Tampa Bay Area Ovarian Cancer Survivors Are Raising Awareness

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.

“When Betty Ford came out with her breast cancer diagnosis, no one was talking about breasts except in titillating sexy conversations,” Jimenez said. “We need to get over this fear of talking about the body.”

Jimenez and Walker are ardent advocates of women’s listening to their bodies and looking for changes, even if subtle.

“Because a lot of us are really busy, we don’t want to slow down long enough to pay attention to our bodies,” Jimenez said.

That’s where Ad 2 Tampa Bay’s public service campaign came along in 2012. The organization of young advertising professionals chose Ovacome as its 2012/2013 public service client out of a stack of applications from other non-profits.

The Ovacome campaign was a decidedly harder challenge from the get-go, said Ad 2 Public Service Director Hunter Taylor and Creative Director Allyson Simms.

“There were other applicants with easier, perfectly packaged and bundled campaigns,” Simms said. “But these women were doing all this hard work after working 9-5 jobs, going through chemotherapy, and then coming together to do this. We knew Ovacome was the right decision.”

Branding a campaign from almost nothing for a disease that’s called the “silent killer” was no easy task.

“It’s like, ‘Be aware of this cancer that is dangerous and deadly but there is no test, no real screening process,’” Taylor said. “Eventually we learned there are symptoms, but they’re subtle. You have to be aware of your body. Like Kim [Snyder, president of Ovacome] did, you have to be your own healthcare advocate. That’s why we chose that tagline.”

The tagline? “Trust your gut.”

The idea of incorporating a lotus flower into the branding came to Simms after lengthy conversations with the Ovacome women.

“They all have this fighter mentality, and despite being in this room together for an ugly reason, something beautiful happened,” Simms said. “The lotus flower is something beautiful that grows out of the mud and muck. It comes up to bask its beautiful petals in the sun. Cancer is the mud and muck, but when these women got together, they just bloomed.”

Advertising, branding, and a good campaign can make the difference in whether or not a message gets out to the public. When it comes to illnesses like gynecological cancer, it’s literally a matter of life or death. So Taylor and Simms decided to tackle the difficult subject head on with an in-your-face campaign featuring lines like “Painful sex can save lives” and “Belly bloat is cause for celebration.”

For visuals, Ad2 decided they wanted to focus on the women of Ovacome themselves.

“We don’t have boobies like breast cancer does,” Taylor said. “You can’t show it because it’s internal. Luckily, we had these brave women who wanted to raise awareness and were willing participants.”

Despite the fact that none of these women particularly wanted to plaster their faces and stories on billboards across Tampa Bay (HART and Clear Channel donated advertising space), Walker, Jimenez and others didn’t hesitate.

“The Trust Your Gut campaign couldn’t be more important,” Jimenez said. “It’s about women and doctors having open and direct conversations about sexual activity and what women are experiencing. We’re over being shy. We’re ready to get sassy.”

The campaign ran on billboards locally, in newspapers, and on the back of Hillsborough city buses. Unfortunately for Ovacome, Taylor and Simms, those donating the advertising space found the “painful sex” and “constipation” advertisements too taboo for their audience.

Alternate versions of the ad ran, but Simms and Taylor admit it was disappointing.

“It was heartbreaking,” Simms said. “But we realized even Tampa wasn’t ready for the message yet.”

To that point, Jimenez and Walker both reference the 2011 debacle on the floor of the Florida House of Representatives when Orlando Democrat Scott Randolph got in trouble for saying “uterus” and was instructed by GOP leadership not to “discuss body parts on the house floor in the future.”

 

“We have fewer voices because the mortality rate is so high,” Jimenez said. “But part of the challenge is talking about parts of the body that are still considered to be taboo.”

Age is part of the equation, too.

Though the median age for women’s diagnoses is 63, Walker warned, “I was 39. Another woman in our group was 17. It can hit any woman at any age.”

“People are starting to realize this isn’t just an older women’s post-menopausal disease. Younger women are affected by it, too,” Jimenez said.

And even women who’ve had complete hysterectomies are still at risk. “It’s rare but it does happen,” Walker said. “I’ve known three women in my circle with it. It’s not that rare.”

This summer, nine of Tampa’s Ovacome women headed to Washington D.C. for a national conference on the issue, and visited representatives in the Capitol to ask that funding be protected and increased wherever possible. Current federal funding for ovarian cancer research is around $20 million, out of the nearly $4.9 billion allotted for all cancer research. And budget cuts removed an additional $293 million from that number this year.

Until early detection testing comes along (which hinges on more funding), the best advice survivors like Walker can offer is this: “Women need to advocate for themselves. Make your doctor prove to you that you don’t have ovarian cancer. Tell them, ‘You prove to me that I’m wrong.’”

Every 24 minutes, another woman is diagnosed with ovarian cancer.

“This has the potential to touch your life very closely,” Jimenez said. “And it is always a surprise.”

 

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