Every Woman (and Cancer) Deserves Equal Treatment

Pat and her daughter at the  National Lung Cancer Summit.

Pat and her daughter at the National Lung Cancer Summit.

By Pat Dunn

In November 2015 I will be a 12 year lung cancer survivor.

When I was first diagnosed in 2003, the thoracic surgeon at our local hospital sat in his office, looked at my husband and I and said, “Go home. Get your affairs in order. You have six months to live.” I was 53 years old at the time and we had just celebrated our 33rd wedding anniversary.

You may recall that back in the early 2000’s the computer was not what it is today. We were limited to searching WebMD, which offered no hope. It basically informed us that if you have lung cancer, you will die.

After discovering this realization, I went back to the oncologist’s office and asked him what we should do. He advised us to find someone who would take a chance and operate to remove the tumor.

I was lucky that both my daughter and son were living in Boston, home of some of the best hospitals in the country.  We went to the library, got out the yellow pages, copied down phone numbers and went home and started dialing anybody and everybody who sounded like they might know how to take care of lung cancer. It was not easy. There was no Lung Cancer Alliance to help. Most said if you have lung cancer you should not have smoked and yes, you are going to die soon.

Needless to say, we found a surgeon at Brigham and Women’s Hospital who took a chance on me. I had surgery and he removed my upper right lobe and lots of lymph nodes. We returned to Florida for chemo and slowly settled back into life. A little less than 2 years later, my husband passed away suddenly from a massive heart attack at the age of 56.

Fast forward to March 2014, I had my yearly mammogram. The next day radiology called and said I need to come in for a more extensive mammogram. I went in on a Wednesday and the next day received a call from the nurse navigator that I had breast cancer and needed to set up an appointment with the surgeon’s office.  Things moved along rapidly. The oncologist called to tell me what surgeon to go to. The surgeon called to coordinate appointments and check in. The navigator offered to drive me anywhere and call anyone. People from the “pink army” called me to offer help. This was all lovely, but all I had was a small lump, not a death sentence. I could not believe the offers of help. I had a lumpectomy, a summer full of radiation and life went on.

The point of my story is the difference of two cancers. Lung cancer patients are treated so differently than breast cancer. I hope someday there will be as much help for lung cancer patients as breast cancer patients. As women we deserve to be treated equally, not stigmatized.

Thank goodness for Lung Cancer Alliance, I have found so many people who care about all of us: survivors, patients and caregivers. Any help I need is just a phone call away. Thank you all.


If you need help along your lung cancer journey, please call our HelpLine at 1-800-298-2436 or email support@lungcanceralliance.org. For more information visit http://www.lungcanceralliance.org/get-help-and-support/.


Top 5 Tips for Helping Your Loved One with Lung Cancer

Tara Perloff, Manager of Support Services

Tara Perloff, Manager of Support Services

By Tara Perloff, Lung Cancer Alliance’s Manager of Support Service

When a loved one finds out they have lung cancer, it can be hard to know how best to help them, what to say or even how they are feeling. We sat down with Tara, our Manager of Support Services, to get an expert’s opinion on the matter.  Through her experience running our Phone Buddy and GUIDES programs, Tara recommends the following:

  1. Take care of yourself. There is no one-size-fits-all approach, but it is essential that you find your best support during this journey. You need to be strong and in the best health possible in order to be there for your loved one.
  2. Don’t take it personally. Understand that your loved one is coping with their disease in their own unique way and try not to take things he or she says or does personally.
  3. Respect independence. Your loved one may want to do more for him or herself to prevent burdening you. Go with it and let them as long as it doesn’t negatively impact his or her health.
  4. Don’t change your relationship. When your loved one has cancer, it doesn’t mean that they want to be treated differently or want your relationship to change. Try your best to treat them the way you did before diagnosis.
  5. Be open and direct. At the time of your loved one’s diagnosis, find out exactly what your loved wants throughout every step regarding treatment and support. This way, you will be on the same page and be able to make decisions as a team.

To find out more about being a caregiver for a loved one with lung cancer, call Tara at 1-800-298-2436 or email her tperloff@lungcanceralliance.org.

