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Thriving With Lung Cancer: What You Should Know About Care and Treatment

Thriving With Lung Cancer: What You Should Know About Care and Treatment from Patient Empowerment Network on Vimeo.

What does it mean to thrive with lung cancer? Dr. Jyoti Patel discusses care and treatment goals, reviews current and emerging treatment options, and shares advice for living well and thriving with lung cancer.

Jyoti Patel, MD, is Medical Director of Thoracic Oncology and Assistant Director for Clinical Research at the Robert H. Lurie Comprehensive Cancer Center of Northwestern University. She is also Associate Vice-Chair for Clinical Research and a Professor in the Division of Hematology and Oncology at Northwestern University Feinberg School of Medicine. Dr. Patel is a leader in thoracic oncology, focusing her efforts on the development and evaluation of novel molecular markers and therapeutics in patients battling non-small cell lung cancer. Learn more about Dr. Patel.

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Transcript:

Katherine:

Hello and welcome. I’m Katherine Banwell, your host for today’s program. Today’s webinar focuses on how patients can aim to live well and thrive with lung cancer. We’re going to discuss treatment goals and the importance of patients playing an active role in their care. Before we get into the discussion, please remember that this program is not a substitute for seeking medical advice. Please refer to your healthcare team about what might be best for you. Let’s meet our guest today. Joining me is Dr. Jyoti Patel. Dr. Patel, welcome. Would you please introduce yourself? 

Dr. Patel:

Hi. Thanks so much. My name is Jyoti Patel. I’m a professor in medicine at the Northwestern University Lurie Cancer Center and I’m the medical director of thoracic oncology and the vice chair of clinical research for the Department of Medicine.   

Katherine:

Well, thank you so much for taking the time out of your busy schedule to be with us today. Since this webinar is part of PEN’s Thrive series, I’d like to ask you from your clinical experience and perspective, what do you think it means to thrive with lung cancer? 

Dr. Patel:

I think our definition of that has evolved considerably over the past two decades. The advancements in the lab and in clinical trials have translated to vastly different outcomes from our patients than I ever imagined two decades ago. So, certainly we see a large number of lung cancer survivors, people who have had early disease that has been eradicated and they are living after their lung cancer diagnosis with sequela treatment. And we see an even larger number of patients who are in active treatment, those with more advanced disease.  

When we can minimize the toxicities of active treatment and really focus on quality of life, survival outcomes, then I think we’re really talking about thriving with lung cancer.  

Katherine:

Mm-hmm. Well, thank you for your insights. Of course, an appropriate treatment course is part of thriving. Before we get into treatment though I’d like you to walk us through the types of lung cancer if you would.  

Dr. Patel:

Sure. So, over 200,000 Americans will be diagnosed with lung cancer this year. And we break lung cancer down into two major diagnoses. So, the more common one is non-small cell lung cancer. The less common one, which accounts for 13 percent of diagnoses, is small cell lung cancer. Those are descriptive terms but don’t really go beyond that. It’s, essentially, what do the cells look like under the microscope? We know that these two behave very differently. Small cell lung cancer tends to be a cancer which can move a little bit more quickly. It tends to be more aggressive.  

We have certain treatment regimens that are appropriate. Non-small cell lung cancer is one which we further subdivide into adenocarcinoma, squamous cell cancer, or large neuroendocrine cancer. And we treat those a little bit more similarly with different local therapies and different systemic agents.  

Katherine:

Okay. How would you define treatment goals for people with lung cancer? 

Dr. Patel:

So, we hope that the number of patients that we find with earlier stage disease increases as we now at least have evidence to do screening for people who are at high risk. So, for patients with early-stage disease, which we really define as stage I and stage II – so, cancer that’s limited to the lobe of a lung – our best treatment options are surgery and sometimes radiation in appropriate patients. And for those patients, we think that treatment is discreet and curative.  

For the third of patients who present with stage III disease or locally-advanced disease – and here we’ve seen significant advancements with the integration of immunotherapies, improvements in surgery, and radiation. Their treatment course tends to be a bit longer but, again, our intent is curative. So, the cancer has discreet therapy, we complete it, and then patients are in survivorship mode, in which we’re following them periodically.  

Unfortunately, still, a large number of patients present with more advanced disease. Stage IV disease or metastatic disease. Those are all sort of interchangeable. And treatment for those patients is about controlling the cancer. Often, you’ll hear the word “palliative.” So, the goal of treatment is to control the cancer, to decrease the burden of cancer, and to help patients live longer. Certainly, again, with our advancements of immunotherapies and targeted therapies, patients are living longer than ever before.  

And in some patients, it really becomes a chronic disease in which checkups can be periodically done or patients can be monitored off of treatment for long periods.  

Katherine:

Mm-hmm. Do treatment goals vary by lung cancer type?   

Dr. Patel:

So, the goal of cancer treatment is always to make patients live longer and to make sure that that quality of that survival is the best it can be. So, that’s always our overlying goal. For patients with early disease or early stage – stage I to III non-small cell lung cancer – is something we call limited stage. Small cell lung cancer, the intent is, again, curative. For patients with more advanced disease, we tend to think about the cancer as something that we control, that we see a good response to hopefully, and watch patients over time.  

There are a subset of patients with more advanced disease that have really significantly better outcomes. We call these sort of patients “super survivors.” And we hope to make that number greater as we incorporate new science into their treatment paradigms. 

Katherine:

What is the role of patients in making treatment decisions? 

Dr. Patel:

I think all treatment decisions are patient-focused.  

So, again, understanding someone’s goals of treatment are important. But understanding the context in which the cancer is happening. So, the cancer is part of a patient that has a really full life. Family. Work. Other medical comorbidities. Things that they prioritize. And so, having open discussion about the likelihood of achieving curative therapy or what the risks and benefit ratios are in palliative therapy are absolutely essential to having transparent and honest communication with patients. But it is also optimistic and compassionate.  

Katherine:

You mentioned some treatment approaches a few moments ago, but I’d like to walk through the types of treatments that are used today to treat lung cancer. Let’s start with surgery.  

Dr. Patel:

We think about local therapies as things like surgery. So, surgery has evolved, again, significantly.  

