As Maggie McCloskey celebrated her 60th birthday in May, she told herself, “2021 is going to be the best year of your life!”

But between May and September of that year, a slow cascade of puzzling health events began to test her certainty.

In June, during a stressful period at work, Maggie’s vision became distorted by occasional ocular migraines. Her eye doctor told her that these could be attributed to that work stress.

In July, Maggie’s left leg seized up in a cramp that didn’t ease. She called an advice nurse who, fearing a blood clot, advised Maggie to go to the ER immediately. An ultrasound did reveal a clot, so Maggie started on a blood thinner. She followed up with a hematology oncologist, who didn’t probe further because of Maggie’s otherwise good health. Maggie described her relief leaving the office: “It was like there was a thought bubble over my head: ‘Thank God I don’t have cancer.’”

But the eye issues continued: split vision, as though one pupil were higher than the other, then eye flashes diagnosed by her optometrist as cotton wool spots, which led to a referral to an ophthalmologist and a suggestion to schedule a physical exam with her PCP.

In August, a few days before the physical, Maggie experienced about 10 seconds of pain in the left side of her chest. When she mentioned this during her physical exam, her PCP ran an EKG, which indicated a rhythm abnormality. So, Maggie was referred to cardiology. But when her PCP called a few days later to say the EKG machine had made an error, Maggie decided to keep the cardiology appointment. “I’m glad I listened to my gut and kept that appointment,” she said. It was the appointment with the cardiology PA that ultimately led to her lung cancer diagnosis.

The cardiology PA was concerned about a pulmonary embolism and ordered a CT scan. The CT scan on 8/31/21 found a mass measuring 35 x 23 x 19 mm, with possible spread in Maggie’s upper right lobe. A follow up PET scan also found a lesion in her right lung measuring 2.2 x 3.3 cm, plus several micro modules in her lower left lung.

By early September 2021, Maggie began having problems with her balance. A brain MRI in early October revealed several small mets in her right occipital lobe and cerebellum, thus explaining her summer of vision and balance problems.

September also included a tumor tissue biopsy and a Guardant 360 blood biopsy. The tissue biopsy confirmed NSCLC adenocarcinoma. The blood biopsy results showed an EGFR Exon 21 mutation.

Lung cancer survivors know well the turmoil that comes after a diagnosis. The turmoil is even more extreme when, as in Maggie’s case, there has never been any lung-related symptoms prior to a lung cancer diagnosis.

But for Maggie, the discovery of her EGFR mutation became a silver lining in the midst of chaos and distress. “An EGFR mutation meant I’d receive a targeted therapy. I could take a pill instead of chemo!” she said. She began Tagrisso in October, and by December, her PET and MRI showed she was NED. “That was amazing—it did turn out to be a good year after all!” Maggie said.

Maggie remained NED until September of 2022, when scans showed active cancer, again at the primary tumor site. Maggie had SBRT. After further progression in March of 2023, a blood biopsy showed MET amplification in addition to the EGFR mutation, so Maggie entered a clinical trial in June 2023, remaining on Tagrisso and adding Tabrecta for the MET amplification.

But with progression in a couple of lymph nodes in March 2024, Maggie was removed from the trial and had SBRT to the lymph nodes in April.

In August 2024, Maggie continued Tagrisso and began 6 rounds of chemotherapy with carboplatin and pemetrexed. She ended 2024 by starting maintenance chemotherapy with pemetrexed alone. Upcoming scans in January 2025 will determine whether this current therapy is working. If or when a change in therapy is indicated, Maggie will be sure to reach out to both of her second opinion oncologists for their recommendations.

“I don’t look like I have cancer“ Maggie said. “I don’t feel like it.”

And, hearing some of what she’s been doing, you wouldn’t think so either. Since stopping work in 2022, Maggie has cruised from Amsterdam to Budapest, traveled to Vienna, Scotland, Scandinavia, New Zealand, and within the US. Lung cancer advocacy has taken her to Washington DC, where she has lobbied for lung cancer research dollars.

Maggie is intentional about where she puts her time. She actively supports other lung cancer survivors, through a peer counseling program and online. “It’s so rewarding to do this,” she said. She checks EGFR Resisters daily, just to keep in touch with what’s happening, and, if possible, to share relevant experience or information. Maggie also volunteers regularly at a local animal shelter to help socialize cats waiting for adoption.

“It’s not that I don’t get down, “ Maggie said. “But I have a really good support system.” Maggie’s coping strategies also include meditation, prayer, and practicing gratitude.“By becoming more aware of my thoughts and emotions, I’ve learned I need to feel my emotions, but I can control my thoughts. I can choose how to think about something; I can choose to look for something positive.”

“My friends tell me I seem happier since my cancer diagnosis than I did before it,” Maggie said. “I think it’s because I know what I’ve ot and I know what can be taken away from me.”

Maggie oƯers three pieces of advice to other survivors. “Always bring a second person to an appointment with you!” She’s found the other person can ensure that the hard questions get asked and details noted for the future. Secondly, “Cancer can be so stressful. You can ask for a prescription for an anti-anxiety drug to use when you need it, especially before a scan.” And, last but not least, “You are your own best advocate. Don’t be afraid to advocate
for yourself to get the tests and treatment you want.”

With her unshakable optimism and determination, Maggie continues to embrace every moment. Whether supporting fellow survivors, lobbying for research funding, or planning her next adventure, Maggie’s story is a testament to finding light in even the darkest moment.

Leigh Durant’s experience as the lung cancer caregiver for her mother, Alice Hughes, began in April 2024, when Alice told Leigh she just didn’t feel like herself. Leigh said, “She’s always been very aware of her body, her physical state.” Because of that, even though Alice had suffered two bouts of Covid, one quite serious, the doctors’ comments that Alice’s concerns were “just Covid” never sat right.

Alice had begun exploring some health issues. One of these was a lymph node on her kidney, for which an MRI had been scheduled. But Alice’s eye hurt and her vision was changing, so Alice spoke with her doctor, requesting that the MRI be done on her brain instead. The doctor agreed, the orders were changed, and the MRI took place. That happened on a Friday.

After the test, Alice, Leigh’s sister, Allyssa, and Leigh headed back to Alice’s home. “The minute we walked through the door,” Leigh said, “the phone rang. They said, ‘Take her to the ER in Boston immediately.’

“There were two masses on her brain. By Sunday, she was in emergency surgery.”

One of the tumors, on the cerebrum, was very large. The second one, on the cerebellum, was smaller. “By looking at the scan, they knew it was cancer,” said Leigh. “They just didn’t know what kind.”

Alice was released to rehab after the surgery, where she spent two weeks. Then the pathology report came back. “It was lung cancer-- EGFR adenocarcinoma,” said Leigh. There was minimal evidence of cancer in the lung-- no nodules of concern or growth of anything over time. “The surgeon said it didn’t make sense,” she said. None of the doctors thought it made sense. And yet, there was the report.

