To start, should there be a concern for delayed treatments and disease progression or mortality when it comes to the COVID-19 pandemic?

 I feel like individuals who are at high risk of developing lung cancer are not showing up for their lung cancer screenings. And this will definitely increase the number of patients who will be diagnosed with advanced stage lung cancer. Also, I think what concerns us and health care professionals are patients who are canceling or postponing not only their scans and their follow-up scans, but their wellness visits due to COVID fears.

Because of these concerns, how can we try to address these fears so that we combat any of these potential challenges down the road?

 So I think that information is key. It's important to convey to patients that hospital systems are taking great care to protect against COVID spread within the hospital. I know that in some hospitals, COVID patients and critically ill persons enter through different parts of the hospital than (patients coming in for) scans and office visits. And hospital staffs are also screening everyone who enters for COVID symptoms and limiting who can go into the hospital. And because we know that early detection saves lives, patients should not skip their treatments or appointments or even their yearly wellness exams.

You mentioned that one of the challenges is that patients are skipping their appointments. What are some of the other challenges that we've seen in lung cancer during this pandemic?

 You know, all of us are experiencing challenges right now during the pandemic. What I'm seeing universally across all of our communities is the feeling of social and emotional isolation.

What can we do to address that kind of a challenge and help others feel less socially isolated during this time?

 So, a huge benefit is the technology that we have today at LUNGevity, we have many online communities for patients to utilize. So last year, when the pandemic began, we pivoted our in-person events to a virtual platform. And we also partner with other organizations to engage within our lung cancer community. We also have a virtual patient and caregiver meetup via Zoom four times a week, and we're considering doing it daily to meet all of the challenges that our patients face.

Are there other resources available that patients can resource during these trying times?

 Yes, absolutely. Patients can utilize our lung cancer helpline for professional psychosocial support, financial support and access to resources. We also have a lung cancer mentor program called Lifeline that patients can sign up for, and that's where they can request a support mentor. We also have many vibrant online communities and message boards.

To bring it all together, what is your biggest piece of advice for an individual that has a lung cancer diagnosis, but is trying to make their way through this pandemic?

 My biggest piece of advice would be to let them know that they are not alone. So, while we can't physically be together, there are ways that a patient can plug into our community for social interaction, peer support and advice, and visit our website lungevity.org, to learn more and get information about the disease itself.

COVID-19 and Lung Cancer

 Can you explain how biomarkers affect treatment options in lung cancer?

 Lung cancer right now is leading precision medicine in oncology and biomarkers are a huge piece of precision medicine. When we think of precision medicine, we think of matching the right patient to the right treatment at the right time. And biomarkers are an important piece of this journey.

Biomarkers are unique characteristics of a patient's lung cancer. And determining which type of biomarker a particular lung cancer has is important matching a patient to the right treatment. So, to sum it up, I think biomarker testing is the first piece to making sure that the patient gets matched the right treatment.

 We do unfortunately hear about disparities when it comes to biomarker testing. Can you discuss what some of these disparities are and how we can address them?

 When I think of disparities and biomarker testing, I think of them at different levels. I think one disparity in testing is at the policy level. And when I think of policy, I think of Medicaid coverage. We know that not all Medicaid coverage in different states covers biomarker testing. So that's a policy-level disparity.

And then I think of patient-level disparities. And when I think of patient level disparities, we do know that African American patients are less likely to receive biomarker testing. And those patients who are underinsured or uninsured, they are also less likely to receive biomarker testing. So, there are a lot of documented disparities in this area.

And in terms of thinking of solutions, as you can imagine, it's a very, very complex process. And we need all different stakeholders at the table. And we also need to educate different stakeholders about these disparities. And therefore, again, if we were to really solve disparities in biomarker testing, the way to do so is to educate policymakers, educate providers, and also educate patients to make sure that they get access to biomarker testing.

 Why is patient education and health care provider education so important around biomarker testing?

 At LUNGevity Foundation, we believe that an educated patient is also an empowered and an engaged patient in their treatment decision making. And therefore, we feel that educating a patient about biomarker testing is incredibly important so that they are aware that they're getting the right test and the right treatment at the right time.

