Hope With Answers: Living With Lung Cancer

Academic Mentors, Peers, and Friendtors Make the Difference

Our guests talk about how peers, friend-tors, and academic mentors can help you see potential in yourself that you may not have known. All this support is especially important to the success of minority and ethnic researchers who are looking to focus on a lung cancer specialty.
“Mentors are those guiding lights that help us to progress to the next stage and to see paths where we may not have seen them before.” - Dr. Jarushka Naidoo
Guests
Dr. Jarushka Naidoo, a consultant medical oncologist at Beaumont Hospital in Dublin, Ireland who focuses on immunotherapy and is an LCFA Young Investigator Grant recipient
Dr. David Tom Cooke, a cardiothoracic surgeon at the University of California Davis Health System specializing in cancer surgery
Dr. Christian Rolfo, a thoracic oncologist who is associate director for clinical research in the Center for Thoracic Oncology/Tisch Cancer Institute, Mount Sinai, New York.
Show Notes | Transcription
Academic Mentors Help Make the Connections
Academic mentors are necessary for advancing a researcher’s career and accessing lung cancer research funding. There are a variety of approaches to mentoring and different mentors may bring different skills.
A mentor can mean different things at different stages in your career. A mentor fundamentally means a teacher. Like teachers, a researcher needs a different type of teaching at different times in their careers.
One of the things that is important about mentors is to realize that not all mentors are going to teach a researcher the same lessons, but the mentee will carry those lessons through their career. Some of the different kinds of mentors are:
peer mentors – at your stage or a little bit senior to you who might teach you how to get things done
friendtors – people who are at your stage and understand what you might need day-to-day.
classic academic mentors – a senior mentor who has a bird’s eye view of careers and how they can guide your career forward
The Importance of Finding Academic Mentors
“...it's important to establish a mentor, someone who introduces you to the scientific method from an early age, and guides you through a proper development pathway to understanding investigated research.” - Dr. David Tom Cooke
You can take skills from mentors from different areas covering your needs, and giving you expertise in different fields. A good academic mentor can instill a genuine love for the specialty. They can help to navigate the interplay between understanding the different specialties that contribute to the world of oncology, and the true commitment to lifelong learning.
How Lung Cancer Research Can Benefit From An Increase In Investigators From Minority And Ethnic Communities
Researchers who bring a culturally sensitive perspective to lung cancer, can make a huge difference in research and in the communities they represent.
As an underrepresented medicine physician, Dr. Cook understands in a culturally competent way, the mistrust of the healthcare system from the black and African American community. He can just sit down and talk with patients with that understanding. He can help to allay their fear of a clinical trial. In addition, Dr. Cook can help the healthcare institution understand how best to support these patients to promote them enrolling into clinical trials.
Currently there is even more attention on the ability of a clinical study to attract and enroll under- engaged communities for a given research question. The grant applications are evaluated on how this research will reach out to underserved communities or underserved populations. Such as will women be enrolled in this trial? So, that is key to addressing questions about disparate populations and equal opportunities for participation. Thus a grant application will be evaluated based on these rules.
Academic Mentors Help Navigate The Equity Space For Young Physicians
Of course, many aspiring doctors do not attend the top rated University Medical School Programs, many of which are Ivy League schools. Many of the students who attend medical school programs at smaller schools may face unique challenges in their attempts to specialize in lung cancer research. And, the challenges are even greater for students from underrepresented minority groups.
However, there is a misperception that investigative science and research only occurs at the Ivy League level. That misperception is not amongst researchers throughout this country and others, but mainly in the lay population. Looking at all National Cancer Institute Comprehensive Designated Cancer Centers, there are over 40 research universities. The majority of these facilities do not reside within the Ivy League environment.
Look at the hundreds and hundreds of millions of dollars of research funds that goes into funding research, both in the public and private sector. The vast majority goes into other institutions, that include UC Davis Health and Johns Hopkins Medical Center. The key here is, if you are an individual, especially a person from an underrepresented medicine background, it's important to establish an academic mentor. Especially important, finding someone who introduces you to the scientific method from an early age. Then guides you through a proper development pathway to understanding investigated research.
Academic Mentors and Research Funding
There are also underutilized funding resources. Typically, resources may be underutilized because many people aren't aware of them.
​​Dr. Christian Rolfo stresses that it’s very important that mentees to be very proactive. “Because if you are sitting there, even if you are coming from a big institution you are sitting there and you don't take the opportunities, nobody will knock your door.”
Dr. Cooke believes the key is cross demographic mentorship. An academic mentor doesn't have to look like you or come from the same background, or even quite frankly be in the same political persuasion. But they have to have faith in your abilities, and their only goal in mentoring you, is seeing your success.
For example Dr. Cooke cited one of his earliest academic mentors, Dr. Marion Katchlin. “She was older, I was younger, she was wealthy, I was not. She was a smoker, I wasn't. But we both loved immunology. And she took a specific interest in my career, and she taught me that I shouldn't limit myself in any way, and I should strive for the best in any opportunity I want to strive for.”
Resources
How an LCFA/IASLC Grant Benefits Lung Cancer Research
LCFA Research Grants
How to find funding for lung cancer research

