A Note For Those Newly Diagnosed

By Dann Wonser

Sunday is National Cancer Survivors Day and I am proud to be a 10 year lung cancer survivor! The past 10 year have not been easy, but I have learned a lot. If you have been diagnosed recently, here are a few things that you might want to hear from someone who has been in your shoes.

  • Have hope. Cancer treatment is exploding right now. It’s just incredible how fast things are changing – for the better.
  • Finding out is the hardest part. The first days, or weeks, are overwhelming for everyone. You will get past this – we all do. Just remember that what you are going through right now is harder than everything else you will go through. Everything else combined. The reason? You don’t have any tools to deal with it yet. That will change.
Dann and his wife Genevieve.

Dann and his wife Genevieve.

  • Let people in. My life is much richer and more full of love now than it ever was. That only came from sharing my trials and vulnerabilities. I have no doubt that I am alive today because of the love of, and for, family and friends. People surprised me with their outpouring of caring and love.
  • Plan how you are going to share your diagnosis with others. I found that by emailing people I cared about before talking with them about it, it saved me from endlessly re-living those first moments after being diagnosed, after the cancer had grown, or spread, or didn’t shrink when I had high hopes. This gave friends and family time to compose themselves before they talked with me, and because of that, the conversations went much better. This way I could also set the tone that I hoped that they would reflect back to me. It works.
  • Throw the statistics out the window. If you’ve been diagnosed for longer than 12 hours, you have probably already done an internet search and tried to calculate your survival odds and/or your new life expectancy. Finding statistics that match your specific situation is nearly impossible. For example, the average age of diagnosis for lung cancer is 71. I was 49. Do you think treatment outcomes will be the same? General health, environmental factors, location/size/number of tumors etc. – there are too many variables to make the stats make any sense for an individual. Beyond that, your attitude and actions make a difference.  More importantly, whatever statistics you find are probably hopelessly out of date. New treatments are coming online too fast for the statistics to keep up.
  • A diagnosis is not a prognosis. I was at the Lung Cancer Alliance National Summit a few weeks ago with 65 lung cancer survivors and loved ones. Most of us attending have, or had, Stage IV lung cancer, and a dozen have been alive for at least five years. If that’s not enough, I am your living example. I was first diagnosed ten years ago. One woman I know has had five different cancers, and is still alive 23 years later. The same diagnosis yields different results for different people.

At the National Lung Cancer Summit, Dann visited Senator Ron Wyden’s office, of his home state of Oregon, to discuss the importance of lung cancer.

  • Do your homework. Your survival chances are directly related to the quality of the treatment providers you work with. Is your oncologist a specialist in your specific type of cancer? As a general rule, the more people that your doctor and your treatment center have treated that have the same type of cancer as yours, the higher their success rate. Experience makes a difference. Who are the recognized experts in your type of cancer that are within a radius that you are willing to travel?
  • Get molecular testing. The most promising breakthroughs in cancer treatment are at the molecular level. This includes both targeted genetic treatments and immunotherapy. If your oncologist doesn’t think you need it, consider the possibility that your oncologist is out of step with the latest research. You may want a second opinion.
  • Re-think clinical trials. “Clinical trials” used to be considered the last gasp desperation approach to treatment. The reality is that, for lung cancer and many other types of cancer, this is where you will find the most promising, cutting-edge medicine, with the best results, and with the least side effects.
  • Exercise, sleep, and diet all make a difference. They impact your mood and your ability to cope. More importantly, you will recover from medication, radiation, and surgery better and faster if you are in the best shape you can be. Take care of yourself. Exercise, sleep, and diet. In that order. One man’s opinion.
  • Attitude matters. Treasure the moment. Live in gratitude for what you have right now. Choose hope. These things not only improve your quality of life, they also improve your chances of living a longer life.
  • Love yourself. Treat yourself like you matter. Because you do. This may be your last chance to act like it.

If you have questions about lung cancer or just need someone to talk to, we can help! Call us at 1-800-298-2436 or email support@lungcanceralliance.org.