The oncology team at Dana Farber Hospital reached out to the family and post-surgical treatment began. Alice received radiotherapy to the surgical sites and began osimertinib (Tagrisso). Since then, she has been working hard to recover. “She didn’t really know what was going on for about three months. She lost her memory for a while,” Leigh said, “but she’s getting it back. She’s starting to feel stronger.”

Leigh describes Alice as the matriarch of the close knit family. Four of Leigh’s siblings live in the greater Boston area, and Alice has enjoyed her relationships with grandchildren, and now, a great-grandchild. “Her family is everything to her,” Leigh said. Alice has always been fiercely independent. “Even when she came home from surgery, I stayed with her only the first night,” Leigh laughed. “Then she said she was fine and sent me home.” As Alice gains strength, though, she is beginning to wish for company beyond her large family. Leigh is trying to gently persuade her to become involved with the regular Lungevity EGFR meetup, or seek other ways to connect with fellow survivors.

This most recent phase of her mother’s recovery is hard; being a caregiver in general is very hard, Leigh said. “It’s very draining, very emotional.” Leigh slipped into the role almost by chance. While several siblings live nearby, either their intense work schedules or long-dreamed- of-travel plans made Leigh the logical one to directly support her mother during diagnosis, surgery, and the aftermath. “I wouldn’t have it any other way,” Leigh said firmly. She’s the one in the family who’s most comfortable with researching lung cancer, and organizing is second nature to her. Over the summer, she started a What’sApp circle for the family and a shared document where she recorded the results of every doctor visit. “That way everybody knew what was going on,” she said.

That means in addition to being her mother’s caregiver, Leigh is the emotional and informational hub for the family. “It’s a big responsibility,” she acknowledged. So how is she taking care of herself? Leigh laughed. “Umm…I’m not?” Then she described the house she and her husband bought just this year. It backs up to cranberry bogs and woods. “It’s restorative-- I look forward to getting home at night.” Leigh’s job as a preschool teacher and nanny also keeps her going. “Giving back, seeing children grow and learn-- it’s wonderful. I wish I’d known about this work decades ago,” she said.

Leigh would like other caregivers to know that if you don’t take care of yourself mentally and physically, “you won’t get through it.” She had already started “going in the right direction” before her mom got sick. “I wasn’t the healthiest person,” she said. But as she began to change what she ate, she began to lose weight. “It’s easy to start a trend, “ she said. “The challenge is keeping it up.” This is especially true considering the increased cost of eating organic, unprocessed foods. But Leigh’s commitment to healthful living has not waned; in fact, it has influenced her mother. “Mom just admitted her body has almost detoxed from the crappy food she was eating,” laughed Leigh. The new focus makes it easier for her mom, a diabetic, to control her sugar levels, too.

Mindfulness about nutrition extends to other areas for Leigh. “Be present,” is what Leigh advises-- and reminds— herself. To the degree that personality and circumstances allow, “validating the patient’s feelings and experience is the most important thing-- not just jollying her out of it.”

The word empowering often comes up in Leigh’s conversation. The more involved she becomes in the lung cancer community, the more empowered she feels. Leigh loves the Lungevity website for its wealth of information. Lungevity led her to Go2, and EGFR Resisters helps her keep her finger on the pulse of developments in the field.

While many conferences and advocacy activities are too far away to attend, Leigh recently inspired her family to participate in the Dana Farber cancer walk. “There were five of us; we raised $2,000!” Leigh felt proud of their accomplishment, and empowered by their participation.

Lung cancer is hard for both survivor and caregiver. But talking with others helps. “You may hear a detail of someone’s experience, and it's exactly what you needed to hear,” Leigh said. It makes the load a little lighter, somehow. And that’s why we’re all here.

Written by Lori Chmura

Living Fully, Living Forward
What began as a routine medical checkup in January 2021 became an unexpected turning point in Ken Hubers journey of life. After developing a mild cough that disappeared within two weeks, he initially believed everything was fine. But his wife, Dagmar, sensed something more and encouraged him to continue seeking answers. After months of persistence, they requested a simple chest X-ray on May 1, nearly four months after the initial appointment. Ken later reflected on how close he came to not returning for the imaging, a moment that proved pivotal. The X-ray led to a PET scan on May 12, his 60th birthday, and by June, an EBUS biopsy confirmed a diagnosis of stage IV non-small cell lung cancer (NSCLC) with an EGFR exon 19 mutation. Ken had always lived an active, healthy lifestyle.

Like many people, lung cancer was never something he imagined could affect him. Today, he shares one message whenever he has the opportunity:

Anyone with lungs can get lung cancer.

Through openness and advocacy, Ken hopes to challenge misconceptions and help others understand that lung cancer does not discriminate.

Choosing Hope from the Start
Soon after diagnosis, Ken began targeted therapy with Tagrisso. At the same time, he and his wife made a shared commitment: not only to treat the disease medically, but to support healing in every aspect of life.

Together, they partnered with a naturopathic oncologist and embraced lifestyle changes centered on nutrition, supplements, mindfulness, and other alternative therapy alongside conventional treatment. Their approach became a powerful collaboration built on hope, partnership, and intentional living.

Nearly five years later, Ken is still active and deeply engaged in the things he loves, a powerful reminder that a stage IV diagnosis does not define a person's future.

Living Between Scans
Cancer has taught Ken one of life's hardest lessons: how to truly live in the present.

Even when scans are stable, uncertainty remains. He often describes the experience as a mental battle, learning how to move forward while living with the unknown. Over time, however, he realized that fear does not have to control the days between scans.

After each stable result, Ken makes a conscious decision: to keep living fully, to keep believing in progress, and to focus on what lies ahead rather than what might happen.

Inspired by the healing principles outlined in Jamie Turner's Radical Remission, he focuses on what he can control: things like mindset, connection, purpose, gratitude, and daily choices that support emotional and physical well-being.

A Different Way of Seeing Life
Cancer reshaped Ken's perspective in unexpected ways.

He worries less about financial stress and things beyond his control, choosing instead to focus on the present moment. For Ken, the experience reinforced a universal truth: tomorrow is never guaranteed for anyone.

Ken and Dagmar live in a small ski resort community where relationships matter deeply. They know their doctors and nurses personally, creating a sense of care and connection that goes beyond medicine.

"In our town," Ken often reflects, "I'm not just a patient, I'm a neighbor and a friend," something that gives him great comfort.

People are frequently surprised when they learn about his diagnosis, often saying, "You look great; I didn't know you were sick." For Ken, that reaction carries an important message: living with stage IV lung cancer can still mean living well**.**

Strength Through Community
Connection has become one of the most powerful sources of strength in Ken's journey.