Disparities in Lung Cancer Clinical Trials: Moving toward Equity and Inclusion

In this Hope With Answers podcast, hear from doctors in the field and researchers on the front lines discuss the disparities in lung cancer clinical trials. Disparities in access to healthcare opportunities occur when there is an absence of health equity. These health differences are closely linked with social, economic, and/or environmental disadvantage.
Listen to these lung cancer experts address disparity in all aspects. This includes eligibility, referral programs, healthcare access, and appropriate follow-up for lung cancer screening. They propose strategies to address each of these areas so that we can bridge this disparity, equity and inclusion gap.
Missing Out on Treatments: Disparities in Lung Cancer Clinical Trials
Advances in lung cancer treatments over the last few years have made it possible to live with lung cancer for years after diagnosis. But minority and ethnic populations represent less than 5% of those getting the latest treatments in clinical trials.
Guests
Dr. Raymond Osarogiagbon of Baptist Cancer Center in Memphis, Tennessee
Vincent K. Lam, M.D., an Assistant Professor of Oncology at Johns Hopkins, is a clinical/translational investigator with a special interest in lung cancer and an LCFA Young Investigator grantee.
Dr. Triparna Sen, is an Assistant Attending, Department of Medicine, Memorial Sloan Kettering Cancer Center; Assistant Professor, Weil Cornell School of Medicine and an LCFA Young Investigator grantee
Show Notes | Transcription
Patients have the power to make a difference in health disparities in lung cancer clinical trials by:
educating themselves on the steps to take
asking their doctors questions
looking for information on websites like lcfamerica.org or social media oncogene groups.

Understanding Gut Microbiome in Lung Cancer Treatment

What if your lung cancer doctor could get a huge amount of information about your health, how you might respond to different treatments, and possibly even be able to tell you the best diet for your specific needs, all based on a simple test that involves no needles, no surgery, no special preparation, just a small sample… of your stool. That’s the potential of studying the gut microbiome. Find out why some of LCFA’s Young Investigators are so excited about including the gut microbiome in the fight against lung cancer.
Guests
Dr. Jarushka NaidooDr. Daniel SpakowiczDr. Zoltan Loinai
Dr. David Carbone, The Ohio State University
Show Notes | Transcription
Getting over the ick factor: Talking about poop
The immune effect of the microbiome on lung cancer may be due to specific compositions of both lung and gut microbiomes. Three of LCFA’s Young Investigator grant recipients are continuing this study of gut microbiome and lung cancer, Dr. Jarushka Naidoo, Dr. Daniel Spakowicz, and Dr. Zoltan Lohinai.
The Future is Gut Microbiomes, Icky As it May Be
Discovering whether a patient’s gut health plays a role in determining the benefits – or, conversely, the harm – of immunotherapy treatment. Until now, there has been scant research connecting gut health with both cancer diagnoses and treatment protocols.
The LCFA Young Investigator Grants are designed to help researchers look at lung cancer in new and creative ways, always with an eye toward finding better treatments that help people live longer and healthier lives.Familiarizing the practicing clinician with the experimental methods used to generate the information that will likely impact the field of lung cancer, helping to understand gut microbiome in lung cancer treatment.
As Dr. Daniel Spakowicz says, “in general, collecting somebody’s poop before they start a treatment is not a commonly done practice right now, and it tends to be sort of icky to some people. And that’s the essence of what we want to change.”

