I have cancer.

And it’s not curable.

The story of my diagnosis begins in the MRI waiting room of Beth Israel Deaconess Medical Center in late March 2015. After getting a MRI of my head, I was told to wait before leaving. This was a bad sign, but I didn’t think much of it at the time. Up until that point, I had rarely needed medical care. My last doctor’s appointment prior to getting checked out for the recent symptoms was six years ago.

The radiologist walked in and introduced herself. MRI results are never delivered immediately unless it’s an emergency. She had bad news.

Two large tumors had been discovered in my brain. The tumor in my frontal lobe was causing major swelling. She showed me the images of the tumors on her smartphone, to aid with the disbelief that is often a part of getting such devastating news. I can’t remember my exact words, but my general feeling at the time was, “OK. What should I do now?”

She told me I had to go to the emergency room immediately. A bed was already being prepared for me.

Amy accompanied me to the MRI. My first responsibility was to break the news to the love of my life. Her reaction was not as dull as mine was.

Amy is a nurse; and at the time she knew things that I did not. The tumors meant that I had cancer, that it had spread to my brain, and that it was stage IV: the most advanced stage.

To me, the news was not a complete shock. Amy and I had been fearing a lung cancer diagnosis prior to the MRI. I had developed a chronic cough over the past winter that had recently gotten much worse. This symptom had led to a chest X-ray, which revealed a mass in my left lung. The X-ray led to a CT scan, which led to a series of tests typical of a lung cancer workup: a brain MRI, PET scan and, finally, a biopsy.

During a prior visit, the pulmonologist had been frank: cancer was definitely an option based on the imaging. Still, he also left a few outs. The appearance of the imaging could also be caused by an extreme case of tuberculosis or pneumonia, which, although exceptional, was more likely given my demographic: young, never smoker, male. After receiving this news, I did what anyone in my situation would do: I started Googling frantically. How could I, a nonsmoker who rock climbed, attended yoga classes and ate a healthy diet get lung cancer?

The numbers, like the pulmonologist, did not have concrete answers. Never smokers do develop lung cancer, making up 20 percent of newly diagnosed cases, a rate that I was astonished and terrified to learn. Yet the number of people my age who develop lung cancer is very small. Millions of people develop pneumonia every year. Only 0.3 percent of patients who develop lung cancer in the US are 30 or younger, which works out to only a few hundred. And the sources online said that when young, never smokers get lung cancer, they are often female[1]. My symptoms were relatively mild. The cough was starting to improve on antibiotics. I had not lost weight. I did not think that I had lung cancer.[2]

In the days following the MRI, I had a battery of tests looking for some alternate primary source other than the lung. Then I had an emergency biopsy, which completed the diagnosis. I had stage IV adenocarcinoma of lung. My first brain surgery occurred less than a day after getting the results.

It’s been over seven months since getting the diagnosis, and I have been hesitant to tell this story. In truth, the first thing I wanted to do after getting the diagnosis is to crawl in a hole and hide. The story that we’ve all been told about lung cancer is that it’s a preventable disease. How did this happen? What did I do to cause this?

Perhaps some wrongdoing from my past has come back to dole out karmic revenge? Did those few cigars and puffs of cigarettes when I was a teenager make any difference? Did I let work contribute too much stress to my life? Was it the pollution of life in the city?

The lung cancer stigma is real. It affects all of us, perhaps us patients the most. Addressing this stigma requires all of us to use our voice to speak up.

I’m a never smoker. I am active and eat a healthy diet. At the age of 29, I was diagnosed with stage IV lung cancer.

Ok.

What should I do now?

Thanks to Diane Lee for editing a draft of this.

[1]This is a stat that I’ve heard repeated by many doctors. The numbers are more like 60/40 favoring females, which makes almost no difference in practice. Doctors – stop repeating it, or worse using it to influence clinical decisions.

[2] Little did I know, I fell into the same deadly trap that delays the diagnosis and treatment of many young cancer patients. By the way, my care during diagnosis was excellent, compared to the diagnoses stories of many young cancer patients I’ve read. The doctors looked at the data and came to a conclusion that was very hard for me to accept at the time. The prompt use of imaging may have saved my life. There are cases where patients like me have died prior to diagnosis or treatment, waiting months to over a year for workup under the mistaken belief that someone can be too young to get lung cancer.

allenlee.net/2015/11/10/hello-world-i-have-cancer.html