Another Reason to Give Blood: Liquid Biopsies

purple top tubeBy Jennifer King, PhD, Director of Science and Research for Lung Cancer Alliance

The Food and Drug Administration (FDA) just approved the first blood-based test to detect lung cancer mutations (gene changes).  This is the first approval in what has been an exploding field of research that many are calling “liquid biopsies”.  The reason for studying liquid biopsies is pretty obvious to most lung cancer patients.  Getting a normal biopsy (where tissue is taken from the tumor to see if there is cancer) can be an invasive procedure.  Many people don’t want more than one biopsy but doctors and scientists need more information to understand how to best treat the cancer at different times during therapy.

In addition, sometimes not enough tissue is able to be collected to do all the appropriate tests.  If the tests could be done by simply taking blood, urine, sputum or even breath samples, it would make testing much easier for patients.

This technology will not replace a tissue biopsy to diagnose a cancer and determine what type (non-small cell or small cell) or stage your cancer is.  However, it may help with treatment decisions, particularly when deciding whether to take Targeted Therapies for your lung cancer.  For example, the newly approved test detects certain changes in a gene called EGFR (Epidermal Growth Factor Receptor) and can determine whether the patient is a good candidate for the drug Tarceva (erlotinib).

There are many different companies developing liquid biopsy tests in many different ways. The most common type of test uses blood from a patient and looks at pieces of DNA that have been released into the blood by the cancer cells.  (This is similar to blood-based prenatal testing where they can look at both the baby’s DNA and the mother’s DNA in the mother’s blood.)

The technology tends to work best in advanced disease (where there is more cancer) and metastatic disease (when it is already spreading through the body) because there is more cancer DNA in the blood.   Because of this, right now liquid biopsies are mostly being used for treating and “monitoring” advanced disease and re-testing after cancers recur.  For example, tests are also being developed for patients who have already been taking EGFR targeted therapies but then have a recurrence. In this case, the liquid biopsy would detect new gene changes that may make the patient a good candidate for a different EGFR targeted therapy.

It is important to note that laboratory tests such as these are not required to be FDA approved to be used in a clinic or physician’s office.  However, FDA approval indicates that the test has been thoroughly reviewed to be safe and provide useful treatment information.

In the future, as the technology improves and more clinical trials are done to prove that the tests work, we expect to see more liquid biopsies being used for drug selection at the time of diagnosis. For example, a doctor could give a blood test that would test for mutations in EGFR, ALK and other genes when not enough biopsy tissue is available.

With Lung Cancer Alliance’s focus on early detection of lung cancer, we are also encouraging and participating in research to develop and test these technologies as a way to detect cancer earlier, when it is more treatable.

For now, this EGFR blood-based test has been FDA approved and can be used to recommend Tarceva as a first-line therapy.  In addition, many research institutions are offering additional liquid biopsy tests to patients with late-stage disease to help guide their treatment. Here are some important things to discuss with your treatment team:

  • Is one of these tests a good option for me?
  • What test is being used and why?
  • What gene changes will the test detect?
  • What do the test results mean for my treatment?


(Disclosure: Jennifer is on a clinical trial advisory panel for a company in this space and receives travel reimbursement to attend meetings.  She has no role, scientific or financial, in the test referenced above.)

New Lung Cancer Legislation!


I am so proud and excited to share with you incredible news for our community. Last week, during our 8th National Summit, we were able to support the introduction of the Women and Lung Cancer Research and Preventive Services Act of 2016 in both the Senate and House!

Help get more support for this legislation by asking your Members of Congress to sign on today!

We know that lung cancer impacts women differently than men from age at diagnosis to smoking history to survival rates. With your help, we have been able to educate Members of Congress to the need for a new, coordinated research strategy to address this difference, with a focus on the increasing numbers of never smoking women being diagnosed.

This new legislation calls for the Secretaries of Health and Human Services, Department of Defense and the Veterans Administration to develop a comprehensive and innovative strategy and report back to Congress within six months.

Consistent with all other legislation related to lung cancer that Lung Cancer Alliance has secured, this bill will also be bicameral and bipartisan. That is, the bill will be introduced in both the House and the Senate with the support of members of both parties.

Find a list of co-sponsors here.

A big thank you to all of you for taking action on this important issue. Please send your emails to Congress today!


Laurie Fenton Ambrose
President & CEO, Lung Cancer Alliance

What a Week at #LCSummit16!

What an incredible week spent with some amazing lung cancer survivors and advocates in Washington, DC at the 8th Annual Lung Cancer Summit. Here are the top 7 highlights from the event.