Men living with lung cancer: Finding Their Voice While They Tackle the Taboo

It's no secret that lung cancer affects a patient's entire community: family, friends, co-workers and more. Learning to live with lung cancer is its own challenge, especially for men. Hear from three guys who found their own patient voice, and help others find theirs, as they tackle living with lung cancer in unique and powerful ways.
Guests:
AJ Patel, James Hiter, and Frank McKenna
Show Notes | Transcription
Accepting the Challenges As Men Living with Lung Cancer
AJ Patel, James Hiter, and Frank McKenna have been living with lung cancer for a number of years. Thanks to research and new treatments, they have the experience and commitment to help others facing the same shocking diagnosis. However, they each have unique journeys and different approaches mentally.
AJ, James, and Frank are part of LCFA’s Speakers Bureau. They are using their voice to get the word out there for more lung cancer research. They have shared their story on the LCFA’s website, participated in fundraising events and appeared on some of the podcasts to let people know that there are other guys out here that are willing to help other men living with lung cancer.

Los Primeros Siete Días - ¿Hablas cáncer? Aprender un nuevo vocabulario sobre el cáncer de pulmón

Un diagnóstico de cáncer de pulmón casi requiere aprender un nuevo idioma. En este episodio, usted empezará a escuchar términos como biomarcadores, inmunoterapia y oncólogo torácico. Primero escuche al médico Dr. Christian Rolfo que es experto en el cáncer del pulmón, sobre cómo un paciente puede empezar a desarrollar conceptos y vocabulario muy diferente.
Después, escucharás el testimonio de personas que han estado exactamente dónde usted está ahora y como aprender “hablar cáncer.”
 
Guests
Dr. Christian Rolfo - Dr. Christian Rolfo es Oncólogo Torácico y experto en oncología molecular, biopsias líquidas y desarrollo de nuevos fármacos en el ámbito de cáncer de pulmón y mesotelioma en el centro de Oncología Torácica de Mount Sinai.
Yovana Portillo, Sobreviviente de Cancer de Pulmon, LCFA Mesa de Oradores
Juanita Segura, Sobreviviente de Cancer de Pulmon, LCFA Mesa de Oradores
 
Recursos
Los primeros 7 pasos que debe seguir después de un diagnóstico de cáncer de pulmón
 
Notas del Programa | Transcripción
 
La misión de LCFA es mejorar la supervivencia de los pacientes con cáncer de pulmón mediante la financiación de la ciencia transformadora. Mientras recauda fondos para apoyar la investigación del cáncer de pulmón, LCFA aumentará la conciencia del público y servirá como un recurso para los pacientes o cualquier persona que busque respuestas, esperanza y acceso a información actualizada sobre tratamientos, investigaciones científicas y ensayos clínicos.  
Usted también puede unirse a la conversación con LCFA en Facebook, Twitter, e Instagram. 
 

Los Primeros Siete Días - Cómo obtener el diagnóstico correcto

Este programa está diseñado para ayudarles a responder algunas de las preguntas más importantes que surgen inmediatamente después de un diagnóstico. Escucharás el testimonio de personas que han estado exactamente dónde usted está ahora y están viviendo y disfrutando la vida aun con cáncer de pulmón. Ellos serán sus guías a lo largo de la primera parte de su viaje contra el cáncer que estamos llamando Los Primeros Siete Días.
Guests
Dr. Christian Rolfo - Dr. Christian Rolfo es Oncólogo Torácico y experto en oncología molecular, biopsias líquidas y desarrollo de nuevos fármacos en el ámbito de cáncer de pulmón y mesotelioma en el centro de Oncología Torácica de Mount Sinai.
Yovana Portillo, Sobreviviente de Cancer de Pulmon, LCFA Mesa de Oradores
Juanita Segura, Sobreviviente de Cancer de Pulmon, LCFA Mesa de Oradores
Recursos
Los primeros 7 pasos que debe seguir después de un diagnóstico de cáncer de pulmón
 
Notas del Programa | Transcripción
 
La misión de LCFA es mejorar la supervivencia de los pacientes con cáncer de pulmón mediante la financiación de la ciencia transformadora. Mientras recauda fondos para apoyar la investigación del cáncer de pulmón, LCFA aumentará la conciencia del público y servirá como un recurso para los pacientes o cualquier persona que busque respuestas, esperanza y acceso a información actualizada sobre tratamientos, investigaciones científicas y ensayos clínicos.  
Usted también puede unirse a la conversación con LCFA en Facebook, Twitter, e Instagram. 
 

