When they diagnose you with advanced lung cancer, of course the first terms you type into your search engine are things like “stage IV lung cancer survival” or “stage IV lung cancer life expectancy.” Your nurses and doctors tell you not to do it, but of course you do it anyway. When you find the articles, of course your eyes scan right past all the caveats and reassurances to the terrifying statistic itself: the median stage IV non-small-cell lung cancer life expectancy is 8 months. The 5-year-survival rate is less than 10 percent.
(The typical caveats and reassurances are, in fact, important, even though at the time they went in one ear and out the other. Those statistics are from 2005, before the newest treatments were available, so the real life expectancy may be longer now. Life expectancy varies enormously with type of cancer, age and general health at time of diagnosis, gender, and other factors. Most importantly you are not a statistic, but a unique human being.)
At first, when people encouraged me to be hopeful, it just irritated me, especially when I learned I didn’t have any of the three major known gene mutations (EGFR, ALK, or KRAS). When people told me their lung cancer survival stories, I would just mentally tick off all the reasons their cases were not like mine. Sure, I’d think, you’re doing great now, but you weren’t stage IV, or your cancer was operable, or you have EGFR and could take Tarceva.
I appreciated having an oncologist who didn’t try to sugarcoat anything for me. Frankly, if Dr. Saraiya had told me I would be fine or should be optimistic, I wouldn’t have listened to anything else he said after that. His estimation, based on all his clinical experience, was intentionally more vague than the statistics because he knows how hard it is to predict anything for an individual patient. He said he usually thinks of a patient’s prognosis in terms of “weeks to months,” “months to years,” or “years to decades.” He thought mine was “months to years.”
I only started believing I might live longer when I began meeting other long-term survivors of advanced lung cancer of types similar to mine. We are scattered all over the world, so the only way to meet them was through the Internet. First, through a friend who works in the pharmaceutical industry, I met someone who was diagnosed in 2007. She was dealing with fatigue, lung conditions, and side effects – but when we connected by email, she was traveling in Italy. ITALY.
She told me about a program called the Lung Cancer Living Room, organized by the Bonnie J. Addario Lung Cancer Foundation in California. It’s a monthly in-person support group, but the meetings are livestreamed, so you can watch them over the Internet. I watched one meeting, and as the camera circled the room, one survivor after another shared how long she or he had been living with lung cancer. It really did something to me, to see a roomful of survivors.
I beat the eight-month mark in August 2013, just as I was discovering my ROS status and beginning to take crizotinib. Now it’s been a year. I am daring to think of myself as a long-term survivor.
Note: Some articles I found helpful in preparing this post include http://lungcancer.about.com/od/whatislungcancer/f/stage4lifeexpectancy.htm, http://www.cancer.org/cancer/lungcancer-non-smallcell/detailedguide/non-small-cell-lung-cancer-survival-rates, and, thanks to new friends on smartpatients.com, “The Median Isn’t The Message” by Stephen Jay Gould: http://people.umass.edu/biep540w/pdf/Stephen%20Jay%20Gould.pdf