Lung cancer support

Felipe had spent his entire life focused on how the body works and how to keep it working well. With a background in exercise physiology and injury prevention, his career was built around helping people recover, rebuild, and, whenever possible, avoid injury altogether. So, when something didn’t feel right in his own body, it stood out immediately.

In 2019, Felipe was running a half marathon with 2 clients when he noticed a cough that felt different from anything he had experienced before.

“I couldn’t catch my breath, which was very unlike me,” he said. “People were actually stopping and asking if I was okay.”

He finished the race, but the symptoms stayed. He was diagnosed with chronic bronchitis and asthma and prescribed inhalers and steroids, but things didn’t improve.

By 2021, after months of worsening symptoms and delays in care during the COVID-19 pandemic, Felipe went to urgent care. His oxygen levels were dropping to dangerous levels, and he was sent to the emergency room where a CT scan revealed nodules in his lungs.

Soon after, he was diagnosed with lung cancer. “It was so completely unexpected,” he said. “I was healthy in every way, and I’d never smoked, so getting lung cancer wasn’t something I even thought was possible.”

“I lost my identity”

At the same time, other parts of Felipe’s life were shifting just as dramatically. A flood destroyed his 10,000-square-foot gym overnight, and he was about to turn 65, a big milestone that included a long-time dream of relocating to Florida.

In April 2021, Felipe underwent a lobectomy. The procedure was successful. Physically, he recovered quickly. But what followed was something he hadn’t anticipated.  

In the months following surgery, Felipe expected to return to the life he once knew. Instead, he felt himself drifting further and further away from it. For someone whose life had always been grounded in discipline and driven by purpose, the shift was deeply unsettling.

“I lost my identity,” he said. “I lost my purpose.”

At first, it didn’t have a name; it just showed up in patterns he couldn’t ignore. Overeating, drinking more than he should, not training, constantly consuming news and social media, yet he was still showing up for work, still meeting responsibilities. From the outside, everything looked intact. But inside, something felt off and disconnected.  

“I was just not myself at all,” he shared. “I was in a really dark place.”

Then he came across a description of those behaviors being called “slow suicide.” That stopped him in his tracks. Not because suicide had ever crossed his mind, it hadn’t, but because he recognized the pattern. It was a slow drift, quiet neglect, and disconnection from himself.

That realization pushed him to try to understand what he was actually experiencing. Through research he realized it had a name: high-functioning depression.

A turning point

Felipe doesn’t identify a single moment that changed everything, but rather a more gradual realization that he needed to do something different.

His approach was to return to training, nutrition, and structure, the fundamentals that had served him well throughout his life. He sought out accountability and rebuilt his routines with intention.

Over time, the changes were significant.

“I got into the best shape of my life,” he said, “and I dragged myself out of a dark place while doing it.”

But more importantly, he began to see his experience differently and as an opportunity to return to the life of serving people that had once defined him.

Rethinking “survival”

As people around him began using the word “survivor,” Felipe found himself pushing back against it. To him, it didn’t go far enough.

“Just surviving cancer is a very low bar,” he said.

Felipe believes that for people with early-stage cancer, surviving is not the only endpoint. It can be a beginning. What matters more is how you rebuild, how you take care of yourself, and how you move forward.

A disconnect

As Felipe moved further from treatment, he noticed something that surprised him and inspired his next steps.

“There’s a disconnect between the end of medical care and the re-starting of real life,” he said. “Your appointments become less frequent and the structures that guide you through your diagnosis and treatments fade away.”

What to expect when your care ends isn’t always clearly defined, and for Felipe, that gap seemed like an opportunity to help others navigate what had proven tricky for him.

From experience to action

Felipe hadn’t planned to write a book about his experiences, but as he reflected on what he had gone through, he realized that much of what had helped him to navigate life after cancer wasn’t easy to find in one place.

“There are resources out there,” he said. “But they’re not organized. You have to go find a little bit here, a little bit there, and piece it together yourself.”

What he wanted to create was something different. Not a memoir, and not a set of rigid instructions, but a starting point. A way for people to begin making sense of what comes next.

That idea became his book, “Don’t Call Me a Survivor: Thriving Beyond Cancer.”His book brings together the core elements of training, nutrition, mindset, and accountability, all of which helped him rebuild. It introduces the idea that these things don’t work in isolation.

“Everything has to work in the same direction,” he said. “It’s the synergy of it all coming together that creates big change.”

At its core, the book is about awareness. Helping people recognize that the period after treatment can be just as challenging as the diagnosis itself, and that without structure or support, it’s easy to drift.

From there, the book points toward something more: a path forward. Building something different. After writing the book, Felipe began building something more structured, something that could help others not only understand what they were experiencing but begin to move forward too.

At his gym in South Florida and through his virtual client roster, his approach reflects what he learned through his own experience; that progress doesn’t come from one thing alone.

His “Phoenix Path” model moves from awareness to action, with a 90-day program that offers daily structure, weekly support, and a focus on rebuilding from the ground up.

It’s not about doing everything at once, he emphasizes. It’s about starting where you are.

That might mean starting with health before fitness and building a foundation through nutrition, breathing, and basic movement before pushing further. It might mean rebuilding confidence, rediscovering a sense of purpose, or creating structure where it’s been lost. And it always means meeting people where they are.

“Everything can be improved,” he said, “I help people focus on the fundamentals to feel better in a comprehensive way that’s unique to them, what they’ve been through, and where they want to go.”

Full circle

Earlier this year, Felipe heard from one of the runners from that half marathon where his symptoms first appeared. Now approaching 80, that same runner, Dan, was preparing to complete another half marathon, this time after his own cancer diagnosis.

On May 17, 2026 Felipe joined Dan for that race.

The moment felt full circle in a way he couldn’t have imagined years ago, when he was struggling to understand what was happening in his own body. To run alongside this man again after everything they’ve both been through seemed almost surreal.

For Felipe, this kind of real, human, and hard-earned connection is what it’s all about.

Looking ahead

Today, Felipe continues to train, build, and connect, drawing directly from his experience with lung cancer. He’s also focused on reaching more people, especially those navigating the uncertain space between treatment and whatever comes next.

