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When we try to characterize small cell lung cancer (SCLC), we typically define it by its stage, either extensive stage or limited stage. We don't often delve further than that; that's about as specific as we'll hear. However, you may be surprised to learn that there are actually 4 unique subtypes of small cell lung cancer, each with its own characteristics. The reason these aren't often discussed, though, is that for a while we weren't certain what this information meant. Yes, there are differences among these 4 types at the cellular level, but what does that really mean for the person living with the disease? In recent years, though, this has begun to change. Scientists have been working to uncover how these small differences can potentially have a great impact on the future of personalized medicine and small cell lung cancer. Here, we'll discuss a little bit about each of these 4 subtypes, and how the treatment landscape may shift to accommodate them in the future.

To differentiate the types of SCLC, we have to look at the different proteins that are inside of the cancer cells. These special proteins can help determine how the genes of the cancer cells express themselves, which in turn can impact how these cells grow, reproduce, and react within the body. By taking a blood sample and looking at the circulating tumor DNA (ctDNA) to examine these factors, doctors and scientists can see what type of subtype a person's SCLC is.

SCLC Subtype-A

These are SCLC type cancers where there is a high expression in the cells of a factor called ASCL1. This is the most common subtype, found in between 40% and 50% of cases. Some early research shows that this subtype might be more susceptible to a type of drug called BL-2 inhibitors. These drugs work by blocking a protein inside of the cells that can then cause the cell to die. Some research suggests that this sub-type, after treatment with chemotherapy, may convert to sub-type I (discussed lower down).  

SCLC Subtype-N

This subtype means that a person's SCLC cells have a lot of the factor NEUROD1. This factor is important to helping certain specialized cells grow and function within the body, and it is found in high levels in many cases of extensive-stage disease. This subtype is found in about 20% of SCLC cancers. While this subtype can mean the cancer is a bit faster in how it grows and spreads, it is also more sensitive to treatment with a type of drug called Aura-Kinase inhibitors. These are still in trials for SCLC, and we are monitoring the progress of this research for future uses.  

SCLC Subtype-P

Having the subtype of SCLC-P indicates that your cancer has higher levels of the POU2F3 factor. This is a factor used by specialized cells that line the respiratory and digestive systems. In healthy cells, this helps them to recognize foreign bodies and protect against them, but when mutated, it can drive the subtype of SCLC. It's a bit rarer than those described above and is in 12% to 15% of cases. Fortunately, research is beginning to show that this type of SCLC may respond better to a class of experimental drugs called PARP inhibitors. These drugs, though still in trial, have been shown to stop the damaged DNA in cancer cells from replicating, preventing the spread of more cancerous cells.  

SCLC Subtype-I

Finally, our last class of SCLC subtypes is SCLC-I. This stands for inflamed SCLC, and indicates that, rather than having higher levels of certain proteins, the cells have a lot of inflammation occurring, and a high level of immune cells within the environment. Because of this, research has shown that this subtype may have a stronger response to immunotherapy agents than other small cell lung cancers. This is a less common class of SCLC, found in about 10-15% of cases.  

It is important to know that, when looking at how these sub-types may affect a person's prognosis, there was no difference noted in the length of a person's overall and progression free survival. This means that having one subtype over another doesn't seem to have an impact on how long they will live, or how serious their disease might be. As shown above though, it can impact what treatment types may be more effective, and can help oncologists think about which types of treatment they should try first. It can also useful when a person is considering clinical trials that they may want to join.

If you want to learn more about managing small cell lung cancer and what options are available, please reach out to us. GO2’s HelpLine is a free, one-on-one service that connects patients and caregivers with experienced staff who can provide guidance, resources, and, most importantly, hope!  

References:

1. Baine MK, Febres-Aldana CA, Chang JC, Jungbluth AA, Sethi S, Antonescu CR, Travis WD, Hsieh MS, Roh MS, Homer RJ, Ladanyi M, Egger JV, Lai WV, Rudin CM, Rekhtman N. POU2F3 in SCLC: Clinicopathologic and Genomic Analysis With a Focus on Its Diagnostic Utility in Neuroendocrine-Low SCLC. J Thorac Oncol. 2022 Sep;17(9):1109-1121. doi: 10.1016/j.jtho.2022.06.004. Epub 2022 Jun 24. PMID: 35760287; PMCID: PMC9427708.

2. Dahlstrom, Erin. “Advances in Small Cell Lung Cancer Classification.” MD Anderson Cancer Center, 25 Nov. 2024, www.mdanderson.org/cancerwise/advances-in-small-cell-lung-cancer-classification.h00-159702279.html.

3. Schwendenwein A, Megyesfalvi Z, Barany N, Valko Z, Bugyik E, Lang C, Ferencz B, Paku S, Lantos A, Fillinger J, Rezeli M, Marko-Varga G, Bogos K, Galffy G, Renyi-Vamos F, Hoda MA, Klepetko W, Hoetzenecker K, Laszlo V, Dome B. Molecular profiles of small cell lung cancer subtypes: therapeutic implications. Mol Ther Oncolytics. 2021 Feb 6;20:470-483. doi: 10.1016/j.omto.2021.02.004. PMID: 33718595; PMCID: PMC7917449.

