Stories of Hope

Carol Sayles Diagnosed in September 2004 at age 54 Stage IV adenocarcinoma "I am committed to creating awareness of lung cancer in women; to lobby for research dollars to develop new lung cancer treatments; and to advocate for lung cancer patients."

In October of 2004, I began to experience intermittent mid-back pain that I associated with my international travels as director of International Health Services for Children's Hospital Boston. I sought treatment from my primary care physician, was examined, and subsequently given medications to control the pain.

In February, the pain escalated, but I continued to work and travel. In March, my back actually fractured (although I did not know it at that time), and again, I sought medical care, and was prescribed different medications. I also began physical therapy, but the pain increased to the point that I tearfully requested an MRI. May 18, 2005, I was summoned to my primary care physician's office and told that I had "tumors in both lungs, tumors on my spine, they thought it was lung cancer, it was metastatic disease and not curable". And, my back was fractured at T-2. I had no cough, no swelling of my head and neck, no shortness of breath, no bloody sputum (all symptoms of lung cancer)-only severe mid-back pain.

I spent the first 10 years of my healthcare career working at M. D. Anderson Cancer Center in Houston, Texas. I understood my diagnosis, and I did not need an explanation of metastatic disease to know that I was in a lot of trouble. I had worried over the years about breast cancer, and I had worried about melanoma (growing up on the sunny plains of West Texas), but I never gave lung cancer a second thought, despite the fact that I had severe chronic asthma and had been told in 1998, that I had Chronic Pulmonary Obstructive Disease (COPD). I didn't smoke and none of my friends smoked. However, I grew up in a household of smokers, I even smoked recreationally in my teens and early 20's. More importantly, the first 10 years of my working career were spent working for an international airline as a flight attendant. I flew internationally during the mid 70's and 80's when the cabins were filled with cigarette smoke.

My diagnosis was Stage IV metastatic adenocarcinoma of the lung. I was 54 years old. There aren't a lot of options for people with my diagnosis, and I already knew that "standard therapies" would only get me so far. Clinical trials offer people like me the most hope. After my surgical biopsy which confirmed the pathology of my tumor, I consulted with oncologists here in Boston and was told about Tarceva, an epidermal growth factor receptor drug, one of the new "targeted mono-therapies". I sought a second opinion in Texas, had the pathology reconfirmed, and was also told Tarceva offered the best hope.

Before I could begin treatment with Tarceva, the pain in my back escalated. I had spinal cord compression and was in danger of irreversible paralysis. I had 10 radiation treatments to the spine which brought immediate relief, but delayed my Tarceva clinical trial by another 5 weeks and my cancer had progressed to my liver.

In July, 2005, I finally entered a Phase II clinical trial for women, non-smokers with advanced Non-Small Cell Lung Cancer. In September, I had my first CT scan and my primary tumor had shrunk 60-65%. That was almost 15 months ago. The metastasis in my liver disappeared after 4-6 months on Tarceva, my lungs cleared substantially, the primary tumor continued to shrink and the bone metastasis remained stable with new bone growth. I continue to undergo a CT scan every eight weeks, and I continue to do well on Tarceva. I hope to continue on Tarceva for many more years, or until the wonderful clinician researchers develop something better.

I have just taken leave from my job and am committed to creating awareness of lung cancer in women; to lobby for research dollars to develop new lung cancer treatments; and to advocate for lung cancer patients. Whether one smoked 30 years ago, never smoked, or currently smokes, is irrelevant. Lung cancer has proved to be a very indiscriminate disease and a very effective killer.

In 1971, the United States began the war on cancer with the passage of the National Cancer Act. Despite the progress that has been made in some types of cancer, the same cannot be said for lung cancer, where research funding remains woefully inadequate, lung cancer screening is virtually non-existent and survivorship low. Today, unfortunately, there are many stories like mine and we are all the faces of lung cancer.