Who Says Men Can Only Talk Sports?

If you had to guess what a personal trainer, a die-hard runner, and a healthful vegetarian have in common, you would probably never guess "lung cancer." But far more than their diagnosis, these three guys are connected by the strength they find in their families, the openness and vulnerability they share in talking about their diagnosis, and the focus they put on reaching other men who, like them, are also learning how to live with lung cancer. 
Guests:
Speakers Bureau members James Hiter, Frank McKenna, and AJ Patel
Jim Baranski, Executive Director 
Show Notes | Transcription
Sharing Their Lung Cancer Diagnosis
Guys DO want and need to share their feelings about the challenges of living with lung cancer. Listen to these poignant stories of James Hiter, Frank McKenna, and AJ Patel. These guys, living with lung cancer, are first and foremost, husbands and fathers. They talk about the strength they draw from the most fundamental relationships in their lives. They talked about sharing their lung cancer diagnosis with their kids—and how those relationships helped change their perception of being diagnosed with lung cancer.
AJ Patel talks about how communicating honestly about these issues with his kids helps them work through their own feelings about his diagnosis.
Appreciating Their Support Network
A lung cancer diagnosis is a stressful experience in a person's life. The support of family and friends is incredibly helpful and appreciated by these men, even if they were reluctant at first.
Frank shares how the actions of his sons were just so inspiring to him.  “To know that I had that effect on them, that they wanted to give back to me and, and, you know, make their dreams and wishes come true with the little time that we had.” 
Since AJ’s diagnosis, he is now more open to family members and others talking to them and sharing his emotions and feelings. This openness was something new - he was reserved and never really talked about his health because he thought he was supposed to be the head of the household. “What am I going to do? Being vulnerable? But now I realize that vulnerability leads to discussions and dialogues, and it's not necessarily always an outcome that we're, well, now we feel better.”
AJ has stepped up to connect as a “buddy” to other men facing a lung cancer diagnosis. 
“I would just encourage if anybody's listening to this and you've been recently diagnosed, you know, somebody has been recently diagnosed, set aside, whatever preconceived ideas you have about talking to people that you don't know about this, and just know it can be really beneficial just to have a second set of ears.”
Men Also Advocate for Lung Cancer Research
Another thing that all three men have in common is the knowledge that the latest lung cancer research has been vital to their survival of this disease. Knowing that there is much more work to be done, they have chosen different ways to advocate for lung cancer research. Besides being part of the LCFA’s Speakers Bureau, each of them found a way to give back even while managing their own cancer journey.
“And it's, it's so important for guys to know that there were other guys in here, you know, like the three of us who work with the speaker's bureau in order to get that word out there. And do the events that we do - appear on some of the podcasts and on the websites, and some of the things we do to let people know that there were other guys out here that are willing to help, they're willing to, you know, either lead by example or give advice, or, you know, just kind of say, it's okay to talk to someone who knows what you're going through or has been through it.” - Frank McKenna
James also shares an important message:
“My hope is that you will be inspired to spread the word. It’s time for this disease to be funded and treated like all other types of cancer. It's time for the world to know that if you have lungs, you can get lung cancer- smoker, non-smoker or never-smoker.” 

Finding Your Lung Cancer Team: Tips from Patient Advocates

Living with lung cancer is never easy, but finding your lung cancer team with other patient advocates can help newly-diagnosed patients harness the power of their own voice in treatment. Hear from LCFA's group of patient advocates about how they got connected through patient groups that helped them learn how to navigate the lung cancer journey. You'll also hear from lung cancer specialist Dr. Raymond Osarogiagbon of Baptist Cancer Center in Memphis, who shares his hopes for the future of lung cancer treatment.
Guests:
Dr. Raymond Osarogiagbon of Baptist Cancer Center in Memphis, Tennessee
LCFA Speakers Bureau members Terri Conneran, Linnea Olson, Ivy Elkins, Yovana Portillo, AJ Patel, Montessa Lee, Gina Hollenbeck, and Frank McKenna
Show Notes | Transcription
 
