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By Meira Gebel, USA TODAY
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NEW YORK – On her first day of chemotherapy, Jessica Tousignant walked into Swedish Cancer Institute in Seattle wearing high heels, a vintage mink-lined fur coat and red lipstick. She wasn’t ready to let her diagnosis of stage 3 breast cancer dictate her life. Or what she wore.
“I’m not wearing one of those cancer hats,’ she said. “And I’m not going to be the pitiful patient. I’m not letting cancer take over any more than it has.’
But just an hour later, she was slumped over an armchair with a needle in her chest, weakened by an aggressive cocktail of drugs in her veins and would continue to be for the next 21 weeks.
Tousignant’s journey with breast cancer still puzzles her: She feels like her doctors never gave her the full picture. When she began falling up and down the stairs, Tousignant noticed her feet becoming numb and her toenails turning black. Then, they popped off – a side effect from chemotherapy she wished her doctors prepared her for. She was tired of being called a “pink ribbon warrior’ whenever she asked her medical team tough questions about the future of her fertility or whether she could work through her treatment.
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“I’m actually a young, hardworking, intelligent” woman who “just wants information,” she said.
This year, Tousignant, 35, is preparing to launch her own nonprofit, Seattle-based Open to the Front, advocating for better medical, mental health and financial transparency for younger, LGBTQ and minority patients with cancer.
She believes the popularization of “pink washing,’ the commodification of breast cancer, is dangerous, and the all-out October marketing has made some women think lightly of their diagnosis. Tousignant’s frustration with the pink ribbon is what turned her into a patient advocate, and a no-nonsense approach to navigating medical treatment and its financials is how she hopes to run her future 501c(3).
Before her diagnosis, Tousignant was content. She was a healthy, 28-year-old wine importer and soon-to-be sommelier. She had insurance, she just never used it. In the beginning of 2012, her boyfriend noticed a lump in her left breast. She had an IUD and would occasionally get bumps in her breasts. But her boyfriend seemed worried, so she called her gynecologist, who told her to give it a month.
One month turned into three months.
Tousignant felt the lump grow. It changed shape and got bigger. She made an appointment.
Tousignant’s best friend insisted on coming. What was meant to be a 30-minute check-up turned into nearly three hours. She had a breast exam, a mammogram and a biopsy. Her happy-go-lucky attitude shifted as she left the doctor‘s office. Though her gynecologist never said the word cancer, Tousignant knew the impending news wouldn’t be good.
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“We knew that if it was cancer and it had spread to my lymphatic system, it easily could mean that it was really advanced,’ she said.
The next day there was a mass shooting in Seattle at the cafe where her sister worked. As Tousignant watched footage of the shooting on television, her gynecologist called suggesting she look into seeing a specialist, then the doctor listed the names of oncologists. The word “cancer’ didn’t come up.
“She kept on saying, ‘If I have cancer, I would do this,’ ‘ she remembered. “I kept on thinking, ‘Wait a second, are you telling me I have cancer?’ ‘
Moments later, her sister called to say she was OK. Then Tousignant began calling oncologists.
The percentage of young women who are diagnosed with stage 3 breast cancer – when tumors have moved to different lymph nodes, but not distant organs – is fairly low, said Dr. Otis Brawley, the chief medical officer of American Cancer Society. But a diagnosis at a young age is not unheard of.
“We make it sound like breast cancer is a disease for young women,’ he said. “Whenever you see advertisements, it’s always a woman in her 30s, but the average diagnosis age is actually 64.’
Breast cancer in younger women tends to be more aggressive, too, compared to older women, Brawley said.
The five-year survival rate for stage 3 breast cancers is about 72 percent, according to the American Cancer Society, yet has a greater chance of recurrence. With new developments in medical therapies, cancer treatment can be much more than just routine chemotherapy and radiation. Targeted treatments and clinical trials, thanks to recent and developing medical technology, are part of more personalized treatment plans.
Tousignant’s private insurance covered the basics of her cancer treatment: 18 courses of chemotherapy, seven weeks of radiation and more than 13 different surgeries in Miami, where she saw a breast reconstruction specialist, and Seattle over the last three years.
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But it did not cover outlying expenses, such as food, prescriptions, travel and alternative medicine, such as acupuncture and massages – totaling nearly $130,000.
She wasn’t close with her family, but she had friends across the liquor industry with deep pockets. A fundraiser for Tousignant raised nearly $7,000 with online donations and an auction.
After a year of constant trips to the hospital, Tousignant was declared NED, or no evidence of disease.
But her active treatment wasn’t over. Tousignant’s type of breast cancer is triggered by estrogen, so she is required to take an estrogen inhibitor daily, Tamoxifen, and have scans every six months. Without the drug, her survival rate sharply drops to 23 percent. Looking back, she said the experience made her cynical.
“There’s a lot of marketing behind breast cancer,’ she said. “It’s a lot of pink tutus and calling people warriors and that’s not real. I wanted information not empty words of encouragement. I want people to connect in a real way.’
Open to the Front, Tousignant’s nonprofit, will operate in three parts, she said. The first, a website, will showcase stories and provide information on how to navigate cancer financially. Second, an app, in the style of OkCupid, will connect those recently diagnosed with those who have undergone treatment. And lastly, the nonprofit will work with mental health nonprofits in Seattle to help provide funding for copays for those seeking services.
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But running a nonprofit is not easy. Those who do decide to give charitable donations are shifting to the individual, with the rise of crowdfunding, rather than the organization.
Despite forthcoming challenges, Tousignant remains focused. She left her job as vice president at the northwest’s second-largest distillery earlier this year and is taking her new project head on.
“I want young women to know how to go through the medical system and not be called sweetie,’ she said. “Because when you talk about cancer you’re talking about death.’
Follow Meira Gebel on Twitter: @MeiraGebel
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