Reaching New Heights in DC

dave clark 2

Dave and his son, Matt, on one of their many climbs.

By Dave Clark, Lung Cancer Survivor

I am a climber. I climb mountains. I am currently working towards becoming a 46er—climbing every peak in the Adirondack Mountains in New York. In fact, I just climbed Cascade and Porter mountainsthis past weekend.

Climbing, for me, is as much mental as it is physical. Focusing on my goals and no matter how hard, always taking that next step. I never give up on a mountain.

I am also a lung cancer survivor. Diagnosed after a climb just last winter. I haven’t stopped climbing. Just the opposite, in fact. I am using climbing to tell a story. The story about a disease that for far too long has been ignored. A disease that is blamed on the people diagnosed.

My story and the facts about lung cancer have been featured in articles, highlighted at the hospital where I work and now, I am bringing all of this to Washington, DC.

I will be sharing my story to the attendees at Lung Cancer Alliance’s Lung Cancer Summit and taking it directly to the Hill and my members of Congress! I urge you to do the same. Join me in Washington, DC this May at the Summit so we can reach new heights together for all of those impacted by lung cancer.

See you there!

8th Annual Lung Cancer Summit
May 15-18, 2016 • Washington, DC
Lodging & meals provided.
Scholarships available.

Understanding Survivor Guilt


Tara presenting on survivor guilt at APOS on March 4th.

Tara presenting on survivor guilt at APOS annual conference.

By Tara Perloff, Sr. Manager of Support Services at Lung Cancer Alliance

As part of the Community and Support Services Team at Lung Cancer Alliance (LCA), I speak with lung cancer survivors each and every day. Some are newly diagnosed, while others are long-term (even 20+ years!). We talk about everything from diagnosis, second opinions, treatment, side effects, you name it.

Over the past four years working at LCA, I have been lucky enough to observe a jump in survivors in the lung cancer community. While survivorship is often portrayed as an over-the-moon, happy feeling that all people battling cancer set as their goal, many lung cancer survivors feel burdened by it, experiencing  emotions of guilt, anxiety and stress. I wanted to know why. My research led me to a phenomenon known as “survivor guilt.”

Survivor guilt is, by definition, exactly like it sounds: feeling guilty for surviving something (whether a disease or event) that others have not. Knowing that millions of people lose their battle to lung cancer each year, it made sense that lung cancer survivors would have survivor guilt. When I started to seek ways to help people cope with survivor guilt, however, I was surprised to find that little research had been done. Therefore, we took it into our own hands.

We wanted to see just how many lung cancer survivors experience guilt. We did this by surveying our patient community to measure survivor guilt using a certified psychology scale. Included in the survey was a definition of survivor guilt and participants were asked if they had ever felt survivor guilt throughout their lung cancer experience. Our results from the survey showed that 63.9% of lung cancer survivors have experienced feelings of survivor guilt. It confirmed what we knew, survivor guilt is felt by the majority of lung cancer survivors.

Why is this so important? This year, over 224,000 Americans will be diagnosed with lung cancer. With six new lung cancer drug approvals in 2015 and more on the way, plus the widespread adoption of lung cancer screening, we are going to see more and more lung cancer survivors than ever before!  Our goal is to make certain that your needs are accurately understood, heard and addressed by your health care team.

That process has already begun. Earlier this month, I presented our Survivor Guilt study to health care professionals who focus on mental health and the wellbeing of cancer patients at The American Psychosocial Oncology Society’s (APOS) Annual conference. Feedback was overwhelmingly positive and collaboration to expand this study is already underway.

We will continue exploring this topic in order to provide you ways to cope and enjoy each and every day as a lung cancer survivor!

If you are dealing with survivor guilt, have questions or want to help in future studies, please call Tara at 1-800-298-2436 or email

Just Breathe

Nicole and Unc on one of their many runs together.

Nicole and Unc on one of their many runs together.

By Nicole Nelson

As I stood with the microphone in my hands, about to welcome the crowd, I quickly realized that this sea of people I was addressing has the same love and admiration for my uncle as I do.

