Diane Legg

Diane Legg and Family

When a family friend, Susan, a 43 year-old non-smoker was diagnosed with lung cancer,  I was shocked because I didn’t think that people like Susan got lung cancer. She was a very health-conscious, non-smoking, athletic person living in the clean air of Northern Vermont. It had to be a fluke – just bad luck.

Then in August of that same year, as Susan was in the fight of her life, I pulled a back muscle picking up my then one-year-old son. The doctor decided she wanted to rule out a pulmonary embolism, so she sent me for a CT scan. The CT scan showed that I had a “nodule” on my left lung. I did smoke casually when I was younger, but my doctors said that I was not at risk for lung cancer, because I did not have the “pack history” and, therefore, I shouldn’t be concerned about the nodule. Several months later, in October, when the doctors decided that this nodule was not getting smaller, a biopsy determined that I, too, had lung cancer, Non-Small Cell adenocarcinoma, the same kind as Susan’s. The difference was that my cancer was found at a much earlier stage. I had a lobectomy, in which the upper lobe of my left lung was removed, and followed it with four rounds of adjunct chemotherapy. It was during my second round of chemo that my friend Susan lost her fight with lung cancer, just nine months after her diagnosis. I was devastated.

Those of us who have been touched by lung cancer have quickly realized that not all cancers are equal. Those cancers with the largest number of grassroots advocates have received ever-increasing amounts of both public and private funding for early detection and research, accounting for steady increases in survival rates. In part because of its stigma, lung cancer research is woefully underfunded relative to its public health impact. This underfunding is greatly responsible for the dismal 15% five-year survival rate.

I realized how fortunate I was to find out about my cancer at a very early stage, a stage where I had options to choose from. Unfortunately, most people do not have that opportunity. More than 80% of all those diagnosed with lung cancer are diagnosed at a late stage and many do not survive a year. In the last four years, I have lost numerous friends to lung cancer, all blindsided by this disease. Their stories are tragic and, unfortunately, they are not uncommon.

My story is rare, since I have been given the gift of time, and with this time I have chosen to speak out about how devastating lung cancer is, and to raise awareness in order to change the face of this disease. As co-chair of the Massachusetts Chapter of Lung Cancer Alliance, I have been able to work with fellow Commonwealth citizens to bring awareness and legislative changes on a state level. Three years ago I initiated the first Shine a Light on Lung Cancer, an annual vigil held in Boston, to raise awareness for lung cancer and to remember and honor those that have been touched by the disease. In 2006, we held the vigil outside the State House, and  approximately 60 people attended. This past November, The Prudential Building, the tallest building in Boston, was lit up for the night. We drew over 300 people, including key legislative decision makers, survivors, lung cancer researchers, and the media. This year the event will be held on Thursday, November 5, 2009, and we hope it is even bigger and better!

Across the country, advocacy organizations are providing more dollars for research and  education of both public officials and the populace. In particular, Joan’s Legacy – Uniting Against Lung Cancer, is funding multiple research projects that have begun to uncover promising new treatments. And early this year The Lung Cancer Mortality Reduction Act of 2009 was reintroduced to Congress. The first of its kind, the act authorizes a comprehensive, multi-agency research effort to reduce lung cancer’s mortality. All of this represents valuable progress, but we need much more help– we need everyone to join this movement to save lives!