Now with videoscopic approaches and robotic approaches we’re able to remove a tumor either with a larger incision – more traditional incision – or some of the smaller incisions. And the goal of doing the surgery is often to want to diagnosis the cancer. So, to do a biopsy. But when it’s used in terms of cancer treatment, the goal of surgery is to get a complete resection.  

So, we only do surgery if we can remove a tumor and mass with clear margins and not compromise other vital functions. Sometimes we’ll, again, do a more palliative surgery if we need to, if there’s a problem that’s causing significant symptoms. But in that case, the surgery is generally not improving the survival of the patient. It’s trying to palliate symptoms.  

Katherine:

Mm-hmm. What about other types of therapy? 

Dr. Patel:

Other localized therapies predominately include radiation therapy. And, again, radiation has significantly changed over the past years. We’ve been able to incorporate new technologies, truly target tumors, and to minimize toxicity, with two kinds of radiation. Photon therapy, which is more traditional therapy, and proton therapy, which we see administered in a very small subset of patients.  

Primarily, photon therapy, we treat tumors, sometimes over many weeks, to decrease toxicity versus sometimes we give one or two doses of radiation in a high-dose fashion that’s very targeted.  So, often for the chest in stage III cancer, for example, a patient may end up getting six weeks of radiation Monday to Friday with chemotherapy.  

And that, again, is curative intent. It’s to ablate the cancer and to provide the best local treatment. 

Often, we’ll do something called stereotactic radiation therapy. And that is if there is a discreet mass, often that could be if the cancer is metastasized to the brain, we can give very targeted radiation there, again, to ablate the tumor.  

In patients who may not be candidates for surgery because lung surgery is a big deal, right? Removing part of your lung can lead to morbidity in someone with other medical issues. Sometimes we can use pinpoint radiation in the lung and see really good outcomes for patients with good disease control.  

Katherine:

You’re also using chemotherapy still, I would imagine? 

Dr. Patel:

The other part of treatment for lung cancer are systemic therapies. And there a number of systemic therapies. So, I sort of break it down into three major parts. One is chemotherapy. Chemotherapy remains a backbone of treatment for lung cancer.  

It’s a lot more tolerable and much more personalized than ever before. Often chemotherapy can be given to patients without significant toxicities. Not everyone loses their hair. Not everyone has neuropathy. Often, I have patients who are working and taking care of their families on chemotherapy. So, it is a good and very reasonable option. But two things that we’re really most excited about – and I think have changed the field most dramatically – are targeted therapies and immunotherapies.   

Katherine:

Mm-hmm.  

Dr. Patel:

These targeted therapies are rationally-designed molecules or antibodies that block proteins that may be overexpressed in lung cancer.  

So, some of them are the byproducts of mutated genes that are upregulated and causing a cancer to grow. Others may just be that we’re seeing a high level of protein expression on the cancer cell. But these targeted therapies preferentially bind to their targets that are present on cancer cells and not so much normal cells. Because of this, often there is less toxicity to normal cells. But because we can find specific targets – and the best targets are ones that are only expressed on cancer cells.  

But because we can find a direct target, sometimes we’re able to design drugs that may have significant efficacy. So, 80 percent or 90 percent of people who have a particular target and are able to get a targeted therapy may have a response to treatment. Targeted therapy can be great for some patients. And patients may be on oral medications, sometimes for years, to control their cancer.  

The other real game-changer in the past decade for lung cancer has been the integration of immunotherapy. Approved immunotherapies currently are primarily antibodies that we give to patients. And these antibodies block proteins that are expressed by cancer cells which downregulate the immune system. By shutting down these proteins, your own immune system is able to kind of re-see the cancer cell and kill it.  

And so, now we know in patients with more advanced disease that immunotherapy or immunotherapy with chemotherapy leads to better outcomes than we’ve ever seen. We also use immunotherapy for patients with stage III lung cancer after chemotherapy and radiation. And this improves their survival significantly.  

And most recently, we’ve now integrated immunotherapy after surgery for patients with early-staged disease to decrease their chance of relapse from cancer.   

Katherine:

Mm-hmm. That’s excellent. Are some of the targeted therapies taken orally? And if so, are patients in charge of administering them, their own therapies?  

Dr. Patel:

Many of the targeted therapies that are most effective are taken orally. And so, patients take them at home. Often, they’ll have once-daily dosing or twice-daily dosing. The number of pills often depends on the formulation of the drug. So, patients are responsible, I guess, for taking them. That comes with a lot. So, we need to think about, how do we help with adherence? How do we manage toxicity? How are the drugs affected by whether you eat or take the drug on an empty stomach? There are a lot of nuances there.  

Generally, we like to give a lot of information to our patients. So, often, patients will meet with a pharmacist when they’re first prescribed the medication. They’ll meet with our nurses to go over how to take those and how to manage any side effects if they have them or what to do if there are any adverse reactions.  

Katherine:

Mm-hmm. Well, what would happen if a patient forgets to take one of their medications? Does that impact its effectiveness? And then should they get in touch with their healthcare team to let them know? 

Dr. Patel:

So, generally, we like patients to take the medication almost at the same time every day. We sort of think about half-life. So, we want to make sure that that serum level stays appropriate. If someone misses a dose – which happens – and, again the best-case scenario is that people are on these pills for years, right? For several years. So, of course, you’re going to miss a dose.  If that happens, we generally tell people never to double up.  

To let your team know. Often you can just skip that dose and take it in the evening or the next day.  

Katherine:

I’d like to talk about emerging treatments. Are there any therapies in development that patients should know about that you’re excited about? 

Dr. Patel:

There are a number of things that are happening right now in the landscape that is really, again, giving us great optimism about how to move forward. So, areas of active research really concentrate on identification of new targets so that we have identified oncogenes that we’re trying to treat effectively. So, those are things like EGFR Exon 20 mutations or HER2 mutations, as well as some of these new fusions.  

Another area of rapidly growing research is that most patients who have targeted therapies will eventually develop resistance. And so, understanding how to mitigate resistance or how to overcome resistance is important. And we often talk about the different drugs in development as first, second, and third-generation drugs in the EGFR space, which accounts for about 15 percent of lung cancers in the United States. We’re looking at fourth-generation tyrosine kinase inhibitors. They’re certainly very exciting.  