4. The Asco Post Staff. “Study Identifies Four Unique Subtypes of Small Cell Lung Cancer.” Ascopost.com, 2026, ascopost.com/news/january-2021/study-identifies-four-unique-subtypes-of-small-cell-lung-cancer/. Accessed 30 Apr. 2026.

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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.

At the 2026 GO2 for Lung Cancer Voices Summit in Washington, DC, Christine M. Lovly, MD, PhD, FASCO, Division Chief of Thoracic Medical Oncology at City of Hope, shared a powerful message: the future of lung cancer care is being rewritten, and real progress is being made faster than ever before.

In her keynote, “Precision, Progress, Partnerships, and Possibility in Lung Cancer,” Dr. Lovly highlighted how science, advocacy, and collaboration are transforming outcomes for people living with lung cancer. “Every person in this room has a lung cancer story,” she said, recognizing those living with lung cancer, caregivers, advocates, and researchers working together to drive change.

That shared purpose is what continues to move the field forward.

A turning point in lung cancer treatment

Not long ago, non-small cell lung cancer (NSCLC) treatment options were limited. In the early 2000s, people with advanced NSCLC lived an average of about 8 months.

Today, we are in a different era.

Advances in precision medicine, which is treatment that is tailored to the individual person, have transformed NSCLC care. It was once thought that lung cancer was a single disease, but through biomarker testing, we can now identify subtypes of NSCLC. When a person is found to have certain biomarkers such as EGFR, ALK, KRAS, and others, targeted therapies are available. These treatments target specific biomarkers and stop lung cancer from growing and spreading.

The impact is profound. Many people with advanced lung cancer are now living for years with good quality of life and outcomes that once felt out of reach.

But Dr. Lovly emphasized that continued progress depends on ongoing investment in federal research. She expressed concern about how funding reductions and uncertainty at the National Institutes of Health (NIH) could affect the pace and stability of cancer research. When studies are paused or clinical trials are delayed, progress can slow for patients who are waiting for new treatment options. Sustained federal investment in research plays a critical role in supporting clinical trials, which drive continued advances in lung cancer care.

The role of immunotherapy in lung cancer progress

In addition to targeted therapies, immunotherapy has reshaped what’s possible for many people living with lung cancer.

These treatments work by helping the immune system recognize and attack cancer. A type of immunotherapy called a checkpoint inhibitor has greatly improved outcomes and has expanded treatment options across lung cancer stages.

Still, Dr. Lovly emphasized that progress cannot be measured by numbers alone.

“Life lived is equally as important,” she said, a reminder that quality of life must remain central to every advance.

At GO2, we know this is what matters most. It means more time, better days, and meaningful moments for people living with lung cancer and their families.

Ongoing challenges in lung cancer care

Despite this progress, too many people are still diagnosed at later stages, when treatment options are more limited.

Dr. Lovly outlined several key challenges that continue to impact outcomes:

• Low lung cancer screening rates, leading to late diagnoses

• Limited access to biomarker testing and expert care

• Health differences based on location and income

• Drug resistance, as cancer cells adapt and survive treatments  

• Gaps in research funding that limit progress

Despite causing more deaths than many other cancers, lung cancer research has historically received less funding. Dr. Lovly highlighted this as a major barrier to continued progress as it requires urgent action from all of us.

The future of lung cancer research

There is also real momentum and reason for hope.

New treatments, including next-generation KRAS inhibitors and antibody-drug conjugates, are expanding options for people.

Emerging tools like liquid biopsy are making it easier to detect and monitor cancer through a simple blood test, helping bring precision medicine to more people.

At the same time, AI and new clinical trial designs are helping people access new treatments faster.

The science is moving forward quickly, but as Dr. Lovly made clear, discovery alone isn’t enough.

Impact through advocacy

“Innovation is not our barrier. Implementation is,” Dr. Lovly said.

We already have many of the tools needed to save lives. The challenge is making sure every person with lung cancer, no matter who they are or where they live, can access them.

Where we go from here: More resources, more action

To continue progress, Dr. Lovly emphasized the need for more resources. Top priorities include:

• Expand access to lung cancer screening  

• Increase research funding  

• Improve clinical trial participation  

• Ensuring a variety of people join research studies

• Support research on survivorship

• Strengthen the cancer care workforce  

These priorities reflect where the lung cancer community must focus next and where we can make the greatest impact.

The story is still being written

Dr. Lovly closed with a powerful reminder that reflects the heart of the lung cancer community:

“Every treatment we use today exists because people chose hope over fear and participated in research that helped all of us learn.”

The story of lung cancer is still being written. And as Dr. Lovly emphasized, people with lung cancer and advocates are not simply part of that story. They are helping lead it.

The lung cancer community can continue to make a difference by contacting lawmakers and supporting policies that accelerate research, expand access to care, and improve outcomes. Take action today.

