Vicki Scott, a retired special education teacher, has never smoked once in her life. So, when she started having unusual health symptoms, she never suspected she had a rare form of lung cancer. Vicki had always been healthy; her only major health care experience was knee replacement surgery.
But in the summer of 2022, Vicki noticed her lower back hurt during her daily walks. She also had difficulty standing for long periods, such as when doing the dishes. Then, she noticed a bone protruding from her back.
“I thought it was a bone spur and I was just losing weight,” she says. “I didn’t feel bad, so I didn’t think anything about it.”
Then, she noticed the lymph nodes in her groin area were swollen.
“I didn’t share this information with anyone,” says Vicki. “My husband passed away in 2019 of heart disease, so I was living alone. I didn’t tell my children because I really didn’t think anything was wrong and I didn’t want to worry them. Little did I know, I was in denial.”
Vicki’s lung cancer diagnosis
Vicki saw her dermatologist in November 2022 for a routine appointment. He was concerned about the bone protruding from her back and encouraged her to see her primary care provider (PCP). She scheduled an appointment in early December. By the time she went to that appointment, she had developed knots on her head.
“He was very concerned when he saw the bone in my back and my swollen lymph nodes,” she says.
Her PCP scheduled Vicki for a CT scan the following week. Testing revealed that she had a large mass pushing on one of her lower back bones. Vicki was referred to Dr. Daniel Haggstrom, a thoracic medical oncologist at Atrium Health Levine Cancer Institute. Additional testing revealed a diagnosis of a rare subtype of stage IV non-small cell lung cancer.
“When I first got my diagnosis of lung cancer, I was in shock,” says Vicki. “I didn’t smoke and I was in good health, or so I thought. Dr. Haggstrom explained to me how I had a rare gene mutation and would have gotten lung cancer regardless of what I had done. But if I had gone to the doctor earlier, I might not have been at a stage IV. I regret that I was in denial all that time. Both my grandmothers lived to be 96, so I knew I would too. They both died of old age. Never in a million years would I have thought I would get cancer.”
Vicki told her adult children about her diagnosis after the family celebrated Christmas. From that day forward, Vicki’s daughter, Sarah, came to stay with her for four months. Vicki has had hearing loss since birth and can’t hear high-frequency sounds. While Vicki can read lips, doctor’s visits can be challenging. She was especially grateful to have Sarah’s support at her appointments and at home during this time.
“She took care of all my phone calls, appointments, meals and everyday necessities,” says Vicki. “I honestly can say I would not be here without all her help and encouragement. She has been my lifesaver and guardian angel. She always says, ‘Mom, you’ve got this.’”
Vicki’s treatment plan
Stage IV lung cancer is notoriously difficult to treat, but thanks to tumor sequencing to determine her specific genetic mutation, Vicki’s medical team was able to prescribe targeted therapy to manage the disease. Oncologists use genetic testing to create tailored treatment plans for eligible patients, such as those with a rare cancer, like Vicki, or a family history of cancer.
Vicki’s testing identified a MET exon 14 skipping mutation, which is present in less than 3% of all non-small cell lung cancers.
“Lung cancer remains a diagnosis most commonly identified in smokers,” says Haggstrom. “As providers, we know to look for genetic mutations in patients who don’t have a strong smoking history.”
Once a mutation is identified, providers can accurately match patients with the right treatment, such as targeted therapy for their specific mutation. In Vicki’s case, her tumor called for the use of capmatinib, an oral medicine she takes twice daily.
“I was happy to know that I wouldn’t have to have chemotherapy as my first treatment,” says Vicki.
She completed two weeks of radiation therapy before starting targeted therapy in February 2023.
“Compared to chemotherapy, Vicki’s targeted therapy very well-tolerated and her results have been nothing less than astounding,” says Haggstrom. “She started the medication in February, felt better within a month and after two months, her scans showed an 80% reduction in the size of her tumors.”
Vicki will need to stay on medication for the rest of her life or as long as she chooses because her cancer was an advanced stage at the time of diagnosis.
