Beating the Odds: Cancer Survivors' Success Stories

Ashtyn Brown recalls the day she started to understand how sick she was. She was 9 years old and lying in her hospital bed at Riley Hospital for Children in Indianapolis, and she couldn't breathe. She had an oxygen port, but she hated using it -- especially the nose clips.

"Lying there, I realized the next breath wasn't going to come ... I was literally fighting for the next one to come," says Brown, who is now a 21-year-old communications student at the University of Indianapolis.

It wasn't until some years after that moment that Brown understood how close she had been to dying, since she was diagnosed with acute lymphoblastic leukemia at age 6. She was watching the St. Jude's Telethon with her parents, who always had a tough time watching the annual fundraising event to raise money for sick children. It was only then that Brown knew why. "They told me, 'Ashtyn, you realize you only had a 10 percent chance to live,'" Brown says.

Brown had no idea. "There's nothing like the innocence of a child," she says. "Never once did death cross my mind."

That outlook may have helped save Brown, but so did drugs, luck and her own body. Now, as a Children's Miracle Network ambassador, she speaks about her survival to inspire others.

"I'm Not Average"

The power of one uplifting story, especially in a sea of grim tales regarding cancer, is something that one organization has taken to heart. Pharmaceutical Research and Manufacturers of America, or PhRMA for short, launched a campaign called "I'm Not Average," which highlights cancer survivors who have beaten the odds.

Take Marina Symcox, diagnosed with a rare form of sarcoma in 1997. "By the time I had symptoms, I had a 22-inch tumor," Symcox says, adding, "I already had numerous lesions in my liver that were entirely inoperable. I knew I was in trouble."

Symcox joined a patient support group for others with her condition. "You were just on a scavenger hunt, traveling coast to coast [looking for treatments]," she says of the group members. Someone in the group knew a doctor who knew about a new drug coming down the pike called Gleevec. "I was in the right patient grapevine," Symcox says, adding that she and other group members were some of the first patients to take Gleevec, which became known as a miracle drug because of its ability to target cancer at the cellular and subcellular level while causing few side effects.

The drug was still in trial when Symcox took it, and her husband found a trial that she could possibly participate in. She was so sick that "getting me from where I live near Tulsa, Oklahoma, to the trial was a feat," she says. And once she got to the Oregon Health & Science University in Portland, her white blood count was too low for the trial cutoff. But the trial coordinators took her count a second time, and her levels had risen -- just enough to slip Symcox into the trial that would save her life.

"Easily within 36 hours of the first dose, I could tell my liver, which was so large that I wore maternity pants, had gotten softer," Symcox says. And 16-and-a-half years later, she's still taking Gleevec, leading a fairly normal life, she adds.

The secrets to her survival?

"Medical science serendipitously caught up to my needs," she says. "If you take the Internet out of the equation, I would not have survived."

Apart from providing Symcox with information on the miracle drug, the Internet was the platform that gave her an immediate support network. "When a patient is in a very desperate state, you do need community," she says.

Be Your Own Advocate

Many survivors say that behind their survival is also the ability to steer their own care and be on top of treatment options. This may seem like a burdensome task on top of a devastating diagnosis, but for many survivors, the instinct to take control automatically kicks in. Dian "CJ" Corneliussen-James, of Annapolis, Maryland, says she ran into obstacles. She was losing weight and pushed her primary care doctor to order scans and refer her to an oncologist. The oncologist said the scans were normal, which Corneliussen-James didn't entirely trust. "Two months later, I went to my primary care physician. He said the scan had shown an extremely fast-growing tumor," she says. "For many patients that I talk to, it was not their oncologist who found their cancer -- it was the doctor who listened to them."

After that, Corneliussen-James was told she couldn't have surgery because her cancer had already metastasized. But since there was only one metastasis in one lobe of her lung, she insisted. "I found one isolated report that recommended surgery in those cases," she says, adding that her doctors then agreed to remove the entire lobe. Then she was told she couldn't have follow-up treatment because there was no evidence of disease. "I pushed, and found there was a drug they could put me on [called Faslodex]," she says. "I am still on that drug eight years later."

Corneliussen-James says that after all these frustrations, she decided to interview three oncologists before finding the right one. "You're going to be with this oncologist for the rest of your life, so you want to feel like [he or she] listens to you."

She was close to several top-notch medical facilities and ended up going to Johns Hopkins Hospital in Baltimore, but she advises people in more remote areas to get themselves to a National Cancer Institute-designated cancer center for at least a second opinion.

Matt Ellefson, a non-small-cell lung cancer survivor in Sioux Falls, South Dakota, has coined the "five pillars of health" that improve survival in addition to the right medication: nourishment, physical activity, rest, support and living in a clean environment. "If you're not at peace with yourself, you are not going to do well," Ellefson says. "Doubt and fear in cancer are your worst enemies."

Positive Stories Help in the Clinic

Kashyap Patel, an oncologist in Rock Hill, South Carolina, has created a "buddy system" in his clinic, whereby he pairs newly diagnosed patients with patients who have beat the odds. "Everybody needs hope," he says, adding that this gesture alone infuses patients with hope instead of despair -- since how the doctor delivers a diagnosis has a strong emotional and psychological effect.

Patel adds that patient-to-patient contact has a human element he often cannot provide. The positive stories also help Patel, as a physician, overcome "compassion fatigue." "It allows me to keep doing what I am doing for a living," he says.

Kristine Crane is a Patient Advice reporter at U.S. News. You can follow her on Twitter, connect with her on LinkedIn or email her at kcrane@usnews.com.