The other piece, I think, of research that is moving and that we are looking forward to understanding why some patients have really robust responses to immunotherapies and others don’t. Or how people become immune to the effects of immunotherapy. And so, understanding the tumor microenvironment, seeing if there are other proteins that we can co-stimulate to cause these robust and durable responses to immunotherapy is an area that we’re working on.  

Katherine:

Mm-hmm. Since no two people with lung cancer are the same, how do you decide which treatment is best for each patient? 

Dr. Patel:

So, the process of evaluating a patient can actually take a little bit of time. So, we first meet a patient, and they may have suspicious findings. We want to understand the full stage of their cancer. And so, in 2022, that’s doing an MRI of the brain, a CT of the chest and abdomen, and often times a pet scan to look for any evidence of distant disease.  

So, once we have radiographic modeling of where we think the tumor is, sometimes we need to do a repeat biopsy to confirm whether or not lymph nodes are involved or the cancer has spread. After we do the biopsy and say that it’s non-small cell lung cancer or small cell lung cancer, we make decisions about looking for genetic markers.  

And so, we’ll often take the tumor tissue and stain for things like PD-L1, which is a marker of response to immunotherapies.  

Very importantly, with all these new targeted therapies, we want to understand the genetic makeup of cancer. So, we want to look for things like EGFR mutations or ALK translocations which are more effectively treated with targeted therapies than chemotherapy or immunotherapy.  

So, those are the two tumor characteristics. But, again, I’ve said before, a tumor exists in a person.  

And so, you need to understand what’s important to the person, what do they prioritize, what’s their health like, what, again, are the preferences, are there other comorbidities that could perhaps make some treatments more difficult? Many people, for example, have autoimmune disease. And so, that can be something that’s relatively minor, like some psoriasis that is well-controlled versus perhaps lupus which can cause organ failure.  

Often with psoriasis there are ways that we can give immunotherapy safely. Sometimes other autoimmune diseases would put patients at very high risk with immunotherapies. And so, again, understanding the overall health, understanding other competing causes of toxicity, are absolutely important as you make decisions together.  

Katherine:

Yeah. It seems like we’re getting closer to personalized medicine. For you, how would you define that term? 

Dr. Patel:

Personalized medicine comes in two forms. So, one is the biologics of the tumor itself. So, what do I understand about the genetic markers, the likelihood of response to the available therapies. The other piece, again, is personalizing it to the person that has the cancer.  

And so, again, what are the preferences? What are the risks they’re willing to take? What are their goals? What are the preferences? 

Katherine:

Symptoms and side effects can sometimes be a burden to patients undergoing treatment. What are the most common issues that patients face? 

Dr. Patel:

So, common symptoms from treatment can include fatigue, lack of appetite, disinterest in the things that made you really excited before. Infrequently now we have severe nausea, because we have such good antinausea medications.  

Sometimes we’ll have problems with blood counts or risks of infection. All of these vary by the treatment that’s rendered. And so, often it may be that you’re on a targeted therapy. Some targeted therapies, for example, can cause swelling in your legs. Immunotherapies are generally well-tolerated but can cause significant side effects in a small minority of people that could include inflammation in the gut, for example.  

So, everything is sort of tailored, I would say. Most frequently, I hear about the fatigue, and then the ongoing stressors of living with cancer. So, the financial toxicity certainly. These drugs are expensive. But not only that, often people have changed the way they work. Their family members have changed how they work to support their loved one. So, bringing people to appointments.  

There’s a lot on someone’s plate. And that can contribute to fatigue and even some anxiety.  

Katherine:

Yeah. What strategies are in place to manage symptoms and side effects? 

Dr. Patel:

So, having a patient who’s knowledgeable about potential side effects and a good advocate for themselves is probably the best way to manage therapy. So, ongoing dialogue with your clinical team, with your nurse, with your physician, are absolutely important. But most of us work with teams of healthcare workers. And so, when I think about our clinic, we have financial counselors, we have social workers, we have dieticians and nutritionists, we work with physical therapists. And importantly, we work with a palliative care team that helps us, again, manage some of the toxicities of therapy.  

We think that they provide a longitudinal assessment of patients and remember what’s most important to a patient over time. Whereas often in the moment there’s this, we want to make the tumor shrink. We think about what we can do immediately. It’s often really helpful to have another team that can provide support over the patient’s journey to help us, again, prioritize what they wanted to do the most.  

Katherine:

Mm-hmm. Dr. Patel, why do you think it’s necessary for patients to tell their doctor about any issues they may be having? Even the little ones.  

Dr. Patel:

I think most of us want to be good patients. And so, we minimize things because we think that, okay, we’re using precious time to talk about things that may seem minor. But, again, all of these add up.  

Even minor symptoms, particularly in the era of immunotherapy, can turn out to be big problems. So, as I say now to my patients particularly on immunotherapy, if something seems a little bit off and you can’t put your finger on it, I just need to know so I can at least do the appropriate workup to make sure that we’re not missing anything. Because symptoms of underlying problems can be very misleading.  

Moreover, I think the cumulative burden of cancer. So, again, we talked a little bit about the financial toxicity, the emotional cost, the time involved in treatment, all of that adds up. And you never want to get it to a breaking point. We want to manage it early on, so we can, again, make decisions together and keep wellness and the quality of survival at the forefront.  

Katherine:

Mm-hmm. You mentioned that sometimes treatment doesn’t work for an individual patient. So, are there options for relapsed patients? 

Dr. Patel:

So, absolutely. Most of our therapies in the metastatic setting work for some time. And then cancer is a difficult adversary. It figures out how to overcome whatever strategy we’re using and becomes resistant. When that happens, often we need to change course. We need to try a new therapy. We have a number of therapies that we’re looking at in the first- and second-line settings. And we’re trying to understand best therapies for subsequent lines of treatment.  

Generally, I say treatment is appropriate if you’re feeling pretty well, right? If you’re able to tolerate treatment, then the likelihood that you would be able to benefit from therapy is significant. How that changes over time weighs heavily on our decision. So, if someone’s having more fatigue or more symptoms from their cancer, it may be that even a little bit of toxicity proves too much.  

