Unease and fatigue

Initially, the symptoms Malik was experiencing were hard to define, she said.

"I had this feeling that something was wrong with me," she said. Initially, her family physician attributed her malaise and fatigue to mild anemia, and while taking iron supplements appeared to reverse her iron deficiency, the malaise got worse. Malik said she remembered lying in bed, staring at the right side of her upper abdomen, which strangely felt "full," but not painful.

Over time, Malik became increasingly fixated on the sense of dread and anxiety surrounding her health. "I'd never had a problem with anxiety before," she said.

Her primary care doctor administered a depression screen, which Malik said she "flunked."

"I thought, 'Wow, this is all in my head,'" Malik said. By March 2014, Malik was taking an antidepressant on her doctor's recommendation and also started walking and practicing yoga.

Unfortunately, the medication and exercise didn't help. By May, Malik had lost her appetite and was losing weight. "Food didn't taste good to me," she said. She also experienced night sweats and insomnia.

Malik's husband spoke to a physician friend who recommended Malik see an endocrinologist about a potential metabolic problem, such as a thyroid disorder. After the endocrinologist reviewed multiple blood tests that came back normal, they recommended Malik reduce her stress.

"She told me I was a young mother, working, and that it certainly made sense that I needed a vacation," Malik said. "I had already bought into the fact that I was feeling bad from my overloaded life. But I knew all my peers were doing the same things as me, so I was confused."

Malik then sought out an alternative medicine practitioner, who diagnosed her with "adrenal fatigue," which is a collection of symptoms including fatigue, anxiety, and insomnia and not an accepted medical diagnosis.

The practitioner recommended Malik use special serums, review her diet, and reduce her stress. "I felt that my symptoms were my fault," Malik said. "I just couldn't cut it."

A bad case of pneumonia

Weeks later, Malik developed a bad cold that she couldn't shake. In early July, Malik suddenly started coughing up blood while at home. She called her family physician, who sent her for a chest X-ray that appeared to show pneumonia — a diagnosis that could explain the recent pain Malik was feeling in her chest and back, as well as her unintended weight loss.

Malik started taking antibiotics and said she "started to feel a bit better, but not well." A month later, Malik started coughing up blood again and went to the ED. After another X-ray, Malik was diagnosed with recurrent pneumonia.

"My husband said, 'This is not normal,'" Malik said. They requested additional testing, and the ED doctor told them to contact a lung specialist.

In August, Malik saw a pulmonologist, who ordered a CT scan that revealed a potentially problematic area on her right lung. Malik then had a bronchoscopy, which revealed that Malik had non-small cell adenocarcinoma, the most common type of lung cancer.

Malik said she was shocked by the diagnosis. "I was a 39-year-old who had never smoked," she said. "No one had ever mentioned the word cancer." Lung cancer had killed Malik's grandfather, who had been a smoker, 25 years earlier.

Malik said she recalls the pulmonologist tried to be reassuring with the diagnosis. "I remember him saying, 'Hopefully we caught it early.' And I remember thinking, 'Nope, I'd been sick for a long time,'" Malik said.

A couple days later, after a mostly sleepless night, Malik noticed she was having double vision and couldn't fasten her bra. "I thought, 'Wow, I'm so stressed out I can't even see,'" she said. Her husband was concerned something else was going on and called the paramedics.

"They thought I was having a panic attack" triggered by the cancer diagnosis, Malik said.

At the hospital, doctors determined that Malik had suffered a stroke. Her Stage 4 cancer had spread to her left lung, spine, and hip bones, and had entered her brain, which caused the stroke. "It was everywhere," Malik said. Doctors told Malik's husband they expected her to have around a month to live.

Genetic testing leads to treatment

Doctors told Malik she needed to start chemotherapy immediately. Given her age and the fact she wasn't a smoker, doctors thought Malik's cancer might have a genetic mutation that could guide her treatment.

They ordered tests for a variety of mutations, including ROS1, which is estimated to affect around 1% to 2% of patients. ROS1 positive cancers can be treated with a targeted therapy, which is a type of oral medication designed to kill cells with a specific mutation while sparing normal cells.

Malik drove to Massachusetts General Hospital and saw Zofia Piotrowska, who was a fellow in thoracic oncology at the time.

"Ann is not so uncommon," said Piotrowska, who's now an assistant professor at Harvard Medical School. Despite increased awareness of lung cancer among nonsmokers, "unfortunately it's common to see [patients] at Stage 4," Piotrowska said, adding that if Malik had "been an older man with a smoking history, she might have been diagnosed earlier."

Six weeks after she was diagnosed with lung cancer, Malik's genetic testing revealed an ROS1 mutation and she began targeted therapy, a treatment she'd have to take for the rest of her life.

"Disease control is the focus," Piotrowska said. "Acquired resistance, the ability of cancer to adapt and evade drugs to vanquish it," remains a continued challenge, which requires doctors to find new treatments and medications after old ones stop working.

Months after her diagnosis, Malik learned the X-rays that supposedly showed she had pneumonia actually showed lung cancer that mimics pneumonia, a case that's now used to teach students at Harvard Medical School and appears in a radiology textbook written by the chief of thoracic imaging at Mass General.

In 2016, new metastases were found in Malik's brain, and she underwent successful radiation treatment. In 2020, she underwent brain surgery to remove dead tissue caused by the radiation.

"Her brain is the biggest problem, but she's doing really well," Piotrowska said.

Piotrowska noted the median survival for ROS1 patients is around five years, and while some of Piotrowska's patients have survived, "even among that elite group she is an outlier."

"Ann does an amazing job of balancing" living with her disease and living her life, Piotrowska said. "Her story is a terrible one in some ways but also a hopeful one." (Boodman, Washington Post, 5/25)

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