He still undergoes regular scans, and there is still uncertainty. But his relationship with that uncertainty has changed. Instead of waiting for answers, he focuses on what he can control: how he trains, how he eats, and how he shows up each day.

For Felipe, surviving was never meant to be the end of the story. It was the beginning of a different experience, one rooted not just in getting through, but in moving forward with intention.

Because for him, the real question isn’t whether you survive. It’s what you do next.

A lung cancer diagnosis can bring a lot of questions, emotions, and uncertainty. GO2 for Lung Cancer's free HelpLine connects you with trained specialists who can provide support, answer questions, and help you find resources along the way. Whether you're newly diagnosed, in treatment, or navigating survivorship, you don't have to face it alone.

Call us at 1-800-298-2436 or email support@go2.org to learn more.

Leslie lives in St. Augustine, FL with her husband, Ken, and their elderly rescue cat. Her children are grown and live in Maryland and Washington, DC. When not traveling, Leslie can be found soaking up the sunshine at the nearby beach. 

When Leslie's cough wouldn't go away, she did what most people would do; she went to her doctor. Then she went back again. And again.

She tried antibiotics and inhalers from her allergist, but nothing helped. Meanwhile, the cough worsened, her breathing became more difficult, and the active lifestyle she loved started slipping away. At the time, Leslie was teaching fitness classes, yet suddenly she found herself struggling to catch her breath.

As the weeks passed, Leslie became increasingly concerned. Her lymph nodes had become noticeably swollen, and she was getting sicker by the day. Although her primary care physician finally ordered a chest CT scan, the appointment was weeks away.

Friends urged her to stop waiting, and finally she listened. She drove herself to a nearby emergency room (ER), expecting to learn she had pneumonia or some other explanation for her symptoms. Instead, a CT scan performed at the hospital revealed a mass in her lung.

“Here’s why you can’t breathe”

The doctor in the ER returned to her room carrying a piece of paper.

"He said, 'I have good news. Your blood work is normal, and your COVID test is negative,’” Leslie remembered. “Then he handed me the scan results and said, 'Here's why you can't breathe.'"

Reading the report herself, Leslie saw the words "lung mass."

"I started screaming, 'Am I going to die?'"

Alone in the hospital room, she called her husband in a panic. Then, something remarkable happened. Her next-door neighbor, an oncologist, happened to be on call that day.

"She walked into my room, and it was like an angel at my bedside," Leslie said.

Her neighbor sat with her, held her hand, and said, “we’ll figure this out together.” Those words became an anchor during one of the most frightening moments of her life.

Finding hope in biomarker testing

A biopsy soon confirmed that Leslie had lung cancer. Because the cancer had already spread to her lymph nodes, doctors knew it was advanced. Like many people diagnosed with stage 4 (IV) lung cancer, Leslie immediately feared the worst.

"All I could think was, 'I'm going to die. Am I going to see my daughters get married? Do I want to be buried or cremated? What’s going to happen to me?' My brain just spiraled."

Her neighbor, however, knew there was another important piece of information still to come: biomarker testing. The wait was agonizing. When a lab error delayed her results for nearly a month, she spent long days sitting outside in the sunshine, reading books, and trying to keep her mind occupied.

When the results finally came through, her neighbor actually printed them out and walked them over to Leslie’s house. She said, "This is good news!" 

Leslie's cancer had tested positive for an ALK biomarker, and she heard a phrase that many people with ALK-positive lung cancer have heard before.

"You've won the cancer lottery."

At first, the statement felt impossible to understand.

"It didn't feel like I was winning any lottery," Leslie said.

But as her doctors explained what the ALK biomarker meant, Leslie began to understand. Advances in targeted therapies were allowing many people with ALK-positive lung cancer to live much longer and better than ever before. For the first time since her diagnosis, she felt a glimmer of hope.

The worst club you never wanted to join

Not long after her diagnosis, Leslie discovered the ALK Positive support community, a patient-founded and patient-driven nonprofit organization committed to transforming the future for everyone affected by ALK-positive cancer. No doctor had suggested it. She found it herself. The impact they had on her was profound.

"The ALK Positive group saved my life," she said.

At the time, Leslie was preparing to undergo radiation treatment for brain metastases. She already had the mask made and appointments scheduled. Then, members of the ALK Positive community encouraged her to pause and ask more questions.

"They said, 'Wait. Let the treatment work first.'"

After discussing options with her medical team, Leslie decided to hold off. It turned out to be a good decision. The targeted therapy worked. Her brain metastases responded without radiation.

For Leslie, it was an early lesson in the power of connecting with others who had walked the same path. She found people who had been living with ALK-positive lung cancer for as long as 10 years or more. She found friendships, practical advice, and reassurance that life could eventually feel normal again.

"You won't always be thinking about cancer," people told her. "It gets better."

They were right. Today, Leslie regularly attends ALK Positive events and has formed close friendships within the community.

"Lung cancer is the worst club you never wanted to join," she said, “but we have the best members.”

Learning to accept help

If there was another unexpected gift in the midst of Leslie's diagnosis, it was discovering just how deeply she was loved.

After Leslie’s diagnosis, her people started to show up for her in important and practical ways. Friends delivered meals. Cards arrived in the mail. Flowers showed up at her door. People researched treatment options, shared resources, and offered support in every way they could.

"The kindness was overwhelming," she said.

At first, Leslie found that accepting help felt uncomfortable. Over time, however, she realized that allowing people to help was a gift for them, too.

Looking back, Leslie describes the experience in a way she has never forgotten.

"It's almost like I died and I was at my own funeral," she said. "It was such a gift. I got to see how much people love me while I'm alive."

During the hardest period of her life, she experienced something beautiful.

"I felt like the luckiest person because who gets to experience that? Most people don't get to know how loved they are and how much they’ve meant to people."

Leslie’s friends across the world also helped her raise over $8,000 last year to donate to ALK Positive, which has contributed to the over $10.8 million in patient research funding since 2017. She is beyond grateful for their support of research.

