. So, stage I or II. Many of the times, those patients can have surgery and then we don’t have any tumor we can follow anymore. But we get CT scans to look to see if it could have come back. For patients with more advanced disease, so, stage III that couldn’t have surgery or stage IV, there we have areas that we’re going to continue to follow with the scans. And which scans and how often is going to depend a lot on what treatment the patient’s on and where the tumors are located that we’re tracking.

Katherine:                  

Do these tests differ for small cell lung cancer and non-small cell lung cancer patients? And, I know that non-small cell lung cancer is also known as NSCLC.

Dr. Wakelee:              

Yes. So, long ago, the only distinction we had with lung cancer was that small cell versus non-small cell, and that is something that is seen under the microscope when that tissue is taken out from the biopsy. The pathology doctors look at it under the microscope, and the cells look different. And, the small cell lung cancer, those cells are small. It’s not very creative naming. And then, everything else is non-small cell or NSCLC. So, it’s SCLC and NSCLC. So, that was one of the first distinctions.

And, it is still very important because the chemotherapy drugs that we use are slightly different. And, the genetic, those gene mutations, we see them in any cancer. That’s what makes a cancer different from the rest of the body. But in small cell lung cancer, the tumor mutations that we see are not things that we know how to target specifically. In non-small cell, there are targets that we can target specifically for some patients.

So, just there, it’s different in having the targeted pill drugs in non-small cell, not so much in small cell. With immune therapy, those newer immune therapy IV drugs, they can work in both small cell and non-small cell. But for small cell, the biomarkers, that PD-L1 level is not as important for helping us figure out who’s going to benefit. For non-small cell, with many of the drugs, it is important. So, there are differences there.

Katherine:                  

Well, let’s go a little deeper. And, you did mention some of this already, Dr. Wakelee, but what is genomic or biomarker testing?

Dr. Wakelee:              

So, we are struggling with how to have one unifying way of describing it because it’s so complicated. So, to me, biomarker testing is any aspect of the tumor that helps us choose the best treatment for that patient. And so, it’s a very broad term. And, within biomarker testing, there are several different ways that we look at it.

So, one is to look at what proteins are on the cell’s surface. And, we do that by having stains that we use to stain the tissue. So again, complicated, but when a piece of tissue is taken out of the person, part of the tumor is removed. It’s sliced into little tiny slices, which are then put on glass slides that can be looked at under the microscope. And, that’s how the pathology doctors can look and see, “Ah, this looks like cancer,” or, “It doesn’t look like cancer.” When it does look like cancer, you can then put on stains, so basically, different colored antibodies that will light up if that particular protein is there. And so, that helps us figure out for sure that this started in the lung because there are specific proteins that are only found in lung. So, that’s one way we used it, and this is an older technology. But, we also can use that to look for how much of this PD-L1 protein is expressed. And so, that’s an important biomarker, but it’s not based on genomics, which is when we’re talking about the DNA.

 Then, we have the genomic testing, and that’s when we’re looking at the genome of the tumor and how that genome is different. And, that’s that DNA or RNA testing. We talk about it with the next-gen sequencing. So, “sequencing,” any of those terms are all meaning we’re looking at some aspect of what makes the tumor genes and therefore the proteins made by the tumor different than the rest of the genes in the person.

And so, that testing, that genomic testing can be done on either the tumor specimen or that’s where we can do blood tests that will be able to pull out those bits of the DNA that are from the tumor versus from the person and help us figure out what’s going on with the cancer. So, when we talk about biomarkers, the whole picture, and when I’m talking with patients who are diagnosed with lung cancer, we talk about well, there’s chemotherapy treatment, which is good for almost everybody. There is targeted therapy.

Targeted therapy is usually based on those genomic tests, and the genomic tests can be done either on the tissue or on blood. But, they’re really important to have a full understanding of the tumors to do a comprehensive or next-gen sequencing analysis of the tumor or DNA. And then, you have the immune therapy where that PD-L1 biomarker is important. So, that’s the way I think about it, and the biomarkers are really critical for helping us figure out what’s the best path forward for any individual patient.

Katherine:                  

Let’s turn to treatment, Dr. Wakelee. On a basic level, what are the goals of treatment for lung cancer?

Dr. Wakelee:              

So, with lung cancer, we’d love to cure everybody, that’s the ultimate goal, and do it in a way where people are able to continue living their life as they were before the cancer diagnosis. The ways that we do it, first of all, we’ve got to find the cancer, and that’s where screening is such an important aspect of things. If we can find the cancer at an earlier stage, we’re more likely to be able to cure someone.

