Non-Small Cell Lung Cancer Survivor
Genomic testing unlocked a miracle for this survivor
Amy Grove was devastated by a Stage IV non-small cell lung cancer diagnosis at 48. To make matters worse, her cancer was squamous cell carcinoma, which can be difficult to treat. After her first therapy failed, her doctor ordered genomic testing to find a more effective treatment option for her specific type of cancer. Results showed she had a MET amplification, which made her eligible to begin targeted therapy. Today, she is stable and encourages others to ask for genomic testing.
Genomic testing saved my life. I truly believe that if my doctor hadn’t ordered it, I wouldn’t be here today. I recommend everyone get genomic testing even if your doctor doesn’t think your cancer has biomarkers. Mine did, and it gave me the miracle I needed.
Two weeks after I got a flu shot in November 2018, I had a swollen lymph node on the side of my neck. It was in a weird spot, and I figured it was a result of the shot. But when it was still there two weeks later, I decided to get it checked out.
My primary care doctor ordered a CT, which caught the upper part of my lungs. The scan showed a mass on my upper right lung. A PET scan showed a mass in my lung and lymph nodes. I received a Stage IV non-small cell lung cancer diagnosis on my 48th birthday.
I immediately thought I was done for and that there was no hope. I feared I would not see my 50th birthday. I became horribly depressed and anxious. I don’t think I slept for the first three weeks after my diagnosis. But sharing my diagnosis with friends and family helped to calm my fears.
At the time, I was put on what was considered the gold standard of treatment, a drug therapy combined with radiation therapy. I was only able to tolerate the drug therapy for a short while, and scans showed the cancer had spread (metastasized) to my skull, shoulder, adrenal glands, hips, ovaries, femur, feet, fingers and ribs.
I was so weak that I had to use a wheelchair. One day I sat down on the couch and broke my left femur and my right foot. I was in so much pain. I was terrified to move for fear I would break something else.
I was already in the middle of radiation therapy to treat the metastases on my hips and femur, so surgery to repair the femur with pins was delayed three weeks.
I had almost lost all hope, but my family stepped up to support me. I had the emotional support of my husband, and my mother moved from Florida to help me for two months. She drove me to my appointments. My brother built a shower in the garage of our two-story house so I could shower without going upstairs. I couldn’t have made it through this without my family.
The doctor speculated that the therapy caused hyper progression of my cancer. Although it wasn’t the standard approach, my doctor suggested sending out my blood for biomarker testing. Apparently, it is rare for squamous cell lung cancer to have biomarkers, but my doctor was hopeful and took a chance. Thank goodness he did because the results showed I had a MET amplification.
My doctor chose a targeted therapy designed to target MET. Within two weeks, I felt 90 percent better. I could get out of the wheelchair and walk again. It was like night and day! I truly felt like it was a miracle.
I found a great deal of support online through Facebook groups. I’m not a fan of in-person meetings, so online was perfect for me. With lung cancer, many of the groups are divided by mutation. Together with a friend of mine, who also has lung cancer with a MET mutation, we are administrators for a MET- specific Facebook group.
Three months after starting the targeted therapy, all of the metastases were gone except for the tumors on the adrenal gland and lung. I had cryoablation to remove the spot on the adrenal gland and stereotactic body radiation therapy (SBRT) on the lung nodule.
Today, I am considered stable and continue to take the targeted therapy. I’ll remain on it until it stops working. My doctor says there are other options we can consider when that time comes, and I trust him.
Make sure you advocate for yourself. Speak up and ask for biomarker testing. Don’t be afraid of the cost. Most genomic testing companies will help you pay for it if your insurance doesn’t. Do not let the cost of genomic testing prevent you from having it because it could save your life.
Advances are being made all the time. Have hope. Lung cancer is no longer a death sentence. Genomic testing could save your life, just as it did mine.