Looking toward the future

Today, Leslie and her husband have retired and moved to Florida, a decision influenced in part by her diagnosis. Rather than waiting for someday, they're embracing the life they had always hoped to build. There are home projects to finish. Trips to plan. New adventures to take. She’s planning for the future in ways she never expected when she was first diagnosed.  

Leslie is also participating in a clinical trial that is exploring new ways to prevent resistance to targeted therapies. The experience has deepened her appreciation for the researchers and physicians working to improve outcomes for people living with lung cancer.

"The research gives me so much hope," she said.

Less than 2 years ago, Leslie was wondering if she would live long enough to see her daughters' futures unfold. Today, she's busy planning her own.

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When Misty Shields was 13 years old, her father was diagnosed with small cell lung cancer (SCLC). He was 48. Within 2 years, he was gone.

That loss changed everything for her. While other teenagers were figuring out who they wanted to be, Misty was looking online to find out how to become an oncologist. She had found her purpose, even if it came wrapped in grief.

Today, Misty Shields, MD, PhD, is one of the leading researchers and clinicians working to make SCLC a more treatable disease. She sat down with GO2’s Chief Patient Officer, Danielle Hicks, at a recent Lung Cancer Living Room® to share what’s changing in the world of SCLC and why she believes real hope is finally within reach.

Watch the full Lung Cancer Living Room conversation with Dr. Misty Shields on SCLC below.

A disease that went decades without progress

For most of the last 50 years, the story of SCLC treatment hasn’t changed much. Chemotherapy was the main tool, and it often worked for a little while, but not for long or well enough. Unlike non-small cell lung cancer (NSCLC), which saw a wave of new targeted therapies and immunotherapies reshape outcomes over the past decade, SCLC lagged behind.

That personal history is part of why Dr. Shields pushed into this field. “SCLC has been neglected for a long time,” she said. “That’s not acceptable.”

The treatments that are changing the picture

The first real turning point came in 2018 and 2019, when the Food and Drug Administration (FDA) approved the first immunotherapy drugs for SCLC. Drugs like Tecentriq (atezolizumab) and Imfinzi (durvalumab) work by releasing the brakes on the immune system, helping it recognize and attack cancer cells. They are used alongside or after chemotherapy, depending on the stage of disease, and they are helping some people with SCLC live longer.

Then, in 2025, a new treatment for SCLC was approved by the FDA. Dr. Shields explained that Imdelltra (tarlatamab) is a drug that works in a completely different way. Think of it as a connector. It acts like glue between the immune system’s T-cells and the cancer cells, pulling them together so the immune system can do its job. This approach, called a T-cell engager, is now the standard second-line treatment for extensive-stage (stage 4 (IV)) SCLC. It represents the first major shift in what doctors reach for when cancer stops responding to first-line therapy.

SCLC isn’t one disease anymore

For decades, doctors treated all SCLC the same way. That’s also starting to change. Researchers have discovered that SCLC has distinct subtypes, or different versions of the disease that may behave differently and respond differently to treatment.

This is the same shift that happened in NSCLC years ago, and it opened the door to targeted therapies that dramatically improved outcomes for many people. The hope is that identifying SCLC subtypes will do the same. The work is still in early stages, but the direction is clear: the future of SCLC treatment will likely be more personalized, not one-size-fits-all.

Finding SCLC earlier and understanding it better

SCLC is often caught late, partly because it can grow and spread quickly. Researchers are now looking at new tools that could change that. Liquid biopsies, or blood tests that detect cancer cells or fragments of cells in the bloodstream, may help doctors diagnose SCLC earlier or track how the cancer changes over time. Multi-cancer early detection tests are also being studied to flag cancers such as SCLC before symptoms appear.

For a fast-moving disease like SCLC, finding cancer earlier could dramatically change outcomes.  

Clinical trials: progress requires participation

Every treatment Dr. Shields discussed exists because people with lung cancer agreed to be part of a clinical trial. It’s worth saying that plainly, because trials are still widely misunderstood.

A clinical trial is not a last resort. It often means people gain access to the newest treatments before they are widely available. For people with SCLC, that access can matter enormously, especially because the disease tends to progress quickly.

People with SCLC often face barriers to joining trials, such as strict eligibility requirements, how fast the disease progresses, and the need to act quickly. Researchers know this is a problem. Many are now designing studies with more flexible rules and faster enrollment to make sure more people can participate. More participants mean faster answers, and faster answers mean better treatments for everyone who comes after.

“The nihilism is no longer welcome.”

Dr. Shields closed the conversation with a message she clearly feels deeply: “Never give up hope. The breakthrough might be just right around the corner. This is the new era for small cell lung cancer, and the nihilism is no longer welcome.”

For the 15-year-old who lost her father to this disease, that shift is personal. For the people living with SCLC today, it may be life changing.

If you would like to learn more about SCLC, have questions, or need support, our SCLC program can help. Contact our free HelpLine at 1-800-298-2436 or email support@go2.org.

Donna Thompson is a 3-time survivor of early-stage, non-small cell lung cancer, thriving more than a decade since her first diagnosis. After 2 surgeries to remove portions of her right lung, she carries forward an experience that deepens her commitment to lung cancer awareness, mental health advocacy, and building supportive communities. Donna shares her story to inspire hope, reduce stigma, and elevate survivor voices. Her advocacy spans education, outreach, and research collaboration within the lung cancer community. She speaks at wellness and community events, using her experience to empower others navigating illness and recovery. Professionally, Donna is the director of Human Resources and a SHRM Certified HR leader, known for leading with empathy and practical insight, and supporting people through complex workplace challenges. She finds strength - literally and emotionally - through faith, fitness training, and time in nature. For her, movement is medicine, and advocacy is a calling rooted in compassion and resilience.

Donna remembers the exact moment everything changed. It was September 2015, and she went to the emergency room for something else entirely. Her blood sugar was dangerously high, and she wasn’t feeling right. They ran tests, monitored her, and sent her home. The next day, the ER doctor called her and said the radiologist saw a mass in her lung and that she should have it checked out right away.  

