LC Treatments and Clinical Trials Archives

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

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

Lung Cancer: Gina’s Clinical Trial Profile

Lung Cancer: Gina’s Clinical Trial Profile from Patient Empowerment Network on Vimeo.

Lung cancer survivor Gina was shocked after receiving her diagnosis at age 38. Watch as she shares her lung cancer journey including her diagnosis, treatment, clinical trial experience, and advice to other patients. In Gina’s words, “So what I’ve learned is that clinical trials are really the best and newest care for patients, and I feel like all patients should have access and have the experience of a clinical trial.”

Patient-to-Patient Diverse Lung Cancer Clinical Trial Profiles

Transcript:

Gina:

My lung cancer story is probably not that unique. There are actually a lot of people that are just like me. I was 38 years old, a nurse at the peak of my physical health, and I was actually training for a triathlon. And I just developed a cough, and no one would take me seriously. As a nurse, I felt like something was wrong because I was losing weight, and I wasn’t trying, and eventually I had to self-pay for a chest X-ray, and the chest X-ray showed that I had something going on in my left lung, but they weren’t really sure what it was. So, I took that chest X-ray to the emergency room for exactly what they tell you not to — a cough, and thankfully, the ER doctor took me very seriously and finally that led to a stage IV incurable, inoperable lung cancer diagnosis. As a nurse, I knew the severity of, of the diagnosis, and I knew that also there was a possibility for some new drugs, and so I’m so thankful that my doctor in Memphis knew to do biomarker testing, he found out that I was ALK-positive (anaplastic lymphoma kinase). My very first thing that had to happen was I had brain surgery.

And I feel like I’m a very lucky girl to have survived all that I have, and I watched the pain in my husband’s eyes as I rolled back from brain surgery and the f as I woke up from that brain surgery. And then the next thing was my left lung was removed, and I remember seeing my two boys and as I rolled back, how they were afraid for me to lose my lung, something that they felt like I needed. And so again, we experienced so much joy as I came back from that lung surgery and eventually recovered, and then I remember the first day that I actually was able to run a mile again, and that was so incredibly exciting for me. So now I was diagnosed in 2015, and now it’s 2021 and through the years, I went through each targeted therapy and cancer outsmarted it, and so the targeted therapy failed me eventually. And each one lasted about a year or so, and I think that through these years, I kept thinking that science would keep up with me, and I kept riding that wave of science and research, and I was so thankful. But we knew that it was incredibly important to continue to fund research for lung cancer, because when it comes to lung cancer, it seems like even though it’s the number one cancer killer of men and women and anyone with lungs can get it. The funding for it is so low because there’s still a thought process that smoking is the cause of lung cancer, and while we know that there’s a lot of people that are just like me who have absolutely no risk factors, we know that research is incredibly important for this disease. So, fundraising for lung cancer research and through our group, ALKpositive.org was incredibly important for me.

I just kept hoping that the next thing would happen, but I finally ran out of the last targeted therapy, and so that’s when I started looking for a clinical trial. And right now, it’s not that easy to find a clinical trial. Within our group, we have some amazing volunteers and members who really work to put the clinical trials out there for ALK-positive patients and to make sure that we know that we’re aware of them. And so anyway, I had a great friend who helped me look through the clinical trials, and eventually I found the perfect clinical trial for me. But it required me to travel to Boston, Boston quite a bit, and so that was really difficult raising two young boys and having my husband, who is also working, not be available. It was just really not fitting with our family to be able to travel and be away from my family so much, so I kept looking for clinical trials, and I finally found one that was about 200 miles away. And it still requires me to leave my family about every two weeks or so, sometimes just for a blood draw, but I’m so incredibly encouraged, because we found out that the clinical trial of this combination drug is working, and we found that cancer though it had kind of spread everywhere in my body, in my brain and in my pancreas, and even around my pulmonary artery, all of the cancer had decreased by about 50 percent. So, I’m incredibly encouraged, and that’s where we are now in the journey, and we’re just going to hope that the clinical trial keeps working and that new options are coming down the pipeline for other lung cancer patients.

A clinical trial is something that has, my perception has completely changed about. I thought when I was first diagnosed, a clinical trial was kind of like being a guinea pig, and now I think that it’s more like being a pampered poodle. So, what I’ve learned is that clinical trials are really the best and newest care for patients, and I feel like all patients should have access and have the experience of a clinical trial. We know that sometimes clinical trials don’t always pan out to have the best thing, but I see over and over again that clinical trials for patients have a lot of science behind them, and it’s an opportunity for patients to try the latest and greatest.

