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My Life with Non-Small-Cell Lung Cancer

Medically Reviewed by Neha Pathak, MD on November 30, 2020

By Lisa Goldman, as told to Hallie Levine

I was diagnosed with advanced non-small-cell lung cancer (NSCLC) in 2014, at the age of 41. The diagnosis came as a complete shock, as I had no risk factors for lung cancer and no family history of the disease. I grew up in a small town with minimal air pollution and low radon rates, and I’d never smoked. I was physically fit -- I’d been a fitness instructor for 7 years prior to my diagnosis. I rarely drank alcohol and had eaten a plant-based diet for the previous 20 years. I learned the hard way that anyone with lungs can get lung cancer.

My Treatment Journey

In October 2013, I got a bad cold that dragged on for weeks, so I finally went to the doctor on Nov. 2. The doctor ordered a chest X-ray, declared my lungs clear, told me I had a viral infection, and sent me home with an Rx for codeine cough syrup.

But the dry cough still lingered, so I went back to my doctor a month later. Despite prescriptions for an albuterol inhaler, a Z-Pak of antibiotics, and even steroids, the cough got worse and I began to cough up blood. On Jan. 3, I finally saw a pulmonologist, who sent me to get a chest CT scan that very day.

The results were so alarming, I had a lung biopsy a week later, when I was diagnosed with stage IV non-small-cell adenocarcinoma. I was admitted to the hospital and started aggressive chemotherapy 2 days after that. Thankfully, scans of my bones, liver, and brain showed no evidence of spread beyond my lungs.

During that time, I tested positive for the rare ROS1 gene mutation. This happens in about 1% to 2% of people with NSCLC. It’s aggressive and often shows up in young people who’ve never smoked. As a result, I switched to a targeted therapy. That means the medication works by blocking the changes in the lung cancer cells that help them grow. I take it twice daily as a pill.

I thought the targeted therapy would be easier than chemo, which I found totally debilitating. But the first few months weren’t. I lost a lot of weight because I was constantly nauseated. I was always exhausted and had bad edema (swelling) in my legs. Thankfully, after about 6 months, these side effects disappeared. But I always have to take my pill with food; otherwise, I throw up. Now I get full-body CAT scans every 12 weeks. I sigh with relief each time I get the beautiful news that there are currently no signs of cancer.

What My Typical Day Looks Like

In many ways, it isn’t much different than life before my diagnosis. If you ran into me on the street, you’d never know I’m a stage IV lung cancer survivor. I used to be a fitness instructor, so I’ve always been an exercise enthusiast. I work out almost every day, whether it’s 45 minutes on my Peloton bike or a 45-minute online yoga class.

Since the COVID-19 pandemic, I’ve pretty much been homebound, as I’m at high risk of complications from the virus. I keep busy during the day with Zentangle, which is an easy and relaxing way to create images by drawing structured patterns. Someone gave me a class in it as a gift way back when I was doing chemotherapy, and I got hooked. I find it very meditative and calming. I actually just became a certified Zentangle teacher. I hope to begin teaching classes online.

The first couple of years after my diagnosis, I experimented with my diet a lot. I gave up sugar, because I heard that sugar feeds cancer. I went full-on vegan for a bit. Then there was my green juice phase, followed by keto. Finally, I realized that there wasn’t a shred of evidence that any of these eating patterns would help me beat NSCLC. Now, my diet motto is simple and easy to follow: everything in moderation.

I do have some persistent edema as a side effect of my lung cancer medication. Every night, I use a system that helps move fluid away from my legs. It’s basically a pair of pants that contains dozens of individual air pockets and a pump that inflates and deflates them. I do it every night for an hour while I’m catching up on Netflix shows like Schitt’s Creek.

When all this started, my son Jacob was 11, and my daughter Dina was 8. Before my diagnosis, we were so distracted with our busy lives, we didn’t have time for each other. But once I began treatment, that all changed.

My husband, Eric, really had to step up and do more with the kids. I’ve always been a stay-at-home mom, but on those days when I didn’t feel well, I needed him to step in to do the carpools and oversee homework. Now that we’re all in quarantine together, we’ve been really forced into family time. We have game nights, movie nights, and family walks around the neighborhood. I joke that I’ve played so much Boggle, I can’t even look at it anymore.

What I Want Others to Know

If you’re diagnosed with cancer, it’s crucial to find a support group that’s the exact fit for you. The local hospitals and cancer treatment centers only directed me to generic support groups. But I wanted to find other patients who were exactly like me -- young never-smokers facing advanced-stage lung cancer.

I found this in Facebook groups online, where we could share what our doctors were telling us and what new treatments were out there. You really need that if you’re going to successfully advocate for yourself. It’s intimidating to challenge your doctor or seek a second opinion -- you feel like you’re undermining your relationship with your primary oncologist. But after communicating with hundreds of other patients, I can tell you that people who take ownership of their treatment generally fare better, both physically and psychologically.

My other message? Don’t blow off symptoms like a persistent cough, wheezing, shortness of breath, or hoarseness. My story of a nagging cough misdiagnosed for weeks and months on end is a common one. That’s one reason I started my blog, Every Breath I Take, in 2014. I hope that if I share the details of my journey from supposedly clear lungs on Nov. 2 to a lung disaster on Jan. 3, it might help others catch their lung cancer earlier.

If I had known then what I know now, I would have pushed for a chest CT scan much sooner.

Looking Ahead

When I got my diagnosis, I was worried that I wouldn’t live long enough to see my son graduate elementary school. Now I’m 7 years into this journey and looking forward to his graduation from high school this spring.

WebMD Feature

Sources

Lisa Goldman, Mountain View, CA.

Lung Cancer Foundation of America: “What is ROS1-positive lung cancer and how is it treated?”

 

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