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By Lavern McDonald, as told to Hallie Levine
I was diagnosed with stage IV inoperable lung cancer in 2018. It has been a long, hard journey. But thanks to my care team and innovative treatments, I have been able to turn this deadly condition into a chronic disease. Here’s what I want others to know.
It took 7 months for me to get my diagnosis. Instinctively, I knew that something was not right. I experienced shortness of breath when I walked up subway stairs, for example, and had stabs of pain under my heart. I passed out while a technician performed a sonogram of my chest cavity.
At first, my primary care doctor suspected pneumonia. But when the sonogram revealed inflammation and large amounts of fluid in my lungs, I was referred to a pulmonologist for a CT scan right away. That test lit up like a holiday tree. The cancer had not only infiltrated both lungs, but it had also spread all over my body, including my brain and spine. A week later, a lung surgeon performed a biopsy. My doctors told me I had a type of non-small-cell lung cancer – the most common type of lung cancer known as an EGFR mutation.
When I learned all of this, I was stunned. I was an otherwise healthy 52-year-old nonsmoker with no family history of any sort of cancer. I worried I would be forced to give up my beloved job as a high school social studies teacher and have to leave my 140-year-old Brooklyn brownstone to move back to Florida to live with my mother.
When my doctors delivered my diagnosis, they also did share some good news: There was a new FDA-approved treatment available for this type of metastatic lung cancer. The treatment targets and blocks mutated EGFR found on cancer cells. I began treatment in August 2018. Two weeks later, I was hospitalized with what appeared to be pneumonia. When doctors did a follow-up CT scan, they made a shocking discovery: All my tumors, lesions, and nodules had been halved, and my lungs were simply filled with dead cancer cells. By January 2019, I was in full remission.
I stayed that way for 2 years, until in the spring of 2021 when my cancer recurred. I ended up at Memorial Sloan Kettering in a clinical trial where an experimental drug was added to my original treatment. By January 2022, my cancer had disappeared once again. I then moved to conventional chemotherapy and radiation, which I finished this summer. Now, I’m on the maintenance chemotherapy along with a drug that helps prevent the growth of new blood vessels that could feed tumors.
Throughout this all, my primary care doctor has been my rock. Even after my diagnosis, when I was “handed off” to the pulmonary and oncology teams at various medical centers, she was still there, calling, texting, and emailing me to make sure I was OK. When I interviewed with NYU Langone Medical Center to possibly participate in a clinical trial, for example, she called in to speak to the researchers. She really served as the quarterback. She kept the specialists appraised as to how I was doing and let me know about their discussions with one another.
But what am I most grateful to her for? She really listened to me at the beginning. Many doctors would have written off my symptoms of exhaustion, breathlessness, chest pain, and general malaise as just some of the normal aches and pains that occur with life. Instead, she did a thorough workup and ran all sorts of tests. She refused to give up until she found the root cause, which saved my life.
A couple of years ago, I saw an endocrinologist for a non-cancer thyroid-related issue. She questioned me as to why my primary care doctor ordered all those tests years ago and seemed critical. I fired her. It was a red flag to me that she wouldn’t work collaboratively with my other doctors and she wouldn’t take my symptoms seriously.
It truly takes a village when you are being treated for stage IV inoperable lung cancer. Even though my family lives hundreds of miles away, they are always there when I need them. My mother and sister, who live in Florida, hop on a plane whenever I ask them to. I constantly have relatives who call me from all over the world, and friends who offer up prayers: Jewish prayers. Christian prayers. Hindu prayers. Buddhist prayers. My students and their parents – many of whom are doctors themselves – have also been extraordinary. I am always hearing stories of their own loved ones who are living and thriving with other advanced cancers.
While I was always satisfied with my medical care, I was really blown away by the level of attention I got when I was at Memorial Sloan Kettering. During my first clinical trial, while the team was responsive, everyone worked in their own silo. But at Memorial Sloan Kettering, it really felt like we were all in it together. If I had a question, someone always got back to me that same day. I was in tremendous pain when I underwent radiation. The team worked together to develop a pain management plan that included the steroid dexamethasone and an opioid, and then also worked together to help me with side effects that developed from those, like insomnia and constipation.
Most importantly, they’ve made clear to me that they view my cancer not as a death sentence, but as a chronic disease. It’s like type 2 diabetes or high blood pressure. Sometimes, your medication stops working, and you need to find an alternative. There’s no need to let any cancer – even inoperable lung cancer – shut down your life.
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