When Rachel S. talks about her mom, Jan, you can still feel the energy she brought into every room. Jan was hilarious, dramatic in the best way, endlessly curious, and deeply kind, the type of person who made everyone feel special. She loved through food, through knitting, and through gathering people together.

In late September 2024, Rachel and her family were blindsided by a stage 4 (IV) lung cancer diagnosis. Just months later, on January 17, 2025, Jan passed away. The loss was sudden and devastating, but her spark never faded.

Today, Rachel and her family honor Jan’s life by coming together each year at GO2’s Sacramento 5K Walk/Run in her memory, turning grief into connection and action. We sat down with Rachel to learn more about her mom’s life, legacy, and the impact she continues to have on everyone who loved her.

Tell us about Jan

If I were introducing my mom at a gathering, there’s a strong chance people would already know her – or she would have already made herself known. She was genuinely hilarious. The kind of person who could tell a story and have an entire table crying with laughter. She was loud in the best way, dramatic, animated, obsessed with true crime, and completely unafraid to strike up a conversation with anyone. People loved her. I mean truly loved her. She had fans. But underneath all of that personality was someone deeply kind and interested in people. She made you feel special. That was her magic.

What were some of the things she was most passionate about – hobbies, traditions, routines, or little quirks that made her her?

After I left for college, her best friend taught her to knit. That turned into hundreds of beanies and blankets for family, friends, grandchildren – even cancer organizations. She was also the quintessential Jewish mom – an incredible cook and host. Holidays and gatherings at our house were sacred. Feeding people was how she loved them.

Can you share a moment or memory that feels especially representative of who she was?

My mom would move mountains for my sister and me. In 1998 she surprised us with Backstreet Boys tickets and a trip to Las Vegas – and then surprised us again with a second night and front row seats. That kind of over-the-top joy was so her. After she passed, they announced a Vegas residency, and my dad, sister, and I went. It felt like she made it happen.

When she was diagnosed, what do you remember most about that time – emotionally or practically — for your family?

It was a living nightmare. One day she was healthy, and the next we were told it was stage 4 (IV) lung cancer. By the time we had answers in late September, tumors had fractured her spine, and she was in bed until she passed on January 17, 2025.

Everything was hard. She couldn’t move, so every appointment required enormous coordination. We were incredibly fortunate to have neighbors and lifelong friends who stepped up in extraordinary ways.

Even with that support, it was overwhelming. There are so many unknowns with a diagnosis like this, which is why guidance and community around lung cancer matter so much.

How did she approach life in the months that followed her diagnosis?

She was still herself. Sassy. Funny. Curious. Even from bed, she wanted to know all of the gossip. She still made jokes. That spark never left her.  

What kind of impact did she have on her family, friends, and neighbors?

The number of people who showed up for her and for us told me everything I needed to know about her impact.

She built real relationships. With neighbors. With lifelong friends. With our friends. With people she met once and somehow remembered forever. She made people feel seen and important. That kind of energy doesn’t disappear.

Since her passing, how have you seen her legacy live on in your family or community?

Her knitting is everywhere. Her recipes are still in rotation. We still host. We still gather.

But more than anything, she changed how we live. There’s a depth now. A perspective you don’t get unless you’ve experienced loss like this. We don’t sweat the small stuff the same way anymore.

Can you describe what motivated you to participate in GO2’s Sacramento 5K Walk/Run in her honor?

Grief is disorienting. I needed community and I needed direction. I needed to turn heartbreak into action. If I couldn’t save my mom, I wanted to help save someone else’s. Leading the 5K in her honor felt like the most meaningful way to do that.

What does it mean to you to have family and friends come together at this event to celebrate her life?

We formed our team just a month after she passed. It was still so raw, but we needed it.

Seeing that many people show up for her – walking, donating, wearing her name – was incredibly healing. It reminded us how much she meant and that we were helping fund real progress in her honor.

How does this event help shift the narrative around lung cancer from loss and stigma to community, celebration, and hope?

Cancer is everywhere. It’s happening younger. It’s happening to nonsmokers. It’s happening to people who “did everything right. “Events like this help dissolve isolation. They replace stigma with community. They remind families that they are not alone. And, they fund real progress.

Grief can be incredibly lonely. This makes it collective, and collective grief can become collective hope.

If you had to sum up what you hope readers understand about your mom, what would you want them to take away?

There will never be enough time with the people we love. My mom lived loudly, generously, and with joy. I hope people step away from the noise of daily life and remember that right now is what we have. Don’t wait to show up. Don’t wait to say the thing. Live bigger while you can.

Honor your loved ones by joining a GO2 5K Walk/Run near you, or by starting your own team. Every step helps fund programs, research, and resources that ensure no one faces lung cancer alone. Find an event and join us!   

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At GO2 for Lung Cancer, helping patients and families is at the heart of what we do. Our support services connect people to trusted information, help them navigate care, and offer guidance during difficult moments.