Patients Voices Can Change the Shape of Research
In lung cancer research, the patient’s voice matters. Patient advocacy can shape research and can impart to the research community the sense of urgency patients deal with every day.
“Patients may not realize just how powerful their voice can be in their own lung cancer treatment plan or in helping others through their journey.” - Kim Norris
There has been a real change in lung cancer research that's just happened over the last 10 years or so. When Kim Norris, LCFA’s co-founder and President, first got into lung cancer patient advocacy years ago, the treatments available and the survival rates were not encouraging. Now, there's so many reasons for newly diagnosed patients to be hopeful.
Although 5, 10, even 15 years doesn't sound like a long time, in lung cancer research, it's an eternity. More new treatments have been approved in the past five years than have been approved in the last 20 combined. And new discoveries are continually happening at such a rapid pace that is sometimes hard to keep up with them all.
Thoracic oncologist Dr. Raymond Osarogiagbon is encouraged by the power of the patient's voice to explain what it means to be living with lung cancer.
“We are making a lot of progress in lung cancer, and that is true. And that progress has come very quickly. It seems like literally every few weeks, every few months, there's a new groundbreaking discovery.”
LCFA’s Speakers Bureau Discuss Finding Their Team
At this year’s annual get-together (held virtually) the LCFA’s Speakers Bureau talked about the power of finding lung cancer patients who share the same experience, and sometimes even the same biomarker.
This shared experience often helps newly diagnosed patients find their own voice to advocate for the best treatment plan. As more people are living longer, healthier lives with lung cancer, many find meaning in advocating for others, helping newly diagnosed patients know the right test to get, and the right questions to ask to be part of their own treatment plans.
How Patients and Their Teams Use Their Voices
Some turn their advocacy into activism, lobbying for increased lung cancer funding, and raising awareness of lung cancer as the number one cancer killer. Terri Conneran is very actively using her voice by serving on lung cancer advocacy boards, working on events, supporting various foundations, and maintaining a voice for lung cancer patients online.
“Those of us in the lung cancer community are living with this silent disease growing within us and we need to give it a voice. If I can help one person, my goal is met.” - Terri Conneran
Ivy Elkins has completed Advocate Training through the American Association of Cancer Research. She then created and moderates two Facebook groups – close to 500 members strong – where they share information regarding clinical trials and treatments. Their primary goal is to work as a group to get the attention of lung cancer researchers.
However, simply finding a support group is an excellent first step.
The Importance of Finding Your Lung Cancer Team
Members of the LCFA Speakers Bureau share what it means to be living with lung cancer. Some advocates use their anger, frustration, and sadness as motivation for their advocacy. Frank McKenna thinks it's important that lung cancer patients stay involved in things like helping other people.
“Even if we don't personally reach out and need that help, I think so many people rely on our experiences and they reach out to us. It's just, I think it's been very rewarding to me when somebody says you've been a godsend because you've given me this information, I can't get it anywhere else.”
Voicing the Pros and Cons of Using “Dr. Google”
Kim Norris agrees that finding and connecting with other lung cancer patients is much easier today. Patient groups can help them find the right questions to ask and the right test to have done.
“Thanks, of course, to a quick Google search. But it helps to know what you’re searching for. Searches like lung cancer survivor stories or KRAS patient groups will generally lead to useful and actionable information that can help patients connect to others going through the same experience, as advocate Terri Conneran learned.”
Terri Conneran’s doctor told her to stay off of Google because she's going to see nothing but bad news. Connecting with a local lung cancer group, she learned more about individual biomarkers like EGFR and ALK. This knowledge led to her questioning her doctor regarding biomarkers and the discovery that her cancer has the KRAS biomarker.
Speaker Ivy Elkins did a Google search, even though her doctor warned her against that. But she looked for blogs and other people experiencing similar life situations. Yovana Portilla also did a Google search looking for “lung cancer support group” to find other people that have been through this before me for advice along her lung cancer journey.
Other Ways To Advocate for Lung Cancer Research
Not all lung cancer patients can devote unlimited time to reading journal articles, understanding clinical trial design, and communicating effectively with scientists and physicians. However, there are some effective ways to advocate right from your home.
Build a network of support with family members, friends, community members, and fellow advocates living with lung cancer. Find an online community. There are more specific communities advocating for specific lung cancer biomarkers.
These are some of the biomarker communities our Speakers Bureau participate in:
EGFR Resisters
ALK Fusion Facebook Group
ALK Positive
The ROS1ders
KRASkickers
There has never been a more important time for the U.S. to invest in medical research. Thanks to bipartisan support in Congress, the National Institutes of Health (NIH) has received significant funding increases for the last six years.
Monitor important legislation for lung cancer research. On the National Cancer Institute website there are summaries of legislation proposed affecting federal health policy. This page is updated as relevant legislation is introduced.
Then contact your Congressional representatives. Ask them to make sustained funding for lung cancer research a national priority starting with funding important lung cancer research policies currently up for legislative approval.
Watch lung cancer patient and advocate Gina Hollenbeck discuss the importance of turning up the volume of the patient’s voice.
Other Legislative Resources
NIH Office of Legislative Policy and Analysis (OLPA) - this office is the liaison between NIH and Congress
National Conference of State Legislatures - Cancer-Specific State Legislation - where you can find information on cancer-specific state legislation
National Conference of State Legislatures - Health-Related State Legislation - where you can find information on health-related state legislation
Kaiser Family Foundation - this foundation provides state-specific information related to cancer and health
Finding your lung cancer team can be your key to
Getting the best information on your specific lung cancer and the best treatment options
Connecting with a support group of people who know EXACTLY what you’re going through
Making the lung cancer journey of someone coming behind you easier

