A German Perspective on Lung Cancer

Our summer intern from Germany, Daniel.

Our summer intern from Germany, Daniel.

Let me be honest, I never believed in charitable organizations. When you come from Germany like I do, most things are provided by the state, be it universal healthcare or other government programs that will help you along the way should you ever struggle in life without having anyone to turn to. Therefore, I do believe that we are responsible for our brothers’ and sisters’ well-being and that we should care for one another, and that the government can be a means to that end. So why am I doing a placement here at Lung Cancer Alliance, you might rightly ask. Am I not contradicting myself? I would disagree, and the reason I would disagree is stigma!

Imagine you had a universal healthcare system and government programs that would be equipped to deal with any issues societies and individuals may encounter in their lifetime. These laws and regulations would still be made by people in parliament and governments. This is the crux of the problem, because stigma does not disappear once you enter the corridors of power. It follows you all the way, as I experienced first-hand on my first day on Capitol Hill.

It is this stigma of self-infliction that everyone affected by lung cancer, as well as their family and friends, have to deal with day in and day out. By the way, just to be very clear here, what does it matter why someone has this horrible disease? The all-important question is: does he or she need help? This is the reason I wanted to intern at Lung Cancer Alliance. That is how I grew up, and what my parents taught me: if you have the ability to help someone, in any shape or form, small or big, help those who don’t get much help from anywhere else. And for this reason, I do believe in Lung Cancer Alliance.

-Daniel, LCA Summer Intern

 

 

Continue to help us help others! Consider a donation today.

Somebody

Chris Newman

Lung cancer survivor and activist, Chris Newman

 

Are you or a loved one a lung cancer survivor? Have you lost someone to lung cancer?  Do you feel stigmatized, shunned, invisible, powerless?  Do you feel like you can’t possibly make a difference?   I did.

When I started this lung cancer journey, I had been pretty cynical regarding my ability to affect any kind of real difference.  You see, in December 2009 I became a Nobody.  I became an Invisible.  I was in the local emergency room for pneumonia when a nurse entered the room and informed me that my x-ray showed a very large mass and several smaller ones which was “almost certainly advanced lung cancer” and that “it does not look good.”

She immediately followed by asking if I had ever been a smoker, then coldly responded “Well then, you took a calculated risk and lost, didn’t you?” and walked away.  The emotionally devastating effect of those words was profound. I was to blame for my cancer, having brought it upon myself. I was unworthy of sympathy or compassion. I felt judged, shunned, ashamed, terrified and alone.

I would soon discover that I, and those like me, were also regarded as being unworthy by our own government, as stigma associated with lung cancer translates into a massive inequality in research funding   Our government representatives appear quick to align themselves with funding for breast cancer research, which carries with it high public approval ratings. With lung cancer – not so much.

Isn’t it time we refuse to be treated as invisible nobodies who can be easily ignored.  Isn’t it time we demanded to be noticed, acknowledged, respected? Isn’t it time we shouted from the rooftops that 1 in 14 of us will be diagnosed with lung cancer, that it is the leading cause of cancer death and 2nd leading cause of death from ‘all’ causes, that ‘anyone’ can get lung cancer regardless of their smoking habits!

To lift the crushing weight of stigma, obtain much needed research funds, and see lung cancer survivors treated with the same degree of compassion and dignity afforded sufferers of other cancers, we need to become visible and to be heard!

I saw a quote from Maya Angelou:  “I can be changed by what happens to me, but I refuse to be reduced by it.”  That quote really hit home for me. I realize now that, even in these times, each one of us truly can make a difference, and ‘together’ we can make change. It reminds me of Buddhas’ observance that thousands of candles can be lighted from the flame of a single candle.

Lung Cancer Alliance’s Lung Cancer Summit provides us with a vehicle to do just that – give people who felt they had no voice, no political power, and overlooked by society, a powerful vehicle to come together, be heard and play a part in effecting real change within our legislature.

When I received an email from Lung Cancer Alliance inviting me to attend their summit, I went to their website to read up. I feel energized and empowered by this wonderful opportunity to make a difference, and am grateful and honored to be given the opportunity to participate in meeting with Congress for much needed increased funding for lung cancer research.

It is not only a powerful vehicle to accomplish much needed change, but returns a sense of dignity, value and power to lung cancer survivors like me.

I hope you will join me and add your voice!

Chris Newman, Somebody

Registration for the Summit is open until August 15th! Spots are limited so sign up today! 

