By Steve Kaufman
Photos by Frankie Steele
Caroline Johnson, who heads Twisted Pink, is afraid women will get the idea that early detection and some successful treatment is enough. It’s not. She should know.
Caroline Johnson thinks that the traditional, iconic pink ribbon, the well-known symbol that heralds October’s Breast Cancer Awareness Month, is soft, reassuring and hopeful.
She also thinks it’s dangerously misleading, falsely positive and a thorough misrepresentation of the real dangers of breast cancer in women.
Johnson is no dilettante in the world of breast cancer treatment. She was a 39-year-old woman (one month short of her 40th birthday), young mother of three, when she was diagnosed with breast cancer after finding a lump in her breast. (And this, by the way, seven years after receiving a cancer-free mammogram.) She had a year of radiation treatments, and emerged as what she thought was cancer-free. The five-year “Get Out of Jail” card that everyone points to as a positive outcome was working in her favor.
But not so fast. What she learned is that 20 to 30 percent of women who get breast cancer will have that cancer metastasize and spread to the bones, brain, liver or lungs. And what she also learned is that very little cancer research – including very little of the money raised by all the pink ribbon campaigns – is devoted to investigating the factors that cause metastasizing.
“Breast cancer won’t kill you if it remains in the breast,” says Johnson, who is familiar with all the texts and studies. But too often it doesn’t remain in the breast.
The wicked facts are these:
• More than 230,000 people are diagnosed with breast cancer each year in the United States. (Johnson emphasizes that men, too, can acquire breast cancer, though it’s a relatively small percentage.)
• In 35 percent of those case, the cancer metastasizes. Either it was metastatic (or Stage IV) from the very beginning, or it eventually progressed to Stage IV.
• In the end, approximately 40,000 die from metastatic breast cancer every year in the U.S. That’s roughly 30 percent of all breast cancer cases. And it hasn’t changed in 30 years.
• And yet, it is estimated that in the US only two to three percent of all funding for breast cancer research is dedicated to metastatic breast cancer.
Johnson has little time for the homilies, raised fists and brave encouragements that accompany the ordinary breast cancer prevention efforts. “Early detection might save treatments,” she declares, “but it does not save lives.”
She thinks the happy message that 98 percent of breast cancer sufferers can survive five years is a mixed blessing. “I’m 44,” she asserts. “I want to feel I can live beyond 49.”
She says she’s angered by the message of the happy pink ribbon. “I think people feel the battle is being won because they see people celebrating their survivorship. But what little cruel tricks might be facing those women just down the road. I don’t want to forget about them.”
The message from the media and the breast cancer awareness campaigns is misleading and hurtful. “I think women are being tricked into the idea that we’ve won the battle, and we really haven’t,” she says. “We’re no closer to winning the battle than we were 30 years ago.”
Thus the start of her organization, Twisted Pink, which has created a new form for the familiar ribbon, which is a bit less soft and fuzzy. “The battle has not been won,” she says. “I’m all for celebrating survivorship. I celebrate survivorship every day of my life. But I don’t want to forget those women who aren’t surviving. Those women could be us one day, and I think a lot of breast cancer patients don’t realize that because of the message they’re getting from the media and breast cancer awareness campaigns.”
Johnson has become an unwilling advocate, a fighter who goes to the state legislature to plead her case.
“We’re working with other organizations to get people to hear us and change the way this will be handled,” she says. “We need breast cancer patients to step up and say, ‘This is not acceptable.’ I want breast cancer patients who are surviving breast cancer to put these men and women who have metastasized and are dying of breast cancer in the front of the pink ribbon. Right now, they’re behind it. They’ve been left behind. They are simply not being recognized.”
So Johnson will head into October’s Breast Cancer Awareness month with a different call for a different awareness. On October 19, the organization will hold its second annual Pink Woman fashion show at Oxmoor Center, sponsored by the mall, the medical practice All Women OB/GYN and Today’s Woman magazine. There will be the fashion show and a VIP reception, starting with registration at 5:30 p.m. Tickets are $40, and can be purchased on the sites twistedpink.org or todayswomannow.com. There were 100 in attendance last year and Johnson is hoping to double that.
The organization has garnered support. Texas Roadhouse recently signed on as the $10,000 title sponsor for Twisted Pink’s masquerade ball in January. “Brown-Forman is always a significant supporter,” says Johnson, and the nine-person board includes Middleton Reutlinger attorney James Cole and State Senator Julie Raque Adams.
“Julie Adams is on the Senate Health and Welfare Committee,” says Johnson, “and we will be appearing before the committee this month.”
To scare people about breast cancer’s realities? Johnson would recoil from that very thought. In a positive way. “We don’t want to scare people, we want to make the facts known,” she says. “We still have a lot of work to do in the fight against breast cancer if we’re going to save lives.”
And the work is to make women see the pink ribbon and look beyond “survivor.” “There’s a lot of positive around the pink ribbon,” she says. “It represents beauty and survivorship, putting a pretty package on an awful disease. But how can we not have found a cure for breast cancer after 30 years of dumping money into this horrible disease. So much more has to be done to fund research – the right kind of research.” VT