How Small Cell Lung Cancer Patients Can Best Self-Advocate

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How Small Cell Lung Cancer Patients Can Best Self-Advocate from Patient Empowerment Network on Vimeo.

How can small cell lung cancer (SCLC) patients advocate for optimal care? Dr. Rafael Santana-Davila with the University of Washington School of Medicine shares advice for questions to ask your doctor and about the benefits of telehealth and clinical trials.

[ACT]IVATION TIP

“…make sure that you ask several questions to your doctor is, “Can I have access to a second opinion to a sub-specialist in lung cancer? Or have you thought about my case? And is there any availability of clinical trials here or in other centers?”

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Advice for Small Cell Lung Cancer Patients Considering Clinical Trials

Transcript:

Lisa Hatfield:

So one of your areas of research is studying how small cell lung cancer patients in the general population, those who don’t have access to cancer centers, are treated in order to figure out how to best bring the most recent advances in care to these individuals. Can you share with us some recent findings or learnings from your research, and how can these patients maybe best advocate for themselves?

Rafael Santana-Davila:

Medicine is a team sport. And this is also especially true for cancer. And the difference that…when I see patients, I tell them that it’s not that I’m smarter than the community oncologist. I’m not. The difference that I have with community oncologists is that I’m a sub-specialist. So who I treat are patients who have cancers of the chest or the head and neck. That means that I dedicated my career to treating those patients. And if you ask me questions about lung cancer or head and neck cancers, we can talk forever. But I’m no longer a specialist in treating all other cancers. Community oncologists don’t have that luxury.

So I do think that it’s very important for patients to get a second opinion, to have access to a major cancer center so that they can be sure that the plan of treatment is something that is the top of the line, the best treatment that is available. And they also ask about clinical trials, because there’s clinical trials out there that are moving the needle forward, and participation of those clinical trials is something that is very important. So having an opinion by somebody that, again, treats only lung cancers is very important. Now, the only thing good that COVID had was that it led to telehealth.

So nowadays I can see patients…I work in Seattle, so I can see patients that live across the state and in the farmland where they don’t have access to an academic medical center also to a sub-specialty, but I can see them through telehealth and I can…in the majority of cases, I say, “Yes, your doctor at home has a good plan. Let’s treat you with that.” Or I give some tips or tricks to the community oncologists, or I offer the latest and greatest in clinical trials and patients can make that decision at that point.

So the activation tip for this is make sure that you ask several questions to your doctor is, “Can I have access to a second opinion to a sub-specialist in lung cancer? Or have you thought about my case? And is there any availability of clinical trials here or in other centers?” That’s what I would tell patients. And patients need to be the best advocates for themselves and they are. They know that they’re going through a very rough time, but they just need to say, “What else can I do for this?”

Lisa Hatfield:

Great, thank you so much for that. And as a cancer patient myself and a patient advocate, I fiercely advocate for patients to always, if you get a cancer diagnosis, if you can, consult with somebody who is a specialist or a sub-specialist in the type of cancer you have. It can make a difference for you.

Rafael Santana-Davila:

I agree. And, again, with the era of telehealth, that has opened the ability for this.

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Small Cell Lung Cancer and Immuno-Oncology | What Patients Need to Know

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Small Cell Lung Cancer and Immuno-Oncology | What Patients Need to Know from Patient Empowerment Network on Vimeo.

What do immuno-oncology advancements mean for limited stage and extensive stage small cell lung cancer (SCLC)? Dr. Rafael Santana-Davila with the University of Washington School of Medicine explains the research advancements in immuno-oncology and the status of these treatments and clinical trials for LS-SCLC and ES-SCLC patients.

[ACT]IVATION TIP

“…patients who are diagnosed with small cell lung cancer should ask a doctor, ‘What about immunotherapy? Is that the right thing for me?’”

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Key Resources for Small Cell Lung Cancer Patients and Families

Transcript:

Lisa Hatfield:

Could you please explain research advancements in immuno-oncology and what this means for limited and extensive stage small cell lung cancer patients? And which patients have access to that?