He actively participates in EGFR and Tagrisso online support groups and joins a weekly Zoom gathering with others navigating similar experiences. Listening to shared stories reminds him that no one walks this path alone.

Ken has also connected with many newly-diagnosed patients, offering reassurance and perspective during one of the most frightening moments of their lives. His message is simple but powerful: "We've got this."

He believes hope grows stronger when it is shared.

Turning Experience into Advocacy
Ken has transformed his experience into purpose. He advocates for continued lung cancer research funding by writing to members of Congress and sharing encouraging stories with newly-diagnosed patients.

He understands that advances in treatment exist because patients, families, researchers, clinicians, and advocates continue pushing forward together.

Every story shared helps reduce stigma, inspire hope, and move progress forward.

Lessons Worth Sharing
Although diagnosed at age 60, Ken considers himself young because he fully intends to live a long and meaningful life.

Along the way, he has learned lessons he now shares with others:

- Advocate for yourself and listen carefully to your body.
- Build a strong support community — connection changes everything.
- Have important conversations about how you want to be cared for.
- Slow down enough to truly listen, live, and love more deeply.
- Never assume lung cancer only affects smokers.

Living Proof
Today, Ken's life looks remarkably normal. He remains active, engaged, and deeply connected to his community. Cancer is part of his story, but it does not define who he is.

His journey reflects a powerful truth: living with cancer is not only about survival, but also about perspective, gratitude, resilience, and choosing to live fully every day.

Ken continues forward the same way he approaches each milestone:

One scan at a time.

One day at a time.

Always moving forward.

LAURA BOOK: Just as I was retiring and moving across the country from New York to the Seattle area, the first hint of something amiss was blood-tinged mucous in the sink when I cleared my throat one morning. Being the hypochondriac that I was, I went immediately to my primary doctor who sent me to an ENT specialist. The ENT doctor sent me for a chest xray which I had the same day, only to be called back for a catscan of my chest, citing that there seemed to be a node on my chest in the xray. I was told to follow up with a pulmonologist and that cancer could not be ruled out. Wow, I was really anxious now but after a negative bronchoscopy and repeat scans, I was told that I didn’t have cancer and nothing had changed on the scans…..until….almost one year later when I had severe neck pain and after more doctor visits, it was determined that that “node” in my chest had caused metastasis to my C4 bone.

Surgery, bone replacement, and biopsy of this bone confirmed I had stage 4 EGFR positive lung cancer even though I was a never-smoker. It was then that everything changed to ‘before vs after cancer.’ It was a very rough time emotionally coming to grips with the fact that I now really had an expiration date. I wasn’t going to live forever…. a tough pill to swallow!

After getting counseling and joining a cancer support group, I got my “cancer legs” and proceeded to learn as much as I could about my lung cancer so I could be my best advocate when it comes to treatment decisions. Other ways that I ‘battle the beast’ is to advocate for lung cancer awareness and research funding. I now communicate regularly with my US Senators and Representative on lung cancer research issues and funding; I joined the EGFR Resisters Facebook group and volunteer as their Media Lead and newsletter manager; participate yearly in the GO2 Foundation for Lung Cancer’s Advocacy Summit as a state leader; and am a consumer reviewer (nominated by LUNGevity) for the Lung Cancer Research Program (LCRP) at the DOD.

Participating in the LCRP has been a challenging and rewarding experience. Although I always avoided taking science classes in college, I now find myself swimming in biology and clinical terminology. Cancer is a very tricky disease that always seems to eventually outsmart treatments. However, it is very empowering being a consumer reviewer and getting to see what may be coming down the research pipeline and being able to have an impact on what research gets funded. So many innovative and strategic ideas that I get to read about and review from the patient perspective. I sincerely hope that these efforts help lead sooner than later to a cure for lung cancer or a way to live with it as a chronic, not terminal disease, as I have a very cute new grandson in Chicago who I want to see grow up.

April Fools Day! It’s Lung Cancer! (written by Karen LaBonté)

Andrew Kasten’s introduction to lung cancer started late in the afternoon on April 1, 2022. “I’m talking on the phone, and my left arm feels like it’s going numb,” said Andrew. The next day, on the way home from coaching his son’s soccer team, he began having the sensation again from his forearm through the left half of his chest. “It was an active electric sensation, a kind of pressure I’d never felt before,” he said.

His wife insisted he lie down for an hour, and that’s when things got really strange. “My left arm started gyrating, then I was pulsating from the waist up. My left pec began pulsating so hard—it was like the movie Alien, when the monster bursts out of the chest.”

At the nearest ER, an EKG and X-ray ruled out a heart attack, gunshot wound, or other obvious causes; the doctors were baffled. Andy’s brother-in-law suggested he see a neurologist. The consultation began with a routine MRI of the brain and cervical spine. Andy received the results through an online portal and passed them on to his brother-in-law to decipher. His brother-in-law called and said, “Andy, are you aware of what’s going on? Get your wife on the phone. You have brain tumors.” The follow-up neurology visit was pushed up from two weeks out to the next morning.

“The neurologist burst into the room: ‘Oh my gosh, oh my gosh, you’ve got tumors in your brain!’ Talk about bedside manner,” Andy laughed. The brain lesions lit up the screen. Andy was checked into University of Texas Southwestern Cancer Center, a sister facility of MD Anderson, where he spent several nights. Testing showed the lungs as the site and source of the tumors, which had metastasized to the brain. After biopsy, the diagnosis became official in May: EGFR adenocarcinoma, Stage IV.

Andy’s first-line treatment was Tagrisso and gamma knife radiation to the brain. “My brain’s been stable since,” Andy reported. There have been small bouts of radiation to address nodules in the vertebrae and collarbone, but “the physician assistant said, ‘Don’t worry—we call these whack-a-moles. We’ll tell you when to worry.’”

“That really helps,” said Andy. “The doctors focus on the science and maintain a neutral demeanor. But the rest of the clinical team is important too—they can sometimes interact differently, providing warm encouragement. I feel like I’m in really good hands. I dig them all.”

After two years on Tagrisso, scans revealed minimal progression. Andy began treatment line 2: amivantamab with carboplatin and pemetrexed. Toward the end, he dealt with the infamous amivantamab rash on his face and scalp but got help from an oncology dermatologist. With another progression, he’s recently moved into treatment line 3, a clinical trial in which he was placed into the standard-of-care arm. He receives infusions of Taxotere and feels minimal effects. Feeling great has been a saving grace for Andy. “I have no physical limitations, aside from the usual challenges of a 50-year-old body.” What bothers Andy is hair loss—not from the top of his head, but from his beloved goatee.

What Matters?
Family, especially his kids. When he was first diagnosed, Andy’s hope was simple: “Please let me feel well enough to go on my older son’s first weeklong Scouting summer camp. Since then I’ve gone on four trips with him,” he said.

