Michelle Helm

Beating cancer at the genetic root

Michelle Helm’s lung cancer journey began as a frustrating, frightening ride through multiple misdiagnoses. Then she found UCI Health specialists who wouldn’t accept the worst-case scenario other doctors had painted for her.

Today, the Mission Viejo parenting coach says she is thriving because she was referred to the lung cancer specialists at the UCI Health Chao Family Comprehensive Cancer Center, where she benefitted from their arsenal of advanced therapies and surgical expertise.

"Before I got to UCI Health, I was feeling lost and frustrated,” says Helm. “Nobody was listening to me. I felt that nobody was on my team."

Lung cancer is the leading cause of U.S. cancer death for men and women, and it is too often detected at an advanced stage. “It’s not the most common cancer, but it’s the deadliest,” says Dr. Ali Mahtabifard, director of thoracic surgery at UCI Health and a member of the lung cancer team.

Helm’s odyssey began in April 2021 when she found herself coughing and struggling for breath, her heart beating wildly a few hours after eating conch — a local shellfish delicacy — on a Florida vacation. After returning home, her cardiologist sent her to a lung specialist. The steroid inhalers he prescribed for what he diagnosed as asthma made it harder to breathe and triggered a yeast infection in her throat, making her coughing even worse.

With the COVID-19 pandemic still raging, it took almost four months to see another doctor for a second opinion. A CT scan revealed abnormal white lines in the upper lobe of one lung. The new pulmonologist suggested a bronchoscopy to investigate further.

Afraid it was cancer, Helm wanted a more definitive test and asked for a lung biopsy. The surgeon who performed the biopsy told her the lung tissue look odd, “very spongy.” At daughter Tanna Bettendorf’s urging, she asked that a sample be sent for genetic testing, specifically for a gene called BRAFV600E. Bettendorf, a chemist, had recently helped develop a promising drug to target the gene, which has been linked to many types of cancer.

‘Six months to live’

In early August, Helm met with a community hospital oncologist who reviewed the biopsy results. “I walk in, he sits me down and tells me I have terminal lung cancer, that surgery isn’t an option and that I have, at best, six months to live.”

Helm’s daughter asked about the genetic test results. He said her records showed no indication of a genetic mutation. Stunned, they went home and gathered the family together to share the devastating news.

An hour later, the phone rang. It was the oncologist, who said he’d made a mistake, that he’d found the genetic test results, which showed that her cancer did have the BRAFV600E mutation. He told her he didn’t know how to treat her cancer but vowed to refer her to “the best oncologist.”

It was like I’d been punched in the gut,” Helm recalls. “I was shocked and bewildered.”

Three days later, she met with UCI Heath medical oncologist Dr. Sai-Hong I. Ou, a nationally recognized expert in complex lung conditions. He brought in Mahtabifard, the thoracic surgery director.

After reviewing her case records and newly ordered lung scans, the doctors proposed at treatment plan. If they could kill the cancerous tissue in her right lung with a targeted therapy, she could then undergo surgery, which would improve her chances for long-term survival.

“We offer alternatives when the standard of care is exhausted,” Ou says, explaining why doctors throughout the region frequently refer their most challenging cases to the cancer center.

Team Michelle

Finally, Helm was confident she had a medical team in her corner. “Once I got to UCI Health, I felt like I was on a bullet train of hope,” she says. “I didn’t have to wait for anything. They knew they had to move quickly or I would die.”

Genetic mutations are common among lung cancer patients, especially among nonsmokers like Helm. Identifying which one is essential because several game-changing therapies have been developed to target specific mutations says Ou,.

“We look for different mutations to make sure we exhaust treatment options,” says Ou, a professor of hematology/oncology and the Hamoui Salous Endowed Chair for Thoracic Oncology Research at the UCI School of Medicine. “We check for all of them using the most advanced tests available. We can pick up mutations that other institutions may have missed or got wrong.”

Helm’s cancer, at stage III, was advanced but localized. Ou started her on an oral medication designed to target primary lung cancers with certain genetic mutations. Three months later, there was no sign of active tumor growth. It was time for surgery.

On Dec. 8, 2021, Mahtabifard removed the top third of Helm’s right lung. It was a difficult surgery, he recalls, complicated by scarring from the earlier biopsy and residual tumor tissue that had turned the consistency of concrete.

Thoracic surgeries have grown exponentially at UCI Health since Mahtabifard was recruited in 2018 to head the program. Before his arrival, UCI Health averaged 14 lung surgeries annually. Today, he and fellow thoracic surgeon Dr. Hari B. Keshava perform close to 300 a year. A third surgeon is expected to join the team soon.

Her surgery a success, Helm next received four weeks of radiation treatment in early 2022. At Ou’s direction, she continues taking oral medication that targets gene mutations like hers to protect against recurrence.

Not just one cancer

“Lung cancer is not just one cancer,” says Ou, who has participated in high-profile clinical trials that have resulted in numerous lung cancer therapies approved by the U.S. Food and Drug Administration.

“It’s like buying a car: You have the model, specifications, options,” he says. “Lung cancer is the same. There are different types based on the mutation and survival depends on finding a treatment for that mutation.”

This approach is often called precision medicine because it targets the biological underpinnings of the specific gene mutation that allows an individual’s cancer to grow.

“There are now at least 10 different mutations for which we now have an FDA-approved targeted therapy for lung cancer,” Ou says. “If you have a mutation, we can give you targeted therapy pills instead of chemotherapy.”

Lung cancer may still be the No. 1 cause of cancer deaths, but the prognosis for patients is “changing before our eyes,” says Mahtabifard, who recalls being able to do little for patients with advanced lung cancer when he was undergoing fellowship training in thoracic surgery less than 20 years ago.

“These immunotherapies are making a lot of these patients with advanced stage disease live long and fulfilling lives.”

A second chance

Reflecting on her winding path from an unfortunate shellfish dinner to a terminal diagnosis and recovery, Helm, now 57, is grateful for the expert care she received.

She still arrives for every doctor’s visit and procedure wearing the sequined ruby red slippers she received in a care package from a friend whose Red Slipper Warrior Project supports women and girls fighting cancer. She even awoke from her lung surgery to find them still on her feet in the recovery room.

Today Helm feels healthy and her prognosis is good. She continues to work as a parent educator and she stays active, riding her electric bike — nicknamed Spicy Red Dog Warrior — to the beach and zipping up and down the hills of Mission Viejo.

She also got in shape for the UCI Anti-Cancer Challenge on Oct. 7, the cancer center’s seventh annual bicycle ride to raise awareness and funds for critical cancer research.

“I love that the money all goes to research at the cancer center,” she says. “If it wasn’t for UCI Health, I’d be dead. Dr. Ou and Dr. Mahtabifard saved my life — they’re my heroes.”

Helm recently had a conch shell tattooed on her ankle, a reminder that her lung cancer might not have been found in time if not for her reaction to eating the shellfish. She also makes it a practice to give other women cancer warriors a pair of red slippers to encourage them to “stay strong and fight this horrible disease.”

I got a second chance at life. I do have a miracle story.”

Learn more about lung cancer services at ucihealth.org/lungcancer