So, what do I mean by “earlier stage?” Well, when a tumor first develops, usually, there is a single cell that develops a mutation, meaning a change in the gene, which gives that cell an advantage so it doesn’t die the way it’s supposed to. And then, it keeps growing, and dividing, and making new cells. And those over time get to a large enough size that they are the cancer. And given more time, those cancer cells start to spread into other parts of the body, usually first into what we call the lymph nodes, and from there then into other organs in the body. And this stage refers to health or how the cancer spread. So, the stage I cancer is still in that ball of cancer. Stage II means that it’s spread into some lymph nodes. Stage III is it spread into more lymph nodes, usually in the center part of the chest or mediastinum, and that’s where it starts to be much more difficult for the surgeons to be able to truly remove all of the cancer.

And then stage IV means that the cancer is not something that we’re going to be able to remove with surgery. It’s spread either within the lung to the lining of the lung or it has spread to other organs in the body. And so, when we talk about those stages that I, II, III, IV, it’s a bit more complicated than that. But, I think for most people, if they just think about it as stage I, just the cancer, stage II, lymph nodes and the lungs, stage III, lymph nodes in the center, and then stage IV, elsewhere, that’s a good way to kind of wrap your head around it.

And when we talk about stage I and II, that’s the truly early stage where we hope to be able to cure people with surgery. Surgery alone is enough for the majority of people with stage I cancer, and for maybe half, a little more than half of people with stage II. So, how can we be better than that? Well, that’s where there’s been a lot of new advances. So, adding chemotherapy after surgery can help a lot of stage II patients.

If the tumor genomic testing biomarkers shows that there’s a mutation called EGFR, we now know that there’s a pill drug that people can take that would prolong the time to when the cancer might come back. And then, just very recently, there was stated that that immune therapy drugs IV can also prolong time to when the cancer comes back and maybe improve cure if the tumor has that biomarker called PD-L1. So, that’s that early stage. So it’s, again, getting more and more complicated and emphasizing that you’ve got to understand the biomarkers of the tumor to know how to best help someone.

When we move to stage III, some have surgery, but when you can’t have surgery, then we do the chemotherapy and the radiation. That’s the key part of the treatment there. And, we also know that immune therapy can be really helpful for a lot of patients when it’s given after the chemo and radiation’s completed. And then for stage IV, I talked about that already, which is you’ve got to do the biomarkers to figure out the best treatments for some people starting with a targeted pill drug is the right thing if their tumor has those right gene mutations.

For other people, immune therapy alone might be an option if the PD-L1 level is very high and they don’t have one of those gene mutations in the tumor. And for a lot of people, chemotherapy or chemotherapy plus immunotherapy is the right strategy.

Katherine:                  

Would you help the audience understand the types of therapy for small cell lung cancer specifically?

Dr. Wakelee:              

Yes. So, small cell still has the same kind of staging, but it’s a little bit more simple. We talk about extensive stage or limited stage. And what that has to do with is we rarely do surgery for small cell. It tends to have spread earlier. There are a few cases where that’s done, but normally, we divide it up into limited or extensive. And when we talk about that, limited is the radiation doctors can get all of the cancer in one radiation field, and then radiation plus chemotherapy is the standard approach to try to cure. If it’s more extensive than that, then it becomes extensive stage.

And, the best treatment are going to be chemotherapy plus those immune therapy drugs added together.

And so, the chemotherapy drugs that we use for non-small cell and small cell, the platinum drugs play a role in all of it. The drug we partner is a little bit different. There’s a drug etoposide we use a lot in small cell and a lot of other options for non-small cell. And then, the immune therapy drugs, there are a lot of options that are fairly similar for both small cell and for non-small cell. 

Katherine:                  

Dr. Wakelee, you mentioned targeted therapies. How do they work?

Dr. Wakelee:               

Targeted therapies are something we can use when we find a specific gene mutation in the tumor. So, I mentioned before that in order for a cancer cell to become cancer, something has to happen to the DNA in the cell.

And, there’s a change or a mutation in the DNA of the cell which leads it to be a cancer. And, a lot of the time, that mutation happens in a specific kind of gene that makes a type of protein called a tyrosine kinase. And for those of you who haven’t studied a lot of science, it’s a word you might not have heard before. But basically, these tyrosine kinases are proteins in the body that make a lot of changes to what’s going on in the rest of the cell. So, they’re sort of what we call regulators. And, one way of thinking about them is like on and off switches. So, normally, their job is to sit and if the right molecule comes around, that turns it on, and then it turns on other proteins in the cell. And if that molecule isn’t there, it’s turned off. So, it’s this on and off switch that does a lot of other aspects of what’s going on in the cell. But, sometimes, a mutation happens. It turns it on all the time. So, it’s like if you leave the light on.