And the other side of the coin is educating providers. And that's incredibly important as well. And we do know that all oncologists are not recommending biomarker testing. And this is because sometimes they're not aware of the treatment advances in lung cancer. And therefore, educating oncologists about the latest treatment advances and how biomarker testing can make sure that they can prescribe these new treatments to their patients is incredibly important.

What is the main thing that patients should know about biomarker testing so that one they're informed and know what to ask about?

 I would actually say that patients need to know about two things when it comes to biomarker testing. The first question a patient should ask themselves and their health care providers is: Did I receive biomarker testing? And the second important question to ask is: Was my treatment decision based on my biomarker test results?

When I think of patients having a candid discussion about biomarker testing, I recommend that patients ask their physicians whether they receive testing, what their test results mean, where they can access their test results. Were the test results covered by insurance? And the most important question being: What are the test results used to make treatment decisions?

To bring it all together, are there any resources that you can recommend for patients so that they can learn more about biomarker testing?

 I have to put in a plug for LUNGevity Foundation. Here, we have an extensive array of resources for patients who want to educate themselves about biomarker testing. We have a comprehensive section on our website called Lung Cancer One, which has lots of details on biomarker testing and how biomarker testing can make sure that patients have matched to the right treatment at the right time. We also have downloadable booklets which you can also find on our education section in case you want to print something out and take to your doctor. And last but not least, we have one-pagers, which lists important questions to ask your doctor when you're talking about biomarker testing, what to look for in your biomarker test report. Again, these are all available at our website which you can download and print.

Biomarker Testing in Lung Cancer

What is the difference between a small cell lung cancer and a non-small cell lung cancer diagnosis?

 As we know, lung cancer is an incredibly complex disease. In fact, it's a collection of different types of diseases. And the two broad groups of lung cancer are small cell lung cancer and non-small cell lung cancer. Traditionally, what we thought of as small cell lung cancer was based on the fact that these cancers looked very different under the microscope. In fact, small cell lung cancer was known as auto cell cancer in the past, because when you looked at these cells under the microscope, they looked like little grains of oats, and all the other lung cancers were classified as non-small cell lung cancer.

But today, thanks to the advances in our understanding of the biology of these diseases, we do know that small cell lung cancer is fundamentally different from non-small cell lung cancer, not just by how it looks under the microscope, but also how these cancers behave. And small cell lung cancers are also known as neuroendocrine tumors – neuro meaning that these cancers produce proteins that are often found in our brains and in our nervous system and endocrine meaning that these cancers can secrete hormones, just like our endocrine glands.

We hear about the fact that small cell lung cancer is different in the fact that it's fast growing. Can you explain what that means?

 Lung cancer is an incredibly fast =-growing disease. And we call it aggressive and fast growing because of two reasons. First, when you think of low-density CT screening, which is used to detect lung cancer, we know that small cell lung cancer is typically not detected through low density CT screening because it grows so quickly that you sometimes miss small cell lung cancer when you go from one scan to another. The second reason why we call it a very aggressive diseases is because of the fact that, traditionally, chemotherapy has been used to treat small cell lung cancer. And initially when you treated these cancers, the small cell lung cancer used to literally melt away. They used to vanish in response to the chemotherapy, but equally aggressively, the cancers came back. So, despite this initial response to chemotherapy, the cancer came back really quickly. And because of this reason, we call it a very fast -growing and aggressive type of lung cancer.

How has chemotherapy been a mainstay in small cell lung cancer?

 Chemotherapy has been incredibly important in the treatment of small cell lung cancer for the past 20 years. Now, again, when we think of small cell lung cancer, it's divided into early-stage and late-stage small cell lung cancer. When we think of early-stage small cell lung cancer, chemotherapy is used in combination with radiation and it's called chemoradiation. And sometimes chemotherapy is also used after surgery in small cell lung cancer in early-stage small cell lung cancer. Now, when we're thinking of advanced or late-stage small cell lung cancer, chemotherapy is often the main treatment that is given to patients after they're diagnosed with small cell lung cancer.

How have surgery and radiation also played a role in treatment?

