LCRF

The Faces of Lung Cancer

11/01/2020

November is Lung Cancer Awareness Month—spread the word to your family and friends about early detection. The stats speak for themselves: The five-year survival rate is upwards of 60% versus 6% for late-stage diagnosis. It's a difference that played a significant role for our #VBGIVESBACK woman of the quarter, Reina Honts. An early lung cancer screening ultimately saved her life.

Of note: Honts isn't a smoker. And while the recommended screening age begins at 55, she wasn't even 50 when she did the CT scan. The message is simple: Early detection matters. Talk to your doctors.

“Everyone pictures crotchety old men and women sitting in their chair, with their pack of Marlboros, but that’s just not the case,” Honts says. “More and more young, non-smoking women are getting lung cancer; a four-year-old was just diagnosed.”

Below, learn the stories of more women who defy the stereotype and prove that anyone—young, old, smoker, non-smoker—can get lung cancer.

Tiffany Job

"At 37 years old, having never smoked a single thing in my life, lung cancer never crossed my mind. In July of 2020, I was in the best shape of my life, chasing after my twins with my husband, and loving every minute of my crazy, full life. By October, I was staring blankly in disbelief as an oncologist explained that I had advanced metastatic lung cancer.

"Three months. Three months from the first noticeable symptom (mild shortness of breath) to Stage 4 cancer that has covered my lungs and started to attack my spine, pelvis and femur. That is how aggressive and virtually undetectable lung cancer can be. In fact, 40% of non-small cell lung cancers are first diagnosed in Stage 4, and over 85% are diagnosed beyond Stage 1.

"As a Registered Nurse, wife and mother to two adorable 6-year old boys, health and fitness were high on my priority list. I ate well and worked out every day of the week. I even taught Pilates in my 'spare time'. During a family trip to Colorado, I noticed a feeling of shortness of breath that seemed worse than just altitude adjustment. By August I had developed a dry cough, then worsening shortness of breath. I did what every doctor will tell you NOT to do, and I turned to Dr. Google. I wrote off my symptoms as adult onset asthma and put off further doctor visits. By September, with family coming to town, I caved to my nagging husband and went back to our primary care doctor. A concerning spirometry test (a physical exam for your lungs), turned into a trip to the pulmonologist and several CT scans. The imaging was not good, but at my age, cancer was still the last thing on all of my doctor’s minds. The next step was a bronchoscopy, which led to a collapsed lung and many, many more test during a week-long hospital stay. This intense work-up, fortunately, allowed doctors to obtain confirmation that the complete occlusion of my lungs shown in the scans was indeed metastatic disease.

“At 37 years old, having never smoked a single thing in my life, lung cancer never crossed my mind.”

"Within a week we were at MD Anderson in Houston discussing treatment options. With my specific subtype of lung cancer (non-small cell, adenocarcinoma, ATK1 and EGFR mutation), chemotherapy is likely to be minimally effective. I am currently taking targeted therapies. The advancements in these therapies in just the last 5 years is nothing short of amazing. These drugs target the genetic mutation unique to my cancer cells and works to stop their spread and even kill those specific cancer cells. But even with these advancements, early detection is the most critical measure to saving lives. This is true for all cancers, but especially so with lung cancer due to its aggressiveness and ability to hide, undetected, until it has spread throughout the body. Lung cancer kills more people every year than any other form of cancer. It is three times more deadly than breast cancer. Advancements are made every day because people generate awareness, which ultimately drives critical funding for continued research and innovation.

"I am just at the beginning of my fight. I am blessed to have an amazing support system and access to the latest treatments available. Most importantly, I have faith in Jesus and take comfort knowing that He goes before me as I charge head first into this battle. I do not fear, for I know in my heart that He has healed me. For me, faith is constantly flowing source of hope. But hope also comes to me from so many sources: continuing medical advancements, encouraging family and friends, supportive neighbors, a caring husband and even complete strangers who take the time to wish me well.

"You can be this source of hope for so many people who fight this deadly and virtually obscure form of cancer. Please, tell your friends and family about lung cancer. Ask them to tell their friends and family and so on. It may save someone’s life and, someday, it may save yours."

ALEX HOFFNER

"As we all manage together through a global health crisis and its implications, I’ve been on a parallel winding personal health journey that led to a diagnosis of non-small cell lung cancer last April. I had canceled a work trip to London in early March due to the coronavirus spread there and had more free time than usual. I was in the shower one morning and coughed up a little blood and realized I had been coughing since before the holidays. I made a doctor's appointment and the nurse who examined me—whom I have since returned to thank—mentioned it could be bronchitis or tuberculosis, or lung cancer, and sent me off to start my journey of tests and a final diagnosis. And while that diagnosis is not great, my overall prognosis is very good—I am young (was happy to hear that at 50!) and otherwise healthy—and I have total confidence in my doctors at UCSF and their treatment plan. Their unanimous decision was to treat me as aggressively as possible and remove the lung tumor all together through laparoscopic surgery, followed by radiation to the brain to take care of a few small spots that had surprised everyone by showing up on an MRI we had done just to check a box.

