Raise Awareness from your Couch!

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November is Lung Cancer Awareness Month and this is the time of year when our community comes together in the most united way to make some noise for lung cancer! Most of the activities involve events of some kind, be it a Lung Love Walk or a Shine a Light on Lung Cancer. We encourage you to sign up for one in your community.

However, if events aren’t for you or you don’t have time to attend, you can still make a difference…from your couch. Literally!

  • Use Your Social Media to Educate Your Friends and Family – Facebook, Twitter, LinkedIn, Instagram are wonderful platforms to get messages out to the public. We have some sample Facebook and Twitter posts that you can use throughout the month or just share some of ours!
  • Send a Letter to Your Local Newspaper – Write a letter to the editor and submit it to your local newspaper. Newspapers love to receive feedback and insight from readers within the community. This platform gives you an opportunity to tell your story, share some vital statistics on lung cancer or highlight the fact that it is Lung Cancer Awareness month. Here is a template letter to get you started!
  • Join Our Community  – Stay connected to the lung cancer advocacy community by signing up for our Weekly Breather, an email newsletter. You will receive relevant news, insights and calls-to-action to guide efforts in your local community.
  • Go Shopping  – Thanks to our partners, you can now raise awareness in style! When you buy a lung cancer awareness item, a percentage of your purchase will go to helping us provide lung cancer patients and their families with free support, education and referral services. These are great gifts for loved ones or just treat yourself!
  • Help Us Help Others – Make a donation! Monetary support is the backbone of our advocacy efforts. Give what you can and invite three friends to do the same. You can donate by texting SHINE to 27722 or visit our website to donate online.

The bottom line, there are no hard and fast rules about getting the word out about lung cancer. No matter what method you choose, you are making a difference.

by Chris Davis, Media Relations Manager

Can We Talk? About Lung Cancer?

Our passionate advocate, Sheila Ross

by: Sheila Ross, 14 year survivor and advocate for Lung Cancer Alliance

A memorial showing of a 2010 documentary on Joan Rivers was aired by American Masters on September 23, nineteen days after her death.  During a sequence in which she is urging her daughter, Melissa, to stop smoking, Joan says: “I went to a pulmonary guy today…he said…more women are dying of lung cancer than breast cancer and nobody is discussing it…”

Not “nobody,” Joan. Some people are. More each year, but still not enough.  Why aren’t they?

Based on the National Cancer Institute’s most recently updated estimates, as of 1/1/11 there were about 2.9 million women then alive who had been diagnosed at some point in their lives with breast cancer. That’s 13 times more than the 219,000 women then alive who have been diagnosed at some point with lung cancer.

These 220,000 cannot do it alone. Many of them are too sick or depressed to even try.

About 160,000 people a year die of lung cancer -  70,000 of them women – nearly twice as many as breast cancer. So lung cancer has touched millions of families and friends. Why aren’t they speaking out?

Why doesn’t the 2.9 million strong breast cancer community show more empathy about the biggest cancer killer of women? Why didn’t Joan speak out when she learned the truth? She said it “scared the bejeezus out of me.” Us too.

This October, while pink overshadows the statistics and companies profit from “pinkness,” why don’t we in the lung cancer community try to get answers to those questions instead of just- as Joan would say – “b—ing.”

So, can we talk?

 

 

A Tale of Two Cancers

Pat and Mike Harrell

Pat and Mike Harrell

By: Pat Harrell, lung cancer advocate and breast cancer survivor

When my husband, Mike, retired from the Navy in 2005 after 22 years of service we figured we would settle into civilian life the way countless military families have done over the years.  Little did we know that cancer would impact our lives so soon after making this transition.

After a flu-like illness prompted several doctor visits, Mike was diagnosed with Stage IV lung cancer at the age of 46. A CT scan revealed the cancer had spread from his lungs to his brain. To add to an already difficult situation, a year later, I was diagnosed with breast cancer.

A happy couple and two cancer diagnoses. That’s where the similarities end.

Fortunately, my breast cancer was caught early and I had a mastectomy. The cancer had not spread to my lymph nodes and I did not have to undergo any chemotherapy treatments. They tell me that my cancer has a low risk of recurrence. The resources given to breast cancer survivors are unparalleled. I always felt like I knew where I could find support when I was dealing with my illness.

