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Beyond Survival

As cancer survivor numbers grow and longevity increases, researchers study how to ease symptoms and side effects. By Melissa Weber

Yonca Bulut isn't easily rattled. The pediatric critical care physician is used to taking control of hectic situations. But after finishing treatment for early stage breast cancer in 2011, she started to unravel.

 
Clinical Trials for Cancer Survivors
Survivors interested in clinical trials need to be well‑informed.
“I felt helpless about … the anxiety I felt worrying the cancer would come back. I hated that feeling,” Bulut says.

One of her doctors at UCLA’s Jonsson Comprehensive Cancer Center in Los Angeles told Bulut about a study investigating whether mindfulness meditation could help breast cancer survivors cope emotionally with their diagnoses. Bulut signed up immediately.

Over six weeks, the 49-year-old Los Angeles resident learned how to become more aware of her thoughts and feelings in a given moment—a mind-body connection that helped her develop a tough resilience to anxiety and stress. She relies on the practice most when she goes in for follow-up scans and tests to check for a recurrence. “The study helped me to regain control,” Bulut says. “So now, whether I have two months, two years or two decades, I can make every day count.”

That’s something an increasing number of people treated for cancer would like to achieve. The 13.7 million Americans who were cancer survivors in 2012 represent a significant increase from the 3 million survivors who were alive when President Richard M. Nixon declared war on cancer in 1971. By 2022, the number of survivors is expected to grow to 18 million. The reasons aren’t complicated: An aging population and increased screening mean more people are diagnosed, and better treatments can result in survival for years, even decades, after diagnosis.

This hasn’t gone unnoticed by cancer researchers, who are now expanding efforts to determine what the future holds for survivors. The proof is in the federal pudding: The National Cancer Institute (NCI), the U.S. government’s primary agency for cancer research, spent nearly $270 million in 2012 on survivorship research—more than double what the agency allocated a decade earlier. The goal of such research is to maximize not only how long but how well cancer patients survive.

Survivorship Research Comes Into Its Own
The current attention to survivorship is a far cry from what medical oncologist Patricia Ganz remembers from three decades ago, when she launched one of the first research studies of cancer survivors in 1983. In an early report, Ganz and her colleagues explored the changes in the body, mind and quality of life of 50 women who had been diagnosed with stage I or II breast cancer. At the time, it was a revolutionary idea. “In the old days, doctors were just so happy to have somebody survive. They didn’t worry about how [treatment] affected people afterward,” says Ganz, the director of the UCLA-Livestrong Survivorship Center of Excellence. She is also heading up the mindfulness meditation study that Bulut joined.
13.7 MILLION
The number of Americans who were surviving cancer in 2012
 
What were once only a few studies now number in the thousands: A September 2013 search of the National Institutes of Health website ClinicalTrials.gov found more than 7,000 cancer survivorship studies taking place nationwide. Two pivotal events helped bring about this change.

The first happened in 1986, when Ganz and 22 cancer patient advocates founded the National Coalition for Cancer Survivorship, the first advocacy organization for cancer survivors. A decade later, the coalition published a report that persuaded the NCI director to create the Office of Cancer Survivorship, with the mission of conducting and supporting research to improve the length and quality of survivors’ lives. The federal government’s seal of approval gave new legitimacy to studying the post-treatment experience, and grant money was available to support it. In 2010, there were five times the number of cancer survivor studies published in scientific journals than in 1996, the year the Office of Cancer Survivorship was created, according to a study in the October 2011 issue of Cancer Epidemiology, Biomarkers & Prevention.
 
As the number of studies grew, so did the means for distributing the findings. The Biennial Cancer Survivorship Research Conference, started in 2002 by the NCI’s Office of Cancer Survivorship and the American Cancer Society (ACS), has become a leading forum for researchers to share their work. In 2006, the American Society of Clinical Oncology (ASCO) added a survivor care research track to its annual meeting for the first time. And the quarterly Journal of Cancer Survivorship was launched in 2007.
 

10/17/2013
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