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“I’m sorry, sweetheart these are tumors in your lungs and a form of lung cancer”. These were the words spoken to a vibrant, healthy 36-year-old female on October 19, 2017, by the thoracic surgeon. I knew that things were probably not good when he came in and asked if I was alone. Unfortunately, I was alone. Looking back, that day seems like a blur. I remember the ladies at the checkout desk asking how I was doing as they ask so many patients all day long. It’s mere customer service, right? I never made eye contact and mustered enough energy to say the word “fine”. I was far from fine, but I just wanted to get out of there. I never cried in the doctor’s office that day, but walking down that winding hallway and through the parking lot felt like I was carrying cinder blocks for shoes around my feet. The minute I got in my car and closed the door was the moment that I completely lost myself. I have cancer. I am going to die. My parents are going to have to bury their only child. My world felt like it had crashed. The days and weeks ahead were just amazing considering my new circumstances. People loved on me like I had never been loved on before. I received cards and texts and all sorts of support, but a part of me wanted to tell them that I was still the same person and I appreciated the cards of support, but that I wasn’t dead yet. Please hold the flowers too. My lung cancer diagnosis was a complete shock as it is to so many. However, I was asymptomatic and cancer was the last thing on my brain. I was hospitalized for a Bartholin Cyst. I had my yearly exam already scheduled with my OB/GYN and this exam was far from routine. I explained to the nurse that I was in pain and was running temperatures between 101-103⁰. I visited the local emergency room twice to attempt to acquire some relief and was incorrectly diagnosed. My OB/GYN admitted me to get antibiotics started quickly and mentioned a minor surgery, but before I went to the hospital, he wanted me to have a CT of my abdomen to identify the cyst prior to any procedure. Thankfully, the tech caught just the lower portion of my lungs on that scan and the radiologist noted lung nodules. When I went back to my OB/GYN for my check up, he mentioned the lung nodules and ordered a full chest scan. He informed me that people had benign nodules and they could be there from my severe infection, but that he wanted to just make sure that it wasn’t anything. The next day he called me to inform that the nodules were still there and he would like for me to see a Pulmonary Specialist. I agreed and the Pulmonary Specialist was very concerned about the number of nodules in my lungs which were over 100 scattered across both lungs. He conducted a bronchoscope and a needle biopsy for which both were non-diagnostic and I was then punted to the Thoracic Surgeon. The Thoracic Surgeon removed three wedge sections and sent the pathology off to Mayo Clinic in Arizona. After further molecular testing, my oncologist educated me on the different mutations and the path of treatment that would be taken for each of them. It was determined that I was Stage IV due to both lungs being involved and was positive for T790M. I began Tagrisso as a first line on November 11, 2017. After 6 months on this drug, my last scans read “barely perceptible”. I will keep taking Tagrisso until resistance occurs and hopefully there will be another inhibitor to take its place. When I was first diagnosed, I would literally wake up in the night in a panic. I couldn’t sleep, eat or function normally. I started browsing the internet for support groups and pages as well as social media. I found the LUNGevity private patient groups on Facebook and asked to be added to every single one of them. I began telling my story and people started responding to me and sharing their stories. Strangers were sending me encouraging private messages. I saw people living and thriving with an incurable, life-shortening disease. I found hope. I started sleeping and not crying so much. Finding those support groups really made the initial journey a bit easier. Although we were strangers, we were brought together by a common bond. I’ve since been able to meet some of those people in person through the HOPE Summit and my “family” has grown by leaps and bounds. I would have never met these incredible people without lung cancer. Receiving a lung cancer diagnosis is not something any of us would have willingly signed up for, but I am thankful that I was able to find out before it spread all over my body and treatment options were expunged. I am also thankful for the perspective shift. I now know what it means to live each day with intent. The days of merely existing are over. It’s time to live and love life to the fullest because I now understand the value of each day that I am given.
LUNGevity is proud to announce that the Foundation is serving on three subcommittees of Sustainable Healthy Communities, LLC, founded by the National Minority Quality Forum. As one of two US patient advocacy organizations on the Diverse Cancer Communities Working Group (CWG), LUNGevity will bring years of expertise in supporting the lung cancer community to the Cancer Index Subcommittee, the Community and Patient Engagement Subcommittee, and the Diversity in Clinical Research Subcommittee. “We are proud to work with LUNGevity on the Cancer Working Group, given the importance of always asking for and listening to the patient point of view,” said Jeanne M. Regnante, Chair of the CWG. The overarching goal of the Working Group is to ‘spotlight existing inequities in order to identify and deliver solutions to eliminate barriers to lung cancer screening, referral to appropriate healthcare providers, access to treatment, care, support and inclusive cancer research for all.’ Members of the SHC Working Group include national leaders in pharmaceuticals, government, academia, patient advocacy organizations and life sciences. “We’re especially honored to be working with SHC and its partners on eliminating disparities in detection and treatment for cancer patients,” said Andrea Ferris, CEO of LUNGevity. “To achieve our vision of a world where no one dies of lung cancer, we continually strive to identify unreached populations and supply them with information and tools they need to improve their access to care.” Ms. Ferris will be a speaker at the 2018 NMQF Leadership Summit on Health Disparities and Spring Health Braintrust in Washington, DC this April. She and Upal Basu Roy, PhD, MPH, LUNGevity Director of Translational Research Program/Director of Patient FoRCe, will represent the Foundation on the three subcommittees and all future initiatives. Click here to read the full press release.