My Uncle Donnie (or “Unc” as I call him), a Long Island native, found his home in the Binghamton, New York area as a young teen. It was there he married, raised a family and watched his father fight a difficult six month battle with small cell lung cancer 16 years ago. As I welcomed a crowd of over 400 to his recent benefit, I was truly humbled by this small town’s reaction to Unc’s diagnosis last October of stage 4 small cell lung cancer.

The diversity of the crowd at the benefit was also a testament to the character that is my uncle. From the nuns and other members of the parish he donates his time and efforts to; to the crowd of IBEW (International Brotherhood of Electrical Workers) brothers, where he has been a long time member of Local 325; to the Harley guys and fellow runners and to the family members we all added to the organized chaos.

It’s almost as though Unc has lived many lives in his 53 years on this planet. His many and varying interests and hobbies have allowed his light to touch the lives of so many, as evident by the event. His ‘health overhaul’ (8 or so years ago) is what has most inspired me. A healthy diet and increased exercise soon had him, a man who once could barely walk due to back surgeries, participating in a local triathlon. He brought life to the thought that “you don’t always have to be who you were.”

Unc and Nicole at the start of their annual Turkey Trot race.

Unc and Nicole at the start of their annual Thanksgiving day race.

Four years ago I fed off this determination, and found some of my own, following his lead and transforming my lifestyle. Soon we were running my first 8K race together, in 18 degree weather, to help raise money for a local food pantry. A year and a half later Mother Nature provided a 98 degree day and another chance to run with Unc in a charity race. It was that stifling July day, when trying to match his pace left me sick and gasping for air, when he said such simple words that gave me strength.

“Just breathe, Nic…just breathe”

So now I plan to continue his giving spirit, and his healthy lifestyle, by presenting the Just Breathe Virtual 5K/10K in his honor. The virtual run allows anyone and everyone, no matter where they are, to participate and offer support to Unc and all those fighting this battle. All registration proceeds benefit Lung Cancer Alliance, an organization that has already helped our family in so many ways and will no doubt continue that trend. Also, in keeping with our love of extremes, when the race hits its first 200 registrants, I will be shaving my head in honor of all those who continue to battle this horrendous disease.

It was at his benefit, surrounded by twice as many people as expected, and twice the love, that I saw just how far reaching Unc’s light shines. He may not have had the ability to attend the event, fighting yet another infection, but his presence was felt by all those who were there. While every day is a new struggle, it is the future that Unc looks forward to the most. Spending time with his five granddaughters, the run in April, and most importantly the birth of his first grandson in June. May his own words give him the strength to do so.

Just breathe, Unc…just breathe.

Learn more about the Just Breathe Virtual 5K/10K on April 9th and how to get involved in the fight against lung cancer today!

Get to Know Our New Director of Philanthropy



Kristin Bramell, Lung Cancer Alliance’s Director of Philanthropy

We are thrilled to welcome Kristin Bramell to our LCA family as our new Director of Philanthropy. Kristin works with those individuals who are interested in saving lives and leaving a legacy through financial support.

She brings with her over a decade of experience in non-profit development work, the majority at The Nature Conservancy. We sat down with Kristin to find out why she chose to bring her talents to LCA and what she hopes to achieve.

Why LCA? Why lung cancer?
Everyone is affected by cancer at some point in their lives, whether a loved one or friend, but I became overwhelmed in learning about the statistics surrounding lung cancer particularly. I couldn’t believe that a disease killing 160,000 people each year received such little funding and was often overlooked in the public eye. As I talked to my peers about working at LCA, I heard story after story of loved ones lost to this disease and I realized that working for such a reputable organization in the fight against lung cancer was where I wanted to be.

What has stood out to you about LCA since starting in February?
Since starting this role and meeting the people behind the organization, I am so driven by the clear mission and tireless efforts of the staff and volunteers. They truly “walk the walk”—and are 100% dedicated to supporting the lung cancer community in thought and action.