Lung Cancer DIagnosis and Annabelle Gurwitch: When Lung Cancer Goes Citrus

It’s Not Covid? It’s Lung Cancer?
A lung cancer diagnosis was the shocker to the year Annabelle Gurwitch already had going in 2020. She went to have a Covid test and left with a lung cancer diagnosis. She’s an actress, activist, and author of five books including I See You Made an Effort. In 2020, she’d written a new book and started as a co-host on a podcast called Tiny Victories. Now she is sharing her lung cancer diagnosis story - as only Annabelle would, with humor.
View Show Notes | Transcription
When Lung Cancer Goes Citrus
 
When she went to have a cough checked out last year thinking it might be Covid, she came away with the shocking diagnosis of stage IV lung cancer. She is grateful for lung cancer research funding and how she's now using her voice - and relentless sense of humor - as a lung cancer patient advocate.
“And then, once they said they found something, there's a tumor, the size of a Clementine. Well, you know, when something goes citrus, you're in trouble.”
A biopsy and a diagnosis of stage IV cancer. was more shocking to Annabelle because other than her little cough, she exercised every day and felt like she was in really good health.
Non-smokers Get Diagnosed With Lung Cancer?
 
“What I didn't realize when I was diagnosed, because it had not been on my radar at all, was this growing epidemic of lung cancer in nonsmoking women.”
A 2017 study of 12,103 lung cancer patients in three representative U.S. hospitals found that never-smokers were 8% of the total from 1990 to 1995 but 14.9% from 2011 to 2013. The authors concluded that “the actual incidence of lung cancer in never smokers is increasing.” Another study that same year, of 2,170 patients in the U.K., found an even larger increase: The proportion of lung cancer patients who were never-smokers rose from 13% in 2008 to 28% in 2014. It is well-documented that approximately 20% of lung cancer cases that occur in women in the U.S. and 9% of cases in men, are diagnosed in never-smokers. Cigarette smoking is still the single greatest cause of lung cancer. And today’s screening recommendations apply only to current and former smokers. Yet according to a study published in December 2020 in JAMA Oncology,12% of U.S. lung cancer patients are never-smokers.
Targeted Treatment for EGFR Mutation in Lung Cancer
 
Annabelle recognizes that lung cancer research is a key reason her lung cancer diagnosis came with hope.
“... because I get to have the life I'm having right now because of the drugs that were developed in the last five years. I happen to have the EGFR Mutation, which responds to a medication that allows me to continue a pretty normal life, except for the extra napping.”
Advocating for Lung Cancer Research
 