If you’re considering a clinical trial as an option, the most important thing is for you to become informed, really make sure you understand some clinical trial, really understand what the expectations are of you, and make sure that you’re willing to do what’s required of the clinical trial, make sure, that also that it’s conducive to your lifestyle and to your family. I think those are the things that are the most important. A clinical trial is an opportunity for the latest and greatest, but you also have to make sure that you understand what’s required and make sure that you are okay with the requirements of the trial.

If I were to tell you how I’m feeling today, I would tell you that I’m feeling encouraged that I have so much hope for the future. Being a part of a clinical trial has…honestly, if I’m very, very truthful, it was scary at first. In fact, I even cried when I signed the clinical…the clinical trial consents. It was completely scary, but now that I’ve been into the clinical trial now about nine weeks, my last scans were really good and really promising, and so for me, I feel very, very hopeful for the future, and I’m hoping that this is a drug combination that can be brought to other patients and that they can all benefit from this clinical trial and from my experience.  

Lung Cancer: Donna’s Clinical Trial Profile

Lung Cancer: Donna’s Clinical Trial Profile from Patient Empowerment Network on Vimeo.

Lung cancer patient Donna had a sub-optimal experience with her first treatment regimen. Watch as she shares her lung cancer journey, knowledge and benefits gained from a clinical trial, and her advice to patients seeking additional treatment options.

Patient-to-Patient Diverse Lung Cancer Clinical Trial Profiles

Transcript:

Donna: 

I’m Donna, I am 68 years old, and I was diagnosed with lung cancer in 2012. 

When I was first diagnosed with lung cancer, I was put on a regimen of paraplatin (Carboplatin) and bevacizumab (Avastin) drugs. I received that for four or five months and did not do particularly well on it.  My body did not react well to those chemicals, my tumors, however, did respond as long as I was getting the drug. 

After we discovered that my tumors were not going to respond to chemo unless I was getting it all the time, my doctor suggested that I either go on another drug, chemo drug that was even harsher than what I had been on and did not have as good of results or suggested that I might do a clinical trial. I had been told that I probably only had about four months to live. And I decided that, number one, I was in no hurry to be sicker than I already was and number two, that if there was a way I could help future patients by participating in a trial that the trial was the way I wanted to go. I never ever assumed that I would benefit from being in a clinical trial, I was very uninformed about clinical trials. 

A clinical trial is a way that the pharmaceutical company or researchers test certain drugs. They will see if the drug works at all, it moves to humans and out of the laboratory, and everything doesn’t necessarily work the same way or on humans as it did in the lab. So…in the Phase III trial like I was in, by that point in time, they’re learning how in the fairly general population, how the drug is going to react, if it’s actually going to work, how much of a dose is the right dose, and how frequent it should be. The clinical trial is just to provide the information that’s needed to determine whether a drug should go forward into the general population or not.  

One tumor started growing again, and I chose to have radiation, which made me have to get out of the clinical trial. But after radiation, I went back onto the same drug that we had been testing through the clinical trial, because I had responded so well through it, and I stayed on that drug until from 2013 until 2019. And during in April of 2019, I quit having any kind of treatments, and so now I’m just monitored every four months to make sure that my tumors have remained stable and so far, so good. 

I would go into a clinical trial without hesitation if my tumors begin to grow again, my first consideration will be to get into another clinical trial, you are getting the cutting-edge drug. And not only that, while I was in the clinical trial, I had a researcher and I had my oncologist, I had a lot of people really following my health. I had multiple, far more scans done, which some people might look at as a negative, but they were really following me closely to make sure that my response was what it needed to be. You can get out of the clinical trial, you are not stuck in a clinical trial. So, if you get into it and you are either sick or if your tumors are not responding the way you hope they would, you’re not stuck in a clinical trial, and that’s an important thing to know. To me, there will never be another option that I will consider first, I will always consider the clinical trial first. And because I felt that the quality of care I got was higher, and it also saves you a lot of money because at least the drug itself is going to be provided at no cost. 

So that’s a huge consideration too. 