Andy is grateful to have maintained his character through lung cancer—part of which was the determination to keep living his regular life. “I could crawl up in a fetal position and let the kids see that, or I could continue living.” Andy stays busy with his sons in soccer and scouting. Today, if he has even a fleeting thought of cancer, he looks at his kids, and they boost him up. His wife is pretty strong, he said. When there was the first sign of progression, she was distressed—but “she carries on like I do, like we always have.” While lung cancer is always hard on families, Andy appreciates the support his broader family has given. He’s also thankful to have Rocky, one of their two family dogs, who served as his emotional support dog the days after he returned from the hospital.

Andy likes to do a little bit of everything: drinking coffee, consuming TV series, eating his wife’s excellent cooking, spending time with the dogs and his kids, and listening to baseball on the radio. “I never thought the Texas Rangers would win the World Series anytime soon,” he enthused. “They did the year I was diagnosed. How ’bout them apples!”

Andy continues to work at home as an access manager for Bank of America. He’s grateful to have a supportive team manager and a flexible schedule.

Advocacy?
Andy has done some minor fundraising on social media. While at first he didn’t want to broadcast his diagnosis, he now tries to educate people whenever he can. “I slip lung cancer into conversations,” he said. “It can be weird—some people react, others don’t even seem to process it. My simple message is that lung cancer can hit anyone with lungs, and we didn’t do
anything to cause it.”

Andy’s dream is to shift how media portrays cancer survivors, especially in children’s literature. When he was searching for a book to help explain his diagnosis to his sons, he found plenty of titles featuring moms and breast cancer—but books with dads and children? Not so much. He said, “I wanted to be as prepared as possible to talk with my sons. We consulted a child life specialist, and I decided on a book without any gender pictorials, A Kids Book About Cancer, by Dr. Kelsie Storm and Sarah Porter. I read it with them and kept it very simple, without sugarcoating anything.” Today, if Andy faces progression, he waits to talk about it with his boys
until he can also tell them what the treatment plan will be.

What Advice Would He Give Other EGFR Lung Cancer Survivors?
While Andy hesitates to give advice, he has some thoughts:
● Keep moving. Stay active.
● Surround yourself with people who care about you—let them bring you up when you feel down. Enjoy the emotional support your pets can provide.
● Support your medical team. Follow the doctors’ orders. But also educate yourself: your diet and routine matter.

While Andy believes “cancer doesn’t care about your age, your diet, whatever,” he’s worked hard to improve his overall health. He emphasizes organic foods, avoids processed foods, and eats lots of fruits and nuts. “My wife is an amazing cook,” he said. “I also believe exercise is really important.”

“Take notice of those true friends who rise to your situation—they are your army of supporters— and notice those who wither away. It will feel disheartening for a moment, but it provides clarity. I’m grateful to those who have provided meals, sent cookies, or simply written or visited. They took tangible actions to show support. Others might say, ‘Let me know what I can do,’ and then nothing happens.” You can almost hear Andy’s shrug over the phone.

Andy looks for small ways to keep a positive mindset. One is to turn corporate password resets into mantras. “I make passwords that give me a quick reminder: SurvivorDad, FitnessDad, FightForLife, PushThru.”

Andy also looks forward to staying connected with EGFR Resisters—and, one day, to meeting other survivors close to home. “It helps,” he said, “to know we’re not doing this alone.”

He Sums It Up
“I want to keep riding the train of hopefulness until I need to hop on the next one that can take me further. The hopefulness keeps me mentally safe and comforted.”

And in true Andy fashion: “I still love the Alien films and April Fools Day. I just really want my goatee back.”

Valerie Brown’s life with lung cancer began in 2012, with a cough. By November, she’d been back and forth to her primary care physician for antibiotics, even steroid injections, only to have no relief. Finally, she was referred to a pulmonologist. A CT scan showed ground glass opacity. Although lung cancer was a possibility, the doctor reassured her: “You’re too young. Mostly older people get it.”

The next step was a bronchoscopy, followed by a visit to a pulmonary interventionist, who immediately sent Valerie for a PET scan. “I got this nonchalant call on a Saturday morning before Christmas,” Valerie said. “They said, ‘We need to schedule you to see a surgeon. You have lung cancer.’”

There aren’t a lot of doctors in southern New Jersey, where Valerie lives, so she traveled to Philadelphia for a needle biopsy. “There was no talk about biomarker
testing,” she said, but the report was definitive: adenocarcinoma of her left lung. “I had an open thoracotomy for an upper left lobectomy,” Valerie said. “I was told it was curative. There was no staging, no follow-up except for a CT scan every six months. That was it.” By today’s standards, that treatment seems almost primitive-- but Valerie stayed recurrence-free for almost five years.

Everything changed during a family outing when Valerie tripped over a car seat and tumbled pell-mell down a hill. “It’s a family joke now,” said Valerie. “But it wasn’t so funny then.” A scan for her injured shoulder also picked up something unstable in her left lung. She returned to Pennsylvania for another needle biopsy and PET scan. This time, the tumor board — with Valerie included in the discussion — recommended proton radiation.

After the radiation was done, Valerie’s blood pressure went through the roof. An ER visit showed that she had developed pneumonitis. Doctors recommended waiting four months for a follow-up CT, but that did not sit right with Valerie. “I researched until I found who I thought was the best oncologist on the East Coast,” she said. New scans and biomarker testing confirmed what she feared: mediastinal nodes were now involved, and her cancer had become Stage 4. Valerie began Tagrisso on April 12, 2019.

CT scans every three months have monitored her progress. Last December, doctors found new nodules in her lower left lobe — five or six in a line — but they were small, so her oncologist opted to watch and wait. Valerie is in the process of changing doctors again after her previous oncologist left clinical practice. She’s hopeful her next oncologist will be someone with whom she can build a personal partnership. “Meanwhile, I just keep going, you know?”

And she does. She travels often to Louisville for extended stays with her daughters and grandchildren. She also remains close with grandchildren who live nearby in New Jersey. “I’m very involved with my grandson and his karate,” she said. “We have a special bond.” She goes to the gym almost every afternoon, making good use of a warm water pool. “I grew up by water and love being in it. While I’m in the pool, worries float off of me.” Physical therapy also helps her stay strong — because, as she knows, health maintenance isn’t only about lung cancer.

Valerie acknowledges she used to be able to do more. “I have to prioritize.” What matters most to Valerie is her family, her kids, her 10 grandkids, her friends, even her cat. “The little faces of my youngest grandkids, their little smiles-- they spark so much joy.”

Helping other cancer survivors sparks joy too. “I want people to have hope. There’s so much support. Sometimes they might have to dig a little for it-- that’s why I do what I do. I want it to be easier for them to get support for themselves and their families.” Valerie has served as a phone buddy for GO2 and the Cancer Hope Network of New Jersey, is active in the LiveLung advocacy network, and has participated in American Cancer Society lobbying efforts, most recently meeting with her congressperson about Medicaid cuts.