It’s on all the time, that’s using a lot of energy, and that’s actually what’s driving the cell to act like a cancer. And so, we can now look for some of those mutations that turn some of these tyrosine kinases on all the time. But, we’ve also developed drugs that we can use to turn them off. So, if we find this specific gene mutation that’s turning, say, the EGFR protein on all the time, if we find that, we can have the patient take a pill that then turns that off.

And that helps the cancer slow down, some of it die, some of the cancer cells die, but it doesn’t completely wipe it out. It helps the patient for a long time though by shrinking the cancer, helping them feel better because the symptoms are gone, keeping the cancer from growing. But, cancer cells are clever. They continue to divide, they can continue to make new mutations, and eventually, they figure out ways around that. So, when we talk about targeted therapy, it’s a setting where we find the cancer.

In the cancer, we find the gene mutation, it’s in one of these specific types of proteins, genes that make specific protein that turn something on that we can then turn off, and with those pill drugs, we can have a big impact for people.

Katherine:                  

And, what exactly is immunotherapy?

Dr. Wakelee:              

Immunotherapies are treatments that were used to help keep the immune system more active.

So, the immune system is a very complex mechanism. There are cells that their whole job is to figure out and find things that are not us. So, they are looking for bacteria, they’re looking for cells that have a virus in them, and when they find it, they attack. And, that attack can be in the form of antibodies, it can be cells that actually go in and attack other cells directly, and we are all familiar a little bit with the immune system because we know that if we get a cold, our body, we can get a fever, that’s part of our immune response, and we get better. And then, some people know the bad side of the immune system if they have allergies or certain autoimmune diseases where the immune system gets a little bit too revved up and starts to recognize normal things as foreign.

So, in the setting of cancer, normally, the immune system is able to recognize a cancer cell, see that it’s different from the rest, and get rid of it. But, cancer cells are clever and they figure out ways to evade the immune system. And, one of the ways they do this is they put a protein called PD-L1. So, PD-L1 is a protein that a lot of our normal cells use to say, “Just a normal cell. Ignore me.” And so, when an immune cell comes in and sees that, it gets turned off it goes away. So, what our immune therapies do is most of them are blocking that PD-L1 protein. And, when they do that, it’s sort of like taking away the stop sign. So, you’ve got a tumor using a stop sign to say, “Go away, immune cell,” you block it so the immune cells can’t see that stop sign, and so then it kills the cancer cell better. So, that’s how these drugs work, and that’s the immune therapy.

There are some other stop signs besides PD-1 and PD-L1, but that’s the most common. So, when we’re talking about immune therapy, it’s drugs that block that. So, they increase the ability for the immune cell to recognize cancers. The risk from them is that you can get the body to recognize normal tissue as a problem sometimes. So, that’s the toxicity that we watch for.

Katherine:                  

Right. What are the advantages of these new treatment approaches compared to standard chemotherapy?

Dr. Wakelee:              

Well, I think the most exciting news that we’ve seen in lung cancer over the last few years is that we’re actually helping more people live longer. And the way that we’re doing that is through these newer treatments. So, when we can personalize treatment by recognizing that a person’s cancer has a specific gene mutation and we can give them the right targeted pill drug, we can help them live longer and feel better because those often have fewer side effects. Wish I could say they were curing the disease, but they’re helping people live longer.

And, that can be measured in years for some folks, which is fantastic. And then, with immune therapy, again, they’re not working for everybody, but they were for a large number of patients with lung cancer with non-small cell to help them live longer with their cancer controlled. And so, we’ve actually improved the overall survival rates for lung cancer with these new developments. Where we can make even more of an impact is also by finding more of the cancers earlier, and that’s where cancer screening is so important also. So, by having more choices, chemotherapy can still help a lot of people. Targeted therapies can help probably close to 20, 30, 40 percent of people with non-small cell lung cancer that’s the adenocarcinoma type. And then, the immune therapies can help other people living with lung cancer. Usually immune therapies don’t work on the same tumors the way the targeted pills work. So, you’re kind of getting at different groups of people with those different strategies. It’s not completely true, but it’s a kind of general principle about it.

Katherine:                  

What about side effects for some of these treatment choices?