I would not be afraid to look into clinical trials, I would never accept a doctor telling me that there were no options for me. I have friends who had doctors tell them that they just didn’t think there was anything more that could be done, they needed to go into hospice. My advice is to look for a different doctor, because that’s not always true. And clinical trials are not necessarily easy to find, but I would certainly do my due diligence and look into whether there is one that’s good for you. And I would also strongly recommend that you immediately go through genetic testing so that you know what kind of mutations you might have, because that will drive the kind of clinical trial you might be wanting to get into, and also just the treatment in general. 

What Are Biomarkers and How Do They Impact Lung Cancer Treatment Options?

What Are Biomarkers and How Do They Impact Lung Cancer Treatment Options? from Patient Empowerment Network on Vimeo.

What are lung cancer biomarkers, and how do they impact treatment options? Dr. Isabel Preeshagul defines biomarkers and explains how different biomarkers may help determine treatment options and aid in predicting treatment response. 

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

Related Resources:


Transcript:

Katherine Banwell:

Well, let’s define a few terms that are often confusing for patients. What are biomarkers?

Dr. Preeshagul:

Those are somatic alterations in the tumor just like EGFR, or ALK fusions, or MET exon 14, or MET amplification, or KRAS G12C.

These are all genes that are altered in the tumor. And these are genes that drive the tumor to grow. There are also other markers like PD-L1, which is a marker for response to immunotherapy. And there are various markers.

I could go on and talk about it for hours, but those are the more common ones that we know how to treat and how to handle and prognosticate.

Katherine Banwell:

And another term that’s sometimes confusing, what is a genetic mutation?

Dr. Preeshagul:

So, for genetic mutations, you have germline, and you have somatic. So, a germline mutation may be something like a BRCA1 or a BRCA2 that we see in patients with breast cancer or prostate cancer versus a somatic mutation which would be EGFR that I had mentioned or ALK fusion. So, germline mutations are the ones that we worry about being heritable.

And somatic mutations are those that are not thought to be heritable but thought to happen spontaneously within the tumor itself and cause the tumor to grow. We are constantly learning more about these though, however. But it’s really important to talk with your doctor to see if you have a germline mutation or a somatic mutation or if you have both.

And it is never wrong to seek an opinion with a genetic counselor to make sure that everyone in your family is safe, that you’re up to date on age-appropriate cancer screening, and that your family gets screened appropriately as well if indicated.

Katherine Banwell:

Are there specific biomarkers that affect lung cancer treatment choices?

Dr. Preeshagul:

Oh, definitely. One that I had mentioned is PD-L1. And this is a marker that we look for expression. So, based on FDA approval for pembrolizumab, if you have an expression of 50 percent or more, you are able to get immunotherapy alone in the upfront setting. If you have less than 50 percent, we often give you chemotherapy plus immunotherapy. And that’s based on a clinical trial known as KEYNOTE-189.

Other markers such as EGFR, as I had mentioned, ALK fusions, RET, NTRK, MET exon 14, ROS1, KRAS, HER2, you name it, those are alterations that we look for ideally in the upfront setting as well and can really affect treatment planning.

And those patients that harbor mutations like EGFR and ALK and ROS1 or MET exon 14, we know that these patients do better with targeted therapy upfront, not standard-of-care chemo. So, it’s really important to know about the presence of these alterations before you start treatment if possible.

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

Related Resources:


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

Related Resources:


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


Related Resource:


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. 

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


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Transcript:

Dr. Nicole Rochester: 

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

Dr. Olugbenga Okusanya: 

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

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

Dr. Nicole Rochester: 

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

Dr. Olugbenga Okusanya: 

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

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

Dr. Nicole Rochester: 

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

Dr. Olugbenga Okusanya: 

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

Dr. Nicole Rochester: 

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

Dr. Olugbenga Okusanya: 

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

Empowering Lung Cancer Patients to Increase Their Treatment Options

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

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

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Transcript:

Dr. Nicole Rochester: 

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

Dr. Olugbenga Okusanya: 

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

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

Dr. Nicole Rochester: 

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

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.  

What You Need to Know Before Choosing a Cancer Treatment

What You Need to Know Before Choosing a Cancer Treatment from Patient Empowerment Network on Vimeo.

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What steps could help you and your doctor decide on the best treatment path for your specific cancer? This animated video explains how identification of unique features of a specific cancer through biomarker testing could impact prognosis, treatment decisions and enable patients to get the best, most personalized cancer care.


If you are viewing this from outside of the US, please be aware that availability of personalized care and therapy may differ in each country. Please consult with your local healthcare provider for more information.