At the same time, GO2 also works behind the scenes on health policy. This work focuses on the laws and decisions that shape whether people can get screened, see the right specialists, afford treatment, and receive follow-up care. Together, direct support and policy advocacy help ensure that people affected by lung cancer can get the care they need when they need it.

Expanding access to lung cancer screening

Early detection saves lives. That’s why expanding access to lung cancer screening is one of GO2’s top priorities.

Rules about who qualifies for lung cancer screening can make a big difference. These guidelines decide who is eligible for low-dose computed tomography (LDCT) scans and whether insurance covers the cost. When screening rules are too narrow or outdated, some people who are still at high risk may not be able to get screened.

GO2 is closely engaged as national screening recommendations come up for review. These reviews are important opportunities to update guidelines based on new research and real-world experience. Today, some individuals—such as certain people with a smoking history—may still face a higher risk of lung cancer but do not meet current screening criteria.

GO2 also works to ensure that Medicare coverage keeps pace with updated screening guidance. This is especially important for older adults who are more likely to develop lung cancer. When coverage rules do not match current medical guidance, people may face delays or barriers to screening that could help detect cancer earlier.

Through ongoing advocacy, GO2 works to ensure that lung cancer screening guidelines and coverage policies reflect current real-world evidence and updated clinical guidelines, so more people who could benefit from screening are able to access it.

Ensuring access to timely diagnosis and biomarker testing

Screening is only the first step in the lung cancer care experience. When a suspicious finding appears on a scan, patients need timely diagnostic evaluation and testing to determine the best path forward.

An important part of this process is biomarker testing, which analyzes a tumor’s genetic features to help doctors identify treatments that may work best for a specific patient. Many modern lung cancer treatments depend on these results, making timely access to testing critical for guiding treatment decisions.

GO2 works to improve access to biomarker testing through both policy and system-level efforts. This includes supporting state legislation that helps ensure insurance coverage for biomarker testing and advocating for its inclusion in state cancer plans and other cancer control initiatives.

By advancing policies and best practices that support timely and appropriate testing, GO2 helps provide patients and their care teams with the information they need to choose the most effective treatment options.

GO2 also works with national partners and policymakers to advance policies that support appropriate biomarker testing and ensure that patients across the country can benefit from the latest advances in precision medicine.

Supporting access throughout the care journey

Access challenges don’t stop after screening. Many policies affect care at every stage from diagnosis and treatment to follow-up and survivorship. GO2 works to ensure these policies support patients rather than create new obstacles.

One important tool is telehealth. Telehealth allows patients to talk with healthcare providers by phone or video, making it easier to have screening conversations, meet with specialists, manage care, and check in after treatment. For people who live far from cancer centers, have trouble traveling, or juggle work and family responsibilities, telehealth can make care more reachable.

As healthcare rules continue to change, GO2 advocates for telehealth policies that are practical, fair, and patient-friendly. The goal is to make sure virtual care remains an option, especially when it helps patients stay connected to the care they need.

Making sure the patient voice is heard

GO2 also works with other patient advocacy organizations to strengthen the patient voice in health policy discussions. By working together, patient groups can raise shared concerns and help decision-makers understand how policies affect real people.

This teamwork helps ensure that lung cancer needs are considered in broader healthcare decisions especially when policies are designed for many conditions at once but may affect cancer patients in unique ways.

Improving affordability of lung cancer treatment

The cost of treatment is a major concern for many people facing lung cancer. GO2 closely follows changes to Medicare drug coverage and pricing rules that affect how much patients pay for their medications.

Recent changes to federal law are reshaping how prescription drug costs are handled under Medicare. GO2’s policy work focuses on making sure these changes truly help patients afford their medications without limiting access to the treatments their doctors recommend.

By monitoring how new rules are put into practice, GO2 works to identify and address any unintended consequences that could make it harder for patients to get the care they need.

Addressing insurance barriers when they arise

Sometimes, even when guidelines and policies are in place, insurance coverage decisions can still create problems for patients. When this happens, GO2 speaks up.

GO2 engages directly with health plans when coverage rules or restrictions limit access to needed cancer treatments, especially for people with rare or specific types of lung cancer. These efforts focus on ensuring that coverage decisions keep pace with medical advances and recognize that different patients need different treatments.

This kind of targeted advocacy helps reinforce a simple but important message: cancer care should be guided by medical evidence and individual patient needs—not one-size-fits-all rules.

One goal: Helping patients get the care they need

Whether providing direct support to patients, advocating for expanded screening, protecting access to care tools like telehealth, working to improve affordability, or addressing insurance barriers, GO2’s work is guided by one goal: helping people affected by lung cancer access timely, high-quality care.

Some of this work happens behind the scenes, but its impact is felt every day. GO2 remains committed to supporting patients and families—both through direct services and through advocacy that helps make the healthcare system work better for everyone affected by lung cancer. Learn more about our advocacy work.

