It was just after Christmas this year that my aunt got sick.
Everyone, including her, thought her illness was related to the fact she’d recently quit smoking. We assumed she’d get better soon. But by the first week of April, we discovered she’d been diagnosed with Stage IV ovarian cancer. It had already spread into her lungs and liver. Less than a week later, she died in hospice care. She would have turned 60 on Sept. 18.
According to the Ovarian Cancer National Alliance, ovarian cancer accounted for 15,500 deaths nationwide last year. The American Cancer Society estimates this year will see 22,240 new cases, and that 14,030 women will die of the disease across the country. Those numbers have remained relatively unchanged, going as far back as 1999. The disease has taken a number of prominent women, including comediennes Gilda Radner (age 42) and Madeline Kahn (57), and President Barack Obama’s mother, Ann Dunham (52).
September is National Ovarian Cancer Awareness Month, and one group of Tampa Bay women is trying to bring a message of personal awareness to the community. Florida ranked number two in the nation for ovarian cancer deaths and new diagnoses last year, but getting women to talk openly, even to doctors, about the subtle signs of a disease called the “silent killer” has proven just as difficult as diagnosing it.
Carla Jimenez, former owner of Inkwood Books in Tampa, went to her gynecologist for an annual check-up and was surprised to learn she’d lost weight.
“My doctor said, ‘Wow, good for you,’” Jimenez says. “I hadn’t been trying, but when you hear you’ve lost weight, you don’t think it’s bad news.”
She’d noticed some other changes in her body: pain during intercourse and feeling full too quickly when eating. But her doctor chalked up the changes to her age (she’d just turned 51) despite Jimenez’s questions.
“I would say now that neither my doctor nor I did a good job being direct with each other about what I was feeling,” Jimenez says. “More questions should’ve been asked.”
A few months later, she went to see her new primary care physician for a routine colonoscopy. The night before her appointment, she started experiencing bladder tenderness. The new doctor suspected diverticulitis, put her on a liquid diet with antibiotics, and awaited test results.
“Before the test results came back, I had this shortness of breath that felt like it was only in the left lung,” Jimenez said. She called her asthma doctor immediately, who told her “there’s no such thing as asthma in one lung,” and promptly sent her to the emergency room to rule out a pulmonary embolism. Turns out, Jimenez didn’t have diverticulitis.
“Next thing I’m in the ICU where they found clots on my lung and in my leg,” she said. In addition to pulmonary embolisms, doctors found a “cantaloupe-sized” ovarian tumor; she was Stage III-C, “one of the later stages.” Because of the blood clots, she awaited surgery and started eight rounds of chemotherapy, five before the surgery and three after. Treatment ended successfully in 2005, and she’s cancer-free today.
“I’m alive because of luck, but that shouldn’t be what it takes to be alive,” Jimenez said.
Jimenez is part of a local collective of women called Ovacome, Tampa Bay’s gynecological cancer alliance organization, a non-profit founded in 1999 to provide information and support on the disease.
“One of the reasons you haven’t heard that much about ovarian cancer is that four out of five women with my diagnosis are dead,” said Jimenez.
That’s partly why only 15 percent of ovarian cancer patients are diagnosed early — that and a lack of early-detection testing.
Kris Walker is one of the 15 percent who did get diagnosed early. She’s a 14-year survivor who can tell endless stories of medical mishaps, misdiagnoses, and getting brushed off by doctors who told her, “It’s all in your head.”
She still takes oral chemotherapy twice a day to keep the growth at bay, and says she “has a pretty good quality of life” these days. Her stories are not unlike that of a seasoned war general’s tales from the battlefield.
“I can’t tell you the number of women who were misdiagnosed with IBS or told it was all in their heads, even women at high risk,” Walker said. “Our first member [of Ovacome], her mother died of ovarian cancer. She got checked every six months but they didn’t run PET/CT scans [a combination of imaging tests that can show cancer growth] and she is gone now. She ended up passing away with Stage III ovarian cancer.”
Talking about the early warning signs of ovarian cancer requires a vocabulary that’s still not part of the greater public lexicon: an openness to discussing vaginal bleeding, constipation, abdominal pain, bladder tenderness, and painful intercourse.
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