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TRANSCRIPT:

Dr. Jones:

Hi! I’m Dr. Jones and I’m an oncologist and researcher. I specialize in the care and treatment of patients with cancer. 

Today we’re going to talk about the steps to accessing personalized care and the best therapy for YOUR specific cancer. And that begins with something called biomarker testing.

Before we start, I want to remind you that this video is intended to help educate cancer patients and their loved ones and shouldn’t be a replacement for advice from your doctor.

Let’s start with the basics–just like no two fingerprints are exactly alike, no two patients’ cancers are exactly the same. For instance, let’s meet Louis and another patient of mine, Ben. They both have the same type of cancer and were diagnosed around the same time–but when looked at up close, their cancers look very different.  And, therefore, should be treated differently.

We can look more closely at the cancer type using biomarker testing, which checks for specific gene mutations, proteins, chromosomal abnormalities and/or other molecular changes that are unique to an individual’s disease.

Sometimes called molecular testing or genomic testing, biomarker testing can be administered in a number of ways, such as via a blood test or biopsy. The way testing is administered will depend on YOUR specific situation.

The results could help your healthcare team understand how your cancer may behave and to help plan treatment. And, it may indicate whether targeted therapy might be right for you. When deciding whether biomarker testing is necessary, your doctor will also take into consideration the stage of your cancer at diagnosis.

Louis:

Right! My biomarker testing results showed that I had a specific gene mutation and that my cancer may respond well to targeted therapy.

Dr. Jones, Can you explain how targeted therapy is different than chemo?

Dr. Jones:

Great question! Over the past several years, research has advanced quickly in developing targeted therapies, which has led to more effective options and better outcomes for patients.

Chemotherapy is still an important tool for cancer treatment, and it works by affecting a cancer cell’s ability to divide and grow. And, since cancer cells typically grow faster than normal cells, chemotherapy is more likely to kill cancer cells.

Targeted therapy, on the other hand, works by blocking specific mutations and preventing cancer cells from growing and dividing.

These newer therapies are currently being used to treat many blood cancers as well as solid tumor cancers.  As you consider treatments, it’s important to have all of the information about your diagnosis, including biomarker testing results, so that you can discuss your treatment options and goals WITH your healthcare team.

Louis:

Exactly–Dr. Jones made me feel that I had a voice in my treatment decision. We discussed things like potential side effects, what the course of treatment looks like and how it may affect my lifestyle.

When meeting with your healthcare team, insist that all of your questions are answered. Remember, this is YOUR life and it’s important that you feel comfortable and included when making care decisions. 

Dr. Jones:

And, if you don’t feel your voice is being heard, it may be time to consider a second—or third—opinion from a doctor who specializes in the type of cancer you have. 

So how can you use this information to access personalized treatment?

First, remember, no two cancers are the same. What might be right for someone else’s cancer may not work for you.

Next! Be sure to ask if biomarker testing is appropriate for your diagnosis. Then, discuss all test results with your provider before making a treatment decision. And ask whether testing will need to be repeated over time to identify additional biomarkers.

Your treatment choice should be a shared decision with your healthcare team. Discuss what your options and treatment goals are with your doctor.

And, last, but not least, it’s important to inquire about whether a targeted therapy, or a clinical trial, might be appropriate for you. Clinical trials may provide access to promising new treatments.

Louis:

All great points, Dr. Jones! We hope you can put this information to work for you. Visit powerfulpatients.org to learn more tips for advocating for yourself.

Dr. Jones:

Thanks for joining us today. 


This program is supported by Blueprint Medicines, and through generous donations from people like you.

Genetic Testing: How Could Results Impact Lung Cancer Care?

In this podcast, lung cancer experts Dr. Erin Schenk and Dr. Tejas Patil discuss the role of genetic testing results in lung cancer care—including treatment decisions—and share important advice for self-advocacy.

About the Guests:
Dr. Tejas Patil is an academic thoracic oncologist at the University of Colorado Cancer Center focused on targeted therapies and novel biomarkers in lung cancer. Learn more about Dr. Patil, here: https://www.cudoctors.com/Find_A_Doctor/Profile/24489.

Dr. Erin Schenk is an assistant professor in the division of medical oncology at the University of Colorado Anschutz Medical Center. Learn more about Dr. Schenk and her lung cancer research here: https://www.cudoctors.com/Find_A_Doctor/Profile/27915.


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