At 45 years old, and having no smoking history, lung cancer wasn’t on her radar. It wasn’t on anyone else’s either.

“Everyone I talked to was like, ‘You’re too young. You’ve never smoked. This is probably not lung cancer.’”

But within 5 weeks, after scans, a biopsy, and what she still calls “the longest 5 weeks of my life,” Donna had her answer. It was lung cancer after all.  

"The best possible situation”

Looking back, Donna sees the moments that led to her lung cancer diagnosis a little differently.

“I always say that was God getting my attention, whispering to me in the quiet, still moments," she said.

The tumor was stage 2 (II) and operable. In many ways, it was the best-case scenario for a diagnosis no one expected. Her surgical team moved quickly.

“She told me, ‘This is the best possible situation. It’s in a good location. We can take it out.’”

By the end of November, just 2 months after that ER visit, Donna had surgery, and for a moment, it felt like the worst might already be behind her.

When the plan changes

Initially, Donna was told she wouldn’t need chemotherapy. The surgery had been successful, her margins were clean, and everything pointed in the right direction.

Then the pathology report came back. It showed that her tumor was more complex than expected. It was an unusual form of adenocarcinoma that didn’t behave in typical ways. Her case was sent to multiple cancer centers, and the recommendation shifted.

“I remember my surgeon calling me herself,” Donna said. “She said, ‘I told you one thing, and now it’s changing, and I need to explain that to you.’”

A second opinion confirmed it: chemotherapy was recommended. Donna agreed, but her body had other plans.

When treatment becomes the crisis

“Every time I got chemo, I ended up in the ER,” she said. “Something was always going wrong.”

After just two treatments, it was clear that this wasn’t sustainable. Her oncologist made the call.

“He said, ‘Your body can’t handle this. We’re done.’”

It was a moment that carried both relief and uncertainty. The treatment meant to protect her was, instead, putting her in danger. And so, once again, Donna adjusted.

“I didn’t survive to be basic.”

In the months that followed, Donna made a decision that would shape everything that came next.

“I didn’t survive to be basic,” she said.  

Instead, she poured herself into her health and started working with a trainer, changing her diet, and reclaiming a sense of control over her body.

“I got into the best shape of my life,” she said. “I came off medications. My A1C went back to normal. Everything changed.”

But the transformation wasn’t just physical. It was also about identity.

“The cancer gave me more than it took from me,” she said. “I learned who I am, how strong I can be, and what I really need in the world. I learned what and who are important to me. It put such a clear focus on what I want for my life.”  

Finding community and belonging

Still, parts of the experience felt isolating.

“I kept meeting people, and they were all stage 4 (IV),” she said. “I felt like, am I even supposed to be here?”

She was grateful for her outcome, but that gratitude came with a quiet tension.

“I didn’t want to take up space in their groups,” she said. “But I still needed support too.”

And there was something else. “I didn’t see anyone who looked like me.”

It wasn’t until years later, through social media connections, introductions, and small group conversations, that Donna found what she had been missing: a close-knit circle of Black women who truly understood her experience.

“We started meeting regularly, talking, and supporting each other,” she said. “There’s something about being with people who understand you completely without you having to explain that changes everything. They know what they did for me, and what we do for one another. Finally, I had community.”

A second diagnosis, and a different reality

For nearly 7 years, Donna focused on moving forward, rebuilding, and holding onto the belief that she had come through something and grown because of it.

Then, in 2022, everything shifted again. This time, it wasn’t a symptom that sent her back to treatment. It was a scan.

“My scans went from showing nothing to showing a tumor the same size as my first diagnosis,” she said. “I was just so shocked because I wasn’t expecting anything.”

As Donna began to piece together what had happened, the story became even more complicated. The tumor hadn’t appeared overnight. When her new care team reviewed her prior scans, they discovered that the growth had been visible as far back as 2018, but it had been missed.

The radiologist who originally read the scan had not flagged it, and even more concerning, it became clear that her oncologist had never reviewed the images directly.  

“That was the moment for me,” Donna said. “I realized no one had really been looking out for me the way they should have. I felt like a number, and I’m a relationship person. This matters to me.”

It was a turning point, not just medically, but emotionally. What initially felt like a sudden recurrence became something harder to process. It was a missed opportunity for earlier intervention.

Another treatment crisis

This time, Donna’s treatment plan included a targeted therapy designed specifically for EGFR-positive lung cancer that would allow her to take a lower dose of chemo, which they hoped she would tolerate better. It felt like progress and a better path.

But after a second surgery, adjuvant chemo, and introducing the new treatment, her body began to struggle again in a different and even more frightening way, this time in response to the targeted therapy.

After multiple attempts to adjust the dosage, the new medicine ultimately led to kidney failure, a serious complication that forced yet another shift in her care and another redefinition of what “moving forward” would look like.

It was also the moment that changed how Donna understood her own story.

“I used to say that cancer gave me more than it took from me,” she said. “And I believed that until my kidneys failed. Recovering from that took nearly all I had. I’m still trying to fully move on from how traumatic that year was.”

“I also have to remind myself how remarkable it was that I overcame this,” she said. “My nephrologist said my recovery was miraculous, and it does feel like a total miracle now.”

Living in the in-between

Today, Donna is once again in a place that many people with lung cancer know all too well: waiting.  

In July 2025, after recovering from kidney failure, her care team radiated 2 new spots. They chose radiation because it was the gentlest option for her. Recent scans have shown new nodules that Donna and her care team are just watching, for now.  

“They’re watching them and trying to decide what to do next,” she said. “And with my treatment history, not every option feels like a good one.”

It’s not a crisis. But it’s not clarity, either, and Donna finds herself struggling with living in this place of uncertainty.  

“I like to have a plan, and I like to know what we’re going to do. I’m finding it very hard for me to just wait and see.”

Still choosing more

Through her diagnosis, treatment, recurrence, and all the unexpected turns in between, Donna has held onto a simple mindset:

“I didn’t survive to be basic.”

It’s a phrase that stuck with her early on and has continued to shape how she moves through each new chapter. And for Donna, that means continuing to choose a full life, even in the unknown.