I first got involved with LUNGevity in early 2013. My husband had been recently diagnosed with lung cancer and I was looking to participate in a walk to raise the much needed funds for research. I chose to work with LUNGevity because I saw that they had many walk/runs throughout the country. Prior to my husband's diagnosis I didn't know much about lung cancer and like most people believed it was unlikely to ever touch my life as we both have never smoked. After his diagnosis I learned that it's the deadliest of all cancers yet the least funded. And LUNGevity is one of the very few that focuses on lung cancer specifically. I contacted LUNGevity asking if they had a walk in my area - Albany, NY. I first spoke with Diana Aldecoa, the Vice President of Breathe Deep Events, and she indicated that the closest was Syracuse and asked if I was interested in starting one. I organized the first Breathe Deep Albany that year. I believe Breathe Deep Albany has been growing steadily in terms of participation and money raised over the last four years. It's been a welcome and much needed event in our community to support those bravely dealing with this disease. It's been a way for survivors to support each other and spread the word about lung cancer. It's a place for those who have lost someone to remember them and raise money in their memory to help those living with the disease and hopefully to find a cure so others don't have to go through what their loved one had to endure. I know Breathe Deep Albany is very much appreciated and supported by NYOH (New York Oncology Hematology). My husband's oncologist has been a lung cancer specialist for many years in this area and has said that this event has been needed in the community. I'm proud that we've built this event up year by year. The first year we raised $15,000, second year $22,000, third year $25,000 and this past year nearly $43,000. That's over $100,000 raised in our little community. I'm always very proud on event day when everything comes together. The program we hold before the walk is inspiring. We hear from brave survivors who are willing to tell their stories and the remarkable doctors in the area telling us all the new developments on the horizon. I hope our fundraising efforts raise enough money to find a cure or at least the next line of defense in terms of meds. I'd also like to see a test developed to detect lung cancer earlier for everyone so that it becomes routine like mammograms.
Learning the true meaning of “the bench, the bedside, and the community” Print this page Posted on May 20, 2015 - 10:16am Upal Basu Roy My first HOPE Summit: Learning the true meaning of “the bench, the bedside, and the community” I am a new recruit to LUNGevity, and the May HOPE Summit, a two-day celebration of lung cancer survivorship, advocacy, and research, in Arlington, VA, was my initiation into both LUNGevity and the lung cancer community. I was very excited to meet the different stakeholders in the race against lung cancer, as well as to gain a strong understanding of the complementary roles of the “bench, the bedside, and the community.” Let me explain. Two weeks ago, I was a research scientist, studying cancer at a leading medical center in New York. My focus was solely on the “bench.” But the cutting-edge scientific research on the malfunctioning genes and proteins that cause cancer is just a part of the picture. What is missing are the other two pillars of cancer care—the “bedside,” where laboratory findings are translated to clinical practice, and the “community,” where cancer patients have access to the latest advances in treatment. As the new Director of Science Communications and Programs at LUNGevity, I want to help connect the three pillars, something that I couldn’t do working in a laboratory. I could not have been in a better place than the HOPE Summit to see this connection in action. I thought of the bench when Dr. J.T. Poirier of Memorial Sloan Kettering Cancer Center explained how human genome sequencing technology is helping match targeted therapy to the right lung cancer patient. I was reminded of the importance of the bedside when Dr. Raja Flores from the Mount Sinai School of Medicine discussed how video-assisted thoracoscopic surgery (VATS) has revolutionized lung cancer treatment. But what resonated with me the most was the community, the amazing group of survivors who provided a voice for all lung cancer patients, reminding us why we do what we do. When a ten-year survivor talked about how she was one of the first patients to be treated with crizotinib (Xalkori®), I learned the true meaning of connecting the three pillars—how a drug developed at the bench and brought to the bedside can help the patient community. It was a humbling experience to be seated with lung cancer survivors who shared their stories of Heroism, Optimism, Passion, and Empowerment. The HOPE Summit gave me the complete picture of cancer care, and was nothing less than inspirational. http://www.lungevity.org/support-survivorship/get-connected/blog/learning-true-meaning-of-%E2%80%9C-bench-bedside-and-community%E2%80%9D