Whereas if someone is feeling still really good, we may be willing to say, okay, I’m going to take a little bit more of a risk for the benefit of improved cancer control.  

Katherine:

Mm-hmm. You talked about this a few moments ago, but I would like to talk about self-advocacy. Managing the worry associated with a diagnosis or concerns about progression can lead to anxiety and fear in some patients. So, why is it important for patients to share how they’re feeling with their healthcare team? And who all is in the healthcare team who would be able to help a patient? 

Dr. Patel:

So, the anxiety of cancer therapies, of CT scans, of tumor assessments, can be overpowering. And then the longer-term anxieties. Who’s going to care for me, who’s going to care for my family, am I doing the things that are important to me, are ones that weigh heavily on all of us.  

So, certainly, again, carrying these anxieties over a long time have adverse impacts. So, people who are more anxious may not sleep as well. They may lose weight. They may not be as robust. And so, all of those things weigh into our ability to give more treatment. So, we want people to be psychologically well. We have, generally now in our healthcare teams, a number of people who are there to help.  

And so, we have nurse navigators. Most cancer centers have a number of psychologists and psychiatrists that work with our teams. But more than that, even things like nutritionists and social workers make a significant impact. And then I’m surely lucky to work with a world-class palliative care team. So, these are doctors that really focus on symptoms of cancer, the toxicities of treatment. And we work together to ensure the best outcome for our patients.  

Katherine:

Dr. Patel, we’d be remiss if we didn’t bring up financial concerns.  

Treatment and regular appointments can become quite expensive. So, understanding that everyone’s situation is different, where can patients turn to if they need resources for financial support?  

Dr. Patel:

When your team first talks to you about therapies, it’s important that they have transparency about what something may cost or the risks that you may incur by starting treatment. However, most of us have access to wonderful financial teams and financial counselors that can help you manage this.  

Many of our industry partners and friends are able to have assistance programs to provide oral drugs at discounted rates or to work, again, with organizations in which you may be able to have reduced rates for many of your drugs. Most of the infusional drugs, again, should be covered by insurance. But outside of drug costs, there are a lot of other costs.  

So, parking every time you come for a doctor’s appointment. Time off from work. Time that you’re hiring a babysitter to take care of your children when you’re at treatment. All of those add up. And so, again, perhaps talking to the social worker at your cancer center or talking to the financial counselor, there are often local programs that can help ease some of those burdens. 

Katherine:

Thank you for that advice, Dr. Patel. Before we close, I’d like to ask, are you hopeful about the potential for people with lung cancer to thrive? 

Dr. Patel:

Absolutely. The future is bright after years of working and really developing this great foundational science.  

We are seeing the transformation of cancer care in a way that is faster than I could’ve ever imagined at the beginning of my career. We’re bringing scientific insights to the bedside. And bringing it to the bedside is impacting how patients live with their cancer and thrive with their cancer. They’re living longer and with fewer toxicities and side effects than I ever imagined.  

I’m optimistic about the promise of early detection through blood tests one day, through screening with CT scans to find early-staged disease in which the cancer is the most curable. And then for patients with more extensive disease, to really understand how we can sequence therapies or deescalate therapies when patients have minimal burden of disease, again, to decrease the toxicities.  

Katherine:

Mm-hmm. Dr. Patel, thank you, again, for being able to join us today. It’s been a pleasure.   

Dr. Patel:

Thank you so much for this invitation. I really enjoyed speaking with you.  

Katherine:

And thank you to all of our partners. To learn more about lung cancer and to access tools to help you become a proactive patient, visit powerfulpatients.org. I’m Katherine Banwell. Thanks for being with us.  

Thriving With Lung Cancer: What You Should Know About Care and Treatment Resource Guide

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Stage IV Metastatic NSCLC Shares Key Learnings on Her Journey

Stage IV Metastatic NSCLC Shares Key Learnings on Her Journey from Patient Empowerment Network on Vimeo.

Lung cancer patient Carol shares her journey with stage IV metastatic non-small cell lung cancer (NSCLC). Watch as she discusses the symptoms she experienced, how she pushed when her symptoms were dismissed, and key learnings that empowered her on her journey.

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Transcript:

My name is Carol, and I was diagnosed with stage IV metastatic  non-small cell lung cancer (NSCLC) at the age of 53. My initial symptoms were dismissed, but I advocated for myself to receive an accurate diagnosis.

My lung cancer journey began in an emergency room right after New Year’s Day 2022 with severe headache symptoms of head pressure, pain, and vomiting. I knew it was not a normal headache. The ER team started to treat me for a migraine and wanted to send me home. I pushed back and explained that I’d been experiencing symptoms of fatigue, frequent headaches, dizziness, and a weird buzzing sound in my ear over the last few months. I knew that I didn’t feel right and insisted on getting a brain scan.

After waiting hours to get in for the brain scan, they were shocked to find 10 brain metastases. Then a PET scan uncovered the root cause – a tumor in my lung and multiple metastases throughout my body, including leptomeningeal disease. Back when I started having symptoms, I tried to book an appointment with a neurologist, but there wasn’t an opening until February. I shudder to think what would have happened if I had left the ER on January 3 to wait until February. We know our bodies best and need to make sure we push for answers when we know there’s something more to the story. This pushing can be uncomfortable, because no one wants to be labeled “a difficult patient”, but it’s our health – and sometimes our life – at stake.

Following my diagnosis, I received one round of chemo until my genetic testing came back with the EGFR exon 19 deletion result. Then I was switched to a more targeted medication and still receive monthly infusions for bone mets.

Physically my treatment allows me to live an almost normal life enjoying my previous activities of golfing, hiking, and  gardening. And I’ve been surprised by my mental strength and positivity in the face of this horrible disease. Sure… I have times when helpless or sad or angry feelings come up, and I need to embrace and FEEL them, but overall I feel thankful and hopeful.

Some things I’ve learned during my lung cancer journey include:          

  • If something doesn’t feel right with your health, speak up and don’t stop pushing until you get answers.
  • Pay attention to your body when you experience multiple symptoms.
  • Focusing on helping others is another way to take your mind off of your own worries.
  • My friends and family are a big source of emotional support, and we are all going through this cancer journey together. So, I find that it helps them to feel useful when I give them small tasks to do, so they feel like an active part of this journey.