Mike’s journey was very different. As a non-smoker, he had to deal with the stigma that often comes with having lung cancer. During one of our first meetings with his oncologist, Mike was asked, “When did you quit smoking?” I was stunned. Even a cancer doctor assumed that his diagnosis was the result of years of smoking. My mother, a long-time smoker, also passed away from lung cancer in 2004 so I was familiar with the disease, but the tone of people who spoke to my husband led me to think that they faulted him for his diagnosis even though lung cancer can happen to anyone regardless of their smoking habits. 20 percent of people diagnosed are individuals who have never smoked.

Pat on Capitol Hill with LCA President & CEO for the 6th Annual Summit

Pat on Capitol Hill with LCA President & CEO for the 6th Annual Summit this September

Thankfully, early into his diagnosis when answers and support were in short supply, Mike heard about the Phone Buddy program with Lung Cancer Alliance. He was paired up with someone who had survived his initial diagnoses for over 5 years giving Mike hope that he, too, could fight this disease. He even wondered aloud if he could “be one of the 2% who survive.” After a period of time, Mike also became a Phone Buddy and began helping others while he was enduring his own treatments which included a full brain radiation treatment among many other physically demanding therapies.

Last March, Mike lost his battle with lung cancer after 5 years. I truly believe he gained a sense of purpose by being helped in those early days through the Phone Buddy program and later volunteering to call others dealing with lung cancer. Through my experience, I have recognized how critical hope is in the cancer journey. No matter what cancer a person has, everyone deserves hope and support.  I’m grateful for the last few years we had together and even more thankful that he ended up finding the support to deal with his own diagnosis.

I realize now that support is the great equalizer in any cancer fight. No matter the outcome, people benefit from having someone on their side. Thankfully, Mike and I both gained that even though we had different paths after our initial diagnoses. Inspired by his efforts, I have continued his commitment to the lung cancer community through advocacy work to make people, whether at home or in our nation’s capital, more aware of the needs of lung cancer patients.  More must be done, but we are definitely on the right track.

 

October is Book Month! Check Out Our Favorite Books!

Reading is a great way to relax, escape and find adventure (without exerting yourself too much). October is National Book Month and we asked the LCA staff what their favorite books are. Check out what they said!

 

 

 

 

 

Laurie Fenton Ambrose, President & CEO: The Great Game by Peter Hopkirk

 

 

 

 

 

Sheila Ross, Special Counsel: Miracle at Philadelphia by Catherine Drinker Bowen and Team of Rivals by Doris Kearns Goodwin

 

 

 

 

 

Emily Eyres, Chief Operating Officer: Catherine the Great: Portrait of a Woman by Robert K. Massie

 

 

 

 

 

Amy Copeland, Director of Medical Outreach: (Fiction) The Great Gatsby by F. Scott Fitzgerald, (Non-Fiction) The Immortal Life of Henrietta Lacks by Rebecca Skloot

 

 

 

 

 

Edy Whidden, Chief Administrative Officer: Exodus by Leon Uris

 

 

 

 

 

Tina Hone, Senior Advisor, Policy and Partnerships: The Drunkard’s Walk: How Randomness Rules Our Lives by Leonard Mlodinow and The No. 1 Ladies Detective Agency series by Alexander McCall Smith

 

 

 

 

 

Maureen Rigney, Director of Community and Support Services: To Kill a Mockingbird by Harper Lee

 

 

 

 

 

 

Tara Perloff, Support Services Manager: Half the Sky by Nicholas Kristof and Sheryl WuDunn

 

 

 

 

 

Gabby Geier, Communications Manager: The Giver by Lois Lowry

 

 

 

 

 

Chris Davis, Media Relations Manager: Song of Solomon by Toni Morrison

 

 

 

 

 

Lanni Boyd, Senior Manager of Events and Volunteers: Three Cups of Tea by Greg Mortenson and The Count of Monte Cristo by Alexandre Dumas

 

 

 

 

 

Kenny Palmer, Health Policy Coordinator: Poisonwood Bible by Barbara Kingsolver

 

 

 

 

 

Kristen McAvoy, Volunteers and Events Coordinator: The Lost Symbol by Dan Brown and It Happened on the Way to War by Rye Barcott

 

 

 

 

 

Rachel Bartolo, Development and Operations Assistant: To Kill a Mockingbird by Harper Lee

 

What is your favorite book? We want to know!