 Surgery/radiation plays a critical role in the treatment of small cell lung cancer. Again, when we think of early-stage small cell lung cancer surgery, sometimes we used to remove a piece of the lung where the tumor is localized. And this is applicable only for really early-stage small cell lung cancer where the tumor is confined to one lobe of the lung. Now, when we think of radiation therapy, radiation therapy is used both for early stage as well as late stage small cell lung cancer. Now, in early-stage small cell lung cancer, radiation may sometimes be applied to the same area of the chest after chemotherapy to make sure that the cancer does not come back. But equally important is something called PCI or prophylactic cranial irradiation. Now in early-stage small cell lung cancer patients often do not have brain metastases, but very often, their oncologist will suggest that they get PCI, which is radiation to the brain to make sure that future metastases do not occur and hence the term prophylactic to make sure that you can stop future metastasis in the brain from occurring.

Now in terms of late-stage small cell lung cancer, again, radiation is very often applied to the same area of the tumor where after chemotherapy to make sure that the cancer is limited. But again, radiation is also used to relieve pain from bone metastasis, which is very common in small cell lung cancer. So, radiation is used in two ways to actually treat the cancer and also to improve the symptoms such as bone pain associated with small cell lung cancer.

What do we know about immunotherapy for small cell lung cancer?

 That is a fantastic question. If you'd asked me this question two years ago, I would have had a very different answer as we speak in 2021. Immunotherapy is becoming an important component of treating advanced age or late stage small cell lung cancer. As of now we have two immunotherapy combinations. And when I say combinations, I mean immunotherapy combined with chemotherapy to treat first-line small first-line advanced small cell lung cancer. Essentially, the first treatment that an advanced small cell lung cancer patient will receive. So immunotherapy is definitely becoming an important component of treating small cell lung cancer. And we're also seeing a lot of clinical trials in early-stage small cell lung cancer to see how immunotherapy can be used in early-stage diseases. So, I see immunotherapy becoming an important piece of the small cell lung cancer treatment journey.

With all these treatment options and modalities, why is the multidisciplinary approach really important for small cell lung cancer patients?

 That's an excellent question. And when we think of multidisciplinary care, we don't actually think of it in the context of small cell lung cancer. But again, it's becoming more and more important for small cell lung cancer because of the fact that multiple health care providers or multiple treating physicians will interact with the small cell lung cancer patient. For example, you'll have the medical oncologist very often who's going to decide the chemotherapy or immunotherapy regimen, then you'll have the radiation oncologist who's going to be deciding what type of radiation a patient should receive, whether it's going to be to the brain or whether it's going to be to the bones or whether it's going to be to the chest. And of course, in early-stage lung cancer, you'll also have a surgical oncologist who will be consulting with the patient to decide what type of surgery is recommended. But I think a fourth piece here is also palliative care physicians, because we must keep in mind that small cell lung cancer itself is a very aggressive disease, and it has a high symptom burden. And also, some of the treatments themselves come with a lot of side effects. And therefore, I feel a palliative care physician should be a part of this multidisciplinary team to make sure that both symptoms of the disease as well as side effects of the treatment are taken care of.

What do patients with small cell lung cancer have to look forward to in the treatment landscape?

 This is an incredibly exciting time for small cell lung cancer treatment. And this is because of the fact that again, if you'd asked me this question a few years ago, I would have given you a very different answer. But now we have a very, very deep understanding of the biology of small cell lung cancer. And this understanding of the biology is now finally translating into treatment. And one of the ways in which this is happening is again, we still think even small cell lung cancer as one disease. But that's changing right now. And we are learning that all small cell lung cancers are not the same. And the concept of biomarkers, the concept of precision medicine is entering the small cell lung cancer space. And I'll give you a very good example of that. In fact, LUNGevity Foundation is proud to have spotted some of the researchers who have actually discovered that immunotherapy, for example, may not be beneficial for all small cell lung cancer patients and may work really, really well for a group of small cell lung cancer patients. And I think this, this particular fact itself is going to change how we treat small cell lung cancer patients, moving away from that one size fits all. And the other piece, which is equally important as we are developing better drugs to be able to target some of these biomarkers that we are discovering. So, I think to summarize, what I see happening is the treatment of small cell lung cancer is going to become incredibly personalized in the next couple of years.

