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I’m Living—and Thriving—With Stage IV Non–Small Cell Lung Cancer

What matters most to me is quality of life. At this moment, my quality of life is great, and I’ll continue fighting to keep it that way.


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A diagnosis, in 2020, of stage IV adenocarcinoma non–small cell lung cancer (NSCLC) was found accidentally. I was 55 at the time and in the best physical shape of my life. I had spent the previous year and a half on a diet and exercise regimen that had rendered me 35 pounds lighter and feeling healthy. I spent 45 minutes a day on the elliptical machine at my gym and walked my dog, Missy, several times daily; I never felt unusually winded or experienced coughing or any type of upper body pain. There were no signals to warn me that although I thought I was the healthiest I had ever been, my body was actually harboring a life-threatening cancer.

Janet Wohlmacher with Missy

Janet Wohlmacher with Missy

The extent of the cancer throughout my body may have been found even later than it was if it hadn’t been for a serendipitous near fall while walking my dog. To protect myself from falling, I stiffened my right leg and felt immediate pain from what I thought was a pulled groin muscle. When the pain failed to subside after 3 weeks, I knew something was wrong, but the possibility of having cancer never entered my mind.

I had knee surgery on that leg the year before and thought perhaps I had injured the labrum, so I saw my orthopedist for an evaluation. He couldn’t find anything wrong with my leg and suggested I stop exercising to give it more time to heal. But after several weeks with no resolution, he suggested I undergo 12 weeks of physical therapy, which only intensified the pain. I finally had a magnetic resonance imaging scan of the leg, which found a 6-cm lesion on my femur; it was immediately deemed to be a malignant metastasis from an as-yet undetermined cancer.

Coping With Incurable Cancer

Both my mother and sister have been diagnosed with breast cancer, so when I was told the tumor in my leg originated from a cancer in another part of my body, I automatically assumed I had metastatic breast cancer, even though I had been diligent about adhering to my mammography screening schedule and had never had a suspicious finding. A tissue biopsy and subsequent sequencing of the tumor determined that it was epidermal growth factor receptor (EGFR)-mutated NSCLC in my left lung, and additional imaging scans showed metastases in both lungs as well as in my kidney and brain.

“You know this cancer is incurable, right?” my oncologist said during our first meeting, which, of course, wasn’t what I wanted to hear. But he assured me that despite widespread metastases, the lung cancer appeared to be slow growing and could be managed.

Because the tumor in my right leg had dangerously weakened my femur to the point of near fracture, my orthopedic oncologist advised me to have a total hip replacement before starting cancer treatment. The hip replacement surgery was quickly followed by brain surgery to excise a tumor larger than 1 cm; a smaller brain lesion was later removed by robotic radiotherapy. I then was prescribed the targeted therapy osimertinib. However, I had to stop taking the drug because I developed a systemic rash so severe it literally caused my skin to peel, leaving my body raw and feeling chilled from head to toe.

A series of other treatments followed, including another targeted therapy, erlotinib, and then a chemotherapy regimen of carboplatin and pemetrexed. I’m currently receiving the angiogenesis drug ramucirumab, which, so far, has been effective at keeping the cancer from progressing and has not presented me with any difficult side effects.

The fact that there is so much research into new therapies for EGFR-mutated NSCLC gives me confidence—and hope—that if the cancer becomes resistant to ramucirumab, there will be another effective drug to take its place, and another one after that.

Remaining Vigilant

My cancer diagnosis coincided with the news about an outbreak of a worldwide COVID-19 pandemic that was also life-threatening, especially for patients with cancer whose immune system was already compromised and less able to ward off the devastating consequences of the coronavirus. Fortunately, I took all the safety precautions recommended by health officials to stay home and mask up and got vaccinated as soon as the vaccine was available, and I’m fine. But I admit, it was difficult to have to go for treatment and doctor’s visits alone to limit me, other patients, and oncology staff from exposure to the virus.

Now that both the cancer and the pandemic seem to be under better control, I’ve learned to relax a bit, but I remain vigilant. Cancer has become all-consuming in my life. I think about it 24/7, and it haunts my dreams. What gives me solace and a sense of control over this disease is knowing that I am proactive in my care. I stay abreast of the latest research in new therapies, using reliable sites like LUNGevity (www.lungevity.org), and I’m not afraid to question my oncologist when I disagree with his recommendations. Being an active participant in treatment decision-making has empowered me and makes me feel less afraid.

What I’ve learned through my cancer experience is that what matters most to me is quality of life. Staying alive is my goal, but not at the expense of sacrificing everything that is important to me like traveling and spending time with my family and friends. At this moment, my quality of life is great, and I’ll continue fighting to keep it that way. 

Ms. Wohlmacher lives in Hillsborough, New Jersey.

Editor’s Note: Columns in the Patient’s Corner are based solely on information The ASCO Post received from patients and should be considered anecdotal.


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