 

 

 

Chorus of Voices Grows Stronger and Louder

A Message on Lung Cancer Screening from LCA President & CEO, Laurie Fenton Ambrose

At this critical moment, the Centers for Medicare & Medicaid Services (CMS) are deliberating whether or not to offer full Medicare coverage for low dose CT screening those at high risk for lung cancer. In recent weeks, the chorus of support from the scientific, medical and consumer community has grown louder and clearer in support of full Medicare coverage for this lifesaving benefit.

Yesterday, we were joined by an unprecedented coalition of over 70 medical, professional and public health leaders on a letter to CMS that offered an approach to lung cancer screening that would assure that high quality screening for our at risk seniors would be deployed equitably and cost effectively.

This coalition letter comes on the heels of new peer reviewed research cost effectiveness studies that should finally put to rest the few remaining questions related to whether lung cancer screening for high risk seniors should be covered by Medicare:

  • Consumer Reports, for the first time ever, included lung cancer screening on its list of “recommended cancer tests.”  That list was reprinted in the Washington Post last week.  Not only did Consumer Reports recommend screening, but it also took the extra step of calling for Medicare coverage for lung cancer screening for the high risk USPSTF population.
  • The New York Times published an Op-Ed, co-authored by Dr. Andrea McKee, an expert on lung cancer screening and a member of our Medical Advisory Board, calling lung cancer screening “a significant victory…in the war against cancer.”
  • Questions about whether the profound life saving benefits of lung cancer screening applied to the Medicare population were put to rest in a peer reviewed article released in the prestigious Annals of Internal Medicine. That article specifically showed that the lifesaving findings from one of the NCI’s largest and most expensive clinical trials held true, even when applied only to the Medicare population;
  • The cost effectiveness of lung cancer screening specifically in the Medicare population was also carefully analyzed and proven in a peer reviewed study conducted by the international actuarial firm, Milliman, Inc., and published last month.

CMS should know they stand on firm ground in making their decision to support our at risk seniors. The range of voices now calling for full and equitable coverage of lung cancer screening by Medicare population is broad and diverse and included experts and advocates with proven commitments to science, data and most of all, saving lives. CMS should move forward with confidence and approve coverage for lung cancer screening without unnecessary delay.

 

A Front Row View of Lung Cancer Stigma

by Phil Trahan, Father and Lung Cancer Advocate in Louisiana

Much has been written, discussed and debated regarding the plight of people who, despite never having smoked, contract lung cancer.  Adding insult to injury, these diagnoses almost always occur at late stages, largely due to the atypical appearance of the patient.  And forgive me for piling on, but the worst is yet to come – research funding has been severely compromised because of the common perception that lung cancer is always self-inflicted by smoking.

I have a front row seat to this drama as my 34 year old son Andy works his way through Stage 4 non-small cell lung cancer.  A beautiful and supportive wife, three cute kids and an army of family, friends and strangers support Andy and keep his hope alive.  I try to do my part by researching and advocating for his cause.

Phil and Andy Trahan

Andy and Phil

Andy Trahan and Family 2014

Andy and his family before treatment in August

Recently that advocacy led me to the 6th Lung Cancer Survivors Summit sponsored by the Lung Cancer Alliance in Washington, D.C.  I must admit that I had a twinge (OK, maybe more than a twinge) of resentment as I learned that annual CT screening for smokers and former smokers aged 55-80 is the most immediate and achievable initiative of the LCA.  However, further education and awareness led me to see that early detection for those most at risk and ramped up research into the genetic origins of disease commonly found in kids like Andy are not mutually exclusive.

LCA staffer Kay Cofrancesco accompanied our group to Capitol Hill and more than a tear was shed as we relayed Andy’s story to lawmakers and their staffs.  Even more poignant was the first person story of one of our group members who also is Stage 4, also is a non-smoker, and also harbors the ALK gene mutation as Andy does.

A riveting statistic that frankly hits way too close to home for me is that, as a standalone disease, lung cancer in never smokers is the sixth leading killer of cancer patients in the United States.  I cannot help but imagine how much more robust Andy’s treatment options might be if his cancer was called “ALK Mutation” instead of “Lung Cancer.”  Indeed, the trend among professionals is toward identifying cancer based on its cause rather than its primary location.