  1. To kick off the event on Sunday night, we were fortunate enough to have a special musical performance from lung cancer survivor, Ginger Tam (vocals) and her cousin, Schulyer Slack (cello). Ginger has performed at past Shine a Light events and uses her music to raise awareness for the cause.


    Ginger and Schulyer kick-off the Summit with a musical performance.

  1. On Monday, we heard from our keynote survivor speaker, Dawn Horner. Dawn just finished running a half marathon, even after her diagnosis. She has taken her lung cancer experiences and is turning them into something positive by giving back through Lung Love Run/Walk Portland.

Dawn Horner sharing her lung cancer story.

  1. For the first time, we awarded the Michael G. Oxley Advocacy Scholarship Fund and Leadership Award to our very own Sheila Ross! The award embodies all that the late Honorable Michael G. Oxley, former Chairman of the Board of Lung Cancer Alliance, represented in his long and accomplished public service career – leadership, fairness, integrity, purpose, compassion, and service to others. There is no one more fit for the award than Sheila, a two time lung cancer survivor and the ultimate lung cancer advocate, having served with Lung Cancer Alliance as Special Counsel for 15 years.

The late Honorable Michael G. Oxley’s wife and son present the Advocacy Scholarship Fund and Leadership Award to Sheila Ross.

  1. On Tuesday, 65 survivors and loved ones from 26 states met with over 100 congressional representatives to discuss the importance of lung cancer. It was a BIG day to say the least!

While trying to stay dry, advocates snap a quick photo before storming the Hill.

  1. Dinner following our Hill Day was full of laughs and tears, with survivors and loved ones sharing highlights from their day. Awards were also presented to Ken Wheatley, for his leadership over the past five years as California Chapter Co-Director, and Shelly Engfer-Triebenbach for her ongoing efforts and dedication to the cause.

Shelly and Ken receive the 2016 Leadership and Volunteer Awards.

  1. We finished the Summit with a Congressional Briefing on Capitol Hill discussing the devastating facts surrounding women and lung cancer. We heard from some very impressive leaders in the medical community making great strides for lung cancer and women.

Congressman Rick Nolan, Co-Chair of the Lung Cancer Caucus with speakers at the Women & Lung Cancer Congressional Briefing.

  1. The best part about the Summit was that everyone got involved, even those who were not able to attend in person. Through Facebook and Twitter conversations, the event expanding beyond Washington DC. Keep up the buzz! It is a great way to share your story, raise awareness and educate.

Don’t forget, there are lots of ways to stay connected and involved in the lung cancer movement all year long. Click here to learn how!

A Lasting Legacy

By Nancy Labinger

Diane posing for the camera.

Diane posing for the camera.

When I ran into Diane a few years ago, we talked about the old days, everything from friends to fashion to politics. Our sidewalk rendezvous became dinner.

Once we started talking we never stopped.

We became the best of friends.  I learned that although for Diane the fact that she never married or had children was a disappointment, her life was very full of friends.  Loads and loads of dedicated, loving dear friends.  Wherever she went there were strong connections. The saying “friends are the family we create for ourselves” says it all.   Friends became her family.

She adored Roxie her Yorkie, all things fashion, movies, pilates, art and travel. She loved historical fiction and was particularly interested in the Holocaust. She was a devout Rolling Stones fan and never missed a concert in town.  She had a smile that lit up the room. With her twinkling brown eyes, she was undeniably beautiful.   She was forever posing for the camera, for the glam shots.  And as you can see, the camera loved her.

In the last couple of years, I accompanied Diane to her doctors’ appointments.  She was for the most part, upbeat and optimistic.   She talked often about silver linings. Silver linings and cancer.  Imagine that.  Her silver lining was that there was a targeted chemotherapy for her specific type of cancer.

Diane c 2

Diane next to her survivor banner at an awareness event.

She had a joie de vie and was full of life. In the ten years since her diagnosis, there were a lot of ups and downs. But this new drug gave her a quality of life that allowed her in her last 14 months to travel twice to Europe and to Palm Beach.

Throughout her time as a lung cancer survivor, Diane felt lucky. She wanted to help others diagnosed and give back. Turn her incredible luck and love of life into something positive.

