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I find it difficult to admit when I am prejudiced – to be fair no one likes to believe that they have bought into a misconception – and until my non-smoking, healthy friend was diagnosed with stage 4 lung cancer, I was blissfully ignorant of the fact that I had been completely sold on lies about lung cancer.  What is harder to acknowledge is that this ignorance, my own ignorance, has contributed to over 160, 000 deaths this year in the U.S. alone.  Why is ignorance at fault? Ignorance keeps us silent.  Silence is what keeps funding dollars from being spent on lung cancer.  Silence is what keeps the truth about lung cancer hidden.  The truth is that lung cancer can affect anyone, not just smokers.  The truth is that 80% of people diagnosed with lung cancer in the U.S. have either never smoked or have quit smoking.  Until we choose to speak up and break the silence, nothing will change and people will continue to die at a rate of approximately 438 people per day in the U.S. and approximately 1.59 million people per year worldwide. 

Is it any wonder that people who have lung cancer or who have loved ones with lung cancer are frustrated and disheartened by the lies about, and stigma associated with, lung cancer?  I am grieved about my friend Michael McCarty (who shared his story last week) and want to do something, anything really, to help.  So, I can understand how much more frustrated and grieved Phil Trahan must be feeling.  He has agreed to share his son’s story with us this week and I admire his passion to do something to make a change.

I first heard about Phil when I met with the Lung Cancer Alliance last week.  The Lung Cancer Alliance a U.S. nonprofit that is dedicated to saving lives and advancing research by empowering those living with and at risk for lung cancer. Throughout the month of November, Lung Cancer Awareness Month, they will be highlighting lung cancer survivor stories.  When they told me that Phil wrote about his son’s struggle with lung cancer, since Andy was too sick to do so himself, I wanted to personally share Phil’s words with you.

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A Front Row View of Lung Cancer Stigma

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.

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.

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There are many worthy causes to support, but today, I ask that you think about Andy and others like him.  Today we can all commit to take some action to help raise awareness for lung cancer.  Share the link to this story, wear a White Ribbon in November, visit the Lung Cancer Alliance website for information and resources, or email your government representatives and ask for more research funding and support for early detection screening.  Do something to break the silence.

3 years ago