Glen lives in Hercules, CA with his Yorkie, Kuma, where he moved in 2021 to be closer to family and friends. After nearly 20 years working in the probation department, he retired at the beginning of the pandemic and began volunteering at the East Bay SPCA. What started as a way to give back quickly turned into a full-time job. These days, you’ll often find him on his daily walk to Starbucks or visiting his mom, who lives just 15 minutes away.

Jeffrey B. Velotta, MD, FACS is a thoracic surgeon at Kaiser Permanente’s Oakland Medical Center, a Clinical Professor in the Department of Clinical Science at Kaiser Permanente’s Bernard J. Tyson School of Medicine, and a clinical assistant professor in the Department of Surgery the UCSF School of Medicine. Dr. Velotta went to medical school at George Washington University. He then completed his general surgery residency at UCLA Medical Center. During this time, Dr. Velotta also completed his postdoctoral research in the Department of Cardiothoracic Surgery at Stanford University School of Medicine. Following this, he completed his training in Cardiothoracic Surgery at Brigham and Women’s Hospital and Harvard Medical School. Dr. Velotta’s clinical and research interests involve innovative techniques and regionalization pathways for all thoracic cancers and improving lung cancer screening in at-risk populations.

When Glen first noticed chest pain in the fall of 2024, lung cancer wasn’t on his radar. He was in physical therapy at the time and assumed the discomfort was muscular and temporary. But 1 test led to another, and by December, an X-ray raised concerns that couldn’t be ignored.

On December 24, 2024, Glen had a biopsy. Four days later, he received a phone call confirming cancer.  

“I didn’t know what stage I was or much about what I was even being diagnosed with,” Glen recalls. “I just know it turned my world upside down.”

Glen didn’t have a smoking history, and there was no history of lung cancer in his family. Yet here he was, grappling with a diagnosis he never expected and didn’t yet fully understand.

Hearing the worst news, but not much else

Glen remembers little of the conversation that followed his diagnosis. His oncologist delivered the news with compassion, giving him permission to react however he needed.  

“She said, I’m telling you the worst news I could possibly tell you. It’s okay if you get upset, scream, or cry. I’m here,” he says.

But like many patients in that moment, Glen fixated on 1 question: How long do I have to live? “I wasn’t really hearing anything else,” he says. “My best friend was with me, taking notes. I’m glad she was there because I don’t remember much of what was said. I could only think about my prognosis.”

In the days that followed, Glen did what so many people do, he went online. And almost immediately, he regretted it. “That was the worst thing I could do,” he says. “You Google stage 4 (IV) lung cancer and life expectancy, and the first article you see tells you that this is really bad news. You don’t even need to read the rest.”

Treatment, side effects, and a growing sense of fear

Glen began treatment quickly. His first regimen included radiation to his brain and chest and an infusion therapy that caused repeated breathing reactions. After 4 reactions across 2 sessions, his care team stopped the drug. He later transitioned to Tagrisso (osimertinib), which he is still on today and has tolerated much better.

But emotionally, Glen was spiraling. He describes himself as generally relatively pessimistic by nature, and the statistics he’d read didn’t help. He began quietly preparing for the end, updating legal documents, organizing passwords, and making sure his affairs were in order.

A parking lot, a 5K, and an unexpected meeting

Everything began to shift at GO2’s San Francisco 5K Walk/Run. Glen attended the event almost on a whim after finding information about it online. He arrived early, sat in his car, and debated leaving. Eventually, he got out and walked toward the event, unsure why everyone seemed so happy. “This is a cancer walk,” he remembers thinking. “Why is everyone smiling?”

A volunteer noticed he wasn’t okay and introduced him to GO2’s Senior Manager, Support Programs and Events, Michele Zeh. As Glen shared how bleak he was feeling, she pointed around the room. “This person has 10 years since their diagnosis. That person has 8,” she told him.

“And I’m thinking, how is that possible? I thought people never lived that long,” Glen says.

Then Michele asked a simple question: “Do you know Dr. Velotta?”

Glen didn’t. But meeting him was about to change his life.  

“Let’s get rid of the mothership”

Dr. Jeffrey Velotta is a thoracic surgeon at Kaiser Permanente in Northern California, and one of only a small number of surgeons in the country willing to seriously consider surgery for patients with stage 4 (IV) lung cancer.

When Glen met him, the conversation felt different immediately. “He really cared,” Glen says. “I could tell right away how passionate he was about lung cancer and about the people who have it. It made me feel good.”

Dr. Velotta reviewed Glen’s scans and told him that he could be a good candidate for surgery, a treatment that might help his prognosis despite his stage 4 (IV) diagnosis. He explained his thinking using an analogy that stuck.

“We’ll get rid of the mothership,” he said.

The primary tumor, Dr. Velotta explained, was like a command center that was sending cancer cells elsewhere. If Glen’s metastatic disease was controlled with medication, removing the original tumor could still slow or stop future progression.  

“The approach made sense to me,” Glen says. “You’re radiating my brain and my bones but you’re leaving where it all started? Why not get rid of that, too?”