Rafael Santana-Davila:

So, immuno-oncology is something that has completely changed the paradigm of treatment of patients with cancer, and very rough explanation, very simple is treatment that augments a patient’s own immune system so the immune system can recognize the cancer. This has changed dramatically how we, treat many cancers and many cancers, or sorry, many patients, when this is successful, can have very long survivals thanks to development of immunotherapy.

So, a few years ago, there were clinical trials that showed that the addition of PD-L1 inhibitors, which are a type of immunotherapy added to chemotherapy can both extend the duration of what we call progression-free survival, which is the amount of time before the cancer grows, as well as overall survival, which is obviously how long a patient lives.

But the addition of these medications can extend both of these numbers and is helping patients live longer. This was an extensive stage. So today there are two drugs that are approved by the FDA to add to the addition of chemotherapy. There are atezolizumab (Tecentriq), and durvalumab (Imfinzi). They are, in our eyes, equal.  One is not better than the other. And they are added to chemotherapy. Chemotherapy is continued for, in the majority of cases, for four cycles, and then patients go on to receive immunotherapy by itself. This is an extensive stage lung cancer. A limited stage lung cancer, there are current clinical trials that are asking the question of whether these medications are also worth it, do they improve things?

We do not know the answer to that question as of today. We are also very hopeful that they do, but we’re waiting for the results of those clinical trials. So which patients have access to it today is those patients that have extensive stage disease and that is the standard of care. So an activation tip for this is patients who are diagnosed with small cell lung cancer should ask a doctor, “What about immunotherapy? Is that the right thing for me?”

And in the great majority of extensive stage disease, they will be eligible for unless there are contraindications. Some very main contraindications is a history of autoimmune diseases or patients that are in immunosuppressive drugs, but that is a minority of patients.

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Small Cell Lung Cancer Care and Outcomes in Underrepresented Communities

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Small Cell Lung Cancer Care and Outcomes in Underrepresented Communities from Patient Empowerment Network on Vimeo.

How does small cell lung cancer (SCLC) care look in underrepresented communities? Dr. Rafael Santana-Davila with the University of Washington School of Medicine explains how health outcomes differ in some ZIP codes and shares advice for questions to ask your doctor to access optimal SCLC care.

[ACT]IVATION TIP

“…patients should ask their doctors, ‘What are the latest advances in this disease? Am I eligible for it to receive those advances? And where can I see a sub-specialist in this disease? And is it a worthwhile point?’”

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Key Resources for Small Cell Lung Cancer Patients and Families

Transcript:

Lisa Hatfield:

Does treating small cell lung cancer patients in underrepresented communities look different than the general population? And are there specific considerations or recommendations SCLC patients from underrepresented communities when it comes to treatment options, including clinical trials or targeted therapies?

Rafael Santana-Davila:

In the majority of cases, patients treated in underrepresented communities do not look different than in the general population in small cell lung cancer. Why? It’s because community oncologists are very good. So they have a hard job, but they’re very good. So the majority of patients get the standard of treatment.

Although we know though that patients with underrepresented communities do fare worse.  And we do not know the reasons for that. A lot of that is because of poverty or many other things. I’ve seen people say that one of the main factors that will determine how long you live is what ZIP code you were born in. So underrepresented communities do do worse in general, not specifically for small cell, but in general.

I do think that what we..like we said before is what patients need to do is advocate for themselves and ask their doctors, “Am I eligible for a clinical trial? Am I eligible for what is the latest and greatest for the disease? Any new advances that you see coming?”And like we said before is seek a second opinion with a sub-specialist in the treating of this disease.

So as like we said before in terms of activation, is you need to…patients need to ask their doctors, “What are the latest advances in this disease? Am I eligible for it to receive those advances? And where can I see a sub-specialist in this disease? And is it a worthwhile point?” Many times it may not be an initial diagnosis, but when patients have recurring disease, that’s when clinical trials are really important because that’s where we’re making the most advances in the treatment of small cell lung cancers, when patients have disease that has recurred despite chemo-immunotherapy.