Please allow me to throw diplomacy out the window as I close.  My son has received the shaft in that he has contracted a terribly lethal cancer.  And worse, the effort to help him has been brutally compromised by the common perception that he’s supposed to be twice his age and smoking.  By far the most promising research (and yes, gains) in lung cancer treatment, accomplished with severely limited funding, has been exactly in the area of genomics that is most helpful to Andy.  That far more has not been accomplished I will chalk up to an innocent misperception. But with the Lung Cancer Alliance as my partner, I’m starting the accountability clock right now.

Motivated By Butterflies

The last few days of my mom’s battle with lung cancer were a blur, but one image stuck with me long after the dust settled. There was a picture of a butterfly on the back of my mom’s hospital door that I noticed the day before she passed away. I didn’t think about it until I saw a butterfly on one of my runs after her death.

I was never a runner, but found a motivation inside of me I didn’t know existed when I signed up for Race for Breath in Virginia Beach, a 5K run raising awareness for lung cancer. I trained for that and never looked back, later running in my first marathon with LCA’s Team Lung Love. All through my training, I continued to see butterflies, making me feel even closer to my mom. I knew she was there, pushing me forward and supporting me.

In addition to running, I love to draw. In 2012, I came across the Lilly Oncology on Canvas, a competition that gives those touched by lung cancer an opportunity to tell their story through art, and submitted a pastel drawing and narrative (below) that symbolized my journey through my mom’s passing, my ongoing connection with her and my love of running. I was shocked when I won the contest (allowing me to donate $1,000 to LCA) and even more stunned when they decided to display the drawing as a mural in Indianapolis and Washington, DC! On August 23rd my family and I participated in the DC Hope Mural Project, sponsored by Lilly Oncology On Canvas and the National Coalition for Cancer Survivorship (NCCS), and joined the public in painting the mural of the butterfly pastel drawing in Washington DC to raise awareness, and to honor and give hope to those touched by cancer.  I feel grateful to do my small part to raise awareness for lung cancer in honor of my mom.

butterfly

When a picture of a butterfly appeared
On my mom’s hospital room door, I knew.
The next day,
My mom, a never-smoker,
Passed away from lung cancer.
Months later, I became a runner. I ran away from the grief.
One day, I ran through a path that released butterflies.
From that moment,
I started running through the grief, sometimes melting into tears.
Now I run
So I can feel my mom around me,
In every mile,
In every step,
With every breath.
I draw strength from her to keep going.
The pastel drawing reflects how running transformed me, Freed me from the grief.
I like to think that the butterflies
Crossing my path
Are my mom,
Who is always with me— Especially when I run.

Marie Sarmiento is a lung cancer advocate and based in Virginia.

39.3: A Challenge to Myself and to You

Rachel Bartolo

Rachel Bartolo

This Saturday I am running my very first half marathon. I am not a runner. Never have been, but I decided to challenge myself this fall.

I am going to run three half marathons, in three states in the next three months.

Why, you may be thinking? About five months ago I accepted a job at Lung Cancer Alliance (LCA). This new opportunity brought me from my small hometown of Tecumseh, MI (only 8,000 people) to our nation’s capital.

As part of the Lung Cancer Alliance family, my interactions with patients, survivors and volunteers in the lung cancer community have developed in me a strong passion for the cause and am using that motivation to get me through the three half marathons this fall.

Running is my tool to raise awareness and funds for lung cancer, not only through the national reach of Lung Cancer Alliance, but also within my small community back in Tecumseh.  When I first decided to turn the races into a fundraiser, with a goal of raising $3,000 ($1,000 per race) for lung cancer, my first thought was to reach out to people and businesses back home for help, not expecting a huge response. I should have known better.

After reaching out, it became clear to me where my drive to help people came from; folks back home have displayed a desire to assist in my efforts to raise awareness, and I couldn’t be more inspired. People who I have known for years and years and even people who I don’t know at all have given generously, many because they themselves have lost loved ones to lung cancer.

Through my time at Lung Cancer Alliance, I now know that we don’t all have to take on big challenges to make a difference. You can start to lift the blame, shame and stigma by talking with your friends, family, and neighbors about lung cancer.

This weekend I head to Vancouver, B.C. to run 13.1 miles, a feat I could never have imagined attempting.  Please consider giving today or sponsoring one of those 13.1 miles, in honor of the 160,000 lives we lose each year to this devastating disease.