Helping Others Shine Their Light


Kristen McAvoy, Events & Volunteers Manager

By Kristen McAvoy, Lung Cancer Alliance’s Events & Volunteers Manager

When I moved to Washington, D.C. three years ago to work on Capitol Hill I wasn’t sure where I was going to land. I only knew that I wanted to affect positive change in the world, but I had no idea how I was going to do it. Then I found Lung Cancer Alliance.

My alarm goes off every morning at 7:15am giving me an hour to get ready and then start my mile and a half walk to work. Like many DC commuters, I listen to Pandora to get pumped for the day and I get to work between 8:30 and 9:00am. Once at my desk, the majority of my day is spent answering one question: “What is Shine a Light and how can I raise awareness for lung cancer in my community?”

I am proud to respond that Shine a Light on Lung Cancer is the largest coordinated awareness event for lung cancer in the United States and anyone can host or attend this great event to educate and raise awareness in their community. I then take the steps necessary to help advocates plan their Shine a Light event and reach their goals.

Three years ago, I could not have imagined that I would be managing the largest coordinated awareness event for any issue area, but I am honored to raise awareness for a disease that really needs my attention. I have managed the program since 2014 and I am thrilled to say that 172 events were hosted nationwide last year, a 20% increase from 2013.

I feel so lucky to spend my days helping lung cancer survivors, their families and friends change outcomes for a disease by hosting fundraising and awareness events. The enthusiasm and dedication that these advocates have inspire me to push on. We are aiming for 300 Shine a Light events nationwide this year, which would be the largest, widest reaching event yet!

At 5:00pm I turn my computer off, excited about the people I will meet tomorrow, the innovative ideas they will bring to the table and how, together, we will affect positive change in the world.

To learn more about Shine a Light on Lung Cancer and to find one in your community, click here!

If you are interested in hosting a Shine a Light event please contact Kristen McAvoy at KMcavoy@lungcanceralliance.org.

World Conference on Lung Cancer: What to Know

16th World Conference on Lung Cancer hosted by the International Association of the Study of Lung Cancer

16th World Conference on Lung Cancer hosted by the International Association of the Study of Lung Cancer

By Jennifer King, Director of Science and Research for Lung Cancer Alliance

While most people were at the pool over Labor Day weekend, there was a huge gathering of lung cancer specialists in Denver at the 16th World Conference on Lung Cancer hosted by the International Association of the Study of Lung Cancer (IASLC).  Five members of the LCA staff attended on various days and were able to have a bunch of great meetings with our partners, connect with lung cancer survivors/advocates and hear a lot of science about the study of lung cancer.   Besides missing pool time (and my kids’ first day of school), the worst thing about the meeting was that there were often 14 scientific sessions about lung cancer running at one time and it was impossible to see everything live.  Despite that, here’s a few highlights from this year’s meeting:

  • Early Detection – Lung cancer screening is here to stay and there is a lot of work being done to understand who should be screened by low-dose CT and when as well as what to do with “indeterminate nodules” where CT screens identify something, but it’s not clear if it is cancerous and should be biopsied. There was an emphasis on better risk modeling using known risk factors.  There were also a series of talks on new technologies investigating whether testing blood, sputum or even just your breath could help determine who should receive a CT scan or whether a patient with one of these nodules really needs a biopsy. This technology is not ready for the clinic yet, but it’s on the horizon and there is currently a lot of research being done in this area.
  • Immunotherapy – This continues to be a hot topic with patients and physicians as researchers learn more about using immunotherapies for lung cancer. There was an update on Opdivo, showing that the patients with squamous cell carcinoma who respond well (~25%) are continuing to respond out to 2 years and are still being followed.  There’s still some controversy about whether there is a useful “biomarker” to predict whether you are likely to respond to this class of drugs.  There was also data showing that combining two different types of immunotherapies may result in higher response rates than taking just a single drug. Of note, this was done in the first-line, before chemotherapy, and there is a lot of interest in studying the drugs in this way.
  • The Changing Face of Lung Cancer – Two different studies at the meeting, one from the UK and one from the US, showed that the incidence of never-smoking non-small cell lung cancer is increasing. These never-smokers tended to be younger and female.  A different study specifically on lung cancer under the age of 40 showed that these cancers tend to have higher levels of genetic changes in genes such as EGFR and ALK.  Taken together, it’s even more clear that lung cancer is not just a smoking-related disease and there needs to be more public education and increased awareness about who is affected. This group also doesn’t fit the current high-risk screening guidelines so research is also needed on how to bring early detection to this population.