“There are days when I actually forget I am living with this disease. That's how I am choosing to look at where I am—I am living with cancer and staying positive, confident and most grateful to go through this during a time of unprecedented scientific advancement.”

"I want you to know I feel truly lucky. That may seem odd, but I do. Lucky I listened to my body and a cough that went on for months, lucky I had the time to see a doctor, lucky I live in a city with one of the best research hospitals in the world, lucky they weren’t overrun by coronavirus patients so they could treat me, lucky the treatment for lung cancer has advanced to the point where I am taking a daily targeted chemotherapy in pill form with no side effects, and most of all lucky to have the love and support of my husband and three children, my extended family, friends from all stages of my life, and colleagues at work.

"Probably like you, I am at my best with clarity. Those weeks of tests and discovery and wondering what could be was actually worse for me than hearing the words, "You have lung cancer and here's the recommended plan." Just last month I had my six-month checkup and my tests showed no recurrence of the cancer. There are days when I actually forget I am living with this disease. That's how I am choosing to look at where I am—I am living with cancer and staying positive, confident and most grateful to go through this during a time of unprecedented scientific advancement."

Amanda DeRosa

"Spring 2015, my baby boy and only child had just turned a year old and I had just resigned from my corporate job in Manhattan to stay home full time. At first it was knee pain, like the kind of knee pain your grandparents used to moan about when it would rain. I remember mentioning it to a friend, but we together chalked it up to just being on the floor with the baby a lot. Then my hands hurt, aching so bad I’d wake up. Why would my hands and knees ache? Odd.

"After weeks of this, I finally set up an appointment with my primary care doctor. There's talk of Lyme’s Disease. A week later, my blood work comes in. I remember sitting in my car vividly after the appointment and, of course, Googling some of the information from my blood work, desperate for answers my primary couldn’t give me. I had an appointment set up with a hematologist/oncologist. I knew what oncologist meant and I went straight to worst-case scenario: cancer.

"In the coming days and weeks I had every test on the planet: PET scan, CT scan, chest X-Ray and, the worst of all, the bone marrow biopsy—there are no words in existence to describe the pain. Meanwhile, my body was going downhill fast—night sweats, pain and swelling in my ankles and feet, so much that I was crawling to get to the bathroom. Finally a diagnosis: Lymphoma. I said nothing. My husband quickly asked what stage? 'Stage II.'

"Within four days I was registered at Sloan Kettering. On July 1st, I had major surgery to get lymph node tissue from my chest cavity to figure out which 'chemo cocktail' I would need. Eight days later I received a call from my thoracic surgeon at NYU. Good news, I did not have cancer. I had a rare autoimmune disease called Sarcoidosis. I was told I was going to be OK, that this was an odd bump in the road, but that things were manageable and life was going to go on. However, there was one 'suspicious spot' in the upper lobe of my right lung that we were 'going to have to watch.' For the next three years, I would be closely monitored with low-dose CT scans and, by the end, they were ready to send me on my way. I asked my pulmonologist if we could do one more scan in one year. She was hesitant, thinking it wasn’t necessary but agreed.

“I remember sitting in my car vividly after the appointment and, of course, Googling some of the information from my blood work, desperate for answers my primary couldn’t give me.”

"Fast forward to April 15th, 2019. I went into NYU for my last low-dose CT scan to get the all clear, but that's not how it ended. The scan was at 7 AM and by 8:30 AM I was sitting with my pulmonologist, who had already texted my thoracic surgeon who had operated on me back in 2015—'I'm so sorry, you have lung cancer.'

"The nodule had grown. I was dumfounded. I gripped the wooden sides of the chair I was sitting in as hard as I could without snapping them like popsicle sticks. I was angry and confused; I was in shock. I decided to start focusing on what I could control so I began working with a personal trainer to build core body strength. I started to purposefully gain healthy weight.

"I was told to get my affairs in order, so with my dad at my side, I did just that. I told my doctors I wanted the spring and summer with my five year old son. Surgery was set for August 5th, 2019. I created a plank challenge—I’d never done them before so I started out with just 30 seconds a day but built my way up to 3 minutes the day before my surgery. It was amazing to see #plankswithapurpose grow into a small movement of people showing their support for me by doing a plank; it meant the world to me.

"I miraculously got through my lung surgery and was out of the hospital the next day, I did all of my recovery at home and it was difficult, but I had prepared my body and my mind for this. I was so grateful to know that, on my son’s first day of kindergarten, I’d be there to get him onto the bus.

"I’m a non-smoker and was diagnosed with non-small cell adenocarcinoma at the age of 35. I’m now 36. Looking back, it’s quite amazing that had my body not shown itself to have the autoimmune disease Sarcoidosis, I never would have had all of that work done back in 2015 and we never would have known there was a small ground glass opacity nodule lurking in my right lung. I now go for CT scans every three months and am closely watched by my oncologist at NYU. Just in August, I was able to celebrate one year cancer free.

