Carson S : VA
It has been a year. A year ago I received the call. My mom, with a shaky voice, told me that though she had been admitted to the hospital for what had looked like pneumonia, it was not in fact pneumonia. It was likely lung cancer, and from the looks of it, Stage IV. Everything froze in that moment. I could hear her trying to be strong on the phone – “Don’t worry,” she told me, “I’m going to fight this.” She did try to fight, but just over two months later, we lost her.
Immediately after the call, and still in a daze over the news, I drove back to my hometown to be with her when she received the formal diagnosis from her oncologist. It was as suspected, Stage IV lung cancer. It was in her lymph nodes, and in almost every bone of her body. My mom, my dad, my sister, and me – we huddled together in that tiny office, really not knowing what to do or say.
But I was angry. Not at the oncologist – I knew she had only just met my mom. Still, I demanded of her in a tone that was certainly more aggressive than she deserved, “How could this happen? She has been seeing a pulmonologist every six months for at least ten years. She has COPD, she was a smoker for years before quitting many years ago. How is it that this was not detected before Stage IV? How?!”
And that is the question. It is why I am sharing our painful story. A story I cannot tell without tears streaming down my face. Though I am a litigator at a large, international law firm, I am generally a pretty private person. I really do not want to share my personal pain, but I feel compelled to do so. My mother was ripped away from us, so quickly and so painfully, and I believe it was because she was not given proper care.
I asked the oncologist, “Isn’t it standard procedure to do chest X-rays or some other cancer screening for patients with COPD and a history of smoking?” And she, not knowing my mom’s full medical history yet, told me yes, it is standard, though only in the last two or three years. I went home that night and read everything I could find online and every article or medical journal summary told me the same thing: patients with a history of smoking who have COPD should be screened for cancer regularly. If lung cancer is caught early, even with COPD, there are treatments that can work; there is a chance of survival, and certainly a chance of living longer than two months with the disease.
My mother was denied that chance. Being the lawyer that I am, I immediately demanded medical records from the pulmonology practice that had treated her for all these years. I learned quickly that despite her history of smoking, despite her COPD, she had not even had a chest X-ray in more than two years. Those pulmonology appointments – the ones that had given me comfort that she was in good hands – were not much more than a physician’s assistant (PA) listening to her lungs and reminding her that COPD is serious. It is heartbreaking to read those records now. They show almost every doctor in the practice signing off on the PA’s notes. I am still in disbelief – with her medical history, how could not one doctor in the entire practice (which, by the way is the only pulmonology practice in the southern city I am from) recommend her to be screened for cancer?
It haunts me. When she would tell me she saw the pulmonologist, why didn’t I ask if she had been screened? In hindsight, it seems so obvious. Many have told me not to be hard on myself; I am not a doctor, I thought she was being cared for, I could not have known, etc. It is little comfort.
After our meeting with the oncologist, my mom had a follow up appointment with the pulmonology practice where she was being seen for her COPD. Even though they knew of the cancer diagnosis, only the PA was available to meet with her. I was not there for that appointment, but I made my parents promise me to get some answers about why she had not been screened for cancer, or, at a minimum, why it had been so long since her last chest X-ray (which, by the way, was connected to an earlier case of pneumonia). My parents were told that “it is never an automatic thing” to screen for cancer, and that my mother was not showing any “obvious signs” of cancer, such as coughing up blood, blood in her stool, or unexpected weight loss (though her records show she had been steadily losing weight). The anger and hurt I feel when recounting these statements is almost overwhelming. I am of course not a medical professional, but if you are coughing up blood, isn’t it already likely too late?
Just a few personal notes about my mom. I cannot write about her without sharing how she loved my sister and me unconditionally. I am who I am today because of her love and her unwavering support. I miss her every second of every day. Likely more relevant to this story, she had good insurance coverage, and she had the means to pay out of pocket for any type of screening that was recommended, even if not covered. She was never given that option.
And so, we lost her. My sister and I held her hands as she left us. She fought so hard to make it through the holidays with us, and with her grandchildren. I will never forget those last days with her. But it all happened so fast. So very fast. Her body finally just gave out – she could not fight any longer.
While I know that she likely would have died anyway (a fact the medical malpractice lawyer I hired was quick to tell me as he discouraged me from taking legal action), I know in my heart that if she had been diagnosed earlier, if we had caught this horrid disease at Stage I or even Stage II, she would have at least had a fighting chance.
So I end with this: For anyone who has a loved one with COPD, please consider our story and please advocate for your loved one to be screened regularly for lung cancer. For any physician who is treating patients with this history, please at least give them the option of being screened. Nothing can bring my mom back to us, but a simple low-dose CT screening can save or prolong lives. I would give anything for just a little more time with my mom.
First Published: 12/11/2020 1:11:13 PM