Why surgery for stage 4 (IV) is still so controversial

Dr. Velotta is blunt about how unusual his approach still is. “I don’t think every patient with stage 4 (IV) lung cancer should have surgery,” he says. “But I absolutely believe that some should, including many more than most doctors currently consider.”

In addition to being younger, healthier, and generally fit, the key factor that makes someone a good candidate, he explains, isn’t the extent of the disease or the number of metastases, but whether disease outside the lung is controlled.

“Glen had multiple spots in his brain, bones, and elsewhere,” Dr. Velotta explains. “But his cancer was well-controlled through a tyrosine kinase inhibitor (TKI). That’s what people call ‘polymetastatic’ disease. Most surgery trials exclude patients like that. But that’s actually the majority of people with stage 4 (IV) lung cancer.”

Clinical trials, he notes, tend to focus on patients with 1 or 2 metastases, not because others can’t benefit, but because trials are designed to show clean, easily publishable results. This disconnect, he believes, is 1 of the reasons surgery remains underused for people with advanced disease. “That leaves most patients out,” he says. “And it leaves surgeons hesitant.”

A lonely position in the field

Even today, Dr. Velotta says the prevailing mindset around surgery for stage 4 (IV) lung cancer hasn’t shifted much. “The thinking is that it’s too little, too late. We’ve missed the chance to help these patients surgically. The idea is that the cat’s already out of the bag,” he says.

That assumption, that surgery can’t help once cancer has spread, is something he pushes back against constantly. “People get freaked out by polymetastatic disease,” he says. “They see multiple spots and think, ‘Oh my God, they’re everywhere.’ But if those spots are controlled, it doesn’t matter how many there are. Those patients can still benefit.”

Dr. Velotta acknowledges that his willingness to operate in these cases often puts him at odds with colleagues. “There is a stigma associated with operating on stage 4 (IV) lung cancer,” he says.  

Even within his own health system, he is frequently the only surgeon willing to consider surgery for patients like Glen. “I feel very alone in this world sometimes,” he admits. “If these patients were all doing terribly, I would stop. But they’re actually doing really well.”

Instead, he says, many of his patients are living longer — and living well. “I’ve done this for 5 or 6 years. I’ve operated on many,” he says. “A lot of them are still alive. And even the ones who passed didn’t pass 3 months later. Some lived 6 plus years.”

Surgery as more than survival statistics

For Glen, surgery wasn’t just about controlling the disease. It was about reclaiming a sense of control over his own life. Surgery felt proactive to him, like taking control of his treatment and his future.  

Dr. Velotta sees that psychological impact again and again. “You can’t quantify that on a spreadsheet,” he says. “But mentally, it matters a lot.”

Glen agrees. “I felt better from the moment I knew I was going to have surgery,” he says. “I can’t put that on paper, but I felt different. Better. It has helped my mindset immeasurably.”

Glen had surgery on November 12, 2025. It was minimally invasive, and he went home 2 days later. Within weeks, he was walking hills near his house. Then jogging. Then biking.

“I’m not back to where I was yet,” he says. “But I’m close. And I really don’t mind putting in the work.”

Pathology from his surgery showed just .5 millimeters of active cancer remaining in the tumor that was removed. “All I cared about was that it wasn’t inside me anymore,” Glen says.  

NED — and what hope looks like now

When Dr. Velotta emailed Glen with the words “NED” or “no evidence of disease,” Glen didn’t fully grasp what it meant, but others did. “When I told people at GO2, they got really excited,” he says. “That’s when I realized, oh, this is a big deal.”

Hope, he says, is everything. “Sometimes I’m still pessimistic at heart,” he admits. “But the surgery has given me so much more reason to have hope for the future, and hope is what keeps me going.”

On sharing his story

Glen hesitated before agreeing to speak publicly about his experiences with lung cancer. Talking about cancer can still pull him into dark places. But ultimately, he agreed for 1 reason.

“If this helps 1 person,” he says. “If someone like me hears this and thinks, ‘Maybe surgery is an option for me, maybe I should ask’, then it’s worth it.”

Dr. Velotta agrees. “I just want people to know that they can ask,” he says. “That’s huge progress.”

GO2’s HelpLine is a free, one-on-one service that connects patients and caregivers with experienced staff who can provide guidance, referrals, resources, and, most importantly, hope. Whether it’s questions about biomarker testing, treatment options, or simply needing someone to listen, the HelpLine is often the first step toward feeling less alone after a lung cancer diagnosis. Call 1-800-298-2436 or email support@go2.org to get started.

By Matthew Reiss, MSE, PhD, Manager, Precision Medicine & Navigation, GO2 for Lung Cancer 

Hearing that cancer has spread to the brain or spinal cord can be a frightening, but very real outcome for many people living with lung cancer. While exact statistics are hard to pin down, recent studies suggest that about 10-40% of lung cancer patients’ cancer will spread to the brain or central nervous system.  

One rare form of spread, called leptomeningeal disease (LMD), can be especially confusing because it is unfamiliar and often hard to explain in simple terms. But better understanding what LMD is and how it may be treated can help you advocate for yourself in conversations with your healthcare team.