Stay tuned for pictures from Vancouver and updates on my next two races in DC and Philly!

-Rachel Bartolo, Lung Cancer Alliance, Development and Operations Assistant

Why I Am Walking Philly!

Sarah and Andy in college

Jeff, Sarah and Andy in college

I have run a marathon, woken at dusk to support runners, hosted a 100 person gala, stormed Capitol Hill and my family and I will be attending Lung Love Run/Walk at the Philadelphia Zoo next Saturday. I do these things to raise awareness for lung cancer – a disease that kills more people than the five leading cancers combined – but is underfunded and lacks research, in large part because of the stigma associated with it.

What is my motivation? Andy.

4 years ago my college friend, who never smoked, was diagnosed with stage IV lung cancer.  He died 53 weeks later. Andy Swan, passed away at the age of 35, leaving behind a beautiful wife and 4-year-old son.  Andy was the Prop Master on the set of Criminal Minds and an award-winning director of several independent films.  To me, he was a best friend.

Sarah and her family

Jeff, Sarah and their two sons

Andy and I met at Penn State in 1993 and became fast friends.  He even introduced me to Jeff, to whom I’ve been married to for 14 years.  After graduation, Andy moved to L.A. to pursue his dream of filmmaking while I remained on the East Coast.  Life got busy and we fell out of touch, until 2009 when we reconnected over Facebook. It was a year later he would learn of his diagnosis.

In January 2010, Andy was experiencing some back pain, which was attributed to heavy lifting he had to do as part of his job.  He went in for a CT scan and was shocked to find that he had stage IV lung cancer.  Andy never smoked and was a very healthy young man.   I always thought lung cancer was a smoker’s disease, however 20% of people with lung cancer never smoked and 60% are former smokers, many of whom quit decades ago.

Andy fought bravely for just over a year and on February 8th, 2011, he succumbed to lung cancer with his wife and mother beside him.

In honor of Andy, I do everything in my power to raise awareness for the disease. Even my nine year old son has joined the cause through his lemonade stand sales.

Join me and my family on Saturday, August 16 for Lung Love Run/Walk Philly, as we walk in honor of Andy and all those impacted by the disease. Hope to see you there!

- Sarah Evans-Brockett, Team Lung Love member and lung cancer advocate

Register for Lung Love Run/Walk Philly today!

Find a Lung Love Run/Walk in your community or start your own!

 

Don’t Let Anxiety Stop You

As more people at high risk for lung cancer are screened for the disease, many will discover they have lung nodules. Depending on the size and shape of the nodule, some will be monitored over time and some may need further testing.

Finding out there is a nodule in your lung can make some people anxious. Most nodules are not and do not turn into lung cancer but it can be anxiety provoking to know something is there. And when a nodule needs further testing, it may turn out to be a “false positive.”

In fact, about 15% of people who are screened will need additional imaging or testing to rule out cancer. For those, in the end the nodule is not lung cancer but the time it takes to find out can be filled with anxiety.

It’s important to note that everyone is different and not everyone feels particularly anxious if something is found in their lung. Some people are naturally more anxious and having a nodule found can add to that. For others, it’s a relief to know that their nodule is being monitored or investigated by their medical team.

Other things to keep in mind:

  • The 15% false positive rate for lung cancer. There is a 50% false positive rate for mammograms over ten years. That means that in the course of getting mammograms for ten years, half of the women screened will need to undergo further imaging or testing to rule out breast cancer.
  • There is new evidence about anxiety related to screenings for both lung and breast cancers. Two studies published within two months of each other reached the same conclusion on the effect of false positives in breast and lung cancer screenings: They resulted in no long term anxiety or lower quality of life.

If your scan found something that needs to be watched or tested and you feel anxious about it, here are some things to make sure your doctor does which may help lessen your anxiety.

  • Lay out the follow up plan, including the timing of tests or appointments you will need throughout that period.
  • Help you to understand what your risk of having lung cancer actually is.

Screening for those at high risk for lung cancer is incredibly important. It is equally important to follow through and continue the screening process. Most people who are screened will not have lung cancer but if it turns out you do, or if you have questions about nodules or the screening process, call our toll-free HelpLine at 1-800-298-2436. We are here to help.

Maureen Rigney, LCSW
Director, Community and Support Services