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

If You Have Lungs, You Can Get Lung Cancer: Teri’s Story

If You Have Lungs, You Can Get Lung Cancer: Teri’s Story from Patient Empowerment Network on Vimeo.

Lung cancer patient Teri shares her experience with stage IIIA non-small cell lung cancer (NSCLC). Watch as she discusses the symptoms she experienced, her extended journey to diagnosis, and key learnings that kept her on the path to empowerment.

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Transcript:

​​My name is Teri, and I was diagnosed with stage IIIA non-small cell lung cancer (NSCLC) in June of 2018. My lung cancer diagnosis was delayed as I was helping my mom deal with her own lung cancer journey.

My journey to diagnosis started with severe abdominal pain that was diagnosed as diverticulitis. During my hospital stay for abdominal pain, my scan showed a spot on one lung. In retrospect, I should not have brushed this off, but I wasn’t concerned since I’d never been a smoker. Almost a year later, I had a CT scan that showed my nodules had grown, and I was referred to an oncologist.

My surgery was scheduled to remove the middle and lower portions of my right lung, as each had a large mass. The weekend before surgery, I wanted to find my “baseline” for activity level. So I hiked, rode my bicycle, gardened, and kayaked with no indication that ANYTHING was wrong. My oxygen level was always 100 percent, and my energy level felt normal.

My surgery was successful, and I came away with clear margins and nothing found in my surrounding lymph nodes. I had several rounds of chemo following my surgery and had scans done every 6 months. However at the one-year mark, there were signs of recurrence. 

I felt ready to continue with my life but needed to get the remaining upper lobe removed. My surgeon told me the surgery would be “a morbidly serious procedure.” He said this three times during a single appointment.

The surgery was successful, but I had many “morbidly serious” incidents. I made it through with my husband’s amazing support.

Today, I lead a very full and active life with one lung. I am currently cancer-free. My desire is to be a support person for newly diagnosed lung cancer patients. I want to be a ray of hope for other patients so that they know they are not alone.

Some things that I learned during my lung cancer journey include:

  •   Pay attention when unusual lab results or scans come back even if you’re a non-smoker.
  •   Energy levels will not always be an accurate gauge of cancer in your body.
  •   My husband was an incredible source of support during my lung cancer journey.
  •   I am happy to share my story if it helps even one person feel they are not alone.

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

How Can Drug Resistance Impact Non-Small Cell Lung Cancer?

How Can Drug Resistance Impact Non-Small Cell Lung Cancer? from Patient Empowerment Network on Vimeo.

Drug resistance can develop for some lung cancer patients, but is there impact to non-small cell lung cancer (NSCLC)? Expert Dr. Christian Rolfo from Mount Sinai explains drug resistance, patients who may be at-risk for this issue, and monitoring that is performed for optimal treatment.

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Transcript:

Dr. Nicole Rochester: 

What have we learned about drug resistance as it relates to non-small cell lung cancer? Are there any new developments in that area?

Dr. Christian Rolfo: 

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

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

Expert Perspective | The Value of Empowering Patients

Expert Perspective | The Value of Empowering Patients from Patient Empowerment Network on Vimeo.

Lung cancer specialist Dr. Tejas Patil, of University of Colorado Cancer Center, explains why it’s important for lung cancer patients to feel empowered and discusses the advice he shares with patients to encourage self-advocacy.

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.

See More from Thrive Lung Cancer

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Why Non-Small Cell Lung Cancer Patients Should Speak Up About Symptoms and Side Effects

When to Consider a Clinical Trial for Lung Cancer Treatment?


Transcript:

Katherine:

Dr. Patil, how do you empower patients? 

Dr. Patil:

Well, I think transparency is key. So, I tell patients what I know. I tell patients what I don’t know. I help patients ask the questions that they may want to ask, but not sure how to.  

And I think for patients it’s really important to know that ultimately my role as a provider is to be a coach and a guide. And patients really have autonomy over their bodies and their choices. Sometimes I disagree with what patients choose to do, sometimes I agree. But I will think that as long as patients are aware of the risks and benefits of any decision they’re making and do it with information, that that’s a way of empowering patients. 

Katherine:

Why is it so important for patients to be empowered? 

Dr. Patil:

I think an empowered patient is actually a patient that can make meaningful decisions, and not make emotional decisions. I think that cancer diagnoses inherently are scary.  

They come with a lot of existential concerns and patients oftentimes feel like they’re cornered. And when patients are empowered, they can feel those emotions, but also make decisions that are based more on science and some on the facts that actually affect their care. 

Katherine:

Yeah. The more information we have, the more in control we feel. 

Dr. Patil:

The more in control you are actually. 

Katherine:

Yeah. Yeah. Very true.  

Collaborating on Lung Cancer Treatment Decisions With Your Team

Collaborating on Lung Cancer Treatment Decisions With Your Team from Patient Empowerment Network on Vimeo.

Lung cancer specialist Dr. Tejas Patil discusses why active communication between patients and their healthcare team is essential when making care and treatment decisions.

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.

See More from Thrive Lung Cancer

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Expert Advice for Setting Lung Cancer Treatment Goals

When to Consider a Clinical Trial for Lung Cancer Treatment?


Transcript:

Katherine:

Where does shared decision-making come into play? When does it come into play?  

Dr. Patil:

It comes in always.   

So, shared decision-making is one of the most important things that patients can do with their providers. It’s really important when we think about treatments to not just be very cookie cutter and follow a recipe book for managing a patient’s lung cancer. It’s really important to individualize therapy. This is really important where patients’ values come in. What patients want to do with the time that they have, and what patients want to do with the treatment? How do they want to take certain treatments?  

So, for example, I have a patient who’s a violinist and was faced with the possibility of receiving a type of clinical trial, but this trial caused neuropathy or numbness or tingling and would essentially render this patient unable to play the violin. This was an unacceptable treatment option for this patient, even though the data would suggest that it would work.  

And that’s an example of where shared decision-making comes in because it’s more than just treating numbers. It’s really about taking care of people. 

Katherine:

Yeah. Why is active communication between the patient and lung cancer team so important? 

