Don’t call ovarian cancer “the silent killer” around Nancy Hines. She is on a mission to stamp out that notion. The disease wasn’t so silent in her case—nor was it for the other women with the same diagnosis with whom she became friends during their cancer treatments almost 20 years ago. Since then, Hines has been dedicated to educating people about the potential warning signs.
“Pam Faerber and I had eight-and-a-half hours of chemo together every three weeks, and we’d talk,” says Hines, who’s based near Indianapolis. “We discovered that we were diagnosed in the same stage of cancer (stage one, an early and rare stage of diagnosis with ovarian cancer that offers the best prospects for survival), we had the same doctor, and” — Hines pauses here for effect — “we both had symptoms!”
The more patients they talked to, including Kai Binford, who was also diagnosed in the early stages, the more stories they heard about the similar symptoms, which may include bloating, abdominal pain, or urinary problems. They began to think that maybe there could, indeed, be early warning signs for ovarian cancer, if a woman and her doctor knew what to look for.
It was a Eureka moment for the women: Perhaps early-stage ovarian cancer—so rarely diagnosed—had brought them together for a reason. “It was as if all this was meant to be. We were all going to be fine, so we could do something to right this wrong idea that ovarian cancer has no symptoms,” says Hines.
Birth of a Mission
So began Hines’ 19 years of work as cofounder (along with Faerber and Binford) of Ovar’coming Together, a volunteer organization powered primarily by ovarian cancer survivors seeking to raise awareness about this cancer and its symptoms, provide peer support to women and their caregivers, and help fund research into an early detection test and a cure. The survival rate for ovarian cancer is 92 percent if it’s caught in its early stages, but that only occurs in about 15 percent of cases, because early symptoms resemble those of many other ailments, says Hines. When discovered in its later stages, the survival rate for ovarian cancer drops to 45 percent, according to the American Cancer Society.
Just two years after launching Ovar’coming Together in the Indianapolis area, the three friends helped cofound the Ovarian Cancer National Alliance, based in Washington, D.C., to help give the cause a national presence.
In 2007, through the collaborative efforts of OCNA and several of its state-based partner organizations like Ovar’coming Together, the American Cancer Society released the first-ever consensus statement regarding the symptoms of ovarian cancer. Those symptoms can also include: pelvic pain, difficulty eating or feeling full quickly, and frequent urination. Hines says in her case, she also felt exhausted almost all the time, “and not right for me, because I always have a lot of energy.”
Indeed, Hines has had the stamina to keep up her real estate career for almost 37 years, raise four children, and dote on three grandchildren, all of whom live near her. And for more than a decade, Hines has also served on the board of the Office of Women’s Health for the state of Indiana, helping to ensure that women have access to free and reliable health resources.
“She’s a tireless worker,” Faerber says of her cofounder and longtime friend, noting that getting the organization on its feet was nearly a full-time job for all of them in the early years, with Hines focused on education and outreach. They created educational pamphlets and worked with pharmacies and doctors’ offices to place them; got local TV anchorwomen to make public service announcements; and spoke before community groups and boards of doctors and at health fairs to raise awareness of the symptoms of ovarian cancer.
Giving Back Gives Her Strength
For the past 10 years, Ovar’Coming Together has had a paid executive director and two other full-time staff, but volunteers still are a driving force in the organization, particularly when it comes to community outreach and peer support.
Supporting others in crisis is where Hines really shines, says Faeber. “She has a special talent for working with women and their families who are in the overwhelming, often painful early days of a cancer diagnosis,” she adds.
Robin Jackson, Ovar’coming Together’s executive director, agrees. “Nancy gives newly diagnosed women and their families friendship and hope; they can see the way she accepts her disease with grace and lightheartedness.” Embodying strength, courage, and a relentlessly positive attitude, Hines successfully weathered breast cancer a year before she was diagnosed with ovarian cancer. The next year, in 1995, her husband died suddenly. “He was by my side through everything,” Hines says softly, “and my illnesses were hard on him.” Breast cancer came back again for Hines in 2004 and 2008, but she’s fine now, she says.
“Nancy has this energy and passion and love for people that’s just contagious,” says Robert Whiteside III, former board president of Ovar’coming Together.
It was at a run/walk for ovarian cancer that Whiteside first met Hines, not long after his wife passed away at the age of 25, leaving him to raise two sons, ages one and three. “My wife was a young mom, an active person, no one you’d think about as possibly having cancer. And we didn’t know anything about what the symptoms were.
“Nancy really makes you want to up your game for the cause. I’m an active man in my 30s, and I can hardly keep up with her,” says Whiteside, who credits Hines and her organization with helping him “heal, give back, and help others” after such a devastating loss.
For Hines, it’s also matter of giving back. “I’ve been given so much. I am so blessed to have survived all these cancers. And where much is given, much is expected. I really believe we are called to give back in some way for the blessings we’ve received,” says Hines. “And for me, every day is a gift.”