Facing Down One of the Deadliest Cancer Diagnoses: Why Me?

Why. Why me. Why cancer. What did I do?

These are among the thousands, if not millions, of thoughts that run through the mind of a newly-diagnosed cancer patient. I know, I thought them, too.

Every year, Lung Cancer Awareness Month gives all of us who have been touched by it a chance to reflect in gratitude and renew our vow to help others face the devastating disease.

For me, the memories of those overwhelming first days are still vivid. However, I am thankful for the opportunity, as a 13-year survivor, to look back and see how much we have advanced since my very first day on my journey with this disease, when I sat in a small office, hearing words from an oncologist about a bleak future, navigating the battlefield of whys in my mind.

Lung cancer patients and their families should be encouraged; while 222,500 Americans will be diagnosed with lung cancer this year, there is a great deal of amazing work happening, with discoveries resulting from ground-breaking clinical trials being conducted all over the world and new and novel therapies being fast tracked by the FDA. THANK YOU!

While cancer researchers furiously study the reasons why people get cancer, why some treatments work on some people and not others, and how to prevent it, cancer rates continue to rise and are projected to continue to increase to alarming numbers.

We celebrate that less people are dying from many cancers, according to the National Institutes of Health. A recent study on cancer survival rates over a 40-year period indicated an overall increase in survival rates for cancers.

Unfortunately, along with brain, liver and stomach, lung cancer survival rates remain near the bottom, despite increased awareness and promotion, keeping it one of the deadliest cancers.

Whats worse is the chance of a patient surviving lung cancer in 2012 is only six percent higher than it was in 1975. Thats a whole middle-aged person ago. By contrast, the prostate cancer survival rate saw an increase from 67.8% in 1975-77 to over 99% in 2006-2012.

According to the American Cancer Society and the National Cancer Institute, lung cancer is the second-most prevalent cancer among American men and women, and the leading cause of cancer death, claiming one-in-four cancer deaths . These leading organizations estimate that 155,870 of our fellow Americans will die from lung cancer this year and 222,500 new lung cancer patients will be diagnosed. Simply, lung cancer is more common than you think, yet the chances of surviving it arent growing as rapidly as with other cancers.

That can leave a patient or loved-one in a state of hopelessness and despair. What on earth are we to do?

For one, we can talk about it. We have no problem talking openly about breast and prostate cancer. But lung cancer has remained a hushed cancer. Its time to admit that lung cancer is NOT just a smokers disease, a stigma that so far has led to disproportionately low funding for research and trials as other cancers.

We now are seeing that 80% of new lung cancer patients either have never smoked or had quit. and increasing numbers of young, athletic men and women are diagnosed with and dying from this disease. The American Cancer Society says that among non-smokers, lung cancer is still among the fatal top-ten. Among other risk factors, most researchers agree that exposure to radon gas and particle pollution is a major contributor to lung cancer risk among non-smokers. Firemen and women, veterans and others are exposed to workplace toxins everyday.

In addition, we must collectively fight for funding for cancer research.

Thanks to efforts by many fellow activists, including former Vice President Joe Biden and Greg Simon, cancer research has recently had a nice spotlight, but funding simply cannot be lost in a political fight on Capitol Hill. The nearly 40% of Americans who will be diagnosed with cancer in their lifetime, and the millions more affected by a love ones diagnosis, literally depend on it.

Because of the sheer amount of information on research, discoveries and trials, its difficult for oncologists and primary physicians to stay abreast of all the clinical trials underway for every specific type of cancer and mutation.

Patients, physicians and community hospitals, which do much of the diagnosing to new cancer patients, need the ability to be connected to clinical trials, treatments and others with the disease.

Thats where those of us who are patients can help ourselves and each other. We need to share the details of our fight, so others can benefit from what we have learned. The Lung Cancer Patient Registry , launched last year, makes this possible. It is the only worldwide database of lung cancer patients, giving researchers the ability to analyze and identify common genetic, biological and environmental denominators in patients and the treatments that are working for them.

The Registry can also be a lifeline by giving a patient with a rare disease the chance to see the details of someone across the world with the same type of cancer, along with the treatments or clinical trials yielding results.

This relatively new database empowers a patient to take some control back from their elusive and frightening diagnosis; I know from personal experience that feeling in control does not come easy when forced into a lung cancer journey. Patients can sign up for the registry online at lungcancerregistry.org .

We believe that it is going to be Patient Reported Outcomes, such as the ones in the Lung Cancer Registry, that drive future clinical trials and ultimately cures. Patients are entering their own data and then aligned with their EMRS (Electronic Medical Records) to complete the entry. The Moonshot goal is to do 20 years of work in ten, and this data will significantly add to that effort and patients will be partners in the solution.

Our researchers, physicians and caregivers are doing all they can for who fight the disease. But we can fight it too, with dialogue that can lead to more funding for a cure and the willingness to share our experiences with the goal of helping others compete with this relentless disease. Its a fight, whatever our energy level, we must engage in if we want to ultimately achieve victory for ourselves and those whove not yet but soon will be diagnosed with lung cancer.

We can lead the way to Precision and Personalized Medicine faster and better. Patients and their families, like Joe Biden, are truly the warriors who are going to lead the way to curing cancer. It is truly personal. Why do patients do this if not for themselves? For their families. What better legacy than to leave a cancer-free world to our children.