And there was so much more including interesting (VERY early) data on a potential new small cell drug that would have a predictive biomarker, an excellent talk on why you should still quit smoking even if you have been diagnosed and entire sessions on supportive care and patient advocacy.  It was a fantastic event and it was worth the Labor Day travel – although I’m not sure my husband agreed.

Click here to listen to Jennifer’s interview with ASCO Post at World Lung.

Life After Lung Cancer

Niall practicing Taekwondo

Niall practicing Taekwondo

By Niall Reynolds, Ireland

It was 2007, I was 41 years old and training for my black belt in Taekwondo when I found out I had lung cancer. After spending weeks trying to get rid of a cough, I went to my doctor. A few weeks later I had a chest x-ray followed by a CT scan which confirmed I had lung cancer, a disease I could never have imagined dealing with, especially at my age. Treatment began quickly with a lower lobectomy on my right lung followed by four months of chemotherapy.

I was determined to continue to live my life, even throughout treatment. The way I did this was not to plan for anything beyond three months. We took vacations, but only booked them a month or two in advance. As time went on, I could extend that time to six months and then a year. I love to travel and since my diagnosis have been to most places I’ve wanted to see, such as Hawaii, the Grand Canyon, Paris and London.

I frequently used the Lung Cancer Alliance website and community for information and support throughout my journey. It was a massive help! After my operation and chemotherapy, I felt like I was sent home to deal with what had been left (e.g. chest pain, drug side effects, etc.). The website offered me the reassurance and information I needed, while the lung cancer community provided me with a platform of support and hope.

Although we never met each other in person (some people being an ocean away from my home in Ireland), I felt a bond with the lung cancer survivors I connected with online. There was a sense that we were all going through this together, on different scales with good and bad outlooks, but all supporting each other through it. One lady told me her goal was to see Ireland before she died, which she did. She loved it and loved the music. I sent her a CD of Irish music, which she loved and played many times before she died.

My advice to those newly diagnosed is to take it one day at a time, until you can take it one week at a time, and so on. Be good to yourself and do what makes you happy. Make time for family and try not to get bogged down by too much “cancer talk.” Make a point to live with awareness, noticing and loving every moment, rather than getting caught up in the “rat race.” Try not to hold grudges or get bothered by silly annoyances; it is a waste of precious time. If you received help, let those people know how much you appreciate that help.

Be sure to thank and have patience with your caregiver(s). Whether that person is your spouse, partner, family member or friend, they hate that you are sick and some would rather take the illness from you than see you suffer. They are the true heroes in my book.

Finally, give back if you can; sharing your experience can make a world of a difference for someone newly diagnosed. It is likely you will benefit just as much as the people you help.

Since my operation I have gone on to get my second and third black belts in Taekwondo, started my own Taekwondo school with a few other friends and completed numerous cycling tours for a local cancer charity which I have now joined the board.  I also teach self-defence to women once a week. There is life after lung cancer, enjoy it!

20 Years to Celebrate and Educate!

By Selma Rosen

Selma, a lung cancer advocate and 20 year survivor.

Selma, a lung cancer advocate and 20 year survivor.

Every year is a celebration for me, but this year in particular. This year marks the 20 year anniversary of my lung cancer diagnosis. It was a fluke my son’s eagle eye saw a lump on my throat that brought me to the doctor, which landed me in a CT scan, and later resulted in the discovery of a nodule on my right lung.

I was incredibly lucky to have found my lung cancer at an early and treatable stage 20 years ago. Following my diagnosis, I made it my mission to ensure others were given the same opportunity I had. Just a few months before my diagnosis, I had bronchitis for which I had two chest x-rays; both were negative. Realizing what a difference a CT scan can make and the life-saving benefits that accompany it, fueled me to take action and raise awareness.