If you or someone you love has been diagnosed with lung cancer, know that you're not alone. Our HelpLine provides free, one-on-one support to people impacted by the disease. Call 1-800-298-2436 or email support@go2.org to connect. Our team is available Monday-Friday from 9 a.m.-5 p.m. ET/6 a.m.-2 p.m. PT.

A diagnosis of small cell lung cancer (SCLC) can bring a wide range of emotions. If you’re feeling uncertain, afraid, or overwhelmed, connecting with others who have faced similar experiences can offer both comfort and strength. Hearing from people who have been living well with SCLC for years is a powerful reminder that your story is still unfolding.

Connection can take many forms, including support groups, one-on-one peer support, or simply reading others’ stories. Each of these forms of connection can help ease feelings of isolation and provide a sense of shared understanding. You are not alone in this. Others are walking this path too, and when asked, here’s what they want you to know.

Take it one step at a time

Focus on today - this appointment, this decision, this moment. Thinking too far ahead can be overwhelming when there is so much unknown in the path ahead. Try to stay in the present and remember that progress isn’t about having everything figured out. It’s about continuing forward one step at a time. There will be good days and hard days. Both are part of the process.

Advocate for yourself

Your healthcare team matters, and you are the most important person on that team. Your thoughts, feelings, and perspectives guide your treatment and care decisions. Your healthcare team should listen and respect you. Whether it’s asking questions, exploring clinical trials, or discussing needs, your voice matters.

• Ask questions until you understand your diagnosis and treatment options.  

• Consider getting a second opinion from a thoracic oncologist (lung cancer specialist).  

• If something doesn’t feel right, trust your instincts and consider a change.  

Let people in (even when it’s hard)

Support can make a huge difference, but accepting help isn’t always easy. The offer of help from friends and family is one way they show their love for you. Accepting their help allows them to be with you through this experience and has the power to strengthen relationships and deepen bonds.

Take care of your body and keep moving

Self-care, even on tough days, can help you both physically and mentally. Even small actions matter.

• Spend time in nature

• Go for a walk when you can  

• Eat and hydrate as best you’re able  

• Follow your care team’s guidance  

• Do something you enjoy

Be honest about how you feel and focus on what you can control  

Positivity helps, but it doesn’t mean ignoring fear, frustration, or sadness. It’s okay to feel all of it. What matters is not getting stuck there. Give yourself permission to have hard moments, then try to find your way forward, step by step.

There’s a lot you can’t control with cancer. But there are things you can:

• How you spend your time  

• Who you surround yourself with  

• How you approach decisions  

Some people find strength in learning everything they can. Others focus on daily routines or small goals. There’s no single right way, only what works for you.

Find meaning where you can and hold onto hope

Many people describe a shift in perspective after diagnosis. Time feels different. Priorities become clearer. That means something different for everyone. For you, it could mean:

• Spending more time with loved ones  

• Helping others facing cancer  

• Finding purpose in advocacy or community  

• Setting goals or challenges for yourself and meeting them

Discover what brings you peace, laughter, and enjoyment, and then do more of that.

SCLC is serious. It’s okay to acknowledge that. But hope has a definite place here, not as denial, but as possibility. Treatments are improving. Research is ongoing. And your experience is your own. You don’t have to have everything figured out. You just keep moving forward, one step, one decision, one day at a time.

If you would like to learn more about SCLC, have questions, or need support, our SCLC program can help. Contact our free HelpLine at 1-800-298-2436 or email support@go2.org.

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For Amita Jain, MD, lung cancer is not just a diagnosis. It’s a lived experience that has shaped her life across multiple roles as a physician, a patient, a daughter, a caregiver, and an advocate.

Her family’s lung cancer story spans generations. In July 2018, her mother, Usha Jain, a retired UC Berkeley professor, was diagnosed with stage 4 (IV) non-small cell lung cancer (NSCLC) despite having no smoking history. Just 6 months later, Amita herself would receive the same diagnosis.

While both women faced advanced disease, their treatment paths diverged. Usha underwent chemotherapy and immunotherapy for nearly 2 years before stopping treatment and transitioning to routine scans. That period (often described clinically as “watch and wait”) felt anything but passive to her family.

“It was hard to feel as though we were ‘doing nothing,’” Amita recalls.

Turning to navigation for answers

As both a physician and a caregiver, Amita understood medicine, but even she found the complexity of lung cancer care overwhelming.

Navigating next steps after treatment, understanding emerging options, and keeping up with rapidly evolving research can feel like a full-time job, especially for families already carrying the emotional weight of a diagnosis.

So, Amita reached out to GO2's LungMATCH navigation program.

“I called the navigators and furnished my mom’s tumor’s genetic profile,” she says. “They reached out a day later with information on some trials for which she might qualify.”

Although her mother ultimately chose not to pursue clinical trials, the impact of that interaction was profound.

“While we did not take action on the options that the navigator provided, the information was empowering,” Amita explains. “It really helped us understand the ‘lay of the land’ in her particular situation.”

Bridging the gap between information and understanding

Even for someone with medical training, the experience revealed an important truth.  Access to information is not the same as understanding it.

“Navigating is complex and scary, and getting all the information is difficult if you are not an oncologist,” Amita says. “The navigator that I spoke with was both professional and prompt. That information made me feel as though we understood our options—and that was extremely reassuring.”

For patients and families, that reassurance can be transformative.

A lung cancer diagnosis often brings not only fear, but also a sense of powerlessness. Decisions feel urgent; stakes are high, and the volume of information can be paralyzing.

“The navigator can serve as a bridge to knowledge,” Amita says. “Knowledge is power. Having a diagnosis of lung cancer can be shocking, but more importantly you do feel a bit powerless and overwhelmed. The navigators serve as a resource and lifeline.”

The invisible work of navigation

What many patients don’t see is the depth of work happening behind the scenes.

Navigators are constantly reviewing evolving research, identifying clinical trials, interpreting biomarker data, and translating complex medical information into something patients can actually use to discuss with their care teams.

“Keeping up on the information is a full-time job that most of us are not trained to do,” Amita says.