So my activation tip for this is that patients should ask their doctors, “What are the latest developments in the treatment of this lung cancer? And am I eligible to receive those treatments? And is this a time where I should seek a second opinion or be referred to a clinical trial and another center?”

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What Treatment Options Are Available for Small Cell Lung Cancer?

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What Treatment Options Are Available for Small Cell Lung Cancer? from Patient Empowerment Network on Vimeo.

What do extensive stage small cell lung cancer (SCLC) and limited stage SCLC patients need to know about treatments? Dr. Rafael Santana-Davila with the University of Washington School of Medicine shares a status update on where treatment options stand and discusses how he works with patients on treatment decisions.

[ACT]IVATION TIP

“…patients need to make sure that they know what the goals are. ‘What is…where am I going to…how am I going to feel in the next month? What is the likelihood that this cancer is going to shrink and this cancer is going to make me live longer?’”

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Transcript:

Lisa Hatfield:

So what is the latest information related to treatment options for limited stage LS and extensive stage ES small cell lung cancer? And how do you work with your patients to make treatment decisions about that?

Rafael Santana-Davila:

So this is, unfortunately, a disease where little progress has been made throughout the years because it’s a very aggressive disease. And the main improvement that has been made in the last five years is the addition of immunotherapy to chemotherapy in patients with extensive stage disease. There have now been several clinical trials that have shown that adding immunotherapy improves overall survival. That means that patients live longer.

And there is a very small, but a few patients that have, that see survival into the many years, which is something that was unthinkable before the era of immunotherapy. We do not know if the addition of immunotherapy to limited stage disease, which treatment is, in the majority of cases, chemotherapy and radiation, we do not know if that works or not, that there are clinical trials that are going on, most of them have completed accrual, so we’re just waiting for the data to mature to let us know if that is something that also works there.

We have a lot of hope that it’s the case, but right now, in September 2023, we do not know the answer for that. What I work…how I work with patients to make treatment decisions is I present them with the options of the treatment. So there are always options from being as aggressive as we can to treat it, to try to shrink the cancer, which, many times, comes at the price of side effects to just doing best supportive care, which is we know that sometimes shrinking the cancer is not what is going to make people live longer.

So it’s a conversation that we constantly have with patients where we say, “This is what we propose, this is what the consequences of treatment is going to be, and these are the alternatives.” And you have to work with them depending on their goals, depending on what they want to achieve, you make treatment decisions.

Ultimately, what I tell my patients is, “You’re the captain of the ship. I’m here just to help you navigate these rough waters, but, ultimately, you’re the one that needs to tell me where we want to go.” Okay. An activation tip is patients need to make sure that they know what the goals are. “What is…where am I going to…how am I going to feel in the next month? What is the likelihood that this cancer is going to shrink and this cancer is going to make me live longer?” Those are the questions that they need to make sure they understand.

And something that also they want to know is, what are the goals? It’s very different when you see a very young patient, their goal is to see their high school kid enter college than a 90-year-old patient that their goal is maybe to live the rest of their life with the least intervention or with the least side effects possible. So every patient has different goals. 

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Key Questions to Ask About Extensive Stage Small Cell Lung Cancer

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Key Questions to Ask About Extensive Stage Small Cell Lung Cancer from Patient Empowerment Network on Vimeo.

What should small cell lung cancer (SCLC) patients ask to help prepare themselves? Dr. Rafael Santana-Davila with the University of Washington School of Medicine shares how he explains small cell lung cancer, particularly extensive stage SCLC to patients and key questions to ask about treatment and care.

[ACT]IVATION TIP

“…you need to talk to your doctors and say, ‘Okay, what am I looking at? What are the goals of treatment? How am I going to feel in the next month? How am I going to feel in the next three months? And where am I going to be in the next six months? And what is my prognosis? And what do you expect to happen?’”

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Transcript:

Lisa Hatfield:

Dr. Santana-Davila, how do you explain extensive stage small cell lung cancer to your newly diagnosed patients? And what are key questions that patients and families should ask at the outset of their care?