She decided to leave her legacy in many ways, one of which was an estate gift to Lung Cancer Alliance. She believed in their mission and connected with the staff, meeting with the President in her beloved Chanel boutique on Michigan Avenue one May day.

Diane lost her battle with lung cancer a few years ago. I am not only incredibly lucky to have known her, but honored to call her my friend; to be considered a part of her family. Diane’s optimism, positivity and beauty will live on through stories, laughs and memories.

We are grateful to Diane for including Lung Cancer Alliance in her estate. Through her legacy, we can continue to help those living with and at risk for lung cancer. Learn more about how you can include Lung Cancer Alliance in your estate planning.

Family Comes First

Shelly and her family

Shelly and her family

By Shelly Engfer-Triebenbach

This Mother’s Day is a very special day for me. It reminds me of how fortunate I am to not only be a mother to my two beautiful children but also to be able to offer them the best version of myself.

I was diagnosed with stage IV adenocarcinoma on June 11, 2013. At that time, my daughter Kadyn was 10 years old and my son Chase was seven. Because I had six blood clots on my lungs, I was kept in the hospital for a full week while they ran a barrage of tests leading up to my diagnosis.  My kids could tell something wasn’t right. I was and remain very open and honest with them about my disease, answering any questions they have.

After finding out I have the ALK mutation, I started on Crizotinib, nine months later after progression I enrolled in a clinical trial for Brigatinib.  I have been stable on Brigatinib for 16 months.

My lung cancer affected Kadyn and Chase in different ways and at different times in the process. Chase was really bothered when my hair fell out about two weeks after starting chemotherapy. ‘When will it grow back?’ and ‘Are you going to wear a wig?’ were very common questions from him. He didn’t and still doesn’t comprehend the seriousness of my disease.

shelly 1

Shelly, Kadyn and Chase

My daughter didn’t fully understand the diagnosis at first, but she knew that it was serious because of all the changes.  One major change was my job.   I am a vocal music teacher by trade. When I started chemotherapy treatment I decided to not teach in fear of catching something from the students since my immune system was already compromised.

Kadyn dealt with my diagnosis by taking action and learning about lung cancer. Now in 7th grade, she expanded her knowledge of lung cancer in a presentation she did for FCCLA (Family, Career, Community Leaders of America) titled ‘Got Lungs?’  She focused on the unbelievable facts about this awful disease and the disparity of funding.  Her main focus was ‘all you need are lungs to get lung cancer.’  She received an almost perfect score on both a regional and state level! I am so proud of her for having the courage to share her story publicly.

This past fall I went back teaching part time.  Not only did I miss the students, but I also missed the professional community and collegial friendships.  I feel so blessed to be feeling well enough to be back in the classroom part-time.

Lung cancer has definitely changed my life, some for the worse (obviously) and some for the better.  I have different priorities in my life now.  I no longer take time and events for granted.

Before diagnosis I frequently would be double booked with my professional obligations and my kids’ activities.  No more!  My family comes first.  Reflecting on everything that has happened, it is sad that it took getting this horrific disease for me to get my priorities straight.

As a mother you are always thinking of your children first – their well-being, happiness and feelings. I was determined to stay strong and never give up for them. Witnessing their courage throughout the process gave me a strength I didn’t realize I processed.

For this Mother’s Day, my advice to anyone (especially the moms) surviving lung cancer is always be your own advocate, put family first and if you cannot find strength in yourself, do it for those who love you. I have my children to thank for reminding me of these important things and for keeping me present in this moment.


Passion and Logistics

Barbara Mendoza

Barbara Mendoza

By Barbara Mendoza

I joined the Lung Cancer Alliance (LCA) as Office Manager in June 2015. Having worked in nonprofit organizations and office management for almost my entire career, I feel quite at home in my work. I enjoy the nitty gritty aspects of administrative tasks, the sense of completion of checklists and solutions.  And though “office work” may sound dull to some, most administrative professionals in the world of nonprofits know that it is anything but! Another plus is when your organization seeks to make a difference in peoples’ lives and you realize that the mundane “office work” you do helps to support those on the frontlines of making that difference. You realize that life is more than profit margins.

My experience at LCA, however, has struck at a deeper level.  A dear friend of mine was diagnosed with advanced small cell lung cancer in late 2013 and by last June had already been through chemotherapy and several clinical trials.   His illness had brought me to my knees. In one of those weird confluences of how life sometimes works, I happened to be looking for new employment and also just happened to come across the job listing at LCA. Needless to say, my world came together.