You can sponsor Chris and other survivors and help them attend the Summit. Every little bit helps us bring more lung cancer survivors and their loved ones to DC for the experience of a lifetime. Consider a donation today!

Why Volunteering is for Me

Harvey standing outside his house in New York

Harvey standing outside his house in New York

Why Volunteering is for Me
by Harvey Heilbronn

Learning that I had lung cancer, my mind focused inward. I asked myself two questions, “How did I develop this disease and how did I gain membership in a club to which I did not want to belong?”

Passing time changed my thoughts from inward self pity to researching possibilities of help. Many options were found. I contacted organizations such as the Lung Cancer Alliance for information on my disease. People to whom I spoke were extremely helpful and understanding. The information provided made me feel powerful fighting this disease.

Speaking with Lung Cancer Alliance’s dedicated personnel made me want to help other lung cancer patients. I decided to participate directly to improving quality of life. This changed my focus and enabled me to use my experience to benefit others. Helping other lung cancer patients shaped the positive attitude that I have about my situation.

Hopefully my experience will inspire others to be positive in their own fight against this disease. As I made personal progress, I increased the amount of volunteering with this organization. Hopefully I can inspire other lung cancer patients to volunteer.

I became a member of an eight week nationwide telephone panel of people at various stages of this disease sharing their weekly experiences. In cooperation with the panel leader, I volunteered to research lung cancer developments that might be useful to other members. The chance to share information and experiences was invaluable.

Currently, I am a telephone buddy to a lung cancer patient. The chance to talk and share experiences is mutually beneficial. Recently, I participated on a panel sponsored by a large drug company wanting to learn about lung cancer patient experiences in order to target drug research that would benefit the greatest amount of people.

Lung Cancer Alliance knows that I am always available to volunteer in any situation. I will do whatever I can to help make someone’s life with lung cancer better.

Harvey is a Lung Cancer Alliance Phone Buddy

Special Talents of LCA Staff

We have some pretty talented and unique people on staff at Lung Cancer Alliance. We asked everyone one to share their special talent. Check it out!

Kristen

 

 

Kristen, Events & Volunteers Coordinator: Competitive water skiing! I used to compete in college and was ranked 16th in the country in 2011 for Jump at the collegiate level, but now I just water ski for fun.

 

 

 

Kenny

 

 

Kenny, Policy Coordinator: I love musical theater! I played one of the lead roles in RENT when I was in college. I was also in the marching band in 8th grade, where I played the saxophone and xylophone.

 

 

rachel

 

 

Rachel, Administrative Assistant: I love to paint! This photo is of a mural I painted in my old co-op in Michigan.

 

 

 

 

football

 

 

Lanni, Sr. Manager of Events & Volunteers: I can throw a perfect spiral 30+ yards!

 

 

 

photo

 

Edy, Chief Administrative Officer: I am like the dog whisperer …dogs love me (don’t behave but love me)…with 4 great danes (and more if I could have them). I also pride myself on my baking skills.

 

 

commercial

 

 

Kay, Director of Marketing: I have an uncanny ability to recognize celebrity voice overs in commercials.

 

 

thumb

 

 

Gabby, Communications Manager: I am double jointed and have a killer hitch hikers thumb. It has taken me to some pretty interesting places!

 

 

 

 

gumbo

 

 

Tina, Sr. Adviser, Policy & Partnerships: I make PHENOMENAL gumbo!

 

 

 

tara

 

 


Tara, Support Services Manager: Falling asleep on airplanes and yoga headstands.

 

 

 

 

cordelie_3

 

 

Sheila, Special Counsel: I am pretty good at varnishing teak brightwork on our sailboat and playing bridge.

 

 

 

Gymnastics-Sport1

 

Emily, Chief Operating Officer: I competed in the 1979 Pan American Games (pre-cursor to the Olympics) in gymnastics representing the first-ever US Virgin Islands team.

 

 

What is your special talent???

Favorite Scrabble Word: D-A-D

Richard, Michael and Rachel

Richard, Michael and Rachel

Richard, Michael and Rachel

 

 

 

 

 

I will be thrilled to spend Father’s Day with the two most precious loves of my life, my children Michael and Rachel.

When I was diagnosed ten years ago, I was 44 years old and my daughter, Rachel was 14 years old and my son, Michael was 16 years old.  They learned about the fragility of life at too young an age.

With my diagnosis, I realized the hard way, growing old was no longer a guarantee but now would be a privilege. My future was out of my control.  But I knew I would do everything I could to stay alive because my children were too young to lose their dad.