“It all started with EGFR Resisters!” she said. EGFR Resisters was the first place Valerie found support. She remains in touch with a number of the people she met more than 6 years ago.

Valerie’s lung cancer story is still being written. She knows there will be ups and downs ahead, but her commitment to living fully — and to helping others find their own strength - remains unwavering.

DAN CADIGAN: I was first diagnosed with suspected stage I NSCLC in April 2013 at age 46. In hindsight, symptoms had been smoldering for several years but I put them down to other causes. For several winters, I noticed that I was getting short of breath more easily with activities but having had asthma since my teens, I simply wrote it off as “my asthma is getting worse as I get older.” Even as a primary care physician, I was caught up in thinking that only smokers developed lung cancer, and therefore it wasn’t a consideration for me. I had developed a cough in January 2013 which was worse at night. Again, I attributed it to asthma. Over the next month or so, I developed a very salty-tasting sputum with the cough. Something in the back of my mind from medical school told me that was significant, but I couldn’t recall why.

At the time I cared for hospital inpatients as well as my outpatient practice, so I tended to leave my health concerns secondary to those of my patients. My wife, an ER nurse, listened with a stethoscope one day in late February and told me my breath sounds were abnormal at the base of my right lung. I was on call that weekend for hospital inpatient coverage and I developed a high fever. I called my family doctor, a close friend of mine, and asked for a chest x-ray. It showed a right lower lobe infiltrate, probably pneumonia. I felt sick enough that for the first time in 18 years, I called a colleague and asked him to complete my call rotation. By the next day, I felt well and the fever was gone. I probably would not have gotten things checked again except that the following weekend I developed severe chills. A repeat chest x-ray showed the pneumonia had not improved despite the fact that I had felt better for the entire week in between. We did another course of antibiotics and then repeated the chest x-ray. The infiltrate was still there so it was onto a CT scan. This did not show a solid mass but pretty well the entire right lower lobe looking like an infiltrate/infection. But now I felt well. I scheduled an appointment with a local pulmonologist I trusted for follow-up.

Cancer was still the last thing on my mind. I was more suspicious that I probably had a fungal infection. I still suspected my cancer risk was extremely low. When I saw the pulmonologist and told him about the extremely salty sputum, he immediately said that was a hallmark for bronchioloalveolar cell (BAC), a subtype of non-small cell adenocarcinoma of the lung. That was at least reassuring because BAC has a better prognosis. Interestingly, my PET scan barely lit up. It only showed a right lower lobe abnormality, no other involvement. (The fact that the PET scan doesn’t show much uptake from my cancer does limit my ability to follow it with PETs now, however.)

I met with a thoracic surgeon at a major national hospital who also had a fellowship in thoracic oncology. I underwent mediastinoscopy and my nodes were negative so it was recommended I undergo a right lower lobectomy. The hope was that would be curative for my suspected stage I disease. He did have me see a thoracic oncologist at his institution as well. When I asked about five-year prognosis, he very tersely said “50-50” (for those thinking about entering the medical field, bedside manner should be at least 70% of the quality of the care you provide.) Subsequently on May 22, 2013, my wedding anniversary, I underwent a right lower lobectomy. Intraoperative pathology showed there was also a tumor in the middle lobe so that was removed as well. So I came out of the OR now knowing that my cancer was stage III. The final pathology showed it was a mixed adenocarcinoma but had some bronchioloalveolar cell features, and it was EGFR exon 19 deletion mutation positive.

I initially followed with my local oncologist, an exceptionally skilled and caring individual. He did recommend that I have Foundation One genomic testing done on my tumor, and he arranged this to check for other DNA mutations. There was only one other mutation which was something rare that’s not currently targetable. At that time, the protocols called for chemotherapy so I started treatment with Cisplatin and Alimta about four weeks after surgery. I return to work in my primary care practice part-time about eight weeks after surgery while still undergoing chemotherapy.

Needless to say, it was a shock to understand I now had a stage III cancer. My two kids were young, ages 12 and 9 at that time. Recognizing that statistics were not in my favor, my goal was to see them both finish middle school; anything else would be considered a blessing. Subsequently, as I completed chemotherapy, my attitude changed. I decided I was going to be a long-term survivor. I was not going to let cancer rule my life. That realization hit me one day at the supermarket. I looked in the next checkout line and there was a young guy in his early 20s. I realized that he could potentially walk into the parking lot and get hit by a car and be killed, but he was not spending his days thinking “What if I get hit by a car today? I had to take the same attitude. There was no point thinking about the “What if the cancer comes back?” Doing that would just making me miserable and not change anything.

There was no evidence of any recurrence on my initial scans after chemotherapy. I returned to work full-time. By the following spring, there were a number of worrisome signs of small nodules in both lungs on my follow-up scans. Since my PET scans do not light up, and the nodules were too small to biopsy, we opted for surveillance and I had a repeat CT scan in 3 months. This showed further increase in size and number of the nodules. They were still scattered and difficult to biopsy. I underwent bronchoscopy. No single nodule was large enough to get a good sample from accurately, and all 18 random samples taken were negative for cancer. After discussion, it was felt that possibly this could also be chemotherapy-related changes or even a low-grade infectious process. I went on a month of antibiotics and prednisone but the repeat scan a month later still showed the changes. My oncologist had been consulting with a thoracic oncologist at another large cancer institute. This man was the most knowledgeable, caring individual I have probably ever met in medicine. He suggested that I start Tarceva and said he was pretty certain that everything would be gone on my follow-up CT in one month. I started that in late August 2014. He was right; my follow-up CT was clean. What was left was some very small scattered residual nodules.

The thoracic oncologist had also recently returned from a conference showing good results with Avastin (based on a study in Japan) in exon 19 deletion EGFR non-small cell lung cancer. He got my insurance to cover it even though it was not approved for lung cancer at that time, and I was on that for a year.

Tarceva came with its own set of problems however. I have had reflux all of my life and required medication treatment for years. I couldn’t take any of my usual reflux medicines with Tarceva since its absorption was considered acid-dependent. The only way I could control the reflux with mild medications was with a very restrictive diet. I basically ate shrimp, white fish, and Ramen noodles for months. No caffeine. I lost 25 pounds in eight weeks. I would not recommend that weight loss diet to anybody. An exciting thing in November of that year was that I discovered the Beards for Hope campaign by Free to Breathe. With my horribly sparse malnutrition beard, we raised $19,000 for lung cancer research from the kind people in my small town of about 10,000, along with friends and family in Canada. That was a very exciting and telling moment for me. People do care.

I subsequently switched to Gilotrif in spring of 2015 as I could take my acid lowering reflux medicine with this. I have remained on it ever since. And unfortunately, I gained back most of the weight I had lost. This made my oncologist a whole lot happier than it made me.

