Beating the Odds: Cancer Outliers

Some patients live years after being told to get their affairs in order. Here's how a few of them did it.

by JoBeth McDaniel, AARP Bulletin, March 2016

In January, actress Valerie Harper, 76, received one of the best reviews of her life: Oncologists found "continued improvement" in the rare cancer she'd been diagnosed with in 2013, a far cry from the initial prognosis that she had just three months to live.

Harper is part of an exclusive group — long-term advanced cancer survivors who've beaten lottery-sized odds. For decades these so-called outliers were pretty much ignored by medical science, but now they're getting serious attention from researchers seeking clues to their phenomenal longevity.

At the National Institutes of Health, scientists are gathering outlier cases as part of their "Exceptional Responders" study, and are testing tumor tissue to see if they can detect molecular differences that could help target specific cancer therapies. At the University of California, Berkeley, a researcher has interviewed 250 long-term survivors of late-stage cancer who went into full or partial remission. And at the University of Texas MD Anderson Cancer Center, doctors are exploring how much lifestyle factors such as exercise, stress management and a strong support system, among others, can play into unusual longevity.

Little by little, researchers are delving into the mystery of why some cancer patients respond well to treatments and lifestyle changes, and others don't.

"In the past, we have not had the tools to study why these patients have such amazing responses," says oncologist William Hahn, chief of molecular and cellular oncology at the Dana-Farber Cancer Institute in Boston. What's different now, he says, is that new technology is allowing doctors to analyze a tumor's genome "and discover why these patients respond" so well to certain drugs.

The next step, adds Robert Diasio, M.D., director of the Mayo Clinic Cancer Center, "is to learn from these exceptional responders and identify biomarkers that may be beneficial in prescreening patients." Those with the same biomarkers could then be treated with the same drugs.

But researchers still have a way to go in understanding all the factors involved in a patient's recovery. Consider, for example, John Whitley, who was diagnosed with stage 4 pancreatic cancer in July 2011 and told he had less than a year to live. The cancer had spread to his liver, where doctors had found an inoperable 2-centimeter tumor.

Determined to beat the odds, he entered a drug trial alongside the traditional chemotherapy regimen. Some participants got an experimental drug, while others got a placebo. "Every afternoon, I sat in my little attic apartment and took this drug, and told myself, 'This is a miracle drug that is going to save my life.' "

That September, his oncologist called him, in shock: Scans showed that his tumor had disappeared. Later, Whitley learned that his miracle remission was not from the experimental drug: He had received the placebo. Today, nearly 5 years after his diagnosis, Whitley is disease free. He counsels others through PanCan.org, the website where he first learned of others who had survived this disease, and advocates for more funding for the fourth-most deadly cancer that merits just 2 percent of federal spending on research.

Some experts even believe that such "patient activism" can help patients who are facing what sometimes feel like insurmountable odds.

"The idea that cancer is genetic and out of our control is slowly going away," says Kelly Turner, an independent cancer researcher and author of Radical Remission. Her research has found that reducing inflammation and stress helps bolster the immune system to better fight the disease.

Terlisa Sheppard understands that stress all too well. At 31, while pregnant with her second daughter, doctors diagnosed her with an aggressive hormone-driven breast cancer, HER2. Chemo and radiation worked only temporarily: Within a few years, cancer had spread to other organs, including her brain. Her oncologist told her nothing could be done. "That lit a fire in me," she says. She switched doctors and decided to fight. Today, nearly 18 years after her diagnosis, Sheppard's baby daughter is planning her high school graduation, an event Sheppard could not have imagined in her darkest days, when she only prayed to live long enough that her daughters would know who she was. "I had faith, but let me tell you, it was weakened," she says.

Sheppard still straps on her high heels when she heads to the clinic for her regular chemo injections. "I'm not getting better, but I'm also not getting worse," she says. "So I'm just cruising. You can get to worrying about that diagnosis until you forget to live. I am choosing to live, each day, until I no longer can."

Valerie Harper agrees. She and her husband recently downsized to a condo closer to the Pacific Ocean, making it easier for their daily walks. Though her cancer is still present, her regimen of the drug Tarceva helped shrink it down to a fraction of where it was in 2013. "Every time we do scans, the doctor shows me. Where it used to be all white, now it's just a thin line."

Every day, she focuses on being thankful. "If fear or grief or terror move in on me, I let those emotions in, then I concentrate on being right here, right now, with gratitude. We are all terminal. Don't go to your funeral until the day of your funeral."