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.

DIANE SPRY: I was diagnosed with stage iiib non-small cell adenocarcinoma lung cancer in April 2014. I was only 30 years old. I was working full-time in the business development department at my local ford dealership and had no clue what was coming ahead of me. I started having chest pains and it brought me to the ER where they ran some tests. It came back high d-dimer and they suspected a blood clot so I was taken to have a chest CT. They found a blood clot in my right lung but also a mass in my left lung.

I quickly moved my care from my local hospital and started seeing Dr. Patel at Northwestern in Chicago. We did more tests, and it was confirmed that I had the EGFR mutation. At first, I thought this was a bad thing! I had no idea what any of the terms my doctor was using were. I was started on the drug afatinib (Gilotrif) and sent on my way. Unfortunately, the drug did not work. After one month, I had a chest CT, and they found that the blood clot remained and the tumor was bigger. I started IV chemo right away. The chemo worked for a few months, and I was able to have my original tumor radiated. It wasn’t too much later that I progressed with fluid around my heart. Dr. Patel sent my tumor out for wider mutations testing and it came back positive for MET amplification.

Since then I was a part of the osimertinib (Tagrisso) and AZD6094 (Volitinib) clinical trial (travelling back and forth to Boston under the care of Dr. Oxnard), I was on cabozatinib (Cabometyx/Cometriq) and erlotinib (Tarceva) for two years. We dropped the cabozantinib and added clinical trial drug ABBV-399 (telisotuzumab vedotin) and today I am currently only on Tarceva. I was diagnosed five years ago, and it has taken me a lot of hard work to get where I am mentally today. I cope by living my life as I would have if I didn’t have cancer. I started working part-time again at the ford dealership and am currently looking for a full-time position outside of the dealership. With every ache and pain (and cough!) I worry that the cancer is progressing, and I think that is a natural response.

I love my care team at the University of Chicago. I am still a patient of Dr. Patel’s. When I have an appointment with her, I feel like I am her only patient. The EGFR resisters community has also been very helpful, and I feel like I have helped a few people along the way as well.

My advice to other cancer survivors is to do things every day that make you happy. My favorite thing to do is visit the local Starbucks or Dunkin Donuts for an iced coffee. My sister and I like to visit little cafes and cozy eateries in our area. My sister and family have helped me to stay focused on living my life and not dwelling on the cancer. A fun fact about myself is that my sister and I have seen Andrew McMahon in the Wilderness (google him) almost 50 times live. We have seen him in 10 states and two countries!

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.

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.