This 44-Year-Old Mother of Two Never Smoked—And Now She Has Stage 4 Lung Cancer
More than 235,000 Americans are diagnosed with lung cancer each year, making it the third most common type of cancer in the US, according to the National Cancer Institute. While many associate lung cancer with smoking, the truth is that lung cancer can affect anyone. Take Amanda Nerstad, a 44-year-old mother of two living with a rare form of incurable lung cancer. Since her diagnosis five years ago, she's dedicated herself to promoting awareness about lung cancer and raising funds for research. This is her story.
Note: The following interview has been edited and condensed for clarity.
How did you find out you had lung cancer?
About five years ago, when I was 39-years-old, I was out for a jog and felt completely out of breath. I thought I had walking pneumonia. At the time, my family and I had just moved to Knoxville, Tennessee, from Chicago, so I didn't have a doctor yet. I had to go to a walk-in clinic for an X-ray, which revealed my lung had collapsed. The doctor there told me I needed to go to the ER immediately.
At the hospital I underwent a variety of scans, tests, and even a surgery to drain my lungs, at which point the surgeon said he was sorry, but I had stage 4 lung cancer. It was a complete shock. I had no idea I could get lung cancer. I was a busy mom and wife. I had never smoked, and there was no history of cancer in my family.
The cancer had already spread throughout my lungs and surrounding lymph nodes in my chest. It even made its way into parts of my back and stomach. The surgeon said I likely had just two weeks to nine months left. All I could think about were my two little girls. I was so concerned for them. They were just 4 and 7 years old. I kept worrying about who was going to write them the little notes I left in their lunchboxes.
When did you learn the cancer was ALK-positive, and what does that mean?
After the surgeon gave us the initial diagnosis, an oncologist came in and said that he wanted to do some genomic testing, which could be a game-changer for me depending on the results.
Genomic testing assesses tumors for hundreds of genetic mutations that impact how lesions might grow, spread, or respond to therapy. Depending on the mutations detected, patients may be eligible for targeted therapies which are more effective and more easily tolerated than traditional chemotherapy.
The two weeks I waited for my results were the longest two weeks of my life. It was worth the wait though because they indicated I had ALK-positive lung cancer, a rare form of lung cancer that makes up just 4% of all lung cancer cases. ALK stands for anaplastic lymphoma kinase, and ALK-positive cancer is caused by a genetic mutation in the ALK gene. No one knows why it happens—experts say it's just really bad luck, basically.
Thankfully, though, there is a treatment. I take these targeted therapy pills twice a day. As soon as I started taking them, I felt better. Now, five years later, I've had what my doctors call a complete metabolic response, meaning the cancer is no longer detectable in my scans. It's not the same as remission since if I stop taking the pills, the cancer will come back. However, I couldn't be more thankful. These pills mean I'm able to continue making memories with my family.
Can you tell me a bit about your fundraising for ALK-positive research?
When I was diagnosed, I joined an ALK-positive support group on Facebook. In 2017, some of us decided to meet up at a lung cancer conference hosted by LUNGevity, a nonprofit focused on lung cancer research and awareness. One thing that stuck out to us during the conference was how lung cancer is the number one cancer killer in the US but is largely underfunded due to the negative stigma that it's a smoking disease.
We wanted to change that, so some of use from the support group created a board, partnered with LUNGevity, and began raising money. In our first year, the partnership raised over $600,000. Some people did walks or hosted dinners, but my family put on a lemonade stand—it was actually my daughters' idea. My girls hoped to raise $100 but ended up raising $5,000. Now it's an annual event we call Lemonade for Lungs, and there's a DJ, a bounce house, and a face painter. In total, my family has raised over $350,000 for ALK-positive research, and we have no plans on slowing down.
What other ways do you raise awareness about lung cancer?
After our fundraising success, members of the ALK-positive Facebook support group went on to form a nonprofit called ALK Positive, which I'm now the vice president of. Our mission is to help improve the quantity and quality of life for ALK-positive patients worldwide. To date, we've raised over $6 million for research. We also offer a second opinion program to make sure all patients receive the best care even if they live in an area without many ALK-positive experts.
In 2019, I also helped organize our first summit, which brings together patients, caregivers, researchers, and pharmaceutical companies. We hope by bringing everyone together we can collaborate and bring ourselves one step closer to our shared goal of finding a cure.
The summit also provides patients with a space to support one another since this disease isn't just a physical battle, but a mental one, too—having a good support system you can lean on is crucial.
What do you wish more people knew about ALK-positive lung cancer or lung cancer in general?
Whenever people find out I have lung cancer, they always ask, "Did you smoke," or, "Do you smoke?" And the answer is always no, and no. Lung cancer has such a negative stigma due to its association with smoking, but it's not just a smoking disease. I always say anyone with lungs can get lung cancer.
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