Dr. Wakelee:               

So, chemotherapy is one people fear the most, but I think it has a bit more of a bad reputation than it needs. A lot of the lung cancer therapies that are chemotherapy can be reasonably tolerated. I mean, I’m not signing up to go get chemotherapy just because. There definitely are side effects. The biggest one is people get fatigue, get really tired. Though, if they’re feeling horrible because of the cancer, a lot of times people feel dramatically better. But, tiredness, it can impact appetite a little bit, though cancer does that also. There can be nausea, vomiting, but we’re much better at controlling that with the newer drugs. Some cancer therapies cause hair loss, but a lot of our non-small cell lung cancer therapies don’t cause hair loss. So, there are a lot of options there you can talk about with your doctor. And then, when the blood counts are low, there can be risk for infection, low red blood cells with anemia.

So, there are a lot of different things. But in general, chemotherapy is better tolerated than people think it’s going to be because in the movies, they make it look horrendous.

With the pill therapies, again, lots of variability depending on the specific pill. Some of them cause rash. Some don’t. Some of them can cause some changes to the heart that we have to monitor with EKGs, electrocardiograms, some don’t. Some cause some changes to labs like for liver tests that we have to monitor. Some don’t. Some cause hair color changes. Some don’t. It’s always to gray, unfortunately.

So, there are a lot of different variations in what different treatments can do. And so, it’s just really important if your doctor is talking with you about starting one of the targeted pill drugs that you really ask what are the side effects I need to be watching for, what are the ones I need to know to call you about, and which are the ones I just know, “Okay, this is happening and it’s okay. It’s going to cause swelling in the ankles,” no, just a huge range of them. And then, with the immune therapy drugs, they tend to be mostly fatigue, just like with chemotherapy, though some people feel fine.

What we have to watch for is that they can cause what we call autoimmunity. So, it’s talking about the fact that the way they work is they help the immune system better recognize the cancer, and they do that by taking away one of the stop signals. But, that stop signal, the PD-1, PD-L1, that stop signal is also used by a lot of normal cells to tell the immune system to back off. So, when you remove it, when you block it, the immune system can get confused and start to attack normal cells. So, you can get a rash, people can end up with gut symptoms like diarrhea, they also can end up with it attacking the lungs and causing what we call a pneumonitis lung inflammation or brain symptoms, so, almost anything. Now, those are rare, and we can treat them with steroids. But, people need to be aware that if something new is happening, they need to alert their doctor. I think sometimes, there’s this false impression that immune therapy is completely safe, but, it’s not. And, all of the treatments that I’m talking about are designed to help people live better and live longer when they’re dealing with lung cancer, but they all also have risk.

And so, it’s just really important to have those discussions with the care team as you’re starting something new about what are the things I need to be watching for and to know how to reach people if you’ve got a new and concerning symptom, especially if you’re starting on something new.

Katherine:                  

That’s all really helpful information. Thank you, Dr. Wakelee. We have a question that we received from an audience member earlier. Jeff asks, “How do you know if your lung cancer treatment is working?”

Dr. Wakelee:              

So, there are a lot of ways of knowing if treatment is helping. So, the one I rely on the most is, “Does the patient overall feel better?” That is difficult to say exactly how. Sometimes people are having breathing problems; they feel that that’s better. Sometimes their energy’s lower. They feel better. It can be vague. We also use scans. So, we tend to get scans, depending on the treatment we’re giving, every couple of months plus or minus, sometimes, every three months to help track what’s actually going on. But occasionally, there are discrepancies.

So, sometimes, the scan, is it better? Is it not better? Can’t really tell. And then, you’re always taking that, “How does the patient feel?” So, usually, if the scans are better, the patient feels better. It’s easy. Usually if the patient’s feeling worse and the scan looks worse, clear decision. Not a good one, but clearly, we need to do something different. But sometimes, you’re left, and especially this happens with the first scan because you get a scan, it takes a little while, you start the new treatment, then you get the next scan, how much of the changes happened before you started the new one and how much didn’t? So, these can be more challenging conversations, but generally if the patient’s feeling a little bit better, the scan’s unclear, we usually say, “You know, let’s give this treatment a little bit more time.” We also, I think your question was specifically around how do we tell if it’s working, but, you also often need to be thinking about, “Well, what’s it doing that’s negative to the person and is that potential, those side effects worth the benefits we are or are not seeing?”

So, it’s kind of all of those things together. It can be a bit complex.

Katherine:                  

What goes into the decision to change therapies if it becomes necessary?