Small Cell Lung Cancer

 What are some of the psychosocial issues that patients might face after receiving a lung cancer diagnosis?

 Lung cancer has long been a disease with a stigma. Patients can feel blame or guilt associated with outside perceptions or misconceptions about the disease. Many patients don't have lung cancer-specific support groups in their communities. And they can feel isolated and then add in the challenges of a pandemic. And we have patients who are feeling heightened anxiety and depression associated with the lung cancer diagnosis.

 Another area that we talk about a lot when it comes to the psychosocial aspect of lung cancer is scanxiety. Can you talk a little bit about scanxiety and how we can help patients?

 So scanxiety, which is the combination of scan and anxiety, affects patients in different ways. We suggest coping skills to help them through those times of heightened anxiety. Some patients recommend staying busy, increasing their support system during those times or utilizing counselors and therapy.

 Another area outside of lung cancer treatment that we talk a lot about is financial toxicity. Can you discuss how this can affect a patient with lung cancer and how we can address this issue as well?

 So, no one plans for a cancer diagnosis. When that happens, it's usually a big surprise. Almost every patient I've supported has reported some sort of financial toxicity or challenge. I think along with the information that comes about our disease, when we are diagnosed, is to let people know about financial resources that are available to them to help them through these challenging times.

 Why do you think something like support groups are so helpful for a patient that has lung cancer?

 Support groups give patients the opportunity to talk about things with people who really get it. So, they understand exactly what they're going through because they've been through it or they're going through the exact same things. They can compare their survivor stories. They can help each other through any challenging times and provide advice and resources and tips to help smooth the path for them.

 Why are support groups also important for an individual's loved ones?

 So, caregivers need their own set of resources and tools. They are absolute unsung heroes. Unlike patients, caregivers don't have a team of medical professionals taking care of them. So providing caregivers the ability to connect with other caregivers as mentors, I think is vital. We also provide tip sheets on many topics related to caregiving and lung cancer and caregiver challenges and offer tools for caregivers to help their loved ones and to help themselves.

 Can you discuss other resources that LUNGevity has available for patients to deal with challenges outside of treatment?

 Yeah, so we have a variety of online and virtual support communities. Our helpline, which is powered by oncology social workers, we have the lifeline peer-to-peer support program. We have educational events and free booklets and materials to download. We also have nutritional information. I think that's something that not a lot of people address. So, we have that as well as a navigation app that patients can download on their smart phone, and that can help keep them organized as well.

 To bring it all together, there's a lot that goes into a lung cancer diagnosis. What would you say is your biggest piece of advice for a patient who's facing a lung cancer diagnosis?

 So, of course, I would say visit the LUNGevity website. You can get plugged in there and learn about your type of lung cancer, biomarker testing and treatment options from our website. You can print off questions to talk to your doctor abouts. You get a bit of a better understanding of your disease and your treatment plan and to plug into the community. Our community is full of long-term survivors and they've walked the walk. And they have invaluable information. They are really the experts. So don't try to go it alone. For caregivers, you don't have to do everything on your own. We are here for you.

Beyond Lung Cancer Treatment

Can you discuss the importance of the amount of Food and Drug Administration (FDA) approvals that we saw in lung cancer last year?

 That's a fantastic question. And as a patient advocate, I was thrilled to see so many different approvals by the FDA last year. And I when I think of the approvals, I think of a couple of different things. First, we saw label expansion, which means that a drug that was already approved by the FDA can now be used to treat another type of lung cancer. And the first thing that comes to mind is using a drug called Tagrisso (osimertinib). For early-stage lung cancer, that was a fantastic approval that we saw.

The other approvals that we saw were in the targeted therapy space, and again, targeting to new biomarkers in lung cancer, the match mutations and the rearrangements, two different types of biomarkers that are found in lung cancer.

And the third group of approvals that we saw last year were lots of different immunotherapy options for our patients. And again, for me, as a patient advocate, when I reflect on all these approvals, I think of more options and more opportunities for our patients.

What do these advancements mean for patients?