One of LCA’s many strengths is its deep well of support for lung cancer patients, families, friends, and caregivers through phone support, education resources, information, public awareness, fighting for research funding (lung cancer has the highest level of cancer deaths — more than breast, colon and prostate cancers combined –and yet is one of the least funded in research and treatment) and early screening.

In working with my new colleagues, I found that support on a personal level.  They were there for me from the beginning, when my friend died a few months later, as well as now – for cancer is something that turns the timeline of our lives into “Before…” and handling “The New Normal” – treatment, survival, grief.  It also turns a person on the administrative side into a frontline soldier. A deliveryman remarks that he has just been diagnosed with lung cancer and I’m able to direct him to resources, treatment centers and further assistance.  I become outspoken now at the stigma lung cancer has – people asking upon hearing someone’s diagnosis “Oh, did he smoke?” even before saying “I’m sorry to hear that” — when in fact, almost 20% of lung cancer patients are never-smokers, and 60% have quit decades ago. Stigma causes underfunding of research dollars and adds unfair judgment and suffering to people and families who have enough on their plate already.

I am thankful that I am able to be a piston driving the engines of the nonprofit world. I am thankful that I can help extend a hand of hope to fellow human beings and fight the good fight to honor my friend’s life. One can find passion and purpose even in the most routine things.  I found mine.


Learn more about Barbara and the rest of our staff! 

 For My Mom


Riley's mom speaking at  the 2015 Lung Love Run/Walk Portland.

Riley’s mom speaking at 2015’s Lung Love Run/Walk Portland.

By Riley Bradach

Although I am 34 years old with a family of my own, I am still a huge momma’s boy. I’m her first born and have always owned that proudly. I’m close with my mom and I know I’m one of many who can say that–my mom has the ability to get close to everyone she meets. She’s energetic, positive and hilarious. If someone gives her an opening for conversation she’s going to find out their birthday, their career goals and a brief family history. She’s amazing like that.

I can’t overlook how funny she is. A lot of her best material probably isn’t fit for print but anyone who meets her finds out quickly that she is hilarious. She loves to laugh and does a great job making others smile and laugh as well. She’s fun to be around.

My mom was diagnosed with lung cancer in the fall of 2014. She didn’t smoke. She was eating right, working out and taking care of herself. She went to the doctor because of some discomfort and at her insistence she had her chest x-rayed. From there we knew something wasn’t right.

I was heartbroken but I was also angry. It was the type of feeling that I almost wished someone would tell me whose fault this was so I could just deck them. Being upset, angry and on the internet eventually led me to a Google search for lung cancer benefits in the Portland area, where we live. It was a relief to find Lung Love Run/Walk Portland last spring.

Riley (far right) and the Lung Love Run/Walk Portland committee at last year's event.

Riley (far right) and the Lung Love Run/Walk Portland committee at last year’s event.

At last year’s event we managed to have the largest participating team. It was easy to rally that many people–it was for my mom. She is one of those people you root for and love right away because you know she’s doing the same for you. It was a way to show my mom and the lung cancer community that people are taking notice and care. My mom even got up and said a few words in front of the crowd.  Considering just a week earlier she was positive her treatment would have her too sick to participate, it was amazing to see her in the sun on stage saying inspirational amazing things over a freaking microphone!

For completely selfish reasons I wanted Lung Love Run/Walk Portland for my mom. I wanted her to feel as much love and support as possible. To see her impact on others and their impact on her was something I hadn’t even considered. It was a powerful and positive day and I want many more powerful and positive days for her and everyone else impacted by lung cancer.

I’m finding that choosing hope and choosing positivity are important decisions to make each day. It’s not choosing to be ignorant or ignoring reality, but just deciding that you’re going to be positive. Being sure to lean on whatever it is you hold onto spiritually and your community helps. Just staying plugged in to your family and your community is important. You need them and they need you.

Join me, my family and our extended lung cancer community in the Pacific Northwest to walk with purpose at Lung Love Run/Walk Portland on June 1. Register today!


If you are an East coaster consider joining us for Lung Love Run/Walk Philadelphia at the Philadelphia Zoo on May 1. Learn more!




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 support@lungcanceralliance.org.