Rafael Santana-Davila:

Oh, great. Thank you. Thank you for that. That is a great question. So patients who have metastatic small cell lung cancer, which is the majority of those with extensive stage, it’s a disease that is not curable, that we treat with chemotherapy and immunotherapy, that the majority of patients have a great response to treatment.

But our goal of treatment is to make patients feel better and have patients hopefully live longer. One of the key questions that families should ask at the outset of care, and this is for extensive stage cancer as well as any other cancer, is “What are the goals of treatment? What do I expect it to be? How is my life going to look a few months from now? And what can I expect?” That is, for me, very important that patients know before they start on the journey of treatment.

How do I explain what extensive stage is? What does it mean…how I explain this to patients is this is a cancer that has arose in your lung and has moved to other places. So we cannot cure it. We can treat it. We can hopefully shrink it and help you to live longer and live better. The majority of patients that present with this disease present with a lot of symptoms. They present with symptoms from the cancer. And many times it’s an emergency to try to treat them as soon as possible.

So this is a conversation that we have with them that we tell them, “It’s very likely that you will feel better, that you’ll respond to treatment.” But again, an activation tip is you need to talk to your doctors and say, “Okay, what am I looking at? What are the goals of treatment? How am I going to feel in the next month? How am I going to feel in the next three months? And where am I going to be in the next six months? And what is my prognosis? And what do you expect to happen?” 

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What Is the Difference Between Limited Stage and Extensive Stage Small Cell Lung Cancer?

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What is the Difference Between Limited Stage and Extensive Stage Small Cell Lung Cancer? from Patient Empowerment Network on Vimeo.

Limited stage and extensive stage small cell lung cancer (SCLC) are two different types, but how do they differ? Dr. Rafael Santana-Davila with the University of Washington School of Medicine explains limited stage SCLC versus extensive stage SCLC, treatment methods for each type, and the importance of communication.

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Transcript:

Lisa Hatfield:

Can you explain the difference between limited stage and extensive stage small cell lung cancer, please?

Rafael Santana-Davila: 

So this is actually a historical definition. Back in, I don’t know the date exactly, but somewhere in the 1980s, how we treated this was when patients…the radiation doctor could treat all the area of disease with radiation, then we call that limited. And limited stage disease means that the person, the patient can get radiation and chemotherapy with the goal of eradicating the disease. Extensive stage is when the disease cannot be treated with a single area of radiation.

In the majority of cases, there’s a very clear distinction, for example, patient has metastatic disease to the liver, that clearly is extensive, stage, but there are occasions where, limited and extensive is very hard to know and the radiation doctor would…two different radiation doctors will give you two different things.

And the important thing in this case is that this is a…all of medicine is a team sport, but treatment of cancer is more because the medical oncologists need to talk to the radiation oncologists to make sure that we’re on the same page as to what is the best treatment we can offer a patient. 

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Battling Small Cell Lung Cancer | One Man’s Journey

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Battling Small Cell Lung Cancer | One Man’s Journey from Patient Empowerment Network on Vimeo.

Terrence’s diagnosis with extensive stage small cell lung cancer (SCLC) came as a shock. He learned the value of a positive attitude and how “just as in battle, I understood early on that a solid partnership with my healthcare team would be crucial to my outcome.” He shares his perspective, lessons learned, and how to stay [ACT]IVATED in your care.

Disclaimer: Thank you to small cell lung cancer expert Dr. Rafael Santana-Davila, PEN’s Empowerment Leads, patients, and care partners for reviewing and collaborating on this video. This video has been edited to protect the privacy of certain individuals, and the names and identifying details have been changed.

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Small Cell Lung Cancer Care | Communication As a Key

Transcript:

My name is Terrence, and I’m living with extensive-stage small cell lung cancer (SCLC). This diagnosis came as a shock, but I decided to persevere and fight. Cancer care can feel like a marathon, and certainly not a sprint – particularly for patients like me. As a small cell lung cancer survivor, I want to share my perspective and lessons learned from my cancer journey about staying ACTIVATED in your care.

