A patient's perspective on lung cancer awareness month

25 years ago, many different diseases were lumped together into a single diagnosis: lung cancer. Even though it was possible to classify a patient’s tumor by the appearance of cells under a microscope, this knowledge was of limited utility. It did not radically affect treatment, and patients with advanced lung cancer generally lived for about one year, regardless of whether they received chemotherapy or went without it. We were living in what were effectively the dark ages of lung cancer.

Things are different nowadays. Thanks to genomic sequencing, we now know that there are several types of lung cancer, with alteration(s) in any of the following genes: ALK, BRAF, EGFR, HER2, KRAS, MET, NTRK, RET, or ROS1. That’s to list just a few oncogenic biomarkers that have been discovered so far (and which are listed at biomarkercollaborative.org). Each of these diseases is different biologically. Each has a different class of treatments for metastatic patients that had not yet been discovered 25 years ago.

But even back in the dark ages, there were rare, outlier patients who did not fit the typical demographic. There were those who would come down with lung cancer much younger than the median age of diagnosis (70), or without any known risk factors. I’m reminded of the comedian Andy Kaufman, a never-smoker who died of lung cancer in 1984 at age 35. Or Jimmy Garrison, most famous as John Coltrane’s bassist during the “classic quartet” period, who died of lung cancer in 1976 at age 42.

Today we know that such outlier patients typically aren’t outliers at all. It’s just that the full picture is not visible until we take into account the results of advanced biomarker testing. With such testing, what was formerly a latent/hidden variable is now an observable one. And what we find is that the demographics of lung cancer patients with one biomarker can be entirely different from the demographics of patients with another biomarker.

Take my tumor’s ALK rearrangement for instance. The median patient with ALK-positive lung cancer is 50 years old at diagnosis. Essentially, it strikes at some random time during adulthood. There are plenty of patients in our thirties, just like there are plenty of patients in their sixties. It does not correlate with smoking history. There is no known cause, and it might not be caused by anything other than bad luck (together with a lapse in the immune system, which is often able to snuff out tumor cells before they grow).

The first-line treatment for advanced ALK-positive lung cancer is a targeted therapy, a pill which contains a small molecule designed to sit in the active site of the ALK protein. This disables the signal telling each tumor cell to grow uncontrollably.

Thanks to targeted therapies, ALK-positive patients are typically able to live several years in good health. Because we often don’t “look like” cancer patients, it’s up to each one of us whether we want to let those around us into our little secret (or not).

This month, I mark and celebrate 48 months (4 years) of progression-free survival on alectinib. I feel incredibly lucky to be living in an era of personalized medicine.

My hope for lung cancer awareness month is that people understand that anybody with lungs can get lung cancer. Lung cancer should be normalized, and patients should not be hiding or in any way ashamed of their condition.

As for Jimmy Garrison, I already know that I share a good bit in common with him: both a name and a lung cancer diagnosis at a young age. I’ll always wonder if his cancer might have been driven by an ALK rearrangement, too.