That expertise becomes especially critical at moments of uncertainty, like when treatment ends, and the path forward is unclear.

In those moments, navigation doesn’t just guide decisions; it restores a sense of control.

Strengthening navigation for the future

Stories like Amita’s mother’s underscore the critical role navigators play, not just in coordinating care, but in empowering patients and families with clarity, confidence, and connection.

To support and strengthen this role, GO2 for Lung Cancer partnered with leading experts to develop a comprehensive resource for those on the front lines of patient care.

The Lung Cancer Navigator: A Guide for Nurses and Allied Health Professionals textbook is designed to equip health professionals with the knowledge and tools they need to guide patients through every step of the lung cancer experience, from diagnosis to survivorship.

By investing in navigator education, we can ensure that more patients and families experience what Amita describes so clearly: the shift from feeling overwhelmed and uncertain to being informed and empowered.

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Small cell lung cancer (SCLC) is 1 of the 2 main types of lung cancer and accounts for about 15 out of 100 (15%) cases. For decades, treatment for SCLC included chemotherapy, radiation therapy, or surgery if diagnosed in early stages.

It wasn’t until 2018 that the first immunotherapy for SCLC was approved by the Food and Drug Administration (FDA). This was an important advancement in treating SCLC, as immunotherapy works very differently from other treatment types. In October 2025, another breakthrough occurred in the field of immunotherapy when a new type of immunotherapy, a T-cell engager, was approved for SCLC.

These advancements bring hope and optimism to SCLC and expand treatment options. Understanding immunotherapy, how it works, and when it may be used helps you have informed conversations with your healthcare team and stay involved in decision-making. This is important because being knowledgeable allows you to advocate for what matters most to you.

What is immunotherapy?

Your immune system defends your body against germs and diseases that can cause illness. Most of the time, it can tell which cells are healthy and which are not. This enables the immune system to target disease and germ cells without harming healthy cells.

When your immune system detects cancer cells, it goes to work destroying them. Sometimes, it has trouble finding cancer cells because they can appear like healthy cells. Immunotherapy helps your immune system find and attack cancer cells.

Types of immunotherapy

Currently, there are 2 main types of immunotherapies used in SCLC: checkpoint inhibitors and T-cell engagers. They each work in very different ways and are used in different points in treatment.

Checkpoint inhibitors

How do they work?

Cancer cells can hide from the immune system by attaching themselves to immune cells. Cancer cells can attach to immune cells at an area called a checkpoint. This sends a signal to your immune system that the cancer cell is healthy, which prevents the immune system cell from attacking it. A checkpoint inhibitor works by blocking cancer cells from attaching to immune system cells, allowing the immune system to better attack the cancer.

When are they used to treat SCLC?

Imfinzi (durvalumab) and Tecentriq (atezolizumab); however, recent clinical trials have broadened their approved uses in different ways.

• Limited-stage SCLC (stages 1, 2, 3): Imfinzi (durvalumab) can be used after chemotherapy and radiation treatments are complete and may be continued for up to 2 years.
• Extensive-stage SCLC (stage 4): Imfinzi (durvalumab) or Tecentriq (atezolizumab) can be used in combination with chemotherapy. Imfinzi may be continued alone after chemotherapy is completed for as long as it is effective and well-tolerated. This is called maintenance therapy. Tecentriq (atezolizumab) may also be used as maintenance therapy either alone or combined with the chemotherapy drug Lurbinectedin.

T-cell engagers

How do they work?

T-cell engagers, such as Imdelltra (tarlatamab), work like a matchmaker. They attach to a T-cell (a type of immune cell that fights germs and diseases) and a cancer cell, bringing them close together. This connection helps your immune system find and attack cancer cells.

When are they used to treat SCLC?

T-cell engagers are FDA-approved for use in extensive-stage SCLC that has spread during or after chemotherapy.

Immunotherapy side effects

The side effects you may experience from immunotherapy will be unique to you. Some common side effects are mild, while others can be more severe. Immunotherapy boosts your immune system's activity, which can sometimes impact healthy cells and organs, leading to inflammation. This requires prompt medical attention.

Ask a member of your healthcare team what common and more serious side effects may occur with your specific type of immunotherapy and know when you should seek immediate medical care.

The future of immunotherapy in SCLC

Immunotherapy is not 1 single treatment; it’s a growing toolbox of therapies. In fact, there are many clinical trials currently underway that focus on:

• Expanding how the currently approved immunotherapies are used to improve outcomes, including using them in earlier stages or combined with other treatments
• Developing new immunotherapy treatments that work differently from the current options
• Exploring ways to boost the body’s immune system and impact the tumor to make it easier to target and attack Questions for your healthcare team

It’s important to talk to your healthcare team about all your treatment options, including immunotherapy. The following questions may be helpful to ask in your conversation:

• Is immunotherapy right for me?
• What side effects should I be aware of with the type of immunotherapy recommended for me?
• Are there any clinical trials that may be right for me?

Small cell lung cancer (SCLC) accounts for about 15 out of every 100 (15%) lung cancer cases. After decades of very few changes in the treatment of SCLC, there are now more treatment options, which have shifted the standard of care and bring renewed hope. Whether you’ve just been diagnosed with SCLC or are further down your treatment path, it’s important to know all of your treatment options so you can make informed decisions about your care.  

SCLC stages

SCLC treatments are approved for use at different stages of the disease. While many cancers are divided into 4 stages: 1 (I), 2 (II), 3 (III), and 4 (IV) according to the size and location of tumors, SCLC is usually divided into 2 stages.  

• Limited-Stage SCLC: Includes stages 1-3 (I-III), when the cancer is on one side of the chest and has not spread very far.

• Extensive-Stage SCLC: Includes stage 4 (IV), when the cancer has spread beyond one side of the chest to other lung areas, lymph nodes, and/or distant organs.

Your specific treatment options will be based on the stage of lung cancer, your previous treatments, the location of lung cancer in the body, and your overall health.

Limited-stage SCLC treatments

In limited-stage SCLC, approved treatments may include one or more of the following:

• Chemotherapy + Radiation: This is the most common treatment for limited-stage SCLC. Giving chemotherapy and radiation at the same time often works better, though you may receive them one after the other, depending on your overall health.