Dr. Patil:

Active communication is really important because it’s really one of the easiest ways for things — So, a breakdown of communication rather is a one of the easiest ways for gaps to occur in care. And when there is active communication, when a patient feels like they have an opportunity to reach their team members to connect with their providers, it builds trust. And I think trust is one of the more important elements in the management of patients. If patients can trust their provider and trust that their judgment is sound, then there is more likely to be a harmonious relationship that facilitates the shared decision-making.  

Katherine:

When a patient is in active lung cancer treatment, how are they monitored? 

Dr. Patil:

So, patients are monitored in a variety of ways. If they’re receiving chemotherapy or immunotherapy, typically a provider will see the patient with each infusion cycle. And so, depending on the length of time and the schedule of infusions, that sort of dictates how frequently we see our patients. When patients are receiving targeted therapies, specifically the pill-based forms, they can be monitored in concordance with the NCCN guidelines. And in my practice, I typically see patients every three months with imaging.  

Now, if patients are having a hard time tolerating treatment, so they’re taking their oral pills but for whatever reason, we’re having a ton of side effects, we’re trying to figure out the dose. I might see my patients more frequently. But as a standard, if patients are tolerating their targeted treatment well, their scans look good, I usually see them every three months.  

Expert Advice for Setting Lung Cancer Treatment Goals

Expert Advice for Setting Lung Cancer Treatment Goals from Patient Empowerment Network on Vimeo.

Dr. Tejas Patil, a lung cancer specialist from the University of Colorado Cancer Center, shares advice on how lung cancer patients can work with their healthcare teams to set treatment goals.

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.

See More from Thrive Lung Cancer

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Collaborating on Lung Cancer Treatment Decisions With Your Team

When to Consider a Clinical Trial for Lung Cancer Treatment?


Transcript:

Katherine:

When someone is considering therapy for non-small cell lung cancer, what advice do you have for setting treatment goals with their team? 

Dr. Patil:

So, non-small cell lung cancer has seen some remarkable progress in the last 20 years, but it’s still a very serious disease. One of the main expectations I set with patients is that I will guide them through this journey, but that there’s going to be a lot of changes in their day-to-day. When we look at someone who’s receiving targeted therapy, in general I upfront tell patients that the model that I’m trying to emulate with targeted therapies is very similar to HIV. I remind patients that in 2022, we still cannot cure HIV, but we can give a very effective antiviral therapies that put their viral count to zero.  

And patients with HIV now can live really full rich lives. And that’s the model that we’re trying to replicate with targeted therapies. With immunotherapies, I set patients the expectation that immunotherapy has been a major advance in the management of lung cancer. And many patients are living very full lives as a result of using immune therapies. But it’s not for everyone, and I do enforce and or rather emphasize is a better word, the concept of taking things day-by-day. I think it’s really helpful when patients have a diagnosis like this to not spiral out of control and think about all possible future outcomes, but to really work with the data that we have at the moment.  

Questions to Ask Before Participating in a Lung Cancer Clinical Trial

Questions to Ask Before Participating in a Lung Cancer Clinical Trial from Patient Empowerment Network on Vimeo.

When considering clinical trial participation, what questions should patients ask their healthcare team? Dr. Tejas Patil, a lung cancer specialist at the University of Colorado Cancer Center, shares advice on what patients need to know when considering joining a clinical trial.

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.

See More From Lung Cancer Clinical Trials 201

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Transcript:

Katherine:

When considering clinical trial participation, what questions should patients be asking their healthcare team? 

Dr. Patil:

So, couple of questions that I think are really important for patients to ask their healthcare team is what is the current standard of care? So, if you’re enrolling in a clinical trial, you want to know that you’re receiving some kind of drug.  

And its expected effectiveness should be compared to what is considered the current standard of care for whatever line of therapy that is. The other practical questions that patients should be asking is what is the schedule of therapy? So, how frequently am I supposed to come in? Am I supposed to get a biopsy?  

Am I supposed to get blood draws? Most clinical trials will come with a schedule or a calendar for patients, and it’s helpful for them to look that over and see what’s being asked of them. And then the last thing is what are the known side effects? Now I always tell patients with a clinical trial, we don’t always know the side effects as part of the reason we’re doing the clinical trial.  

But if there’s some experience or if the doctors enrolled other similar patients in this trial asking what are the foreseeable side effects is actually really important. 

When to Consider a Clinical Trial for Lung Cancer Treatment

When to Consider a Clinical Trial for Lung Cancer Treatment from Patient Empowerment Network on Vimeo.

When it comes to non-small cell lung cancer treatment options, where do clinical trials fit in? Dr. Tejas Patil of the University of Colorado Cancer Center explains how he discusses clinical trial participation with patients.

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.

See More From Lung Cancer Clinical Trials 201

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Questions to Ask Before Participating in a Lung Cancer Clinical Trial


Transcript:

Katherine:

When it comes to non-small cell lung cancer treatment options, where do clinical trials fit in? 

Dr. Patil:

So, clinical trials are very important to advancing our knowledge and advancing our ability to care for patients in the best way possible. What I frequently get asked from patients is am I going to be a guinea pig for a clinical trial? And I think it’s really important to emphasize that clinical trials are comparing the best-known standard of care to something new.  

So, in effect you would never be a guinea pig. You would really just be receiving what is the best-known standard of care. And that would be compared to some novel approach to treating cancer. In general, I’m very encouraging of patients to enroll in clinical trials.  

I discuss the pros and cons of this because there are logistical concerns to keep in mind when patients are thinking about enrolling in clinical trials. If a patient enjoys traveling, and enjoys wanting to spend time with their family, that has to be balanced against the regimented schedule that some clinical trials may have.  

If they live in a rural part of the state and they have to travel three to four hours weekly, that’s a decision that has to be had and be made. But in general, if a patient is eligible and willing, I’m strongly encouraging that patients enroll in clinical trials to help further the knowledge of the field. 

Katherine:

Yeah. Are there clinical trial options available for patients who have already been treated with another therapy? 

Dr. Patil:

Yes. So, the clinical trials come in variety of forms and patients are eligible at various stages.  

So, there are some clinical trials that require patients to be newly diagnosed. And so, the trial would be the “first therapy” that they receive. But many trials actually I would say the majority of clinical trials in lung cancer are looking at patients who’ve progressed on the first line of treatment and are now facing the possibility of receiving second line treatments or further. So, that’s a common place for patients to enroll in clinical trials. 

