It's the club that nobody wants to join, said Destin resident Kay Bonn.
According to the American Cancer Society, 1 in 72 women in the United States will develop ovarian cancer in her lifetime. While two of three cases occur in women over the age of 55, younger women are still at risk, as well as women with a personal history of breast, uterus, colon or rectal cancers.
During the month of September, also known as Ovarian Cancer Awareness Month, it’s as good a time as any to get informed. Armed with knowledge and first-hand experiences, Bonn and several local women are on a mission to inform women of all ages about ovarian cancer.
Bonn was diagnosed with ovarian cancer in 2010.
"I hadn't given ovarian cancer a thought," she said. "After a certain age, you think all of that stuff is over."
She was consulting with her gynecologist over urinary issues and wasn't prepared for her diagnosis. She had Stage 3 ovarian cancer. She began treatment and after 13 months of remission, she started treatment again in August 2011. Since March, her cancer is in remission again and her hair is starting to grow back.
Today, she cannot stress enough the importance of knowing all of the symptoms of ovarian cancer, which is known as "the silent killer" because symptoms are vague and often not diagnosed until reaching an advanced stage.
"If I had been aware of urinary problems being one of the symptoms of the disease, I could have been tested sooner and had a better prognosis," she said.
Sandestin resident, JoAnn Vance, the "champion chemo girl" as the group calls her, started to see the symptoms of ovarian cancer in December 2010. A year later she went to her doctor and told her she thought she had ovarian cancer. She unfortunately was right.
She went through surgery and three rounds of chemotherapy and today is cancer-free.
Barbara Young of Santa Rosa Beach, "the lucky one," only had to do one round of treatment and hasn't had a recurrence since her October 2010 diagnosis.
"We all hang our hope on Barbara," Bonn said.
Miramar Beach resident Patti Kunkel, "the newbie," was diagnosed this past May.
"It's very sneaky and very aggressive," she said. "When I was diagnosed it had already spread, but I'm not in the obituary column yet."
Linked through mutual friendships, the women decided to start a support group to offer one another advice and to share stories in 2011.
"I wanted to collect all the information I could," Bonn said.
"But it didn't seem to me that there was much info out there," Young added.
Initially, Bonn had reservations about joining a support group.
"I thought it would just be depressing," she said.
However, it's quite the opposite.
Inside Vue on 30A recently, a few of the group's women are meeting for lunch. They share jokes and complement their teal ensembles — the color represents ovarian cancer awareness.
"To know that there is somebody else going through what I have been through helps so much," Vance said.
As a group, the women would like to share information with anyone and everyone — in Destin and beyond.
"We just want more people to be aware," Young said.
Ovarian cancer is the ninth most common cancer among women excluding, non-melanoma skin cancers, and is the fourth leading cause of death in American women.
"Listen to your body," Vance advises women. "Do not, under any circumstances, feel intimidated to speak up."
Yearly pap smears do not detect ovarian cancer. Instead women need to pay close attention to symptoms such as bloating, or digestive and urinary issues lasting longer than a few days.
"We lost one of our gals — she was 51," Young recalled. "She was so angry and would say, 'I always had my pap smear and mammogram.'"
While the closest gynecological oncologist is in Pensacola, the group gives rave reviews to care they received at the cancer center at Sacred Heart on the Emerald Coast.
There is currently no recommended method of screening ovarian cancer. If you have symptoms, ask your doctor about: recto-pelvic exams, testing your blood for CA125, which is a protein found in greater concentration in tumor cells, trans-vaginal sonograms and biopsies. And don't be afraid to reach out for help and support.
"It's a journey," Kunkel said of battling cancer. "And it helps to share those feelings with someone on the same journey."