From the countless participants in this weekend’s fundraising walks to well-known survivors like Elizabeth Edwards and Christina Applegate, today’s breast cancer patients tend to handle their disease with great openness.
Yet some women, whether for personal or professional reasons, prefer to go against the tenor of the times by keeping their illness a closely-held secret. They include Rutgers basketball coach C. Vivian Stringer, who traveled to Philadelphia for her radiation treatment just so she wouldn’t be recognized, and actress Edie Falco, who continued to film "Sopranos" episodes during her chemotherapy without going public.
"It’s almost as if you’re naked, as if you’ve been unclothed," said Stringer of how it felt once her 1999 illness became widely known two years ago. "There are just some things you want to keep to yourself."
Breast cancer professionals say it is the rare woman who tells no one. Yet many women keep a tight rein on who knows what about their illness.
Some are reluctant to tell their elderly mothers for fear they’ll panic, said Miladys Diaz, a breast nurse navigator at the Carol G. Simon Cancer Center at Morristown Memorial Hospital.
Others want to keep the news from their employer. "They’re afraid of losing their job — especially in this economy," she said.
"It’s all individualized," said Diaz. "Not telling someone has to do with personality. Some women don’t care who knows — they can walk without their hair— and others spend thousands of dollars on a wig so no one knows."
Stringer’s concern was more personal than professional. Diagnosed after a mammogram in 1999, she was reluctant to tell her three teenage children, who had been uprooted from Iowa and had endured the sudden death of their father seven years earlier.
"It wasn’t right they should have to worry about me," she said recently. "It seemed unfair."
In order to keep her cancer a secret from them, she had all her medical mail sent to a friend’s house. She recuperated from a lumpectomy at that friend’s house, then commuted to Philadelphia for her radiation treatment — trips made solely for the sake of her privacy.
She told only a handful of people — a few friends, her sisters, her assistant coaches, and Athletic Director Bob Mulcahy. She did not tell her mother — "Why should she have to deal with this?" — or her players, who had enough on their plates to worry about. "I felt as long as my sisters could keep me strong, I wouldn’t burden them," she said.
She told her children about five years later, when she felt her illness was safely in the rear-view mirror, and her mother after it was mentioned in a church sermon on a day when CNN was there to film a profiler of her.
"She wasn’t angry, she was just sad," Stringer said of her mother’s reaction. "She said, ‘You must’ve been so alone. You must’ve been so afraid.’ And she cried."
In hindsight, she’d handle it the same way, she said, given her family’s circumstances at the time. Yet she’s also relieved that when a player comes to her in tears upon hearing news a family member has cancer, she can now use her own example by way of reassurance.
"Most people don’t keep it a secret — and I encourage them not to," said Jan Huston, director of the Connie Dwyer Breast Center at St. Michale’s Medical Center in Newark. Some opt not to tell a relative whose reaction might be unhelpful, and Huston doesn’t try to change their mind.
When it comes to children, however, she urges they be told, no matter what their age. Children often overhear discussions, then imagine the problem to be far worse than it is. At worst, they hear the news indirectly, from someone else.
"I say, ‘I think this is an opportunity to sit down as a family and say, ‘Mommy has a problem, and she’s going to get it fixed,’" she said. "By talking about this thing, you signal that we’re a family that can talk about anything."
She also has patients -- elderly widows, for the most part -- who don’t tell anyone simply because they’ve no one to tell. They don’t even have someone to give them a ride to appointments. She gives all her patients her home phone number, and says, "No one has ever abused it."
Another small group of breast cancer patients leaning towards privacy is men, said Diaz. Perhaps because their numbers are so small -- about 2,000 men a year are diagnosed -- they rarely attend support groups. "They don’t mention it," she said. "They just want to come in, get their treatment, and go out."
Even though breast cancer brings with it an extra incentive for privacy by virtue of the body part at issue, physician-author Barron Lerner called it "one of the first cancers to come out of the closet."
In the 1970s, feminists began challenging the necessity for the extensive surgery of a radical mastectomy, just as they questioned the medical establishment’s approach to pregnancy and childbirth. "That meant the whole topic had to go public," said Lerner, the author of "The Breast Cancer Wars."
By the ‘80s, it had become almost expected for famous women to reveal a breast cancer diagnosis. That openness in turn trickled down to regular patients, Lerner said.
The trends of the times can even control how patients refer to themselves, he noted. For example, a woman who calls herself a breast cancer "victim" these days will likely be urged to say "survivor" instead, he said. Even when actress Farrah Fawcett was clearly on her death bed, she was being called a survivor, he noted
Deciding on the degree of openness does offer women some control over at least one aspect of an illness that leaves them feeling out of control, he said.
And openness often brings rewards. Huston tells of one patient who didn’t tell very many people, yet soon found that someone had arranged for people to drop off casseroles, soup and flowers. Since she didn’t know how the food chain had evolved, she ended up writing a letter to the editor as a very public thank-you. "When people know, nice things happen," Huston said.
Still, the public approach isn’t for everyone. "If a given person wants to keep mum about it, they’re entitled to do so," said Lerner. Not every person has an obligation to be part of a movement."