Between 2001 and 2014, I led the Lung Cancer Society of Long Island, where I spent most of my time educating the community about early detection and raising awareness for the stigma associated with the disease, or how I like to call it “blaming the victim mentality.” I was invited to speak at the World Conference on Lung Cancer and worked with I-ELCAP to ensure CT screening became the gold standard for early detection. Knowledge is power and if we can educate those at high risk, as well as the general public, we can make a difference and save lives.

Being a 20 year lung cancer survivor is not all fun and games. There are a number of side effects that have lingered on from my surgery that I deal with every day.  I have scar tissue on my right lung that leaves me susceptible to pneumonia, which I find myself in the hospital for often. I also have difficulty moving the upper ride side of my body, especially repetitive motion, without experiencing pain. But I am alive!

My lung cancer diagnosis set me on a path to help others and raise awareness for early detection of the disease. I was lucky enough to accidentally find my cancer at a treatable stage. Now more and more people can do the same and I will continue to fight on their behalf.


To find out if you are at risk for lung cancer visit www.atriskforlungcancer.org. Looking to get a CT scan? Find a Screening Center of Excellence near you.

If you are a long-term lung cancer survivor and need help managing side effects, click here. You can also call our HelpLine, 1-800-298-2436, to speak with one of our support staff.


Meet Our Newest Board Members!

Michelle Mason and Lisa Poulin

Michelle Mason and Lisa Poulin


We are so thrilled to welcome Michelle Mason and Lisa Poulin as the two newest members to our Board of Directors. Lisa is a Principal at Deloitte CRG in Transactions and Business Analytics and Michelle is the President and CEO of the Association Forum of Chicagoland.  We sat down with them to find out what the lung cancer movement means to them and how they hope to make a difference.

Why did you decide to join LCA’s Board of Directors? 

MICHELLE: LCA gives a voice to those who are impacted by the silent disease – lung cancer.  Their empathic and personalized approach provides access to research, resources and a community of support in a dignified manner.  LCA’s broad reach and accomplishments are changing the lung cancer dialogue and delivering results.  It is because of this level of commitment that I choose to serve on the Board.

LISA: It is an opportunity to give back. Working on the board of an organization that helps people meet the challenges of serious health issues is meaningful work. I am part of something bigger than I am and that makes a difference.

What is your connection to lung cancer?

MICHELLE: I know several who have passed away from the disease.

LISA: Both of my aunts on my mother’s side of the family died of lung cancer and my grandfather suffered a long time with emphysema. Clearly it’s an illness that has impacted my family.

What would you like to achieve through your work with LCA? Is there a particular aspect of the cause you are most interested in (e.g., stigma, screening, support, etc.)?

MICHELLE: I simply want to help LCA accomplish its mission – saving lives and advancing research by empowering those living with or at risk for lung cancer.  I believe all aspect are equally important.

LISA: I just joined so I am trying to figure out where I can make an impact.  Not clear yet as all aspects are important.  I did not join with a selected purpose in mind and am developing a focus the more I learn.

What has been your favorite part of joining the team thus far?

MICHELLE: Joining a community of people committed to helping and supporting those impacted by the disease.

LISA: Getting to know the board members and the organization’s accomplishments.  So exciting to be part of such a solid and positive organization.  Love the energy and passion of all the board and staff.


Stories of Sisters. Stories of Strength.

Sandra, her mother,  Rosalind, Carolyn and Nicole.

Sandra’s mother Phyllis Horton (top left), her oldest sister Carolyn Robinson (top right), her sister Rosalind Turner (bottom left), her niece and Carolyn’s oldest daughter Nicole Burnett (bottom middle) and Carolyn’s youngest daughter, Carolyn Greene (bottom right).

Sunday, August 2nd was National Sister’s Day, a day to show your appreciation for your sisters. In honor of the holiday, we found a family in our community that is full of sisters, strength, love, inspiration and hope.

My name is Sandra Walker; lung cancer has impacted my life tremendously. My mother, a non-smoker, died in April 2005 from lung cancer, so in 2013 when I was told that my two older sisters and my niece had been diagnosed with the same disease all within a six month span, I was devastated.  They all appeared to be in good health prior to their diagnoses.

My name is Carolyn Robinson. I am Sandra’s oldest sister. I am a lung cancer survivor. I lost my sister and oldest daughter to lung cancer in 2013, as I too battled this terrible disease. Just years before this, my youngest daughter was diagnosed with breast cancer. She fights and continues to fight. Her survivorship is an inspiration to me and our entire family.