• Chemotherapy kills fast-growing cells in the body, like cancer cells, and is given in repeated cycles, often over several months. Two chemotherapy medicines (etoposide plus either carboplatin or cisplatin) are combined to treat SCLC.

• Radiation therapy (chest radiation) uses high-energy beams to kill or shrink cancer cells or prevent them from spreading.  

• Immunotherapy: Checkpoint inhibitors are a type of immunotherapy that activate your immune system to find and fight cancer cells. Imfinzi (durvalumab) is the checkpoint inhibitor approved for use after chemotherapy and radiation are completed if cancer has not spread.

• Surgery: Removing cancer through surgery may be an option if it’s found very early. The surgeon will often also remove and examine nearby lymph nodes to ensure the cancer has not spread.  

Extensive-stage SCLC treatments

In extensive-stage SCLC, your first treatment(s) after diagnosis may include 1 or more of the following:

• Chemotherapy: The same chemotherapy drugs used in limited-stage SCLC (etoposide plus carboplatin or cisplatin) may be used as initial treatment for extensive-stage SCLC.  

• Immunotherapy: Imfinzi (durvalumab) or Tecentriq (atezolizumab) are the checkpoint inhibitors approved for use during or after chemotherapy is complete.

• Radiation therapy: This treatment may be used to treat areas in the body that didn’t respond to other treatments, or to relieve symptoms. There are also specialized types of radiation used to treat SCLC that has spread to the brain.

If your scans show that the cancer has completely or partially responded to your last round of chemotherapy, or if the cancer is stable and not growing, your healthcare team may discuss starting maintenance therapy. This is the continued use of certain treatments with the goal of keeping cancer from growing. Approved maintenance treatments for extensive-stage SCLC include:

• Immunotherapy: The checkpoint inhibitors, Imfinzi (durvalumab) or Tecentriq (atezolizumab) may be used after chemotherapy is complete as long as they continue to be effective.

• Tecentriq (atezolizumab) combined with Zepzelca (lurbinectedin): Recent studies have shown that Tecentriq (atezolizumab) combined with the chemotherapy drug Zepzelca (lurbinectedin) is more effective as maintenance therapy than Tecentriq (atezolizumab) alone. 

Treatment options if SCLC grows or spreads

If your scans show that SCLC has grown or has spread while on your current treatment, a different treatment will be needed. Your healthcare team will talk to you about your options, including well-established treatments, newly approved treatments, and clinical trials. Your options may include one or more of the following:  

• Immunotherapy: T-cell engagers are a different type of immunotherapy that work by bringing immune cells together with cancer cells to help activate your immune system and destroy the cancer cells. Imdelltra (tarlatamab) is currently the only approved T-cell engager for SCLC and is the current standard of care when the cancer has grown or spread following chemotherapy.

• Chemotherapy: Your treatment options depend on the type of chemotherapy used previously and how long ago it was. There are several chemotherapy options for SCLC.

• Radiation therapy: There are different types of radiation therapy that may be used to treat specific areas of the body or to relieve symptoms and improve quality of life.

Clinical trials

A clinical trial is a type of research study that tests new treatments or old treatments in new ways to learn how well they work and how safe they are. It’s always a good idea to discuss clinical trials any time a new treatment is needed, including when you are first diagnosed. You can talk to your healthcare team about what clinical trials may be right for you or contact our HelpLine at 1-800-298-2436 or email support@go2.org to connect with our LungMATCH treatment and clinical trial navigators.  

Palliative care

Palliative care is different than hospice care. The goal of palliative care is to improve your comfort and your quality of life, no matter the stage of cancer or where you are on your treatment path. Its purpose is to prevent or treat the symptoms and side effects of lung cancer and its treatments so you can enjoy more of life.  

Palliative care is especially important in advanced lung cancer. Studies show that people with lung cancer who receive ongoing palliative care beginning early in the treatment process not only have improved quality of life but also live longer.

What does this mean for you?

With ongoing research and recent advances, there is increased hope for people diagnosed with SCLC. New discoveries in SCLC treatment make it even more important to ask your healthcare team about all your available treatment options. Have open discussions with your team about what is important to you and ask questions.  

If you would like to learn more about SCLC treatment options, have questions about SCLC, or need support, our SCLC program can help. Contact our free HelpLine at 1-800-298-2436 or email support@go2.org.‍

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June & Roy live in Kennebunk, Maine, a place they moved after visiting and vacationing many times throughout their lives. They enjoy barefoot beach walks, snowshoeing, many volunteer activities focused on environmental issues, Indigenous People’s rights, social justice issues, and textile drives organized by June which have kept over 20 tons of textiles and footwear out of landfills. They also enjoy exploring Maine’s forests and mountain areas. June is a retired clinical registered dietician while Roy is a retired banking executive and director. They see a return trip to Switzerland and other excursions in their future. Their favorite toast with an adult beverage is “Ein Sache”, followed by “Uns” — German for “One Thing” and “Us”. Roy is still trying to find where June hid his heart when she stole it. She promises him that it’s in a safe place.

After a history of heart disease, Roy has learned to pay attention to his body, so when he experienced shortness of breath in July 2018, he went to the emergency room. This time, his heart wasn’t his problem. Imaging revealed a large mass in his upper right lung and, with it, a diagnosis that would reshape his years ahead.

Doctors moved quickly. A biopsy confirmed lung cancer, and additional scans showed it had spread to nearby lymph nodes, ruling out surgery. Roy was referred to David Carbone, MD, PhD at The James Comprehensive Cancer Center, where a treatment plan came together quickly.

Roy enrolled in a clinical trial led by Dr. Carbone to explore using immunotherapy in people with stage 3 (III) non-small cell lung cancer (NSCLC). He would receive immunotherapy, then radiation, then chemo, and then immunotherapy again.

The early months were manageable, and Roy didn’t experience any side effects during his initial immunotherapy infusions. Radiation and chemotherapy followed, spaced carefully over many weeks. But toward the end of treatment, a rare and severe reaction to chemotherapy landed Roy in the hospital for 10 days.

