Finding lung cancer in young nonsmokers: some thoughts on screening

As of this year, for the first time ever, national guidelines exist for screening people at the highest risk for lung cancer. The U.S. Preventive Services Task Force now recommends that people from 55 to 80 years old with a history of heavy smoking receive a low-dose CT scan every year. The details of the recommendation are here: http://www.uspreventiveservicestaskforce.org/uspstf/uspslung.htm

That screening guideline would not have helped me. I’m not 55, I barely tried two cigarettes in my teens, and in early imaging studies my cancer didn’t even look like cancer (on an X-ray, apparently, it looked like pneumonia).

Lung cancer is often curable with surgery at early stages, but is rarely detected early. Who knows how long the cancer was quietly growing in my lungs before I was finally diagnosed? Perhaps it could have been removed surgically and would never have recurred.

Some lung cancer advocates would like to see broader access to low-dose CT scan screening, to detect cancer earlier in younger, non-smoking patients like me. I’m not convinced that lung cancer is common enough in nonsmokers under 55 to justify universal CT scans. There are risks in being exposed to radiation, and universal CT scans might cause as many problems as they solved.

We might be better served by a lung cancer education campaign like the U.K.’s “Be Clear On Cancer” lung cancer campaign last summer. That campaign encouraged people to go to the doctor if they had a persistent cough. For more about this campaign, see http://www.bbc.co.uk/news/health-25257135

My earliest definite symptom was a strange, raspy sound when I took a very deep breath. I started hearing it in May of 2013. It wasn’t very loud; it was actually quite subtle. My partner could hear it by listening very closely. For the most part, no one would have noticed it but me. I also had an on-again, off-again cough and some fatigue. Doctors at my primary-care clinic thought I had bronchitis, and gave me antibiotics. I still heard the funny sound and was still very tired, but thought I was mostly better and maybe it was “just” asthma.

In October, at the suggestion of a close relative, I went to the doctor again for the breathing sound and this time the diagnosis was walking pneumonia. My oxygen saturation was a little low, and my cough got worse again. When antibiotics and steroids didn’t clear things up, they sent me to a pulmonologist. The pulmonologist would have sent me for a bronchoscopy in January if things didn’t clear up, but in late December I went into the hospital with shortness of breath and they did the bronchoscopy then.

What if I’d pursued the cause of that funny breathing sound more aggressively? What if my doctors had told me early on that lung cancer was a possible explanation, however remote? I would have been terrified, of course, but I might have been more aggressive in pursuing follow-up care. I also wonder about my “adult onset asthma,” a diagnosis I received in my thirties. What if that was never asthma at all, but sneaky, slow-growing lung cancer — and what if I’d had a CT scan or a bronchoscopy then? Perhaps the best early detection program for younger people is simply more education that nonsmokers under 55 can and do get lung cancer, so we can all be more aggressive, patients and primary doctors alike, when we see possible symptoms.

About Irene Elizabeth (Beth!) Stroud

Queer suburban mom, graduate student, lung cancer survivor, card-carrying United Methodist.
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