Listen on:
Episodes
Tuesday Aug 03, 2021
Tuesday Aug 03, 2021
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.
Tuesday Aug 03, 2021
Tuesday Aug 03, 2021
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.
Wednesday Jun 16, 2021
Wednesday Jun 16, 2021
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.”
Wednesday May 19, 2021
Wednesday May 19, 2021
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
Thursday Apr 29, 2021
Thursday Apr 29, 2021
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.
Thursday Apr 01, 2021
Thursday Apr 01, 2021
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.
Thursday Mar 11, 2021
Thursday Mar 11, 2021
Learn the latest Small Cell Lung Cancer (SCLC) research. Hear from 14-year SCLC patient/advocate for the underdog, Montessa Lee, who took her anger and turned it into advocacy. Listen to lung cancer researcher Dr. Triparna Sen explain how DNA damage repair inhibitors are the “Achilles Heel” of SCLC tumors.
Guests:
Montessa Lee: educator, lung cancer patient advocate, 14-year SCLC survivor
Dr. Triparna Sen, Memorial Sloan Kettering Cancer Center, New York
Show Notes for this episode
Transcript of this episode
LCFA’s mission is the improvement in survivorship of lung cancer patients through the funding of transformative science.
While raising funds to support lung cancer research, LCFA will raise the public’s awareness and serve as a resource for patients or anyone seeking answers, hope, and access to updated treatment information, scientific investigation, and clinical trials.
You can also join the conversation with LCFA on Facebook, Twitter, and Instagram.
Thursday Feb 11, 2021
Thursday Feb 11, 2021
Living with lung cancer isn't a solitary activity. It's a daily action in concert with the support of family, friends, loved ones, and even people who seem to appear out of the blue to offer support. In this Valentine's Day episode, we explore the wonderful ways people living with lung cancer have found support and what it means to them.
Guests LCFA Speakers Bureau members Carol Brickell, Terri Conneran, Lisa Goldman, and Frank McKenna.
Episode Show Notes
LCFA is a nonprofit dedicated to improving the survivorship of lung cancer patients by funding lung cancer research. Visit lcfamerica.org.
Thursday Feb 04, 2021
Thursday Feb 04, 2021
LCFA's driving mission is to fund lung cancer research grants, the critical early-stage research that paves the way to much bigger funding for treatment breakthroughs and clinical trials. Our Young Investigators grant fund this cutting-edge research that is leading to some of the most exciting, innovative lung cancer research that will ultimately lead to saving lives and helping people living with lung cancer live longer, healthier lives. Listen in to a fascinating behind-the-scenes conversation with LCFA's founders and the head of its scientific advisory board about the importance of this funding in the fight against lung cancer.
Guests
Dr. David Carbone, The Ohio State University
Marta Kauffman, LCFA Board Member
Dr. Triparna Sen, LCFA Young Investigator
Dr. Jarushka Naidoo, LCFA Young Investigator
Dr. Alice Berger, LCFA Young Investigator
Dr. Christine Lovly, LCFA Young Investigator
Show Notes for this episode
LCFA is a nonprofit dedicated to improving the survivorship of lung cancer patients by funding lung cancer research. Visit lcfamerica.org.
Sunday Jan 17, 2021
Sunday Jan 17, 2021
Science developed COVID vaccines in record time, but now that they’re ready, will people take them? Distrust among communities of color, especially historically disadvantaged African American communities, and a lack of data on the vaccine among people living with lung cancer are proving challenging to the vaccine rollout. In this episode, we talk to an African American pulmonary surgeon who volunteered for a phase 3 coronavirus clinical trial, and African American lung cancer patient advocates about their vaccine concerns and what questions they’ll be asking their own doctors about taking a vaccine.
Guests
Dr. David Tom Cooke, UC Davis Health
Montessa Lee, living with Small Cell Lung Cancer, LCFA Speaker Bureau
Laronica Conway, #LCSM Co-Founder, LCFA Speaker Bureau
Show Notes