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.