My symptoms started with a cough that wouldn’t go away. As a military veteran, I assumed the cough was something I picked up years earlier. And even though I had been a smoker, my doctor didn’t order any scans as a pre-emptive screening measure, nor did I know what questions to ask. It wasn’t until I found a lump under my arm that further testing was done. It was at that time that I also put the other pieces of the puzzle together, which included symptoms of higher than normal blood pressure and knee pain.

I received chemotherapy and radiation, and also quickly learned that despite the challenges of treating my cancer, maintaining a positive attitude was the most critical part of my regimen. I was fortunate to have a medical team that listened to me and didn’t dismiss my concerns. Just as in battle, I understood early on that a solid partnership with my healthcare team would be crucial to my outcome.

Under the care of my healthcare team, I continue to receive scans of my lungs and brain every three months and feel grateful to be doing well. My care team and I also actively look for clinical trials that may be right for me. I urge other small cell lung cancer patients to ask your care team questions to learn about treatment options and what to expect during and after treatment – you matter. 

For the past decade, there have been a lot of research advancements about non-small lung cancer (NSCLC) treatment, but our small cell lung community is feeling left out of conversations about investments to improve lung cancer diagnosis and treatment. The SCLC patient community also deserves improvements in care and treatment. Fortunately, things are changing. Progress in personalized medicine has allowed scientists to develop targeted therapies tailored to a patient’s body using their genes to prevent, diagnose, or treat an underlying disease. Clinical trials are one opportunity to be on the ground floor of these developments where you may be able to get tomorrow’s medicine today. I hope sharing my perspective will make a difference for others. 

While the battle ahead has uncertainties, stay [ACT]IVATED with these tips:

  • Don’t allow stigmas to keep you from getting the best care, now is the time to get the right care no matter how you got the cancer.
  • Ask your care team questions to learn about small cell lung cancer treatment options and what to expect during and after treatment.
  • Ask if a clinical trial may be a potential treatment option for you.
  • Stay abreast of small cell lung cancer treatment options and research advancements.

Whether it’s combat in war or fighting cancer, no matter who you are, take it from me, attitude is everything. Stay [ACT]IVATED by being informed, empowered, and engaged in your small cell lung cancer care.

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Lessons From a Small Cell Lung Cancer Care Partner

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Lessons From a Small Cell Lung Cancer Care Partner from Patient Empowerment Network on Vimeo.

As a small cell lung cancer (SCLC) care partner, Anita learned things during her husband Terrence’s cancer journey that she’d like to share to help others. “Communication with the healthcare team and learning about your loved one’s cancer are key to supporting their cancer journey.” She shares lessons learned and specific advice for how to support your loved one in their cancer care.

Disclaimer: Thank you to small cell lung cancer expert Dr. Rafael Santana-Davila, PEN’s Empowerment Leads, patients, and care partners for reviewing and collaborating on this video. This video has been edited to protect the privacy of certain individuals, and the names and identifying details have been changed.

See More from [ACT]IVATED Small Cell Lung Cancer (SCLC)

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Battling Small Cell Lung Cancer | One Man’s Journey

 Moving Past Small Cell Lung Cancer Stigma | A Patient Navigator Explains

 Small Cell Lung Cancer Care | Communication As a Key

Small Cell Lung Cancer Care | Communication As a Key

Transcript:

Staying ACTIVATED in your loved one’s cancer care is essential to becoming informed, empowered, and engaged in their care, take it from me. My name is Anita. As a care partner to my husband Terrence who has extensive-stage small cell lung cancer (SCLC), I want to share my perspective and lessons learned from his cancer journey. 

It was difficult seeing my husband Terrence struggle with a cough that wouldn’t go away. We also now know that he should have received lung cancer screening due to his past history of smoking. As a care partner, I blamed myself for not speaking up at his earlier appointments. How could I have advocated differently?

Though it was challenging learning that the extent of his cancer may have been prevented with recommended screening, I want to share my lessons learned to help other patients and care partners who may be struggling with the impacts of cancer.