What impact do you hope to have on the lung cancer community?
Of course, we are all working towards the vision to triple survivorship by 2020.  It is such a compelling impact statement and I am excited to be a part of that movement. I look forward to connecting with our community and using my skills to directly help those who need it most.

Additionally, I was moved to learn of the increasing risk of lung cancer in our veterans and I hope to help positively impact that community.

The Nature Conservancy and LCA are pretty different. What did you learn there that you can apply here?  While changing roles from a group like The Nature Conservancy to Lung Cancer Alliance might seem drastically different, there is a tremendous tie between the environment in which we live and our health. I am hopeful that cities worldwide will one day realize this connection because of LCA’s efforts and successes here in the U.S.

Learn more about Kristin and her work with LCA here or email her at

A Message from Lung Cancer Caucus Co-Chair, Congresswoman Capps


Congressional Lung Cancer Caucus Co-Chair, Representative Lois Capps (CA)

By Representative Lois Capps (CA)

I pen this post with a great sense of optimism for what we, as a nation, can achieve in our fight against cancer. As co-Chair of the House Cancer Caucus I have seen the evolving impact of cancer on our nation over the years. Today lung cancer is the second most commonly diagnosed cancer in both men and women—claiming far too many lives in each community, neighborhood, and family—including my own.  In the spirit of solidarity and with a great sense of purpose, I joined my colleagues Congressman Rick Nolan (D-MN) and Congressman Frank LoBiondo (R-NJ) in establishing the Congressional Lung Cancer Caucus last year to bring particular attention to the disease.

It is our mission as a bipartisan caucus to serve as a clearinghouse of information for our colleagues on Capitol Hill as they seek to understand the issues surrounding those who are living with and those who are at risk for lung cancer. We aim to eliminate the stigma often associated with lung cancer and highlight the many populations who are at increased risk for this diagnosis, including service members and veterans. And we seek to draw attention to the importance of lung cancer research, screening, and treatments to improve survivorship.

We are at a crossroads in our nation’s fight against cancer. The President’s “Moonshot to End Cancer” includes unprecedented levels of funding to promote advancement in cancer research and therapeutic development. This builds on the progress that dedicated lawmakers have made over the years to advocate for funding to cure all types of cancer. For years, my fellow co-chairs and I have been working to ease the struggles that cancer patients and their families face during the treatment process. In 2007, the House passed my resolution that called on the President to declare lung cancer a public health priority and encourage greater investment in research. And my bipartisan bill, the Planning Actively for Cancer Treatment (PACT) Act, continues to gain the support of providers and advocates across the country who support this effort to fill many of the gaps in cancer care by helping patients access a written treatment roadmap, developed in consultation with their health care providers, to encourage coordinated cancer care and symptom management.

Combating lung cancer requires us as a nation to use all the tools in our arsenal. It requires us as members of Congress to help the scientific community build on the strides they have made so far by ensuring they have the resources to continue making progress. It requires us to strengthen the cancer care system by providing support for cancer patients and their families as they navigate their care. And it requires treatments to be affordable and accessible. Countless families are relying on us, and it is my belief that by working together, we can change the fate of individuals diagnosed with this devastating disease.

Join me and my fellow co-chairs of the Congressional Lung Cancer Caucus for an educational briefing on Capitol Hill Wednesday, March 2 to discuss the impact of stigma on public health policy. Learn more here.

Join Me. Leave A Legacy.



By Elaine Gage

I am 84 years old and a 26 year survivor of Small Cell Lung Cancer (SCLC). My lung cancer diagnosis has shaped my life. In 1989, I went into the doctor with some persistent shoulder pain. While discussing my health with my doctor, I mentioned I was a smoker and was due for my annual chest x-ray.  An often routine procedure, but one that constantly haunted me, finally forced me to face my biggest fear; they found a nodule on my lung and it looked like lung cancer.