There are people in this world who light up the lives of those around them. Michael and Rachel are two of those people for me. I can’t help but smile when they’re around me because they bring me so much joy. They continue to be my inspiration to do everything I can to beat this disease. I know at times they must be afraid but they continue to have the courage to live their lives to their fullest.

Michael and Rachel have shaped my life and are the fiber of my being. My favorite three letter Scrabble word will always be D-A-D.

Happy Father’s Day to all the dads impacted by lung cancer.

Life goes on…….thankfully.

Love, Richard

Richard  Heimler is our newest Board member. Consider a donation in his honor and in honor of all the fathers touched by lung cancer this Father’s Day. 

To learn more about Richard, his journey and his family, visit Richard’s Rays of Hope.

Let the Insanity Begin!

Jenny White

I was always a fan of Cinderella.  My favorite version included the talking, sewing and conniving mice that helped make her dress and changed the pumpkin into a carriage!

That’s why it’s funny to me that someone told me I’d had the “Cinderella” of lung cancer stories. There was no glass slipper and I already had my Prince Charming but it was magical or more likely a miracle.

In December 2009, I gassed myself with a noxious mixture of ammonia and bleach while cleaning our home bathroom, which sent me wheezing and coughing to my internist.  He didn’t think I had pneumonia but ordered a chest x-ray anyway.  No pneumonia but the radiologist noted a “nodule” in my right upper lobe.  PET scan was negative so obviously I had breathed in something that had calcified and was now showing on an x-ray.  On the advice of my doctor, over two years I had a series of CT scans to make sure there wasn’t anything growing in there.

March 2010 CT scan unchanged.  September 2010 CT … nodule had grown by 30%.  Wuh, what?

One second opinion, two surgical consults and one VATS surgery later, that nodule turned out to be an EGFR gene mutation positive, adenocarcinoma.  I am so grateful that today, over three years later, I am still lung cancer free.  I’m also free of the right upper lobe of my lung but, hey, I learned I still had four others!  Had I not gassed myself, well who knows?

I very quickly learned that I was a minority in the world of lung cancer patients.  I say minority because mine was found in stage 1A.  More often than not, lung cancer is not found until stage 4.  The more I thought about it, the more this fact bothered me.  I felt a passion rising up in me to be a voice for all the voices silenced too soon and too often.

I was so disappointed to find that there was no pink army to join in the fight against lung cancer.  Actually it wasn’t disappointment, it was anger and frustration.  It was at that point that I found Lung Cancer Alliance and partnered with them to bring the first national chapter of a lung cancer organization to Tennessee.  That was August 2012.

For me, the hardest part of creating a lung cancer support community is connecting with lung cancer survivors.  It’s been my experience that the smoking stigma associated with a lung cancer diagnosis causes the smokers and former smokers to retreat while those who were non-smokers don’t know where to turn.  Our hope is to reach everyone whose life has been interrupted by lung cancer with support and compassion and raise awareness in Nashville about lung cancer–the disease.

So I thought, why not raise some awareness by bringing Team Lung Love to the Women’s Half Marathon and 5K to Nashville in September. I envisioned a sea of Team Lung Love runners and more cheerleaders along the course than any other running group!

Then I thought, why don’t I run the 13.1 miles for lung cancer?!?  I ran the Women’s Half Marathon back in 2010.  It was just 10 days before my surgery and I remember thanking my right upper lobe for its service, just in case.  Why not do it again?!?

I’ve walked a half marathon since then.  It took me four hours!  That’s just way too long to do anything!!  My time in 2010 was 2 hours and 45 minutes.  I’m going to try and beat it this year!! Let the training (insert insanity) begin!!

Jenny White, lung cancer survivor
Chapter Director for Lung Cancer Alliance- Tennessee
You can support Jenny’s run here!

Making Mother’s Day Special

Diane Legg_mother's dayWhen I was diagnosed with lung cancer 9 ½ years ago, my biggest concern was my 3 boys, ages 8, 6, and 1.  Being a mother has always been my most important calling in life and I couldn’t imagine not being there to see them reach certain milestones, grow into young men and be parents themselves.  I quickly learned that in order to “live well” with stage IV lung cancer, I needed to stop worrying about the future and what I might miss and instead focus on the present and living in the moment.  This would allow me to really enjoy every minute with my boys; making memories that we all can cherish.  That is why every day is “Mother’s Day”, celebrating each day I get to spend with my family.

In one month, I will celebrate with my oldest son, Dean, as he graduates from high school and readies himself for college.  This past year of college applications and campus visits has been another bonding experience for Dean and me; a life event that I was not sure I’d get to experience when I was first diagnosed.  It’s an incredibly proud moment to see your son grow into a respectful young man and witness this coming of age…a rite of passage as he graduates from high school and heads off to college.