I manage my life with cancer by keeping myself active. My family is my number one priority. I cherish every moment I have with my wife and kids. Work remains a release for me but also is a stressor as I see my own patients dealing with cancer of various types. Fortunately, I can better relate to their situations since I have been through it myself. Each of my patients that develops any sort of cancer gets my cell phone number, and I make myself available to them 24 hours a day if needed to answer any questions or just talk if they have concerns. Unfortunately, in my line of work, I deal with survivor’s guilt quite a bit when I see patients pass away that were diagnosed long after I was or were expected to have a better cancer prognosis than mine.

I keep active walking the dog, skiing when the Midwest winters allow, enjoying the outdoors, and reading. I have had some exciting travel. I have made it beyond the middle-school wish and will see my oldest go off to college later this year. I have realized not to let the little things in life bother me and have found a new spirituality. I am excited by the research going on presently in lung cancer and generally feel hopeful for the future.

Fortunately, I have a good relationship with my medical team. The oncologists I see are ones I also refer patients to myself. I generally see the thoracic oncologist at the large national center yearly and follow with my local oncologist in the meantime. Unfortunately, because I live in a small area, I have gone through a few local oncologists because of them moving away. I realize all the emphasis now is on following at a large comprehensive cancer center. While this is an important aspect of treatment, not everybody has the ability to go to such centers regularly however. From my experience, I believe you can do well if your oncologist locally is willing to partner with a subspecialist they know at a large center and keep in touch with them about your case on a regular basis. I would highly recommend that the thoracic oncologist at least be regularly advising your team. That way, you get the specialized information, but can do your care close to home, which can be important both financially and for you and your family physically. My radiologist and I have a love-hate relationship. I generally walk right out of my CT scan since I know him from work and walk straight into his room and say “okay let’s look at it.” He is not a proponent of lung cancer CT screening, however, so we have butted heads on that a number of times.

Fortunately, knowing a lot of my local oncologists personally, I am able to get some of the latest news on research from them. I also get a lot of it in my emails from medical journals etc. A lot of the best information I get, however, is from social media from some of the fantastic patient advocates out there, particularly many involved in this group as they post recent research findings and links to studies frequently.

I have only recently become involved with the EGFR Resisters community. I’m always astounded by the knowledge and drive of the founders and am very proud of the advocacy this group has shown. It is wonderful to see the support we give each other and to see the stories of the long-term survivors involved. It has been a great opportunity to have met some of you personally. Knowing that people beat the statistical odds is important. Cancer is all about HOPE.

Cancer has changed my life. I try to see the positive in everything and not focus on the negative. I have a new priority of pushing lung cancer screening to the forefront of primary care medicine cancer screening. Early detection will not just help people live by opening up treatment at an earlier stage, but well increase the number of lung cancer survivors exponentially, and it is survivors that drive the national agenda to increase research funding and awareness. Right now we do not have a large enough survivor pool compared to other cancers. We can change that. I feel a new pull towards advocacy and education. I was honored to speak at the Lungevity Hope Summit Columbus last fall and am looking forward to being on the HOPE panel at the Washington DC summit this year.

I encourage all other lung cancer patients to stay positive and fight. Don’t get caught up in statistics. Most of the statistics about survival are out-of-date and did not exclude cancer patients with numerous other health problems or extremely elderly age, of which lung cancer has a large number. If you look at the true survival statistics with these numbers excluded, survival with lung cancer as a chronic disease is a real possibility. Live life and love life.

Written by Lori Chmura

A New Mother, A New Reality
When Courtney walked into her annual physical appointment in August 2025, she thought she was doing something ordinary, you know, the kind of routine care that responsible adults check off their to-do list. A lingering dry cough and shortness of breath felt annoying, but certainly not alarming. Pneumonia seemed like the most logical explanation, not common at her age, but not out of the ordinary. She never imagined she would walk out of the emergency room days later with a diagnosis that would permanently divide her life into "before" and "after."

She was a new mom, having just given birth to her daughter Isla nine months earlier.

The obligatory chest X-ray ordered by her primary care doctor came back abnormal. What did that even mean? A follow up CT scan revealed a lung mass, which quite quickly led to a biopsy which confirmed the unimaginable, adenocarcinoma of the lung, at 33 years old. How could this be real?

Further testing revealed stage IV EGFR exon 19 lung cancer, with metastases to her hip and spine.

"I went in expecting to be told I had pneumonia," she says. "Instead, everything changed."

A Diagnosis That Rewrites the Story
Cancer does not wait for convenient timing, but this diagnosis arrived at one of the most vulnerable and transformative moments of Courtney's life, her entry into motherhood. While most people her age were building careers, planning futures, and raising young families, she suddenly found herself sitting in oncology offices, learning the language of scans, molecular testing, and treatment regimens. Finding common ground with women her age seemed like such a fruitless endeavor.

How could they ever relate to what she was going through?

She began active treatment shortly after diagnosis with a combination of carboplatin and pemetrexed chemotherapy along with daily Tagrisso, a targeted therapy for EGFR-mutated lung cancer. Today, she remains on maintenance chemotherapy every three weeks and continues Tagrisso daily.

The results have brought cautious hope. Her most recent scans show stability, with her primary lung tumor shrinking significantly and metastatic lesions in her hip and spine healing.

"It's strange to live between fear and gratitude at the same time," she reflects. "But that's where I am."

Redefining Strength
Before cancer, productivity shaped her days. After her life-changing diagnosis, presence became her priority. She stepped away from work to focus on healing, on her family, and on being present for Isla.

Slowing down, something she never planned to do, became an unexpected coping strategy.

"I take life one day at a time," she says. "My biggest comfort is being home. Simple routines. Moments of normalcy."

Her anchor is her family: her husband, her daughter, and the circle of support that has gathered around them. On the hardest days, Isla is her source of strength, a reminder of what she is fighting for and what still makes her feel fully herself.

"Cancer shifted my priorities toward health, time, and relationships," she says. "Those come before everything else now."

The Reality of Being Young and Diagnosed with Lung Cancer
One of the most painful parts of her journey has been confronting the misconceptions surrounding lung cancer. Many people still associate it with age or a single cause, often assuming lifestyle choices must be involved. As a young woman and new mother, she finds herself constantly navigating those assumptions.

"People don't expect young people to get lung cancer," she explains. "And they don't expect it to happen to someone who looks like me."

The stigma can feel dismissive and isolating. Courtney believes this misunderstanding contributes to delayed diagnoses and a lack of empathy for young patients, something that must be changed.

"If I could change how lung cancer is talked about, I would remove stigma of lung cancer. It deserves the same urgency and research attention as any other cancer."

Learning to Live in the Present
Cancer has reshaped how Courtney relates to time. Long-term planning feels uncertain, but joy has not been cancelled. In fact, it feels more meaningful now.