“I have some cells that went rogue, and that's how I think about it. One of the hardest times in my life was the three months where I didn't know what I was facing. I have to say there was, at least some relief as weird as that sounds in the diagnosis.”
Annabelle’s story of an accidental lung cancer diagnosis is a very common story among lung cancer patients. In Annabelle’s case, getting an accurate diagnosis set her on a treatment course that is manageable as well as saving her life. Now Annabelle is in a position to “pay it forward” by reaching out to others who may benefit from hearing her story.
“These drugs will stop working in a certain amount of time and whether I survive and how I survive, what kind of quality of living I have is entirely dependent on lung cancer research funding.”
Annabelle is determined as a writer and a storyteller, to share her story, her lung cancer diagnosis, and how she’s living with it and the incredible tight rope she’s now walking. In becoming an advocate for lung cancer research, a story about a lung cancer diagnosis and Annabelle Gurwitch sets the stage for the next chapter in her life.

NEW Lung Cancer Screening Recommendations: What does that mean?

The U.S. Preventive Services Task Force has recently changed the guidelines for lung cancer screening. Listen to two experts who helped establish the first set of screening guidelines. Then hear from a patient advocate living with lung cancer on how the change in screening is a step in the right direction.
Guests:
Dr. Denise Aberle, LCFA Scientific Advisory Board member
David Sturges, LCFA Co-founder and lung cancer survivor
Terri Conneran, LCFA Speaker Bureau member
 
Show Notes | Transcription
 
Establishing the first set of NLST guidelines
The first NCI-sponsored National Lung Screening Trial (NLST) was a trial to compare two ways of lung cancer screening: low dose helical CT versus chest radiography. The NLST was the joint collaboration of ACRIN and the Lung Screening Study.
Dr. Denise Aberle served as the national Principal Investigator of the American College of Radiology Imaging Network (ACRIN-NLST) component of the National Lung Screening Trial. Dr. Aberle’s research also centers on lung cancer and oncologic imaging for response assessment; quantitative image analysis, and oncology informatics.
LCFA’s co-founder, David Sturges served on the United States Department of Defense’s Congressionally Directed Medical Research Programs’ Integration Panel. He was the sole patient advocate at the table for the groundbreaking National Lung Screening Trial’s Data and Safety Monitoring Board (DSMB).
These new lung cancer screening guidelines have two significant changes to the previous criteria in place regarding who qualifies for annually testing:
Lowered the age from 55 to 50 so now the Age Range criteria is now Ages 50 - 77.
Changed the pack years smoking calculation from using 30 pack years of smoking to using 20 pack years of smoking.
Although these improved guidelines may lead to more smokers getting tested for lung cancer earlier, there are many factors that might put you at risk for lung cancer. Many people believe that smoking alone causes lung cancer.
But, increasingly, people who have never smoked or who quit smoking many years ago are being diagnosed with lung cancer. Hear from Terri Conneran, member of LCFA’s Speakers Bureau, tell her diagnosis story as one who didn’t meet these criteria. Learn more about her road to her specific diagnosis, which did not follow a direct route.
Why is the change in screening guidelines important?
Besides the statistic that more than half of new lung cancer patients have never smoked or quit more than 15 years ago are not included in the original CT screening recommendations:
These revisions will reduce both racial and sex disparities to enable screening in a higher risk groups and additional percentage of the population who we know are going to get lung cancer.
They will provide greater benefits in reducing lung cancer mortality across the United States.
When detected early, lung cancer patients have more treatment options and a far greater chance of survival. The 5-year survival rate for those diagnosed before the cancer has spread rises from 18 out of every 100 people to 55 out of every 100. But, the key is being screened for lung cancer early.
“The trial lasted from 2002 when we launched to about 2010, and was able over time to identify that low dose CT screening did in fact reduce deaths from lung cancer because of early detection. The name of the game is early detection because that's when the cancer can be treated and is most likely to be curable, meaning to result in long-term survival. And that's exactly what we saw.”  - Dr. Denise Aberle
And, even with the new lung cancer screening guidelines, there still is an emphasis on screening people who are either current or former smokers. These guidelines still won’t catch many of the lung cancers in never smoking patients who have a genetic alteration driving their cancer.
“While we were talking about smoking and pack-years and all of that, it's true that if you have lungs, you can get lung cancer, right? I mean, you just have to be on top of your health as much as you possibly can. Every breath counts, for sure.”
LCFA is a nonprofit dedicated to improving the survivorship of lung cancer patients by funding lung cancer research. Visit lcfamerica.org.