What is leptomeningeal disease?

To understand leptomeningeal disease, it can help to picture how the brain and spinal cord are protected. In the body, these structures are wrapped in a thin layer of tissue called the meninges. Inside these layers flows a clear liquid called cerebrospinal fluid (CSF), which helps to cushion and nourish the brain and spinal cord.

Leptomeningeal disease occurs when cancer cells, such as those from the lungs, travel to, and start growing in, the meninges or in the CSF surrounding the brain and spinal cord.  

How is LMD different from other brain metastases?

Many people have heard how cancer can sometimes spread from the lungs by travelling through the bloodstream to the brain, where it can begin to grow. These are called brain metastases or brain mets. Brain mets are not brain cancer, but rather lung cancer that has spread to the brain.

Leptomeningeal disease is different. While brain mets usually form as a solid tumor(s) in the brain itself, LMD involves the lining and fluid around the brain and spinal cord. Instead of a single or multiple solid tumor masses, LMD can look more like a thin coating or a pattern of streaking around/within these structures, possibly affecting many areas at once. This can make LMD harder to see on a scan and more challenging to diagnose

Because of this, symptoms of LMD can vary widely, and no 2 people experience LMD the same way. Often, symptoms include:  

• Headaches
• Nausea
• Changes in thinking or mood
• Double vision
• Weakness
• Difficulty walking
• Back pain
• Numbness

This also makes LMD more difficult to diagnose. Often, an LMD diagnosis is confirmed by collectively considering the results of MRI scans, spinal fluid tests, and other clinical exams.

How common is LMD in lung cancer?

Leptomeningeal disease is not common, but it is a possibility to be aware of for individuals living with lung cancer.

For individuals with non-small cell lung cancer (NSCLC), LMD is very rare:

• Studies show that LMD occurs in about 3-5% of individuals living with NSCLC.
• It is more common in people with mutations or changes in genes such as EGFR, ALK, and ROS1.

LMD is more common, but still rare, in people living with small cell lung cancer (SCLC):

• About 2% of individuals with SCLC have signs of LMD at diagnosis.
• About 10% of individuals with SCLC have developed LMD after 2 years.

You may also sometimes hear people say that LMD diagnoses are becoming more common. While true, many researchers believe LMD is being diagnosed more often today, not only because of better scanning technology, but also because new treatments are allowing people to live long enough with lung cancer for rarer complications like LMD to occur.

Even though it’s uncommon, knowing the basics of LMD can help people better recognize symptoms early and get connected with a specialist.

The importance of seeing a specialist

Because LMD is complex, it is very helpful to work with clinicians who have experience treating it. Your doctor may refer you to a:

• Neuro-oncologist – a doctor specializing in cancers found in the brain and nervous system
• Medical oncologist with LMD experience
• Radiation oncologist – a doctor specializing in the use of radiation to treat cancer in areas such as the brain and spine

These experts work with your current healthcare team and can often open the door to more treatment options or clinical trials to help manage the cancer.  

Treating LMD can also be complex. Sometimes treatments that work well in one part of the body do not work the same way or as effectively in the brain or CSF. If this happens to you or your loved one, it’s completely normal to feel overwhelmed. You can always ask your care team to slow down, repeat information, or clarify anything. Asking questions is an important way to advocate for yourself.

Current treatment approaches for LMD

Overall, the goals of treatment for people with LMD are usually to slow or control further spread of the cancer, protect quality of life, and relieve troublesome symptoms such as pain, nausea, or nerve issues.

Exactly which treatment someone receives for LMD is highly personalized, but there are several commonly used approaches:

• Targeted or systemic (whole-body) treatments: For some people who have certain genetic changes, targeted therapies or immunotherapies can be effective ways to treat LMD. For others who do not have genetic changes that can be targeted, traditional chemotherapy is often used.
• Radiation therapy: Targeted radiation may also be used to treat the specific areas of LMD that are likely causing symptoms. For others, radiation may be used more widely along the brain or spinal cord to treat LMD over a large region.
• Intrathecal therapy: In some cases, medicines such as chemotherapy are delivered directly into the spinal fluid through a small device or spinal tap. This approach allows the treatment to better access the protected part of the body where LMD is occurring, although this approach is not appropriate for everyone.
• Supportive and palliative care: This approach includes medicines and services that focus on symptom relief, mobility, and emotional support for people with LMD, rather than treating the LMD directly. Supportive and palliative care should be offered alongside other treatment approaches.
• Emerging approaches: While LMD remains a serious diagnosis, there is real progress being made in clinical trials to find new and better ways to treat LMD and improve long-term outcomes. Talk to your healthcare team about whether a clinical trial for LMD may be right for you.

Closing thoughts

Leptomeningeal disease is complicated, and it is normal to have questions. If you or someone you care about has been told they have leptomeningeal disease related to lung cancer, reach out to your care team, ask about a referral to an expert, and feel comfortable asking questions related to your treatment options. Clear information is empowering and can help you advocate for the best possible care.  

