“My beloved mother was diagnosed with Stage IIIb non-small cell lung cancer in early June, 2012,” says Deana Hendrickson. “I knew virtually nothing about it…was heartbroken, and frankly angry, to learn that over half of those with lung cancer die within a year of diagnosis.”
The estimated new cases and deaths from non-small cell and small cell lung cancer combined this year are 228,190. Deaths from lung cancer are estimated 158,480. For both men and women, lung cancer is the leading cause of cancer deaths in the United States, claiming more lives each year than colon, prostate, ovarian and breast cancers combined.
One reason for the high mortality rate is that lung cancer is difficult to catch early. Twenty-five percent of people who are diagnosed have no symptoms at all: the cancer is first discovered on an X-ray. In others, coughing or shortness of breath are ignored or believed to be symptoms of flu or allergies. Often when symptoms become more severe, the cancer has spread.
Deana’s research also revealed that the 5-year survival rate for lung cancer is less than 16%. “This dismal prognosis was made even more upsetting when I discovered that lung cancer federal research funding lags far behind other major cancers despite the fact that lung cancer is the number one cancer killer,” she relates.
Deana is on a mission to educate on this deadly disease. “I was so shocked by my own ignorance that I figured others must be just as clueless,” she says. She learned from experience the terrible stigma of lung cancer, “Mom and I learned first-hand about the stigma of a lung cancer diagnosis (the “did she smoke” factor, as if it’s a deserved disease).”
Between 15 and 20 percent of people who get lung cancer haven’t smoked a day in their lives. Sadly the efforts made to dissuade cigarette smoking have had the effect of stigmatizing everyone who gets lung cancer. “I am the first to admit that I once thought lung cancer was a deserved disease. I’ve watched the commercials and read the ads linking smoking with lung cancer.” Deana has changed her mind, “Smoking cessation and prevention efforts are wonderful…Unfortunately, these programs have…had the unintentional effect of perpetuating the perception that lung cancer patients asked for it. It took much thought and soul searching for me to realize that whether smoker, ex-smoker, never-smoker, no one deserves this awful disease, nor any disease for that matter.“
Exposure to second hand smoke, radon gas, asbestos, heredity and air pollution are some of the causes of lung cancer in non-smokers.
Deana is educating through twitter, founding the twitter chat the Lung Cancer Social Media twitter chat, hashtag #lcsm. Based on the successful Breast Cancer Social Media chat (#bcsm), Deana is hopeful that the involvement of physicians, like chat moderator Jack West @JackWestMD and participant Martt Katz @subatomicdoc (who came up with #lcsm), will provide the kind of support and guidance to assure the chat is timely, supportive and accurate. “I really wanted to have a hashtag to unify the lung cancer community; a “place” where we could all be as one group.”
Deana’s determination is based in loss. “I was [my mother’s] primary caretaker,” Deana relates, She suffered terribly,” Deana remembers. Deana lost her mother just nine months after she was diagnosed, in March 2013. As she mourns she is taking action, “I’m a great believer in the power of people making the choice to do something, anything, to make the world a better place. In Judaism, it’s known as Tikkun Olam (literally “world repair” or repairing the world). That’s my inspiration.”