"I hope this helps to show people that truly anyone can get lung cancer, and that early detection and being your own advocate is absolutely key and vital. I can’t control what happened or what is around the corner, but I can control my attitude and my effort to help myself and others to navigate this awful cancer.

ELIZABETH MOIR

"I was diagnosed with stage IV lung cancer at the age of 29 in May 2019. At the time, I had a 2.5 year old and a 6-month-old baby girl. I was in relatively good health, I’ve always lived an active life, made health conscious decisions and am a former collegiate athlete. After months of being in and out of the doctor, I started coughing up blood and knew something probably very bad was going on. After a failed round of antibiotics, a chest x-ray, emergent CT scan, and bronchoscopy, I was diagnosed with adenocarcinoma. It was after my first PET scan and brain MRI that we learned it was stage IV. I was still breastfeeding at the time, so we actually had to also do a mammogram to rule out metastatic breast cancer, because that would be more likely than lung cancer at age 29 in a non-smoker. The cancer had spread from my main 'tumor' (because it was TINY) in my lower left lung to two lymph nodes in the middle of my chest, three spots on my spine, my liver, my rib cage and my pelvis.

"An important thing to note is that on August 17, 2018, at 30 weeks pregnant, I went to the ER for excruciating chest pain. I could not breath or move without pain. It was like nothing I had ever felt before. I was given a chest x-ray despite my pregnancy, and was diagnosed with a 'calcified granuloma' and pleuritic lung pain. Other than the 'calcified granuloma' in my lower left lung, my lungs were completely clear. It was exactly nine months later that we received my stage 4 diagnosis on May 16, 2019…

“What I want people to know is that lung cancer is not just a smokers' disease. It does not discriminate. I cannot emphasize this enough.”

"I was absolutely stunned at my diagnosis. In fact, I think I may still be in shock 17 months later. Even though cancer is part of my everyday life and I can’t seem to escape it, I am still in disbelief that this is the journey that we are on. In late June of this year, we found out that my cancer was back. The drug I was on (Alectinib/Alecensa) has an average 'progression free survival' of 35 months. I got 10 months. I have two small children and a very loving husband. While I am aware that life isn’t fair, this situation we are in just puts that statement on an entirely different level for me. The new treatment (carboplatin and alimta chemotherapy) seems to be working very well for me right now, just as alectinib had.

"What I want people to know is that lung cancer is not just a smokers' disease. It does not discriminate. I cannot emphasize this enough. I have met SO many people who are just like me in this crazy situation. Both men and women, people all over the world, of all different races and ethnicities. I am ALK+ and even though it’s technically a 'genetic mutation,' this is not something that’s inherited or passed down. There is no known cause for ALK+ lung cancer, but doctors and researchers are fairly certain that this is an ACQUIRED mutation of the ALK gene, which every human is born with.

"What I think could change the face of lung cancer—my photo and photos of others like me. I have never been a smoker. I actually cannot stand the smell of smoke of any kind, and because of that have rarely been around even second-hand smoke. If you see me out and about, you would never guess that I have lung cancer. I am running again and planning on doing another 10k this year. I normally have one or both of my children with me. I am truly living. We are vacationing and spending time together more now than ever (one enormous benefit of COVID)."

SAILA HANNINEN

"My name is Saila (s uh y l ah). It’s safe to say I have not always taken the ordinary path in life. Everyone’s story is unique, and here is a little about mine so far:

"I was born in Finland and came to the U.S. when I was five years old. Since then, I have traveled the world, often nodding enthusiastically at every opportunity to take on a new challenge. I try to make sure no experience is missed. When it comes to setting goals, I don’t take no for an answer. I strive unhindered towards those goals with a determination I was lucky to be born with. Overcoming challenges and sharing these adventures with family and friends is my favorite part.

"I have always had a passion for sports, both as a spectator and a participant. I followed in my father’s footsteps—quite literally. What started in middle school with a 5km neighborhood jog with my dad turned into a lifelong love for running. I dreamed of one day doing a full Ironman distance race because completing 140.6 miles seemed impossible.

“I will not let cancer define me or my story, but I can’t do it alone.”

"On October 2, 2016, I became an Ironman. On that day, I learned the true meaning of the Finnish word 'AKSAA, as it was shouted at me and encouraged me in the toughest moments throughout the day. JAKSAA is a state that’s mental as well as physical. It means that someone has the strength and willpower to keep on going; it means that someone is powerful enough to do anything. Impossible became possible that day.

"On June 30, 2017, as a 35 year-old non-smoker living in NYC, I was diagnosed with stage IV lung cancer. It took a few days, but I quickly realized this is just another race that I will run with the same strength and determination as all the others. I will not let cancer define me or my story, but I can’t do it alone. For my treatment, I have a team of doctors in Colorado at CU Anschutz under the care of Dr. Ross Camidge and in Boston at Dana Farber Cancer Institute under the care of Dr. Pasi Jänne. Last but not most certainly not least, I have an army behind me cheering every step of the way. My fiancé Jay, my parents, my family and my friends give me strength to keep going every day. I am going to dream big because I don’t know any other way, and together we will fight until we win. Period."