If you’d like to learn more about LMD and its treatments, have questions, or need support, please contact our free HelpLine at 1-800-298-2436 or email support@go2.org.

When Mike Scanlon set out on a 30-day, 700-mile bike ride across Kansas, the journey ahead of him was daunting. He had 60 trails, 50 towns, and what felt like endless gravel roads ahead of him. But for Mike, who is living with stage 4 (IV) non-small cell lung cancer (NSCLC), this ride was about more than just the distance. It was about purpose and about transforming his diagnosis into something bigger.

At the heart of Mike’s journey was a principle that has guided his work and his life for years: the Athenian Oath, a commitment to leave things “not less, but greater, better, and more beautiful than they were transmitted to us.” Turning his ride into a fundraiser for GO2 for Lung Cancer and Kansas Trails Inc. was a natural extension of that belief. “I’ve always tried to live in a way that gives back,” Mike shared. “This ride felt like a way to do that — to take something personal and make it meaningful for others.”

Choosing “even if” over “only if”

Mike often described the Ride for Resilience tour as a lesson in mindset. It was one shaped deeply by his cancer diagnosis. Living with stage 4 (IV) NSCLC, he explained, can trap people in “only if” thinking: “I’ll have peace only if treatment works. Only if scans stay clear. Only if life goes back to normal.”

But the road taught him another way.

“The power of an ‘even if’ perspective is that it frees you to live with purpose no matter what happens,” Mike said. “Even if the road is uncertain. Even if outcomes aren’t guaranteed. Even if this journey reshapes your life.”

For Mike, resilience wasn’t about controlling the outcome. It was about choosing courage anyway. Pedal after pedal, day after day, that mindset carried him forward.

Trails, towns, and the strength of small places

Kansas is home to more than 4,000 miles of trails, and Mike wanted to experience as much of that diversity as possible. Riding 60 trails across 50 towns allowed him to connect not just with landscapes, but with people — especially in small, rural communities.

“I wanted to see how adaptable and resilient these towns are,” he said. “A lot of them don’t have much, but they keep showing up.”

That resilience came into sharp focus in places like Copeland, KS, population 251. A stop at the town library became a powerful reminder of shared values and of communities that quietly live out the Athenian Oath and the “even if” mentality every day. These towns, like people facing cancer, keep moving forward despite uncertainty.

Sharing the road and stories

Along the way, survivors, caregivers, and families found Mike. Sometimes it was literally on the trail, sometimes through word of mouth. They rode beside him and shared their stories.

Over the course of the ride, Mike connected with people across Kansas, creating space for honest conversations about cancer, treatment, and hope. He shared information about GO2 for Lung Cancer, including resources available to individuals and families at every stage of the disease.

“Cancer is deeply personal,” Mike reflected. “The courage it takes for people to open up always floored me.”

From a sales director at a Salina radio station to an administrative assistant at a high school in Wamego — who happened to share Mike’s same lung cancer mutation and treatment — these conversations became some of the most meaningful moments of the ride.

Hard miles and harder questions

The ride tested Mike in ways he didn’t expect, including fast farm dogs on gravel roads (most of which he could outpace, except one). But the hardest challenges weren’t physical. They were mental.

“I’ve been given an opportunity many people with NSCLC don’t get,” he said. “And I can’t waste it.”

A note from a donor, a message of encouragement, or simply the mantra JKP — Just Keep Pedaling — helped him find the answer.

The ride of a lifetime

The final day was a 93-mile ride along the Flint Hills Trail from Council Grove to Osawatomie felt symbolic. Mike saw the day as a reflection of life itself: starting early, uncertain, learning as you go, growing stronger, then feeling your body push back near the end.

And then, 2 miles from the finish, everything changed.

“I saw my grandson, Augie,” Mike said. “He wanted to ride the last 2 miles with me. And I knew his little brother PJ was waiting at the finish line with my daughter Megan.”

As Mike’s journey that day ended, his grandsons’ life journeys were just beginning, bringing the Athenian Oath full circle. “My obligation,” Mike said, “is to transmit Kansas trails — and this life — not less, but greater.”

Your turn to find your “Ride for Resilience”

Mike’s advice to anyone considering a fundraiser for GO2 for Lung Cancer is simple: define your reason.

“Mine was the Athenian Oath,” he said. “Once you know your why, invite others to help.”

Through his 700-mile journey, Mike raised more than $24,000, helping fuel GO2 for Lung Cancer’s work to increase lung cancer survival by supporting cutting-edge research, legislative advocacy, and patient support services for individuals and families nationwide.

Whether it’s a ride, a walk, a creative challenge, or something uniquely yours, your fundraiser can make a difference. As Mike’s journey shows, resilience isn’t about what happens only if everything goes right — it’s about choosing to act, even if the road ahead is uncertain.

And sometimes, all it takes is the courage to start pedaling.

Learn more about how you can create your own fundraiser for GO2 for Lung Cancer. 

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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