I have cancer.

It’s not curable.

The story of my dianosis 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. I had not been in need of medicine much in my life up until that point - my last doctor’s appointment prior to the workup for the recent symptoms was 6 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 were 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 common to 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.

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

Amy is a nurse and she knew at the time what I did not. The tumors meant that I had cancer, that it spread to my brain, and that it was stage 4: the most advanced stage prior to death.

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

In a prior visit, the pulmonologist was frank - cancer was definitely an option based on the imaging, but he also left a few outs. The appearance could also be caused by an extreme case of tuberculosis, or pneumonia, which although exceptional, is 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% 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% 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 4 adenocarcinoma of lung. My first brain surgery occurred less than a day after getting the results.

It’s been over 7 months after 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 our voices 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 4 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.