By any measure, lung cancer patients have it rough.
But Maryland resident and special education teacher Montessa Lee has been through a particularly arduous ordeal. In September 2006, she experienced pain in her rib cage and sought medical care. Told she had inflammation, she was given medicine for her pain. But the pain returned. At her next visit, she was diagnosed with bronchitis and given an antibiotic. But by Thanksgiving, the pain returned. This time, she went to the ER and an x-ray revealed a 15-centimeter tumor in her lung.
How this cantaloupe-sized mass eluded previous doctors and why a chest x-ray was not ordered remains a mystery to Montessa. She was left to pick up the pieces of her shattered life when she was informed she had small cell lung cancer and that the prognosis was dismal.
In 2006, there were few effective therapies offered for patients with small cell lung cancer. Small cell lung cancer accounts for about 15 percent of all lung cancer cases and the tumors tend to be more aggressive and metastasize quickly. Even today, the five-year survival rate for patients with localized tumors is 29 percent but drops to 3 percent for tumors that are diagnosed later, after cancer has spread.
"I was angry with the fact that there was a lack of funding for lung cancer and at that time, the prognosis, treatment options, and survival rates had not changed over the course of several years," she said.
Montessa soon learned that her case was more complex than normal. The larger tumor was dangerously close to her pulmonary artery, making surgery a risky proposition. Like many small cell lung cancer patients, ultimately surgery was ruled out because there could be no guarantee her cancer was limited to just one tumor.
As a spiritual person, Montessa did not accept her medical fate without a fight.
"I've always considered myself a supporter of underdogs, which is why I enjoy teaching children with special needs," she said. So, she took up the challenge of her own medical condition and found an oncologist to treat her. At the same time, she poured herself into education of small cell lung cancer, reading journal articles and research and joining advocacy efforts.
"I was angry about the diagnosis and had ordered boxes of research on lung cancer and signed up with several advocacy groups," she said. "I wrote my congressman to encourage more research dollars be directed to small cell lung cancer and I became a patient representative for the Food and Drug Administration."
At the same time, she began treatment for her lung cancer--a grueling eight cycles of chemotherapy and three weeks of radiation. Fortunately, her tumor responded to the combination therapy and the tumor shrunk dramatically.
After her treatment concluded, Montessa transitioned to a more vocal participant in lung cancer advocacy, making appearances, talking to patient groups and taking up writing.
Montessa has passed her five-year survival mark and chronicled her lung cancer treatment journey in a book "He Whispered Life," published in 2015. Though technically cancer-free, her post-treatment life is still full of doctor's appointments and risk tolerance.
"I discovered that even though I beat cancer, the side effects of the treatment linger on," she said. For instance, cancer patients who undergo radiation are at higher risk for breast cancer as well as neuropathy. She frequently experiences shortness of breath.
While Montessa's message resonates with all cancer patients, at the IASLC Small Cell Lung Cancer Meeting, she will be addressing doctors and researchers. Her message?
"Don't forget about us (small cell lung cancer patients) and 'you can focus on small cell lung cancer,'" she said. "We do matter."
Montessa will tell her story to the attendees at the IASLC Small Cell Lung Cancer Meeting on Wednesday, April 3rd in New York City.