Saving Young Lives

She asked me to sit down.  I could tell something was not right by the sympathy exuding from her eyes.  “We received your CT Scans…you have a tumor in your right lung, and it appears to be cancer.”

The word “cancer” punched me in the stomach.  I could barely catch my breath.  Fear raced through me.  I started to cry.   My mind panicked.  How will I tell Miles?  My family?  Will I get to have children?  I am only 28 years old…am I going to die?

One in 14 Americans will be diagnosed with lung cancer in their lifetime.  More than 228,000 people will be diagnosed with the disease in 2014.  Lung cancer is the number one cancer killer, and the second overall cause of death in the US (behind only heart disease).  This disease is a serial killer.  It threatens all…no matter what your age, gender, race, or location.  Yet somehow it is able to kill in relative anonymity and without punishment.  It is not plastered on the news.  Funds for lung cancer research lag far behind other causes and sadly its victims are often ignored or even blamed.

For years Bonnie J Addario and her foundation, the Bonnie J. Addario Lung Cancer Foundation (ALCF), have been giving a voice and a plan of action to lung cancer patients.  The ALCF now is ready to take another step toward putting an end to this disease.  The ALCF is funding the Genomics of Young Lung Cancer (GoYLC) study to stop an alarming trend in lung cancer: young lung cancer.

Young lung cancer diagnoses are unfortunately on the rise.  Each time I walked into a meeting with an oncologist or surgeon following my diagnosis, I was told they were starting to see more and more young patients like myself.  Therefore, it was not surprising to learn that this year the number of patients diagnosed under the age of 40 will increase to nearly 7,000.  These patients will be mostly healthy, athletic, never-smokers – hardly the demographic to be considered at risk for a life threatening disease.  ALCF is not willing to accept the diagnosis of these patients as simply unlucky.  For the first time ever, this group will be studied with a systematic approach to learn why more and more young lives are being cut far too short.

The study is happening during a thrilling time in lung cancer research.  For nearly four decades, lung cancer survival rates have been stagnant around 15%.  In the past decade though, research into the genetic markers of lung cancer tumors has led to enormous breakthroughs.  Genetic mutations like EGFR, ALK, ROS-1 and their respective targeted drugs have been discovered.  Advanced stage patients who have tested positive for these mutations no longer have to undergo low response rate chemotherapy (traditional treatment), but rather can take a less taxing, higher response rate targeted drug.  It has saved countless lives.  Most importantly, it shows that we are finally on the cusp of understanding how to defeat this disease.

The Addario Lung Cancer Medical Institute (ALCMI), the sister organization to the ALCF, is going to apply this same targeted therapy strategy in the GoYLC.  Young lung cancer patients’ tumors will be collected and studied.  With the backing of USC and the Dana Farber Cancer Institute, ALCMI hopes to find genetic markers and connections among the tumors, which would lead to more effective treatments and a better understanding of who is at risk.

I am beyond excited for this study.  Ever since I started dedicating my time to ALCF I have been inundated with calls from newly diagnosed young lung cancer patients.  It has been both heartbreaking and rewarding.  These are young, healthy people who had their entire lives ahead of them until they, too, had a similar conversation with their doctor.  Just last week I had to tell a 22 year old, recent Cal Berkeley graduate who had just climbed Mt. Kilimanjaro but then received a Stage IV diagnosis, that she was in for the biggest uphill battle of her life.  In my fight, I have been a firm believer in a positive mindset and the overall power of mind over body.  However, I am also a believer in science.

The GoYLC study is about using science to finally get some answers.  Personally, I want to know why Natalie DiMarco, a 32 year old mother of two, got this disease.  I want to do more than just run a 5k each year in Jill Costello’s honor…I want us to learn from her diagnosis and to never let it happen again.  I want to be able to tell the next 22-year-old patient I meet that we know exactly how to defeat her cancer.  The GoYLC study is launching for this exact purpose.  With USC, the Dana Farber Cancer Institute, and the Silicon Valley based duo of ALCF and ALCMI, I am confident this study is going to improve treatments and save lives.

What you can do:

For those of you non-lung cancer patients (and hopefully that is most of you!), I strongly encourage you to donate to this ground-breaking study.  DONATING can help save the life of anyone you know that has lungs (or even one lung, in my case 🙂 )

We also need patients diagnosed under the age of 40!  If you are willing to participate, it is quite simple – all we need are some tissue slides and a blood test.  In the US, for more information please contact Steven Young, president of ALCMI, at (203) 226-5765 or info@lungcancerfoundation.org, or visit the GoYLC website.  Lung cancer patients living in the US will not be required to travel to any of the above institutions in order to participate.

4th of July Anniversary

I was diagnosed just before Miles’ and my 2nd wedding anniversary. We were overjoyed this year to celebrate our 4th anniversary on the 4th of July, and look forward to many more anniversaries to come. The GoYLC study aims to help other young lung cancer patients reach important milestones in life, too.

Much love. Live in the moment.

EmBen

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4 thoughts on “Saving Young Lives

  1. Atta girl Emben! Your MIL and I are Inspire friends and, through her thoughtful posts, your influence is very powerful there. I’ve talked with Andy about participating…will let you know.

    Big Daddy

  2. So inspiring… EmBen keep smiling. It’s infectious and impactful. What a strong, positive role model you are for all.

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