Dr. Wakelee:              

So, when we’re thinking about making a change, the way I always look at it is, is where we are today still okay or not? And, if it’s not, that would be because clearly the cancer’s growing or clearly the side effects are just not tolerable. Then, we decide together with the patient we need to do something different. And, when we think about what do we do next, we look at what have we’ve already done, did it work or not, if not, let’s do something more different. And so, let’s think about something that might be somewhat similar. When we’re dealing with targeted therapies, we have ways to try to figure out what changed in the tumor that made it now resistant or not working with that treatment. And so, with some of the pill drugs, there’s been a lot of research and understanding how does the tumor change that helps it evade, get away from, be resistant to whatever treatment you’re on.

And then, sometimes, we have other pill drugs that work in that particular setting, not always. With immune therapy, we’re trying to better understand why does the immune therapy stop working? Sometimes you can add back to it, like, you can add chemotherapy back to immune therapy alone or sometimes you can do radiation with immune therapy to get that response back. Or, add other combinations to it. So, that’s another thing that we’re working on. And then, like I said, if someone hasn’t ever had chemotherapy and the tumor’s become resistant, we’re going to be thinking a lot about chemo because that can play a role against so many different reasons that the cancer might not be responding to whatever treatments someone’s on. And then also, looking at how the patient’s feeling and doing, what their overall what we call “performance status, ” their sort of overall health, and how well do we feel with them that they’re going to be able to tolerate the next treatment because, you’re always having to weigh how much is this likely to help, and how might this harm in finding the right balance.

Katherine:                  

I’d be remiss if I did not bring up COVID-19, and, I’m sure a lot of patients are curious whether the vaccine is safe and effective.

Dr. Wakelee:              

So, we do believe the vaccine is safe and effective for patients living with lung cancer, and really important to be protected as much as possible. I was part of a group of other physicians around the world looking at the impact of COVID-19 on patients living with lung cancer. And, we collaborated with a group of physicians, Rayna Garcina was the lead. She was living in northern Italy at the time of the first wave, and so, was really face-to-face with it early on when there was so much we didn’t know. And, she gathered a group of us to watch and see, and what we were able to figure out before the vaccine was available was that people living with lung cancer who were overall healthy still except for their cancer were perhaps on a pill, targeted therapy, or immune therapy seemed to really not have that different of an impact compared to people who didn’t have lung cancer.

Chemotherapy was a little bit harder to see that, but didn’t seem to be such a big issue. It’s different than people living with, say, leukemias or lymphomas where the treatments are impacting their immune systems even more. They seem to have worse outcomes. A lot of lung cancer patients were okay, but still, it’s a higher risk. And so, we want to protect our patients as much as possible.

So, we are, now that we have the vaccines, strongly advocating vaccines for any patient who was living with cancer really for almost anybody because as a physician, we really think that makes a big impact. We have not seen any negative impacts of the vaccine on any aspect of cancer treatment. It does not have a negative impact on how well the cancer is treated by the therapies. We did notice that when someone gets the vaccine, they can get some enlargement of the lymph nodes. That’s part of having an immune response is your lymph nodes get enlarged. And so, we did get a bunch of scans that the vaccines came out showing, “Well, this person has some lymph nodes in the axilla, which is the armpit.”

And it seemed to be correlating with the side that someone had a vaccine. And then, those go away. And, this was actually an interesting medical literature thing because for people getting screened with mammograms for breast cancer, there were suddenly all these lymph nodes showing up. But that was actually a sign that the person was responding to the vaccine and it went away over time. And, it was a fine thing. It was just – I remember the first patient I had where that happened, we’re like, “Oh, well, that makes sense. Okay.” So, it’s okay. So, it was not cancer. It was just the immune response. But, yeah, so, we are recommending vaccines. There’s no data showing it is not working for lung cancer patients. The vaccines are less effective in people getting certain types of cancer treatment that are really suppressing the immune system. But even some response is better than none, and we’re still recommending the patients really do their best to stay safe with masks and things like that.

Katherine:                  

Dr. Wakelee, what are you excited about in lung cancer research right now? And, what do you want to leave the audience with? Are you hopeful?

Dr. Wakelee:              

I’m very hopeful. When I started treating lung cancer patients 20 years ago, we only had chemotherapy. And now, for metastatic disease, with using the right biomarkers, we can figure out so much more about the cancer to be able to personalize the treatment, for many patients, being able to offer pill therapies that are somewhat less toxic and highly active and give people more time. And now, we’re in the immune therapy revolution, which is helping a whole other group of patients living with lung cancer to be able to live with quality life for much longer. And the pace of discovery is just going up so quickly. And, I think that’s what I’m most hopeful about is just how much attention is being paid on lung cancer and finding better therapies that are going to help more people for a longer period of time. And again, I’m going to emphasize the screening is making a big difference also. If we can find the disease early, we can have an even bigger impact on people.