 These advances, in my opinion, mean hope, hope for having a better quality of life and hope for a longer survival. And if I were to unpack some of these approvals, I think in the small cell space, what we saw is the approval of a new immunotherapy/chemotherapy regimen for extensive-stage or advanced-stage small cell lung cancer patients. Now, in the early stage, non-small cell lung cancer space, we saw the approval of a drug called osimertinib. For those patients who have a mutation in the EGFR gene, and this is a huge landmark, in my opinion, because in the early-stage space, typically after patients had surgery, the only option that they had after surgery was chemotherapy, and sometimes even radiation. But the approval of a biomarker driven treatment in the early-stage space tells me that we'll be seeing more and more of these treatment options for early-stage patients in the horizon. And we also know that some of these targeted therapies when they're given after surgery, have a much better overall survival than just chemotherapy alone. And lastly, when I think of approvals in the advanced stage, non-small cell space to new approvals come to mind, targeting the RET rearrangements, which again, we see in small and non-small cell lung cancer and approvals targeting MET mutations. And again, for me as a patient advocate, these approvals are incredibly important because RET rearrangements and MET mutations are incredibly rare in the lung cancer community. And what these approvals remind us is lung cancer is becoming incredibly personalized.

Why is patient-focused research so important in lung cancer?

 When we think of research and treatment in lung cancer, I think the research piece is the clinical trials and getting drugs to the market. But what patient-focused research helps us uncover is are these drugs reaching patients. How are patients feeling and functioning on these drugs? And I think these pieces of information are incredibly important for two pieces. First, we can make sure that we can solve the access issue. And secondly, we can also make sure that we equip our patients to live longer, healthier lives on these drugs. And again, keeping in mind that patient-focused research looks at patient experiences outside of a clinical trial setting. And I think that's a key point here, because most of the information that we have about these drugs, is from clinical trials and patient-focused researches are the other side of that coin, giving us real world information about how these drugs impact the lives of our patients.

Are there any novel therapies that might not yet be approved. But maybe we can educate patients on?

 This is an incredibly exciting time for lung cancer treatment and research. When I think of new therapies on the horizon, I think of an incredibly exciting pivotal point in lung cancer treatment, and that's being able to target the KRAS mutation. The KRAS mutation was discovered 40 years ago. In fact, it was one of the first mutations discovered in lung cancer. But to date, we have not been successful in cracking this nut. But that's changing. And we have two very, very exciting drugs, which are looking very promising in clinical trials. And I do see drugs targeting a particular type of KRAS mutation becoming available to patients pretty soon. And again, another drug that's incredibly exciting is a drug that targets a type of mutation in lung cancer. And these mutations are classified under HER2 mutations. And again, HER2 mutations are found in a subset of lung cancer patients and not very common. And again, having a targeted treatment for patients with HER2 mutations is going to be incredibly important, because thus far, the only treatment option these patients have had is chemotherapy, and having a targeted treatment is going to again, give them more treatment options.

With all of these advances, why can patients with lung cancer be hopeful moving forward?

 I think this is a time of hope for lung cancer treatment and research because of the fact that I feel like we've reached a pivotal point in our understanding of the biology of the disease, where we can convert some of this biology into action. And we see that happening right now. The slices of the lung cancer are becoming smaller and smaller and lung cancer is becoming more and more personalized. And this is going to just continue. And whether a patient has non-small cell lung cancer or whether a patient has small cell lung cancer, lung cancer treatment is going to become more and more personalized, where patients will have the option of choosing treatment options that are meaningful to them, and that help them lead healthier and more healthier lives with minimal side effects from their treatments.

Addressing Aspects Outside of Treatment, Looking Ahead in Lung Cancer Care | CURE^® Speaking Out

COVID-19 and Lung Cancer

Biomarker Testing in Lung Cancer

Small Cell Lung Cancer

Beyond Lung Cancer Treatment

Looking Ahead in Lung Cancer Care

Latest News

Addressing Aspects Outside of Treatment, Looking Ahead in Lung Cancer Care | CURE® Speaking Out

COVID-19 and Lung Cancer

Biomarker Testing in Lung Cancer

Small Cell Lung Cancer

Beyond Lung Cancer Treatment

Looking Ahead in Lung Cancer Care

Latest News

Addressing Aspects Outside of Treatment, Looking Ahead in Lung Cancer Care | CURE^® Speaking Out