16 days later I went in for surgery and shortly after started chemotherapy. I never considered dying. Death was not an option for me. Although we knew lung cancer statistics were not good, my husband and I deliberately did not look into the facts, as a means of self-protection.  I chose to only focus on one thing at a time. It was too hard to think past the present. I concentrated on healing from surgery, then getting through chemotherapy and did not let myself worry about the consequences. Now this isn’t to say I wasn’t scared to death; I was.

After getting through those difficult times, to everyone’s surprise, I started to get better. At the time, this was unheard of for a SCLC patient. “Why me?” “Why did I survive?” I would ask myself.  There had to have been a reason for it and I decided I must take advantage of the life I had been given and help others.

A few years after my diagnosis, I started to volunteer. I was contacted by the organization that is now Lung Cancer Alliance.  They were a small “kitchen table” group of passionate people who I was instantly drawn to. I found my niche as a Phone Buddy, speaking with other SCLC survivors on the phone.  I was able to help them through their lung cancer journey, by offering advice and hope from my own experience. I believe I received more out of this experience than the patients I was talking to. I met the most amazing people. I am so impressed with the courage of cancer patients.

Later on, I took my volunteering off the phone and into our local hospital in Southern CA, where I had once been treated for my lung cancer.  I joined the Mended Hearts group, who spent time with hospital patients before and after surgery, offering them care and company. I wanted to work with lung cancer patients specifically, but there was no such program. I have never been one to pass up an opportunity, so I decided to create a lung cancer specific program myself.

We would visit the patients while they were waiting to go in for surgery, tell them “I know how you feel. I was there and look where I am now.” It was an incredibly beneficial process, not only for the patient, but for me as well. We would meet them after surgery with a homemade pillow and a smile. Looking back, I felt very lonely during my diagnosis and surgery, so it felt good to be there for them.

Lung cancer has shaped my life tremendously. I recently decided I would leave a gift in my will for Lung Cancer Alliance. The folks at Lung Cancer Alliance are my friends. I see this as a way to say thank you to the lung cancer community for the benefits and opportunities they have provided me over the years. Lung cancer is such an important, yet overlooked, cause. If you give money, you want to give it to people who know how to spend it in a worthwhile way and I trust Lung Cancer Alliance.  Lung cancer research, support and spreading awareness is where I want my legacy to continue.

Please consider leaving a legacy and help save lives and advance research. Click here for more information.

Finding Love Where You Least Expect It

Patrick and Joanne

Patrick and Joanne

By Patrick Louis

Love is a funny thing. You tend to come upon it when you least expect it and often in the most surprising places. This holds true for my love story.

I first met Joanne in 1995. We worked together at Houlihan’s in Boston. We were strictly coworkers, however I couldn’t help noticing her beautiful eyes and smile. We started to spend time together outside of work, discussing our passions, families and dreams. Peeling back the layers of our stories revealed some uncanny experiences we had in common.

It was Mother’s Day when I noticed Joanne seemed sad, something was off.  We came to discover that in 1994 we had both lost our moms to lung cancer, within only three months of each other!

Being the romantic that I am (kidding!) I gave Joanne a poem representing daughters that had lost their mothers. Losing my mom was one of the hardest things I had ever gone through and it helped to be with someone who could understand that.

We both left our jobs at Houlihan’s a year later and gradually lost touch with each other.

Two years down the road, I was working at a bar downtown, and as fate would have it, Joanne walked in the door. We began our relationship as friends, catching up on old times, sharing new stories. It blossomed over time, creating a powerful bond, leading to a relationship, marriage and the creation of our own family with our son, Jason.

Through stories and pictures, I feel like I know Joanne’s mom and she knows mine. We want Jason to grow up knowing the amazing people our moms were. Each November, for Lung Cancer Awareness Month, we attend a Shine a Light event, light a candle and remember them.

Although incredibly difficult, I do believe it is possible to find growth and positivity in any situation. Both Joanne and I moved to Boston because of events having to do with our moms’ deaths. We would have never crossed paths otherwise!

My advice, keep an open heart because you just never know when love will greet you. And if you are really lucky, it will root deep and stay for a lifetime or longer.