“The medication disrupts cancer growth and cell division,” says Haggstrom. “The side effects of the oral medication are minimal. Vicki has mild lower extremity swelling, which she manages with positioning and adjuvant medications. Otherwise, she feels well and has been able to live her life with little interruption.”
Vicki’s daughter, Sarah, has also been amazed at her mom’s progress.
“I’ve seen a transition from when she started the pills in February to now,” says Sarah. “She went from not being able to get out of bed to going back to her normal daily life. I call them her ‘magic pills.’ They’ve been miracle workers.”
Haggstrom says this advanced, targeted form of treatment would not have been possible without lung cancer awareness and research.
“Vicki’s story reveals how far we have come in understanding the science of lung cancer and, despite recent successes, how far we have yet to go,” he says.
Vicki’s life today
Haggstrom has encouraged Vicki not to let cancer slow her down. The mother of three and grandmother of two enjoys yard work, reading, going to lunch with friends and spending time with her grandchildren.
For Christmas, Vicki’s family gifted her a trip to Las Vegas, which was scheduled to take place in April. With Haggstrom’s blessing, she was able to go on the trip and had a wonderful time.
“For a while there, I thought I couldn’t do anything, like go on trips or drive,” she says. “But you can’t let cancer control your life. I don’t want people to look at me and say, ‘That’s the lady with cancer.’ I want to be known for who I am.”
Vicki is grateful for the support of her family, friends and medical team.
“With cancer, the main thing is to have support,” she says. “Dr. Haggstrom and his staff have been wonderful. I can feel they genuinely care about me. I feel so confident in Dr. Haggstrom’s care. He always takes his time answering my questions and gives me reassurance. I feel he is honest, trustworthy and very knowledgeable in the area of lung cancer.”
She adds, “I am so thankful for my family and friends who have all been there for me giving me love, support and positive energy.”
Lung cancer symptoms and screenings
Haggstrom emphasizes the importance of lung cancer awareness.
“Lung cancer remains a common diagnosis,” he says. “More people in the United States will die from lung cancer this year than from breast cancer, colon cancer and prostate cancer combined this year. Despite this staggering statistic, we have struggled to make improvements in detection and treatment because of a lack of awareness and research funding.”
Haggstrom notes the majority of patients in his clinic present with stage III or IV lung cancer, which limits the potential effective treatments .
“There aren’t often symptoms until the cancer has grown large enough to spread to different parts of the body or to local lymph nodes, which makes care more challenging and, often, a cure impossible,” he says.
To help increase early detection of lung cancer, Levine Cancer created the Incidental Lung Nodule Program, which uses software to scan all CT scan reports from patients. The software identifies specific keywords — such as lung, mass, nodule or lesion — to identify patients who may have lung nodules. Nurse navigators and medical assistants review these reports and follow up with physicians so they can monitor patients with concerning lung nodules.
Haggstrom recommends seeing your primary care provider if you experience:
- Unexplained weight loss
- Pain that doesn’t go away
- Persistent coughing
- Coughing up blood
If you currently or have previously smoked, talk to your primary care provider to see if you’re a candidate for lung cancer screenings. These low-dose CT scans can potentially catch early-stage lung cancer when it is easier to treat.
“Only 8% of eligible patients in North Carolina have received lung cancer screening CT scans,” he says. “Unfortunately for someone like Vicki, these CT scans are currently only approved for people who are [current or former] smokers. The vast majority of lung cancer cases are driven by tobacco use.”
The Lung Cancer Screening Program for Early Detection offers free low-dose CT scans to eligible patients. You may be eligible for a free lung cancer screening if you:
- Are 50 to 80 years old
- Smoked cigarettes in the last 15 years
- Have a 20 pack year history (meaning you smoked one pack per day for 20-plus years, two packs per day for 10-plus years or half a pack per day for 40-plus years)
Learn more about lung cancer care at Atrium Health Levine Cancer.