With the gift of life I have been given, I hold onto my other two daughters, sisters, nieces, granddaughter and great-grands and give them lots of love. I try and focus my efforts on helping other cancer patients and survivors. Helping others makes me feel closer to those I have lost.

My name is Crystal Horton and I am the youngest sister and the baby of the family. My role was that of the caregiver. Professionally, I am a nurse, so caregiving comes naturally to me. When my mother was sick, I took her to all her appointments and provided care.

I found that being a nurse, and the only medical professional in the family, brought both benefits, as well as difficulties. My medical knowledge made me feel purposeful in doctor’s appointments, acting as a medium between the doctors and my family members. The experiences I have endured have given me a strength I never knew I had. I fight and live every day for those family members that are no longer here.

After living through these incredibly difficult losses, our family has become even closer and are careful not to take one another for granted. What gives me strength throughout difficult times are the memories.

My sister Carolyn, now a two year survivor, is not only my biggest supporter, but also motivates and inspires me. She has endured losing both her sister and daughter, all while fighting lung cancer herself.

I wanted to help others in my position, so I became involved with the Lung Cancer Alliance and this year joined the planning community of Lung Love Walk Atlanta. What an amazing experience to come together with other’s touched by the disease. Additionally, I make sure to get a CT scan every year in October in honor of my sister Rosalind who passed away the same month in 2013. I pledge to do everything in my power to bring awareness to this illness.


If you or a loved one is battling lung cancer and have questions or need to speak with someone, please call our HelpLine at 1-800-298-2436 or email support@lungcanceralliance.org.

For opportunities to get involved in the fight against lung cancer, click here!

As We Get Smarter, So Do Clinical Trials

Jennifer King, Lung Cancer Alliance Director of Research and Science

Jennifer King, Lung Cancer Alliance Director of Research and Science

By Jennifer King, Lung Cancer Alliance Director of Science and Research

The information we have today about lung cancer – about diagnosis, staging, treatment and survivorship – is because we learned from the journeys of patients before you.  As a patient, an important way that you can be involved in research is to join a clinical trial. It may not just help you but could help others in the future, as well.

Today, I want to explain how clinical trials have been changing to help even more people. Now that we understand cancer better, researchers can use this knowledge to design smarter clinical trials that benefit more people and reach answers more quickly.  One type of new design is called an “umbrella” trial, because the trial covers multiple smaller trials underneath it (think of the smaller sub-studies as the spokes of the umbrella).  Patients with one specific type of disease enroll on the trial, but they are then assigned to one of several smaller studies (sub-studies) under the umbrella that is most appropriate for them.

A good example is the Lung-MAP trial for advanced squamous cell carcinoma, a type of non-small cell lung cancer.  If you have advanced squamous cell carcinoma, you may be able to join this trial, which will check your tumor tissue for certain gene changes that may be helping your cancer to grow and spread.  Depending on your personal results, you get assigned to the sub-study that is most likely to benefit you.  This is a win-win. You have a better chance of responding to the new drug being tested and researchers get more people with the exact tumor characteristics that they are looking for to enroll in each part of the trial.

The researchers running the trial are also able to change the sub-studies over time as we continue to learn more about treating cancer.  I was able to attend the Lung-MAP investigators meeting in June where they were discussing changes to the sub-studies now that Opdivo has been approved.  It was very clear how passionate the group was about making sure the research being done was best for the patients.  (An example discussion point: “Would patients want to go on the trial first or try Opdivo first?”)

Another important umbrella trial in lung cancer to consider is the ALCHEMIST trial for early stage lung cancer that can be treated by surgery.  Similar to LungMAP, there is genetic testing of the tumor. Those with certain changes to the EGFR or ALK genes will receive adjuvant (additional) therapy with drugs targeting these changes to see if these drugs will help keep the cancer from coming back.

Along with these newer umbrella trials that are specific to one cancer, there are also “basket” (also called “bucket”) trials that enroll patients with multiple cancer types. Basket/bucket trials enroll patients from many different cancers but then put them in “baskets” (sub-studies) based on the molecular profile of the tumor, not the type of cancer.  This goes hand in hand with the new, hot topic of precision medicine.