Will I see my other sons graduate from high school or see Dean graduate from college?  I hope so, but I have learned over the last 9 ½ years that there are no guarantees for any of us, with or without lung cancer.  I am incredibly blessed to be a mother to three wonderful sons.  This Mother’s Day, like every day, will be special to me as we will be together and I look forward to celebrating it with my family.

This blog was written by Diane Legg, mother, wife, sister, daughter, advocate…lung cancer survivor. 

We Must Make Our Voices Heard – Defend Seniors’ Right to Life-Saving Lung Cancer Screening

Last week, an advisory panel was convened by the Center for Medicare and Medicaid Services (CMS) to consider lung cancer screening for Medicare beneficiaries age 65 to 80.  This panel, which offers non-binding advice to CMS, is referred to as a “MEDCAC.” None of the 14 panel members had direct experience with lung cancer screening and the committee was chaired by a doctor with an extensive anti-screening record.  We were deeply disappointed by the process.

Recall from my earlier comments that late last year, the United States Preventive Services Task Force (USPSTF) completed its two-year review of evidence related to lung cancer screening and recommended that former and current heavy smokers between 55 and 80 undergo annual lung cancer screening. That recommendation by the USPSTF now makes lung cancer screening an Essential Health Benefit pursuant to the Affordable Care Act (ACA).  By this time next year, nearly all private insurance plans will be required to provide coverage for lung cancer screening — without cost share or co-pay –for the USPSTF recommended population between ages 55 and 64.

Regrettably, because of our MEDCAC experience, I cannot help but worry that Medicare coverage for members of the USPSTF recommended population between ages 65 and 80 could be at risk.  This is especially troubling because the majority of lung cancer cases are diagnosed in people over age 65.

As an invited speaker at the MEDCAC meeting, I had the opportunity to bring the patient’s perspective before the panel. I was joined by leading experts in the field of lung cancer screening and management including radiologists, thoracic surgeons, a physicist and oncologist, a health care economist, the chief medical officer from the world’s largest equipment manufacture and perhaps most compellingly, nurse coordinators from two of our Screening Centers of Excellence. Collectively, we painted a vivid picture of our direct, hands-on experiences and showed that lung cancer screening is already saving lives every day and that it can be implemented responsibly, safely, cost-effectively and equitably in community settings across the country.

Despite all of this testimony and the mounds of evidence submitted to the panel prior to the actual MEDCAC meeting, I was stunned by the ill-informed comments from some panel members. Those comments served as important reminders that not everyone is as current, well-informed or experienced in screening management as we are.

So what happens now?  As I said in my MEDCAC testimony, for too long, a black cloud of despair and indifference has hovered over our community.  But now, we have real hope for survival.  And we are not going to let anything stand in our way!

This is just another bump in the long road that we have already successfully traveled together.  We will continue to work with the amazing teams of health care professionals who are in the real world, working in real time, to help real people advance responsible screening across the country.  Of course, we will work with you, too.  In fact, we need your help now more than ever!

We must take our message directly to the President and let him know what’s at stake.  Failure to provide Medicare coverage for lung cancer screening will mean that this lifesaving preventive service is an Essential Health Benefit for some, but not for our seniors.  It will result in a patchwork healthcare system and lead to the ludicrous situation where someone could have coverage for screening at age 63 and 64, but be denied coverage at 65.  It simply makes no sense.

We have created an online message that lays out the solid case for lung cancer screening for our at risk seniors. We ask that you CLICK HERE to sign it today. And please, spread the word!

Thank you,

Laurie

A Message on Lung Cancer Screening and What is at Stake for At Risk Seniors

We have reached an exciting and critical stage for the lung cancer community. In just a few days, the Centers for Medicare and Medicaid Services (CMS) will hold a public meeting to consider national coverage for lung cancer screening for high risk individuals who fall within these service populations. This meeting will allow experts in the field an opportunity to review evidence, present data, discuss technology updates, showcase responsible screening already underway in medical centers nationwide and make the case for full coverage for our seniors at high risk for this disease.  This is the final step to the goal we have long been fighting for – government’s backing for this life-saving benefit.

I feel so privileged to have been invited by CMS to speak before the panel on behalf of the people -those behind the numbers and data – that stand to benefit most from this proven benefit.  Their voices must be heard and not be over shadowed by debates about percentages and economic modeling.  Too many lives hang in the balance.