The Latest Lung Cancer Research Updates From ASCO 2022

The Latest Lung Cancer Research Updates From ASCO 2022 from Patient Empowerment Network on Vimeo.

Dr. Tejas Patil from the University of Colorado Cancer Center shares the latest news in lung cancer research and treatment from the 2022 American Society of Clinical Oncology (ASCO) Annual Meeting, including an update on immunotherapy.

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.

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Transcript:

Katherine:

Researchers came together earlier this summer at the annual ASCO meeting. Were there highlights from the meeting that lung cancer patients should know about? 

Dr. Patil:

Right. So, the ASCO ’22 meeting this year had some really interesting publications. So, for me, the key publications that I thought were kind of interesting from ASCO ’22, 2022, one was a publication looking at the role of immunotherapy in patients who are – have a very high PD-L1 expression, so greater than 50 percent. And there’s – 

Katherine:

Reminds us what PDL is. 

Dr. Patil:

Oh, yes, of course. So, PD-L1 is a biomarker. It’s a predictive biomarker that lets us know whether some patients will benefit from immunotherapy. It’s also prognostic because if patients have a high PD-L1 score, they tend to do better with immunotherapy than patients who have a low PD-L1 score. 

Katherine:

Okay.  

Dr. Patil:

Now the interesting data that was presented was a pooled analysis of all the immunotherapy trials to date. And there’s been this ongoing question in lung cancer as to whether patients should get chemo with immunotherapy or whether they should just get immune therapy alone.  

And this study showed that if you have a very high PD-L1 score, it is potentially possible to just use immune therapy and forgo chemotherapy. And I thought that was a very interesting analysis.  

There’s also several other papers that came out as well. Mostly there was a lot of interest in something called circulating tumor DNA. So, let me just take a step back. This is a type of molecule that can be detected in the blood that can help determine whether cancer is present in your blood or not. And there was a lot of publications at ASCO looking at using a concept called minimal residual disease.  

So, when we treat patients with early-stage lung cancer, a big question is how do we know they’re cured or not cured? And a lot of abstracts and publications this ASCO were looking at this concept of minimal residual disease. So, if I can detect some cancer in your blood after you’ve had cured curative therapies, we’re – we have a problem because there’s still cancer around and we’re detecting it in the blood.  

And I think this type of approach is going to really inform how we think about early-stage lung cancer management in the future. 

What Testing Should Take Place After Non-Small Cell Lung Cancer Treatment?

What Testing Should Take Place After Non-Small Cell Lung Cancer Treatment? from Patient Empowerment Network on Vimeo.

It’s well-known that patients should undergo testing before choosing lung cancer therapy, but what testing should take place following treatment? Lung cancer specialist Dr. Tejas Patil, from the University of Colorado Cancer Center, discusses the role of testing after treatment.

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.

See More From INSIST! Lung Cancer

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Transcript:

Katherine:

We know that patients should undergo testing before choosing therapy, but what testing should take place following treatment? 

Dr. Patil:

That’s a really good question. And it’s a complex question depending on the type of treatment that the patient is receiving. So, broadly speaking in lung cancer, we’ve separated the field into two types of treatments.  

Patients with lung cancers will get molecular testing at the onset, right? When they’re diagnosed to look for what’s called a driver oncogene. So, these are mutations that can be targeted with pill-based treatments. And if patients have these mutations, there’s about 10 of these right now and several in development, then the patients can receive a targeted therapy.

However, if they don’t have these mutations, then the standard of care right now is some kind of chemotherapy with immunotherapy. Now, the question asked was what kind of testing do you do after diagnosis? And that really depends on which camp you’re in. So, if you’re in the targeted therapy camp, my general practice has been to repeat molecular testing upon progression. The reason is that patients who are receiving targeted therapies typically evolved some kind of resistance to targeted therapy.  

Broadly speaking, you can categorize these as on target or off target resistance, but the major reason for doing repeat molecular testing is to understand a mechanism of resistance and then hopefully develop a new treatment with that knowledge. Now for the camp that doesn’t receive targeted therapies, let’s say they receive chemotherapy and immunotherapy, there it gets a little bit more nuanced.  

And if there is a role for repeating a biopsy and looking for dynamic changes in the patient’s cancer, but it is not routine and should be done with consultation with a thoracic oncologist. And really the idea here is that if patients who are on chemo immunotherapy progress, any additional molecular testing should really help inform what the next line of treatment will be and sometimes that can be a clinical trial.  

How Does Biomarker Testing Impact Non-Small Cell Lung Cancer Care?

How Does Biomarker Testing Impact Non-Small Cell Lung Cancer Care? from Patient Empowerment Network on Vimeo.

Biomarker testing identifies certain genes, proteins, or other molecules present in a biologic sample. Dr. Tejas Patil, of University of Colorado Cancer Center, discusses how results from these tests can be used to determine a treatment approach for non-small cell lung cancer (NSCLC).

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.

See More From INSIST! Lung Cancer

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Transcript:

Katherine:

Biomarker testing is important prior to choosing therapy for non-small cell lung cancer. What is this test and how long does it take to get results? 

Dr. Patil:

That is a great question. So, a biomarker is a biological molecule found in blood or other body fluids or tissues that is a sign of a normal or an abnormal process.  

Or let me reframe that as it represents having some kind of medical condition or disease. Now, it’s a very broad definition. Basically, a biomarker can be used to see how well the body responds to a treatment for a disease or a condition. And when we look at it from a genetic perspective, sometimes the term that you’ll see is a molecular marker or a signature molecule.  

So, these are terms that are sort of interchangeable with biomarkers. But the role of a biomarker is to help ascertain how well the body responds to a certain medical intervention, broadly speaking. 

Katherine:

Okay. What question should a patient ask their doctor about test results? 

Dr. Patil:

So that’s a very complicated question, and I will do my best to answer it succinctly. So, my personal view is that for any test to be meaningful, it should impact medical decision-making in some very concrete way.  