NCI-MATCH is a new basket trial from the National Institutes of Health that is now open across the country, assigning patients to drugs based on DNA sequencing of their tumor.  The American Society of Clinical Oncology is also starting a new clinical study called TAPUR later this year which allows patients to take drugs “off-label” (ie, a patient with lung cancer could take a drug approved for leukemia or melanoma) if the cancer has the type of  genetic change that the drug targets.  In both cases, it’s these precise changes in your cancer, not where it is located that determines the best trial therapy.

The key takeaway is that trial design is changing, for the better.  I was just talking with a pharmaceutical company executive in charge of a clinical trial program about how earlier in his career, a Phase I clinical trial was only to show if a drug was safe (not whether it worked).  Now they expect drugs to be truly helping people even in these early phases, because they are given to the right group of patients.

When evaluating your options for yourself or your loved ones, consider clinical trials and discuss them with your healthcare team.  You may be able to pay it forward and help us learn how to better treat lung cancer for everyone, including yourself. If you need help finding a trial, we have a Lung Cancer Clinical Trial Matching service that can be accessed online or through a phone navigator at 1-800-698-0931.

The following are great resources on the basics of clinical trials and why they are important, including LCA’s Understanding Clinical Trials brochure, the National Cancer Institute website and Cancer.Net’s PRE-ACT video series.

A Permanent Mark of Survivorship

By Francis Spruit, Lung Cancer Alliance Chapter Co-Director, lung cancer survivor

Francis and Roslyn

Francis and Roslyn Spruit at Senator Feinstein’s office during the 2015 National Lung Cancer Summit.

Francis Spruit was diagnosed with lung cancer in 2007 at the age of 48. After the shock of the news, he decided he was not only going to fight the disease, but take on the cause for all those impacted by lung cancer. Francis and his wife, Roslyn, became eager volunteers at Lung Cancer Alliance, taking on the role as Chapter Co-Directors in Northern California and hosting events, recruiting other volunteers and working with policy makers in California and Washington, DC. We sat down with Francis to find out how becoming a survivor has changed his life, for the better.

What is the best part about being a lung cancer survivor?

Living. Somehow my perspective on life became broader in some areas, also more intense and richer. The cancer survivorship journey is (hopefully) long, and at times very challenging. It has taken me to my physical as well as emotional limits. I have experienced fear and uncertainty but also joy and acceptance. It made me realize that you do not survive on your own; I am a survivor because I have a life partner who understands the concepts of living, healing, love and giving.

What would you tell someone newly diagnosed?

Learn about lung cancer. Join Lung Cancer Alliance. Talk to people who have gone through the cancer journey. Lung cancer is a challenging disease but it will bring new people into your life that will make your life richer.


Francis’ tattoo honoring seven years of survivorship.

Why did you get a tattoo of LCA’s lungs?

I wanted to get a tattoo to express my gratitude for surviving lung cancer. I’ve been playing around with the tattoo idea since after my surgery in 2007. Last month when we were in Vegas I decided that the LCA logo would look really cool on my arm. As my wife, Roslyn, puts it “what happens in Vegas comes home with you on your arm.” Thus far I have only had a few people ask me about it, one person actually thought they were angels’ wings. When people ask, I will be very happy to explain and share our story of pain, nausea, physical and emotional stress all the way to surviving and thriving. I’m a very lucky guy in more ways than one.

Why did you decide to get involved in advocacy?

I wanted to contribute to the lung cancer cause. When I joined LCA in 2009 I learned that creating awareness with our representatives on Capitol Hill is of critical importance. Helping them realize that lung cancer deserves a much higher priority when it comes to research funding, allocating key resources and developing policies and legislation. I am able to not only contribute my knowledge of lung cancer statistics, but also provide personal context from my own lung cancer journey. It’s an effective combination!

What is your favorite thing about being a lung cancer advocate?

I really like to share my story and see the look of surprise in people’s eyes, and then turn that surprise into empathy and support, or at least understanding. Multiply that by the number of times we get to share our journey and you get a strong sense that we are and will save many lives!

Click here to learn more about becoming a lung cancer advocate and getting involved in the movement!