Click here to honor someone you love today!

I fight for me! I fight for them!

World Cancer Day unites the world’s population in the fight against cancer. It aims to save millions of preventable deaths each year by raising awareness and education about the disease, pressing governments and individuals across the world to take action. One of the best ways to make a difference, raise awareness and help others is by sharing stories of inspiration and survivorship. Here is a story of hope from an incredible survivor.  


Barry and Michele

Last May I was diagnosed with stage IV non-small cell lung cancer. It started with pain in my side and back that was not going away. Being 43 years old, lung cancer was not the obvious prognosis. Thus began a four month process including a slew of tests. There appeared to be nothing wrong. We were going in circles and felt completely helpless.

One night I woke up hyperventilating. I figured the anxiety had just caught up to me, until the next morning when I coughed up a small amount of blood. We decided to go to the ER and demand a true diagnosis.  I had my first chest x-ray since the process began! After a few more tests, the doctors confirmed I had lung cancer.

How is this possible? I am only 43 years old! I was in shock, not quite processing the news, while my husband of 17 years, Barry, was completely taken into another realm. In the past, I had always served as the caregiver in our relationship, especially 10 years ago when Barry hurt his lower back and was in bed for almost two years recovering from multiple surgeries.  He was scared to take on this new role, but he stepped up to the challenge.

As most of you know, treatment is tough. There is nothing pretty about it. I lost my hair and started to feel like I was losing myself a bit. I told Barry I felt like it had stolen my innocence and freedom.

How does Barry handle the emotional, physical and mental drainage? He finds support from survivors. Barry goes to a local lung cancer support group (find a support group near you), where he hears survivors talk about their experiences, giving him a new perspective in order to best help me.

I am now on my second round of treatment and the chemo has stopped working. As you can imagine, this news was heartbreaking. Now what?  Thankfully, in the same year I was diagnosed, SIX lung cancer treatments have been approved by the FDA. My next step is to start immunotherapy. I have great hope! I refuse to back down in my fight; it is just a matter of finding the right treatment.

The amount of love and support I have received from family, friends, colleagues and even strangers is overwhelming. It runs deep, lifts me up when I am down and makes me thankful for every day. I fight for me! I fight for them!

By Michele MacKinnon


Click here to allow Lung Cancer Alliance to support Michele and others like her in their fight against lung cancer.

Lung Cancer Survivorship: What’s Your Plan?














By Jennifer King, PhD, LCA Director of Science and Research

Much of the first day of the Cancer Survivorship Symposium that I attended this month was dedicated to talking about Survivorship Care Plans.  An early peek at the results of our Needs Assessment Survey (take it today, if you haven’t yet!) suggests that not very many lung cancer patients have these plans after they complete treatment.  This is a problem. As pointed out at the meeting, often it is not even possession of the plan that makes a difference in your care, it is the conversations that go into the creation of the plan.

Cancer survivorship can be viewed as its own complex, “chronic disease”.  If you have been treated for cancer, you not only have to be monitored for recurrences, you may also be at a higher risk for second cancers, heart problems, fertility issues, emotional problems and more.  However, similar to the way cancer treatment is now becoming more personalized and precise, the care of survivors should also be risk-based and individualized.

For example, certain chemotherapies can make you more likely to have late-onset heart problems but others may lead to tingling and numbness in the feet and hands.  Shortness of breath is much more common after lung cancer than other cancer types.  Doctors should understand YOUR history, not that of “cancer survivors” in general, to be able to best monitor you moving forward.  This is the top section of most Survivorship Care Plans – describing your exact diagnosis (type of cancer, stage, etc.) and what specific treatments you had.

The next part of the Survivorship Care Plan focuses on how you should be monitored – and how you shouldn’t. This is important for so many reasons. First, many cancer patients feel disconnected from their care teams once treatment ends. Your oncologist may be focusing more on patients actively undergoing treatment and at some point may want to transition you back to a primary care physician (PCP). The PCP may be reluctant because they may not be well-versed in what is needed for your particular follow-up.   The Institute of Medicine, in an important report in 2005, called this phenomenon “Lost In Transition”.

