I’ve been fortunate to overcome the immediate challenge of having advanced lung cancer and wondering how much time I have left. Now the question is, how do I proceed toward realizing my hopes and ambitions in a responsible and productive way?
—Paul Kalanithi, MD
Editor’s note: We regret to announce that Paul Kalanithi, MD, passed away on March 9, 2015. Dr. Kalanithi was Chief Resident in Neurological Surgery at Stanford University when he shared his story, reprinted here, with The ASCO Post just over 1 year ago, in March 2014. Click here for a memorial tribute to Dr. Kalanithi. We extend our deepest sympathies to Dr. Kalanithi’s family.
Early last year, just as I returned to my residency in neurologic surgery at Stanford University after completing 2 years of my postdoctoral fellowship in a laboratory developing optogenetic techniques, I started losing weight—dropping from 180 lb to 160 lb in just 6 months—and I was having fairly significant back pain. The symptoms didn’t sound any alarm bells at first. After all, I had gone from a sedentary job in the laboratory where I was eating three or four meals a day—and had put on a fair amount of weight—to working 90 hours a week at the hospital and grabbing food in between seeing patients and performing surgeries, which also put a lot of stress on my back.
Nevertheless, when the symptoms persisted, I saw my primary care physician. She ordered some x-rays to rule out isthmic spondylolisthesis as a cause of the back pain, and when they came back negative, she suggested that I have physical therapy to strengthen my back muscles and take ibuprofen for the pain, which helped. Still, I had a nagging suspicion that things were not quite right.
By May, my symptoms had exploded into spontaneous fevers, night sweats, and chest and back pain so severe, they kept me awake at night and frightened me. My weight, which had stabilized, started dropping again and I developed a slight cough. I knew something was seriously wrong, and I started considering cancers that commonly occur in young people, including testicular cancer, but I didn’t feel any masses, so that seemed unlikely. Next, I saw my dermatologist to check for melanoma, but I had no suspicious skin lesions.
Finally, I went back to my primary care physician for a chest x-ray, which showed indistinct lesions on my lungs. I went to the hospital, was admitted, and had a CT scan performed. As I watched the images come on the screen, I could clearly see masses of lesions matting my lungs and deforming my spine. Although I’m not a thoracic oncologist, having reviewed dozens of patients’ scans for colleagues to determine if surgery offered any hope, I knew immediately what I was seeing: metastatic cancer. When I put the results of the scans together with my lab values, which showed anemia and other system abnormalities, I knew things looked grim. I thought to myself, I have a matter of months to live.
Seeking Survival Statistics
After being in medical training for 11 years—and poised to launch an excellent career in neurosurgery and neuroscience—the news that I had stage IV non–small cell EGFR-positive lung cancer was devastating. When I saw my oncologist, I asked her what my Kaplan-Meier survival estimate was. She flatly refused to tell me. Instead, she appropriately laid out my treatment options.
What was interesting to me is that when she talked about my options, she suggested that I could go back to work someday. Even though my oncologist wouldn’t give me statistics on my prognosis, I knew from my own research that large general studies showed that between 70% and 80% of patients with lung cancer died within 2 years of their diagnosis. Of course, most of those patients were older and heavy smokers. What was the study result in nonsmoking, 36-year-old neurosurgeons?
Having No Regrets
I was prescribed erlotinib (Tarceva) and, fortunately, I’m having a really good response to the drug. The majority of the spots on my lungs have disappeared, and the primary lung nodule has shrunk. I’ve put back all the weight I lost, and last November I returned to work full-time.
Some days I feel that maybe I should be in a less demanding, less stressful job, but doing that would be a capitulation to cancer. Yes, life is harder now. I’m a little more tired than I used to be, and everything takes a bit more effort, but I can still operate every day, sometimes for more than 12 hours a day.
As I continue to get stronger, I’m beginning to feel that it’s possible I will have a very long career, although I still realize I may not. At least I know what’s important to me. You have to ask yourself, which do you want more: to have a career and life that you love, knowing that they can come crashing down if you get sick again, or not to do those things and feel regret? I choose the former.
Appreciating the Stresses of Living
At the moment, my life is at the maximum point of uncertainty. I need to get my career trajectory fully back on course, and my wife is pregnant with our first child. So life is really exciting—and stressful. But these are the stresses of living, not of dying. The fact that I get to deal with all of the worries of having a highly demanding career and a new family is a blessing.
Being both a doctor and a patient has been an interesting experience. I’ve gotten occasional advice from well-meaning colleagues who say that coming back to neurosurgery is crazy. Some of their advice is quite useful because their feedback helps me assess whether I’m making the right decisions or in complete denial of the seriousness of my medical situation. But the flip side of their advice is that it can persuade you to limit your goals, and I’d rather not let cancer do that.
I’ve been fortunate to overcome the immediate challenge of having advanced lung cancer and wondering how much time I have left. Now the question is, how do I proceed toward realizing my hopes and ambitions in a responsible and productive way? The answer may mean building backup plans into the equation in case the cancer becomes uncontrollable and aggressive.
In the meantime, I’m pursuing the things that drive me. The fact of death is unsettling. Yet there is no other way to live. ■