Ongoing communication with the healthcare team and learning about your loved one’s cancer are key to supporting their cancer journey. To help your loved one, you can join them at their doctors’ appointments to serve as a second set of ears, to take notes, to ask questions, and to assist in the shared decision-making process. Staying [ACT]IVATED as a care partner continues to be key in helping Terrence connect to the right care at the right time.

My [ACT]IVATION tips for other care partners are to:

  •   Ask the stage of the cancer and what the lab test results mean.
  •   Inquire about treatment options and what the doctor recommends for treatment.
  •   Find out if there’s a clinical trial that is a treatment option.
  •   Pose questions about the goal or goals of treatment.
  •   Learn what to expect from treatment impact on daily life and ask about support services.
  •   Inquire about who you can contact about side effects or other issues.
  •   Avoid care partner burnout, ask someone for help to ensure you get some self-care and time to recharge.

If you’re a care partner helping a loved one in the fight against small cell lung cancer, knowledge is everything. Stay [ACT]IVATED by being informed, empowered, and engaged in their care.

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Moving Past Small Cell Lung Cancer Stigma | A Patient Navigator Explains

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Moving Past Small Cell Lung Cancer Stigma | A Patient Navigator Explains from Patient Empowerment Network on Vimeo.

Diana is a patient navigator who assists small cell lung cancer (SCLC) patients from the stages of screening through follow-up care. Diana explains SCLC risk factors, patients commonly diagnosed with extensive stage SCLC, and barriers to care. She shares the origin of some stigma about lung cancer. “Past TV ads to stop smoking built a stigma around cigarette smoking that has created an environment of blame around lung cancer.” She discusses how patients can stay [ACT]IVATED in their care and in improving future treatments.

Disclaimer: Thank you to small cell lung cancer expert Dr. Rafael Santana-Davila, PEN’s Empowerment Leads, patients, and care partners for reviewing and collaborating on this video. This video has been edited to protect the privacy of certain individuals, and the names and identifying details have been changed.

See More from [ACT]IVATED Small Cell Lung Cancer (SCLC)

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Battling Small Cell Lung Cancer | One Man’s Journey

 Small Cell Lung Cancer Care | Communication As a Key

Small Cell Lung Cancer Care | Communication As a Key

 Lessons From a Small Cell Lung Cancer Care Partner

Transcript:

My name is Diana, I’m a patient navigator. I help patients navigate screening, diagnosis, treatment, and follow-up care for small cell lung cancer. 

Small cell lung cancer (SCLC) makes up about 15 percent of lung cancer in the U.S. Many of these patients are diagnosed with extensive stage small cell lung cancer (ES-SCLC). Though being a current or former smoker increases the risk of SCLC, patients who were exposed to secondhand smoke, workplace carcinogens, environmental pollution, or other factors are also at-risk for SCLC.

Even though smoking is a major risk factor for SCLC, nobody deserves to get cancer. Nicotine is an addictive substance that is extremely difficult for many smokers to quit – especially for those who started at a very young age. Past TV ads to stop smoking built a stigma around cigarette smoking that has created an environment of blame around lung cancer. The stigma is many times greater for extensive stage small cell lung cancer patients. 

Patients diagnosed with SCLC can come from a variety of ethnic, racial, and social classes. However, patients from underrepresented communities of Black Indigenous People of Color (BIPOC), low socioeconomic, and LGBTQ+ groups often take on the brunt of inequitable care in the form of limited access to quality care, lack of healthcare insurance, and other barriers to care. 

Remember that you are the patient, and you have a choice in your treatment options depending on your goals for treatment and quality of life – no matter how you got the cancer. So stay encouraged as investments in SCLC research continue to fuel hope.

My [ACT]IVATION tips are:

  •   Make sure you have a full picture of available treatment options.
  •   Help educate others to raise awareness of SCLC; advocate for improved care.
  •   Inquire about small cell lung cancer clinical trials to help researchers discover new and refined treatments.

With these [ACT]IVATION tips in mind, remember, as a patient staying ACTIVATED in your cancer care is essential to becoming informed, empowered, and engaged in your care.

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