A Survivorship Care Plan can spell out when and how you should be screened for recurrences and for possible side-effects that are relevant to you. It can specify which specialists you should visit and how often. This can give you (and your PCP) more understanding and clarity on how you move forward and who you see for what purpose.  This may also give you more emotional peace of mind and can save you time and money. One case example at the meeting showed a patient being followed for too many possible things, some of which she was not at a high-risk for, resulting in unnecessary time, loss of work, and added expense.

Ideally, these plans will be filled out and discussed jointly by you and your treatment team.  Hopefully, your treatment team will suggest using one, but if not, here are some templates that you can bring to your doctor for discussion and development of a plan: My Care Plan by Journey Forward, the survivorship plans on Cancer.Net or the LIVESTRONG Care Plan.

The ultimate goal is to plan for the right amount of follow-up care based on YOUR disease and treatment history and enough medical care to ensure you are followed according to known evidence-based guidelines, but not too much that it will negatively impact your quality of life.

On a side note, I would encourage you to talk to your support network (loved ones, friends) about the plan too. Many cancer patients feel like they have a team with them when undergoing treatment. Then, once treatment is over, those people declare victory and go back to their normal lives and don’t realize the challenges of living beyond cancer. Helping your network understand that your path forward may continue to present emotional and/or physical challenges can improve your support as you move into the next phase.

I learned so much at the meeting — but even better was the educating that we did. In a community largely dominated by research on breast cancer, my LCA colleague and I explained to many people that the tide of lung cancer is changing. With coverage of lung cancer screening plus six new drug approvals in 2015, NOW is the time to start understanding lung cancer survivorship because it’s about to start increasing.  We were pleased to find that when we talked to survivorship researchers, they agreed.


Above and Beyond: Creating a Community Lifeline

Lori received LCA's Support Group Facilitator Award in 2011

Lori received LCA’s Support Group Award in 2011

By Lori Robinson

My name is Lori. I am not a lung cancer survivor.  I have been running a monthly lung cancer support group in Central Florida for the past six years.

When I decided to start the group, I was working for a pharmaceutical company and noticed the essential need for in-person support for those impacted by lung cancer. It didn’t take much to realize how significantly this community was overlooked.

I saw that patients wanted a safe place to share their fears, experience comfort, peace and hope in the presence of others who share in the journey. On top of dealing with cancer, lung cancer patients also experience a stigma attached to the disease, a shame that is difficult to escape. Lung cancer is an equal opportunity disease; it does not discriminate.  Today, the pendulum is swinging and folks are realizing this.

Our monthly support meetings consist of between 25-35 patients and caregivers. It is hard to believe that when we started six years ago, we didn’t see our first member for three months. Starting a support group takes time, patience and determination. You must create an awareness in the community and they will come.

This group has been and continues to be, a very important place for many.  We had a member who was having such a difficult time he told me the group literally saved his life.  Every month someone will say how much this group means to them.  Of course, there are tears, but we laugh, learn, grow and become so much better, together.


Lori and her support group in Central Florida

Although we always have a support component to our group, you can’t keep doing the same thing every month. To spice things up, we try and incorporate new and interesting activities and programs, like relaxation techniques and art therapy. We also bring in guest speakers to discuss diet/nutrition, psychosocial elements of the disease, medical/radiation oncology and thoracic surgery.  We are always getting a pulse from members because needs are constantly changing.  Our group is successful because we are open and flexible with topics and the desires of the group.

Working with lung cancer patients has taught me that the human spirit is far more powerful than I ever imagined and absolutely anything is possible if you believe in your dream.  I believe in people and what we are able to achieve together.

If you would like to find a support group near your or are interested in starting your own, we can help! The Lung Cancer Alliance National Lung Cancer Support Group Network  consists of 90+ lung cancer-specific support groups across the country. They will help you get started, provide you with free services and tools to grow and maintain your group.