Katherine:                  

Dr. Wakelee, thank you so much for joining us today.

Dr. Wakelee:              

Thank you. Really enjoyed talking with you. Thank you.

Katherine:                   

And thank you to all of our partners.

To learn more about lung cancer and to access tools to help you become a proactive patient, visit powerfulpatients.org. I’m Katherine Banwell. Thanks for joining us today.

What Key Tests Impact Lung Cancer Treatment Choices?

What Key Tests Impact Lung Cancer Treatment Choices? from Patient Empowerment Network on Vimeo.

Dr. Isabel Preeshagul, a lung cancer specialist, provides insight about lung cancer subtypes and how test results may play a role in determining the best treatment option for patients.

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

See More From INSIST! Lung Cancer

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Transcript:

Katherine Banwell:

When it comes to lung cancer, Dr. Preeshagul, what important tests should patients undergo that help in making treatment decisions?

Dr. Preeshagul:

So, it’s important to obviously confirm the diagnosis and make sure that it’s lung cancer, first of all. After that, you need to know the histologic subtypes. So, I mean, is this non-small cell, or is it small cell lung cancer?

And the difference between those two, it’s very important. They are not the same. Their treatments are different. Their prognosis is different. The staging is different. Everything is different. If you have non-small cell lung cancer, it’s important to know if you have adenocarcinoma or squamous cell carcinoma, large cell, neuroendocrine. It’s really important because the treatments vary. The prognosis varies. And how we approach those patients is different.

In addition to that, over the past 10 years, we have really come to understand the importance of next-generation sequencing testing, which I know we’re going to get to. But evaluating to see if your patient harbors any mutations or alterations that could be targetable because that would really change your treatment plan.

Katherine Banwell:

All right. So, let’s get to some of that testing. What is biomarker or molecular testing?

Dr. Preeshagul:

Sure. So, we use a lot of these terms synonymously. So, alteration, mutation, positive biomarkers, these are all basically one and the same. So, if you look at lung cancer 20 years ago, we really didn’t know about any of these. You had lung cancer, you got X, Y, and Z chemo. And that really was it.

But with the discovery of EGFR alterations and realizing that some patients harbor an EGFR mutation, and this mutation is what’s driving their tumor and then the discovery of erlotinib, or Tarceva, we realized that it’s important to evaluate for the presence of these mutations.

So, these are somatic mutations that occur within your tumor and drive your tumor to grow, and some of these alterations are targetable.

But some of these alterations that we find, unfortunately, and the majority of them, we don’t really know the significance of them as of yet, or we know the significance of them, but we don’t have a magic bean to treat them. But that does not mean that there won’t be something in the future.

Expert Perspective: Exciting Advances in Lung Cancer Treatment and Research

Expert Perspective: Exciting Advances in Lung Cancer Treatment and Research from Patient Empowerment Network on Vimeo.

What are the latest advances in lung cancer treatment and research? Dr. Isabel Preeshagul shares information about new treatment approvals, an update on targeted therapies, and new clinical trial approaches.

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

See More From Engage Lung Cancer

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Transcript:

Katherine Banwell:

Dr. Preeshagul, when it comes to lung cancer research and emerging treatment options, what specifically are you excited about? 

Dr. Preeshagul:

So, honestly, I feel that my interest and excitement are getting pulled in a million different directions as of now. Over the past 16 months, we’ve had 10 approvals in lung cancer, which is unheard of. 

Katherine Banwell:

Wow. 

Dr. Preeshagul:

It’s been a very, very, very busy time for us as thoracic oncologists, which is really exciting. 

I feel that we’ve really come to the forefront of cancer research, which is outstanding. In terms of what makes me excited, right now, I think it’s probably two things. There have been genetic alterations, somatic, that have really been almost like the orphan child in lung cancer. And we have unfortunately had to tell patients, “Listen, you have this KRAS G12C alteration. We know that it portents a poor prognosis. We know it’s more aggressive, but we don’t have anything for you that can target that.” 

And as of recently, within the past two months, we had this approval for a drug called sotorasib (Lumakras). This is based on the AMG 510 study. And it is a targeted therapy for patients with KRAS G12C, and the responses have been excellent. 

So, finally, we have something. So, it makes me feel good that when I have a patient that unfortunately has this alteration, I no longer have to give them the same song and dance, that I can talk about sotorasib and talk about it with confidence and talk to them about the data. And the same thing is true for patients with an EGFR exon 20 alteration with amivantamab that just got approved. So, it is now, I feel, that research is now unveiling these orphan alterations that we are now having targeted therapies for. 