We clearly have scientific evidence.  The National Cancer Institute’s National Lung Screening Trial proved that CT screening works and that it leads to early diagnosis which is more treatable and curable.  The final hurdle now is making sure nothing stands in the way of accessing this life-saving benefit for all who are at risk – and since the majority of lung cancers are diagnosed in people age 65 and older – this falls squarely on CMS to support for our seniors.

We also have best-practice care underway through our National Framework of Lung Screening Excellence and Continuum of Care.  Upwards of nearly 180 hospital centers across the country have adopted these guiding principles and are showing that responsible care can be delivered in the real world – real time — to real people.  Over half of these hospitals are community based – again proving that you don’t need to be a large academic medical center to screen those at risk responsibly.    I say BRAVO to these medical teams who have not waited – debated – or showed continued indifference to the massive and tragic impact of this disease.  They have rolled up their sleeves and are getting the life-saving job done – well and right – right now.

But beyond the life-saving benefit of screening consider how it will help us accelerate research into all aspects of the disease.  Lung cancer screening will provide researchers with much greater access to early-stage tumors and other biomarker samples that we have needed for so long to help us look at lung cancer at its beginning – not later stage.  This will advance research that ultimately could lead to finding cures for all types of lung cancer. This is a huge moment, certainly for the lung cancer community and for the larger cancer community. There is no downside to properly conducted lung cancer screening.

The stakes are high as we enter into the final decision period for CMS.  Our seniors have a great deal at stake.   But we have faced down every challenge thus far and have continued to outflank the naysayers.   I pledge to you that we will never back down until this final hurdle is passed – that coverage and reimbursement is provided to our seniors at risk and that they have equitable access to responsible screening.

Together we can achieve the ultimate goal of saving lives and increasing our army of survivors!

Best, Laurie

To Touch Just One Person

Diana_Phone-Buddy2Diana lost both her mother and brother to different cancers. She dedicated herself to various cancer organizations, helping others who had been through her experience. About nine years ago, Diana went in for a routine doctor’s appointment that resulted in a stage 3 lung cancer diagnosis. Now in remission, Diana focuses her efforts on LCA’s Phone Buddy program, one of the only lung cancer specific peer-to-peer support programs in the US. We are inspired by and grateful for Diana’s strength and dedication to the lung cancer community.

“In 2005, I was moving from New Jersey to Tennessee and called my doctor for a refill of blood pressure medicine. Right before my doctor’s appointment I began to have a pain in my back. Despite trying to ignore it, my husband convinced me to tell my doctor and I soon found myself getting a chest x-ray.

The chest x-ray showed that I had lung cancer and doctors told me I had a 15-20% chance of survival. I was in shock!  Although I smoked two packs a day for 29 years, I quit smoking 17 years ago and never considered lung cancer a threat. I am incredibly lucky to have talked to my doctor when I did.” (Under current guidelines Diana could have been considered a candidate for lung cancer screening with a low dose CT scan. Find out today if you or someone you love is at risk for lung cancer and get a scan.)

“Now, nine years after my diagnosis, I am happy to say I have been in remission for two years and dedicate my time to helping others who are facing what I once faced.”

“Having lost my mother and brother to cancer, I was always involved with various cancer “buddy” programs. Once I was diagnosed with lung cancer, I started to realize that there are limited support programs for the lung cancer community. In my search for resources I came across LCA’s Phone Buddy program, recognizing how comforting it would have been to have that resource while I was going through my treatment.”

“I became a Phone Buddy to provide hope and support to lung cancer patients. By telling them my story, I can show them there are long term survivors out there and lung cancer is not a death sentence.

“I felt very lucky to have my husband as a strong support system during my lung cancer journey. I have found that some of my “buddies” don’t have that kind of support and to them I might be all they have.  I give back because so much had been given to me when I was going through my cancer.”

“The people I connect with have a desire to talk and it is my job to listen and provide support. We, as people, need to talk. This is how we will raise awareness for lung cancer, advance research and increase funding.”

“I am always so impressed with the positive attitudes that these people keep while facing such difficult circumstances. They make me feel better…sometimes I think they encourage me more than I encourage them.  I figure if I can help just one person than I am making a difference and it is worth it.”

To find out if you are at risk for lung cancer click here.

If you are interested in becoming a Phone Buddy or want to learn more, email support@lungcanceralliance.org.

 

 

We remind you that we are here to help. For answers to your questions, for free support services or to get involved and make a difference call our toll free HelpLine: 1-800-298-2436 or email info@lungcanceralliance.org.