Specifically, with biomarkers, the result should either be prognostic or predictive and I’ll define what those terms are. So, a predictive biomarker is one that helps determine if a certain therapy will be effective. So, I’m going to use lung cancer as an example. In EGFR mutation in non-small cell lung cancer allows a doctor to prescribe an EGFR targeted therapy called osimertinib (Tagrisso). Therefore, in this example, the EGFR mutation is predictive.  

It opens the door for this targeted option that would otherwise not have been available if the patient did not have this EGFR mutation. A prognostic marker is a little different. This is the type of marker that helps categorize risk. So, in the same example I used earlier, that patient may have an EGFR mutation.  

They can also have a different mutation called TP53. Now this TP53 mutation doesn’t influence therapy. It’s not targetable, but it does influence risk.  

And so, there’s been a lot of emerging data to show that patients with TP53 mutations have worse outcomes on targeted therapies than patients without TP53. And in that case, that mutation is what we call a prognostic biomarker. 

Why Lung Cancer Patient Advocacy Is Essential

Why Lung Cancer Patient Advocacy Is Essential from Patient Empowerment Network on Vimeo.

Dr. Estelamari Rodriguez, a lung cancer specialist, discusses the importance of patient advocacy in lung cancer care. Dr. Rodriguez shares how self-advocacy can impact cancer care and how being vocal as a patient advocate can help others in the lung cancer community.

Dr. Estelamari Rodriguez is Associate Director of Community Outreach – Thoracic Oncology at the Sylvester Comprehensive Cancer Center, University of Miami Health System. Learn more about Dr. Rodriguez, here.

See More from Thrive Lung Cancer

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Expert Advice for Recently Diagnosed Lung Cancer Patients

Why Non-Small Cell Lung Cancer Patients Should Speak Up About Symptoms and Side Effects

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Transcript:

Katherine Banwell:

Why is it so important for patients to share their symptoms and side effects that they’re having with their healthcare team? 

Dr. Estelamari Rodriguez:

So, there are two types of advocacy. There’s the advocacy that you do at your personal level, so if the patient is not telling us that they’re having side effects, weeks can go by and these things don’t get addressed. So, you have to be your own advocate, your family can be a great advocate. It doesn’t matter who you are, if we don’t know your side effects, and you’re not communicating that, we’re not able to impact, and intervene early. But there’s a bigger message of advocacy that is extremely important, specifically in lung cancer for decades. 

I mean, I think for a long time we didn’t have a lot of lung cancer advocates because people were not surviving lung cancer. And now, that we have people live years with lung cancer, metastatic cancer, and really are coming off treatment, now we have patients that can be the guiding light. 

They can tell other patients about how they did, their side effects, can tell their story about how targeted treatment impacted their prognosis. So, advocacy is critical, we don’t have a lot of advocacy in lung cancer. We need advocates in every community, rural communities, urban communities, African Americans, Hispanics, Native Americans. In every community there is someone who’s impacted by lung cancer.   

I think that you get something out of it, you feel like you’re helping other people, you’re definitely making people aware. And hopefully, if a legislator hears your story, because last night I was at an advocacy summit, and we had a legislator, and we were asking what really moves legislators to invest in research. And he’s like, “It’s not letter, it’s not emails, it’s these personal stories from patients, and patient advocates.” And we don’t have those stories unless people come out and say and tell them. But they really make people invest, and they really prioritize the importance of research. And that would help you also because if there’s more research, then your next treatment will be funded faster. 

Expert Advice for Recently Diagnosed Lung Cancer Patients

Expert Advice for Recently Diagnosed Lung Cancer Patients from Patient Empowerment Network on Vimeo.

A lung cancer diagnosis can be overwhelming. Lung cancer specialist Dr. Estelamari Rodriguez shares key advice for recently diagnosed patients, including tips related to essential testing and preparing for appointments.

Dr. Estelamari Rodriguez is Associate Director of Community Outreach – Thoracic Oncology at the Sylvester Comprehensive Cancer Center, University of Miami Health System. Learn more about Dr. Rodriguez, here.

See More from Thrive Lung Cancer

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Why Lung Cancer Patient Advocacy Is Essential

Why Non-Small Cell Lung Cancer Patients Should Speak Up About Symptoms and Side Effects

Fact or Fiction? Busting Myths About Non-Small Cell Lung Cancer


Transcript:

Katherine Banwell:

What key advice do you have for recently diagnosed lung cancer patients? 

Dr. Estelamari Rodriguez:

I think that a couple of things. When it’s a diagnosis of lung cancer, it’s very overwhelming, and fortunately now there’s a lot of resources online, but at the beginning there’s a lot of information that you don’t know. So, sometimes if you go online all you do is get scared. I think that you need to answer some very specific questions from your doctor. What is your stage? And then, after your stage, my next question is; what is a molecular driver of my tumor, the sequencing of my tumor?  

In the past, we thought all the lung cancers were the same, but now we know they’re many, many different types of lung cancer. And they’re the EGFR-driven cancers, the ALK, the ROS, they’re all different, they all have different treatment options. And when you go and look online, there’s organized advocacy groups around each of these mutations, and then you can get better information, and valuable kind of insight from the information that is out there. So, I think the first thing is to before you go in the internet, talk to your doctor about your stage and require, not ask lightly.  

Require that your genetic mutation, your sequencing is done at the time of diagnosis of advanced lung cancer. Because that would really determine your treatment.  

So, I think that is very important for patients that get diagnosed. And then also, understand that there are a lot of resources out there, so that you need to ask for questions, bring someone with you. During COVID a lot of the clinics were closed, but we were able to have family members join virtually the visits, and now patients can come in with their family members. 

I find that having someone else in the room who wrote answers and wrote notes, will really help you kind of get the most out of your consultation. And also ask questions for the next time you come, or we have a portal where patients ask questions online. So, the first visit where you get the most questions answered, and sometimes it’s part B and part C. So, you have to keep until you feel satisfied that you understand the plan. We also tell patients that doctors don’t know everything, sometimes the doctor that you have is not the one that you feel you have a connection with. So, know that you have rights, and there are other doctors out there, and you can get second opinions. 

So, you are the best advocate, it’s your life, and you can rely on your doctor, and their physician extenders, physician assistants, nurses, to get as much as you can from that. But also, look outside of your institution, maybe there’s a better option for you.