So, that makes me excited. Also, something else that’s making me excited is the fact that we’re realizing and learning to anticipate these resistance alterations. So, we know if you have an EGFR mutation for say, we know now that, unfortunately, at some point, the treatments that we’re going to give you, this targeted therapy, this pill called osimertinib (Tagrisso) in the frontline setting, for some patients, unfortunately, at some point, it’s not going to work for you anymore. 

And this is because the cancer gets smart. It develops these resistance alterations. It knows how to usurp the osimertinib, and resist it, and make an alternate pathway, or change its form, turn into small cell, or come up with another alteration that makes the osimertinib not work. 

So, we’re realizing to look for these alterations earlier, faster than when a patient starts progressing, and anticipating them. So, our trials are now being designed in a way with combination therapy to figure out a way to outsmart this cancer. We always have to be one step ahead. And unfortunately, cancer is still many steps ahead of us. But we are learning to be smarter. 

Lung Cancer Treatment Decisions: What Should Be Considered?

Lung Cancer Treatment Decisions: What Should Be Considered? from Patient Empowerment Network on Vimeo.

What should be considered when making lung cancer treatment decisions? Dr. Isabel Preeshagul shares the factors that may affect treatment options, as well as how the patient can collaborate with their healthcare team for optimal care.

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

See More From Engage Lung Cancer

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Transcript:

 Katherine Banwell:

Dr. Preeshagul, let’s start with you introducing yourself, please.

Dr. Preeshagul:

So, my name’s Isabel Preeshagul. I’m a thoracic medical oncologist at Memorial Sloan Kettering Cancer Center, which is a large academic cancer center in the Northeast. And I’m part of a group of 24 thoracic oncologists.

I specialize in treating patients with non-small cell lung cancer, small cell lung cancer, mesothelioma, and some other thoracic malignancies but most really just focused on lung cancer. I have a very strong research interest in predictive markers for response to immunotherapy as well as targeted therapy.

Katherine Banwell:

Excellent. Thank you so much. What are the considerations when choosing a treatment for lung cancer?

Dr. Preeshagul:

So, that is a very weighted question. And I could talk about that for forever. But to try to be as succinct as possible, the most important thing is to really look at who you’re treating in front of you and try to treat the patient as a whole. It’s not only their diagnosis and their histologic subtype and their stage that’s important.

You really need to think about what’s important to the patient. Is someone a concert pianist or a violinist and giving them a treatment that could potentially cause neuropathy, could that be life altering for them? Or, are they of child-bearing age? What are their priorities?

So, that’s really important to me. Social aspects of a patient’s life, religious aspects, beliefs, ethical beliefs, all of that you need to take into consideration. And then getting more granular, you need to know about the tumor biology.

Do they have any driver alterations? Do they have any other predictive markers that may help you plan your treatment? So, it’s a lot of different things that go into treatment planning.

Katherine Banwell:

Just remind us what neuropathy is.

Dr. Preeshagul:

Sure. So, neuropathy is when the nerves that are in, I guess you could say, your fingers and toes start to damaged.

This can happen from diabetes, from having glucose that is too high for too long, or it can happen from certain chemotherapy agents that can affect the fine nerves in your fingers and toes and cause them to go numb. And this can really be painful. It can be life-altering. It can keep you up at night. It can make your sensation decrease.

So, if you’re walking on the floor, you may not feel a fine, little nail, or you may not even really feel the floor. And if you’re really focused on using your hands for playing the piano or violin or sewing or even any other kind of activity, it can really affect how well you’re able to perform.

Katherine Banwell:

Yeah. What is the role of the patient in making treatment decisions?

Dr. Preeshagul:

So, I think every doctor will give you a different answer for this. But for my practice, I really make sure that the patient is part of the team as well as family members, as long as the patient gives permission. I run everything by the patient, of course. I give them all the possible options ranging from ones that I think would be most efficacious to ones that I think are other options and of course, the option of no treatment, which is always an option, and sometimes, the best options.

So, I really say these are the things that we can offer you, but what do you feel most comfortable with? What’s important to you? And sometimes, patients are taken aback by this question because some patients like to be told, “Well, this is what we’re going do, and this is when we’re starting,” and X, Y, and Z. That’s not how I practice.

And it’s really important to me that the decisions come from the patient but are guided by me and my team.

Katherine Banwell:

Why is it important for patients to feel like they have a voice in their treatment?

Dr. Preeshagul:

So, that is such a good question. And I think a lot of it comes from the fact that you have a patient that had a completely normal life and all of a sudden get delivered this life-altering news that they have cancer. And everything that they had control over just seems to completely go out the window just in a matter of seconds.