This experience forced difficult treatment decisions and required Roy to advocate for himself, something he had learned to do years earlier while caring for his late wife during her illness. Immunotherapy was paused, then ultimately stopped altogether, when Roy developed serious gastrointestinal side effects. By that point, his treatment had already achieved a complete response, and his body could not tolerate continuing.

With treatment complete, Roy entered a new phase: survivorship, including regular monitoring and cautious hope. Follow-up scans initially came every 6 months, then 9, then eventually once a year.

Judy’s story

Roy’s experience with lung cancer was not his first time navigating serious illness. Just a few years earlier, he had walked a parallel path alongside his late wife, Judy.

In November 2015, Judy collapsed in their shower at their home in southeastern Ohio. At the hospital, imaging revealed a large mass in her brain. Judy immediately understood what that meant. Her aunt had died of glioblastoma years earlier, and Judy had been one of her caregivers.

Judy underwent brain surgery the day before Thanksgiving, followed by months of treatment including clinical trials, aggressive chemotherapy, and a 2nd surgery. Despite everything, Roy remembers her determination to keep living fully and authentically, even as options narrowed.

Judy approached her illness with the same intention and creativity that defined her entire life. A spiritual director and artist, she continued creating throughout her treatment, painting, weaving, and writing as a way to make meaning of what she was experiencing. Even after a stroke affected her body’s complete left side (she was left-handed), she adapted, learning to work with her right hand and allowing her art to evolve alongside her changing body.

For Judy, creativity was not a distraction from illness, but a way of engaging with it honestly. She remained deeply connected to people around her and committed to living as fully as possible, even as she faced her reality of a terminal diagnosis.

“She always showed us how to live,” Roy recalls a close friend saying about Judy. “Now she’s showing us how to die.”

Keeping a promise

Judy died in October 2016, after time in hospice that Roy describes as both heartbreaking and deeply meaningful. In his following years, he turned to journaling as a way to survive his abysmal grief.

“For 2 years, I journaled every day,” Roy said. “Sometimes 2 or 3 times a day, whether I was on my porch or in a local pub or a restaurant or the Grand Canyon, you would find me with my journal in hand.”

His writing became a form of self-therapy, a place to hold and process anger, memories, gratitude, and loss all at once. Over time, it also became the foundation for something Judy had asked Roy to do before she died.

“She made me promise to publish her art and her words,” Roy said. “And I said yes, not knowing at the time what that might look like.”

The result was a book built from Judy’s artwork and writing and interwoven with Roy’s journals to become a 3-part story about living well, dying honestly, and finding a way forward. What began as a promise became a project that took 5 years to complete and eventually reached far beyond Roy’s immediate circle. They edited over 950,000 words from him and Judy down to about 85,000 for the book.

Roy is clear that their memoir and award-winning love story was never meant for a narrow audience. It has resonated with people navigating serious illness, caregivers walking alongside loved ones, and healthcare professionals seeking to better understand the lived experience of patients and families.

“I’ve heard from hospice workers, nurses, and social workers who said it helped them better understand the people they care for,” said Roy. Others have told him they read the book not because they were facing illness themselves, but because they wanted to understand who they hoped to be when life becomes difficult for them.

Today, Roy and his new wife, June, give the book, “It All Belongs,” away freely, believing it is meant to be in people’s hands rather than on a warehouse shelf. Copies are available at no cost, with readers asked only to cover shipping. To learn more or request a copy, visit http://itallbelongsbook.com and use code “GO2Cancer” for your free copy.

June

June had been part of Roy’s life long before his lung cancer diagnosis. June met Roy’s late wife Judy through their Ohio church and became close friends. After she died, June and Roy became support for each other, and when Roy learned he had lung cancer, June was one of the first people he called.

“She screamed,” Roy remembered. “And I hated making her feel such pain.”

At that time, June and Roy were just beginning to recognize their growing feelings for each other, but for June, her decision to stay, to support Roy, and eventually to build a life together was instinctive.

“I had this voice that said, ‘I’m not going to let him go through this by himself. He’s already lost his wife of almost 40 years and had more than enough pain from her death,” she said. “I didn’t care where we were going to go or what we had to go through. I was in.”

When Roy proposed, he made sure June understood the reality of his diagnosis. “I said, ‘Do you realize I may not be here in 2 years?” he recalled.

Her answer was immediate. “Well, it’ll be the 2 best years of my life.”

June attended every appointment and every treatment with Roy, and their love deepened even as they navigated all of lung cancer’s difficult challenges together.

They married in Iona, Scotland during Roy’s treatment, after asking his care team whether it was safe to travel. Their answer was yes, and the moment became one of joy woven into a difficult chapter.

What comes next

For more than 5 years after completing treatment, Roy’s scans remained clear. Then, in the fall of 2025 during a routine follow-up appointment with his new oncologist at the Dana-Farber Cancer Institute after a move to Maine, everything shifted again.

“Dr. Sands walked in,” Roy said. “And for the first time he didn’t say, ‘We didn’t find anything.’ Immediately, I knew something was wrong.”

A new tumor had appeared in the same area of his lung that had already been heavily treated. Because of prior radiation and scarring, many treatment options were no longer possible.

“Every option we brought up – radiation, surgery – they just kept getting pushed off the table,” Roy said. “That has been really hard.”

After consultations with multiple specialists, Roy and his care team determined that immunotherapy would likely be their next step. They are currently waiting on additional testing to confirm this as their treatment course, and Roy is eager to get started. While their next steps are currently uncertain, Roy is not without perspective.

“For me to be loved by two such incredible women and to be able to love two incredible women in one lifetime,” he said, “I don’t need a whole lot else. We’ll figure out the rest.”

If you or a loved one are facing similar uncertainty—whether newly diagnosed or navigating what’s next—GO2’s LungMATCH team can help you understand treatment options, including clinical trials, and talk through next steps. Call 1-800-298-2436 or email ‍ support@go2.org to connect with a LungMATCH Navigator.‍ to connect with a LungMATCH Navigator.

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