"I plan loosely," says Courtney. "I stay rooted in the present while holding space for the future. Joy now matters even more because of the uncertainty."

This perspective has also taught her to ask for help, something she once found difficult. She has learned to rest without guilt, to say no when her body demands it, and to advocate for herself as part of survival.

"It's not optional anymore," she says. "Listening to my body is part of staying alive."

A Community that Carries Her
Her medical care spans teams at Dana-Farber and Yale, where structured, ongoing treatment is a central part of her life. Beyond the clinic, community has become just as important.

She follows lung cancer research closely, especially through organizations like the Young Lung Cancer Initiative and LUNGevity. She also finds support in the EGFR Resisters community, where shared knowledge about treatments and clinical trials helps her feel less alone.

"Seeing what others are doing helps me stay informed," she says. "But it also reminds me I'm not the only one walking this road."

Her relationships have deepened in ways she never expected. Superficial connections have fallen away, replaced by profound kindness from friends, family, and even strangers. Cancer has reshaped her relationship with herself too, forcing her to embrace her limitations, while accepting care. Independence and fortitude have defined her; now she must rely on the care and love of others. She has come to the reality that doing this alone is not an option. Embracing the support of others has strengthened her resolve, and the ability to navigate the complexity that a stage 4 diagnosis brings.

More than a Diagnosis
Outside of cancer, she is still who she has always been: a wife, a mother, and someone who values family above all else. What brings her the most joy now is time at home with Isla, things others her age may take for granted — things like the simple routines, the ordinary days, and the satisfaction of ensuring that her precious role of wife and mother is not altered by her diagnosis. Coming home and diving into the ordinary is sometimes the most gratifying part of the day.

For now, she engages in advocacy in small ways, knowing that her voice will grow stronger as she moves further into her journey. Raising awareness matters to her, especially for young women who may not realize they are at risk.

A Message to the Newly-Diagnosed
To those just beginning this path, she offers honesty without despair:

"You are allowed to be terrified and hopeful at the same time. You don't have to be strong every day. Let people help you. Ask questions. Advocate for yourself.

And know that life doesn't end at diagnosis. It changes, but there is still love, meaning, laughter, and connection here."

Her story is not one of simple bravery. It is one of adaptation. Of learning how to mother through medicine, how to love through uncertainty, and how to live fully even when the future feels fragile.

And at the heart of it all is Isla, a little girl who now gives every day purpose.

"She's my why," she says simply.

In the quiet moments between scans and schedules, between fear and hope, Courtney is still here, loving fiercely, living presently, and reminding us that lung cancer does not look one way, and resilience often begins with love.

Written by Lori Chmura

Samantha Vaughan is a wife to Steve, a mother of four beautiful children, and an area manager in retail from County Laois, Ireland. Until recently, her life was busy, full, and centered on family and work. Lung cancer was never something she imagined would touch her life.

In October 2022, the 48-year-old began experiencing persistent breathlessness following a COVID-19 infection. Initially attributed to long COVID, her symptoms continued for months despite antibiotics and inhalers. When new pain developed in her side, further investigation revealed a lesion in her right lung. A privately arranged CT scan confirmed the presence of a tumor, a shocking diagnosis for a young wife and mother who never expected to face lung cancer.

A Life-Altering Operation
Samantha's first treatment was major surgery. Doctors removed the top and middle lobes of her right lung, along with affected lymph nodes and part of a small airway. She was diagnosed with stage II, grade III lung adenocarcinoma. With the tumor successfully removed and no spread detected, the physicians told her that no additional standard treatment was required.

She spent two weeks in the hospital following surgery and four days in ICU, longer than expected and very frightening to her and her family, with recovery taking between three and six months before she ever could feel normal again.

One of the biggest and unexpected changes she noticed was having to learn how to breathe again, something that is not part of life of a healthy mom in her 40's.

"How hard it is to walk and talk… even to climb stairs," she explains. "It made me see life differently. I stopped caring about what people think. Life is too short for that. Now I focus on what really matters, family time and rebuilding myself."

A Rare Opportunity and a New Path Forward
Despite the physician's initial recommendation that she need no further treatment, Samantha was invited to take part in a clinical trial for patients with EGFR-mutated lung cancer. She became the first post-operation patient in Cork to take part in this trial.

The trial involves taking Tagrisso (osimertinib) daily for three years, with close monitoring through regular blood tests, biomarkers, and CT scans aimed at reducing recurrence risk. Her treatment is due to finish in November 2026. While she has experienced side effects, she remains grateful for the opportunity to take part in the trial and hopeful for the future.

"This opportunity means everything to me," she says. "Breakthrough Cancer Research made it possible. The government has only allowed patients like me access to this drug because it costs €8,000 a month. Without the trial, I would never have had this chance to protect myself for the future."

Living With Fear, Finding New Strength
Samantha tries to stay positive, but living with cancer has brought deep anxiety.

"I fear treatment stopping and the cancer coming back," she admits. "Every lump and bump makes me panic."

She attends counselling, which helps her speak openly with someone outside her family. Walking helps her cope. She has returned to work for now and has also turned her energy toward advocacy, helping to bring The White Ribbon Project for lung cancer awareness to Ireland, something she feels is urgently needed because lung cancer is still not talked about enough.

Cancer has changed how she sees herself.

"I feel like cancer broke me," she says. "I'm looking for the person I used to be, while learning how to live in a new body. My strength now comes from showing my children how strong you can be. I have very low days, and I share that with them too. Life is short. Now I try to live each day as if it's my last."

The Hidden Reality of Lung Cancer
One of the hardest parts of Samantha's experience is how misunderstood lung cancer can be.

"Because I didn't lose my hair, people thought I was fine," she says. "They don't see the tablets I take every day, the pain from surgery, the nerve damage, or the side effects of treatment."

She also struggles with the word "lucky."

"People say I'm lucky because the cancer was removed," she explains. "But I'm not lucky to have had cancer. I now live with fear and stress about recurrence for the rest of my life. I know people don't know what to say, but cancer is never lucky."

Support Beyond the Hospital Walls
Although Samantha has excellent support from her GP, nurse, consultant, and oncology team, she found another lifeline outside the hospital system: the Cúisle Centre in Portlaoise, supported by the Irish Cancer Society.

"At first, it took me six weeks to reach out," she says. "Facing the word 'cancer' was hard. But the relief I felt walking in was incredible. It felt like going into a hotel or spa: I was welcomed at the door, and I didn't feel alone anymore."

She began mindfulness sessions with Margaret at the centre.

"I remember asking, 'What is mindfulness?'" she laughs. "Now I understand. We all do it every day, but we don't stop to notice. It's about taking two minutes, breathing in, breathing out, listening to your body, and letting the bad go."

Samantha says the emotional impact of cancer is often overlooked in hospitals.