So, making sure that a patient is back in the saddle and has control again and feels like they know what the next steps and feels like they know what they can expect is really important to them from what I can see. And I think that is something that allows them to feel like they’re a little bit more like themselves again.

They come to meet me. They don’t know anything about lung cancer. Their world has been completely rocked. And when they know their treatment plan and they know their stage and they know what to expect and they’re kind of a little bit more on autopilot, I can see in some patients them being able to exhale a little bit and feel like they’re in control again, and they know what – every Monday, I’m going to come and see Dr. Preeshagul. I’m going to get my treatment. I might not feel so good the next couple days, but I know the week after and the week after that, I might feel a little bit better. And they kind of are back in control again.

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. 

See More from Best Lung Cancer Care No Matter Where You Live


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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. 

See More from Best Lung Cancer Care No Matter Where You Live


Related Resource:

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


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. 

See More from Best Lung Cancer Care No Matter Where You Live


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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. 

See More from Best Lung Cancer Care No Matter Where You Live


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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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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.

See More from Best Lung Cancer Care No Matter Where You Live


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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.  

Stage IIIA Non-Small Lung Cancer Survivor Shares Importance of Listening To Your Body

Stage IIIA Non-Small Lung Cancer Survivor Shares Importance of Listening To Your Body from Patient Empowerment Network on Vimeo.

Lung cancer survivor Terri has had a long journey to her diagnosis. A “tiny” spot on her lung was initially dismissed and eventually led to her diagnosis a decade later with stage IIIA non-small lung cancer. Learning her tumor was KRAS-positive allowed her to make the most informed treatment decisions for her lung cancer. Watch as she shares her journey and advice for taking control of your health and getting the best care.

Terri’s advice, “Hope shared is hope multiplied. Take control of your journey and get connected. These actions are key to staying on your path to empowerment.”


Transcript:

My name is Terri. I live in Charlotte, North Carolina.  In 2017, I was diagnosed with lung cancer. 

Nearly a decade prior to my diagnosis, I went in for a routine physical. Checking the lungs, the medical staff said they heard something. I was sent for a scan and upon closer inspection, the radiologist confirmed there was a “tiny” spot. The expert who interpreted my results said “there is nothing to worry about, but you might want to follow up on that at some point.” I never pushed, nobody pushed.

 With both experts not concerned, I was relieved. I was too busy with my life and family to worry about “nothing.” I just let it go and began taking the newly prescribed asthma medication.  

Several years later,  I found myself struggling to breathe in humidity.  At first, I thought I was just out of shape, but it persisted. Maybe my asthma was just out of control? Thinking it was allergies, I began feeling worse, lasting the entire summer. My inner voice told me there was something more going on.  Ignoring it through the Autumn,  because I didn’t want something minor to slow me down, I pushed my body until I was nearly ready to collapse from this sinus infection. 

At Christmas, I headed back to the doctor’s office where she could hear the fluid in my lungs. The fluid highlighted a suspicious mass in the scan. Those last few weeks couldn’t pass quickly  enough for my January appointment with a specialist.

January came, and I saw the pulmonologist for closer examination. I’ll never forget his words, “I see CT scans  in and out every day and if I thought this was lung cancer, I’d tell you right now.” I immediately thought about the radiologist who saw the “tiny” spot years earlier and dismissed it as nothing. A few weeks later a biopsy confirmed my worst fears. It was indeed a diagnosis of stage IIIA non-small cell lung cancer.

My oncologist presented my case before a tumor board of experts where they confirmed I had KRAS-positive lung cancer.  This lung cancer biomarker test guided my treatment path.  Learning my tumor was KRAS-positive allowed me to make the most informed treatment decisions for my lung cancer. The best course for me at the time was chemo, followed by a lobectomy

Since then, I’ve had other treatments with new outbursts of lung cancer and continue to get regular scans. I can’t go back to the original ”tiny” spot, but what I learned is, “You either fight, or you die.” I had to accept what I couldn’t change and change what I could. 

As a full-time lung cancer advocate, I want to ensure patients feel confident to speak up and ask questions when in doubt and make sure no one feels as alone like I did at the start of my lung cancer journey.  My advice to other lung cancer patients:

  • Tune into your body and listen
  •  Ask the questions to learn from your healthcare team
  •  Take control of your journey
  • Connect with others that have a similar diagnosis, to learn & share

Hope shared is hope multiplied. I’ve made it my mission to empower others by sharing my story. Take control of your journey and get connected.

 These actions are key to staying on your path to empowerment.