Shawn Ware felt a small lump in her breast while in the shower on January 2nd, 2009, and on that day, the journey on the fight against breast cancer began for Shawn, her husband Albert, daughter Demitria, son Jalen, and mother Eva Freeman. As part of her treatment plan, Shawn underwent a lumpectomy and additional treatment with radiation therapy and chemotherapy.
“You know those side effects that you see in fine print? I had all those and more,” she says, somehow able to laugh about them now. “I didn’t know that your eyelashes act as windshield wipers, and when I lost mine, I had to wear glasses just to keep things from getting in my eyes.”
Shawn triumphed. “I was ready to conquer the world after my last round of radiation,” she says. And three years later, she is considered a survivor and a reason for celebration.
“Cancer, it stinks,” says Shawn, the general manager of Blomeyer Health Fitness Center at Emory. “But you do change. You certainly learn to appreciate the good and not let the little things bother you any more.”
Like millions of other Americans, Shawn is part of a growing trend—more people than ever are surviving cancer. In just six years, the number of cancer survivors has jumped by almost 20 percent, according to the Centers for Disease Control and Prevention and the National Cancer Institute—11.7 million in 2007, up from 9.8 million in 2001, the most recent years available.
The good news comes with some challenges, however. As cancer treatment has become more successful, survivors —and their caregivers and providers—have learned that there is a cost to surviving.
“Long-term survivorship starts on the day treatment ends,” says nurse practitioner Joan Giblin, the director of Winship’s new Survivorship Program. “You’re actively doing something during treatment, but when treatment ends, many patients tell us they feel like they have been set adrift without a clear course. Our survivorship program is trying to bridge that gap and provide survivors with tools for these difficult times.”
Giblin says that some survivors respond by isolating themselves. Still others “jump right back into their old lives or try to adjust to a new life by adapting to any after-effects they may still be experiencing.”
Survivors of all types of cancer can face myriad physical issues. Treatment itself can be so hard on the body that survivors sometimes suffer chronic pain, heart problems, depression, sexual dysfunction, and a mental fogginess dubbed “chemo brain.” They also are at heightened risk for recurrence and secondary cancers.
Physical problems arise within individual cancer groups. For example, head and neck cancer patients often have trouble swallowing and lose their sense of taste. Breast cancer patients must deal with the changes that come as a result of a lumpectomy or mastectomy and reconstruction.
In addition, family and relationship problems may arise as all in a survivor’s relationship network struggle to adjust to cancer and life after cancer. Emotional challenges abound, from sadness, fear, and anger to serious depression. Fatigue is common.
Winship Cancer Institute is helping survivors deal not only with the late physical effects of cancer but also with the psychological and social issues that are part of surviving.
“We are now defining a ‘new normal’ for these patients,” says Giblin. “There can be long-term after-effects when treated for cancer, and we are finding ways to improve their quality of life while providing guidance on strategies for dealing with these after-effects.”
The Winship Survivorship Program officially started in November, 2011. Already more than 10 Winship survivorship “clinics” are being offered, focusing on survivors of 10 different cancer categories. The program holds workshops on such vital topics as nutrition, preventing lymphedema, how to talk to children about cancer, spirituality and pet therapy. Workshops have been held on sexuality and also on fatigue. In May, Winship announced its collaboration with the YMCA of Metro Atlanta for a special exercise program for cancer survivors. A unique collaboration, Winship at the Y was Giblin’s brainchild. She is at the hub of a very extensive interdisciplinary wheel that involves specialists from a wide range of treatment areas, including nutrition, pain management, and psychiatry to help survivors thrive.
“We have to change how we look at cancer patients,” Giblin says. “Many cancers are not curable in a conventional sense, but the improvement in the quality and quantity of life needs to be our priority. Much as we view diabetes as a chronic condition, we must look at many cancers in the same way.”
Head and neck cancer survivor Barry Elson, 70, had difficulty swallowing after his treatment. Barry, who was first diagnosed in 2003, had an esophageal dilation last year to improve his ability to swallow.
“I think in the press of your day-to-day survivorship, you forget to ask what (the treatment) might do to your long-term quality of life,” Barry says.
Shawn found that exercise has not only helped her gain physical strength but also has helped her mental outlook. Shawn was able to exercise throughout most of her treatment, even as ill as she was. Now, her worst worry is fatigue. But that doesn’t slow her down. In her job as fitness manager at Blomeyer, she conducts “boot camp” training sessions and teaches other classes.
Winship is also helping survivors thrive by providing support services to help survivors cope with employment and insurance issues that arise as a result of their cancer.
“After treatment,” Giblin says, “patients tend to not be able to work as long, and they don’t have the stamina they used to have.” In addition, there can be stigma in the workplace against a cancer survivor, which in times of layoffs, can result in their loss of employment and consequently, loss of benefits.
“It’s the people who can’t afford to lose their jobs who do,” she says.
And even in cases where survivors keep their insurance benefits, they might find a lack of integrated care as they celebrate more birthdays.
Paper records are lost through the years, hospitals and oncology offices change and primary care physicians—who don’t have experience in oncology —aren’t prepared or educated to provide the ongoing care cancer survivors need.
Barry says he fared well—a result, in part, of diligent Winship physicians Amy Chen and Dong Moon Shin, and the nursing staff—including Giblin.
Despite the side effects she faced during treatment, Shawn says she has grown from her cancer experience.
It makes her a stronger survivor, she says, and also more hopeful, optimistic, and motivated.
“It’s almost motivated me to do more,” she says. “It really helps me to live day by day. You make every day everlasting.”