"Cancer doesn't just affect you physically it affects you mentally. The counselling for patients and families at the Cúisle Centre is invaluable."

While she took some time off to fully connect with her cancer journey, she has returned to work against the advice of her doctor as of June 2025.

"I'm still at a very early stage of this journey. It was challenging for a busy working mother to step back. My husband had taken on everything, being both mammy and daddy and caring for me too. While difficult, it has also been humbling."

Despite the mental challenges and wrestling with pain and fatigue each and every day as a result of her treatments, she was emphatic that she needed to get at least a piece of her life back to normal, or at least a new normal. Returning to work despite the challenges has renewed her hope in the future and allowed her to balance the grace of support from her dedicated husband, with a sense of independence.

Advocacy, Awareness, and the Future
Samantha is active in advocacy and awareness work with Breakthrough Cancer Research, the Irish Cancer Society, Marie Keating Foundation, and the Irish Lung Cancer Community. She shares her story to help others and challenge stigma around lung cancer.

She keeps up with research, sometimes too much.

"I read a lot, maybe too much," she admits. "It can send your head into overdrive."

To those newly diagnosed, Samantha offers this message:

"Yes, cancer is a word nobody wants to hear. But it's not the end. You will see how strong you are but most importantly, how much stronger you can become."

Outside of cancer, Samantha is someone who loves giving to others. She loves family time, travel, and hearing people's stories. She also loves photography, even when her kids roll their eyes when she takes too many pictures.

Looking ahead, her hope is simple and deeply rooted in love:

"To live long enough to enjoy life as fully as I can and spend all the special moments with my family."

Her journey is still unfolding, but Samantha's story reminds us that lung cancer affects people in many different ways.

Written by Lori Chmura

For Tiffany, caregiving was never just a responsibility, it was a calling. Growing up alongside her younger brother who had significant medical needs, she learned early on the depth of compassion and resilience required to support someone you love. When complications from epilepsy left her brother ventilator-dependent with a feeding tube and tracheostomy, Tiffany witnessed firsthand the complexity of care. That experience inspired her to change her college major to nursing, determined to better support her family.

She didn't yet realize how profoundly those early experiences would shape her own journey.

An Unexpected Diagnosis
In July 2017, Tiffany's life changed in an instant. While preparing for work at the hospital, she noticed subtle, but alarming symptoms: a twitch in her eye and arm, along with worsening migraines and vision changes she had kept to herself. Trusting her instincts, she paused before leaving home, sensing something was wrong. Moments later, she lost consciousness.

She woke up in the hospital to devastating news: an MRI revealed a brain mass. Further imaging identified the source, a lung tumor that had metastasized. At just 36 years old, Tiffany was diagnosed with stage IV lung cancer.

The news was overwhelming. Even with her medical background, she struggled to process it. When she was told to "get her affairs in order," she refused to accept that as her only option telling the oncologist, "I have sh$* to do!" In advocating for herself she sought a second opinion, one decision that would change everything.

Finding Hope Through Innovation
At Fox Chase Cancer Center, Tiffany learned about biomarker testing and targeted therapies. Her cancer was identified as EGFR mutated lung cancer. For the first time, she heard that her treatment might not involve traditional chemotherapy, but instead a daily oral medication.

"I kept asking, 'Are you sure?'" she recalls. "I had prepared myself for chemo, radiation, and a port. I didn't know treatment could look like this."

Her first therapy, a left parietal craniotomy and cyberknife radiation, followed by Tarceva (erlotinib) marked the beginning of a long and challenging road. While treatment was effective, it left her with lasting physical effects, including difficulty with fine motor skills. She adapted, undergoing years of physical therapy and occupational therapy, eventually transitioning away from bedside nursing to roles that better fit her new reality.

Fox Chase is credited with truly saving her life. She describes her experience as having a dream team; they never candy-coated anything. Despite her knowledge and experience as a registered nurse, she vowed never to play the nurse card. Instead, she embraced the education the hospital team was willing to provide, although her preference is to hear things in medical terms. Just be direct!

Navigating Challenges, Finding Progress
Tiffany's journey has included additional hurdles, including a preventative hysterectomy with complications. In late 2018, she developed a T790m resistance mutation and began Tagrisso (Osimertinib) in January 2019.

In 2020, she underwent radiation, which initially went well. However, within weeks, she developed a persistent tickle and cough, along with wheezing and shortness of breath. She was ultimately diagnosed with pneumonitis.

She manages her pneumonitis with the support of a critical care pulmonologist and pulmonary rehabilitation, allowing her to live a full life despite ongoing challenges. Through it all, she has experienced long periods of stability, including more than four years with no evidence of disease. Today, she remains on targeted therapy while managing side effects with the support of her care team.

Her resilience has allowed her to build a meaningful life beyond her diagnosis. During the COVID-19 pandemic, she even built her first home, a testament to her determination to keep moving forward.

From Patient to Advocate
Though she eventually stepped away from her professional role, Tiffany found a new purpose: advocacy. She now dedicates her time to supporting others affected by lung cancer. She completed the STARS PRA program through IASLC and then has dedicated time giving back through mentoring, public speaking, legislative efforts, and collaboration with national organizations such as Fox Chase, LUNGevity, GO2, LiveLung, LungCAN, Ride Hard, Breathe Easy, American Lung Association, American Cancer Society, White Ribbon Project and of course, the EGFR Resisters.

She found the EGFR Resisters community through the First Hope Summit, where she met co-founders Ivy Elkins and Jill Feldman, each a force to be reckoned with. Since then, she has become especially active in the EGFR-positive lung cancer community, where she has found a deep sense of connection and support.

"The community became family," she says. "They understood what others couldn't."

Life Today
Tiffany's experience has reshaped how she lives each day.

"As difficult as it was, everything happens for a reason," she reflects.

She now embraces the simple joys such as morning coffee, sunshine, travel, and time by the water. She avoids unnecessary stress and focuses on what brings meaning and happiness.

"If someone asks me for something, I say yes," she says.

When asked what she wants to share with others navigating a similar journey, she said "Cancer has taught me so much that I really wish I could have learned other ways."

A Message of Hope
She describes her faith as strong, much more so now than in the past. Upon diagnosis she never felt normal; she wasn't fully convinced that she wasn't going to die. Her friends without a terminal diagnosis never really could understand how she felt.

Reaching the five-year milestone was a turning point for Tiffany, not just in surviving, but in truly living. She is passionate about reminding others that lung cancer is evolving, and so are its treatments.

"Cancer doesn't follow a rulebook," she says. "But there are always options. Ask questions. Find your community. Get involved in ways that feel right for you."

Her journey is a powerful reminder that lung cancer can affect anyone, and that with the right care, support, and determination, hope is always possible.

"I want to give back. You never know what's ahead, but there's always something to live for."