Health: Breast cancer survivors bare it all

For women facing breast cancer, there is nothing like talking with those who have walked the path before them.

On Wednesday, that sharing will be taken to a new level. After medical experts speak at a Toronto symposium marking Breast Reconstruction Awareness (BRA) Day, in a room off to the side, Willow’s Show and Tell Lounge will offer something unique.

Under soft lighting and clustered around coffee tables, about 20 women will unzip their tops and bare the results of mastectomies and breast-reconstruction surgery to those considering the procedure. They will show their incisions, talk about how their new breasts feel, and share their emotional journeys through the surgical ward.

Informal show and tells frequently happen in bathrooms at breast cancer events, says Natalie Witkin, who works with the non-profit network Willow Breast Cancer Support Canada and came up with the idea.

“We’re just giving it a safe, comfortable place to happen. It’s about the showing, but it’s also about the talking with other women about what it is really like.”

Witkin, a breast cancer survivor who had a mastectomy and reconstruction, will be among the volunteers in the lounge, which launched quietly at the first BRA Day a year ago and was so popular there were lineups out the door. This year, the conference moved to a bigger space, theToronto Reference Library .

If it’s anything like last year, the lounge will be bursting with laughter, excitement — and tears. It’s a women-only, no-physicians-allowed venue, where visitors ask their most personal questions. They get to see, touch and feel what reconstruction is all about.

“It’s so very emotional,” says Ruth Janzen, a Kingsville artist who will make the four-hour drive to Toronto for her second year, to give women a perspective she says no doctor or photograph can.

Janzen, 55, wishes there had been such an event when she had a mastectomy four years ago. At the time, she was not given any information about reconstruction.

Two years later, she walked into the office of Toronto plastic and reconstruction surgeon Dr. Mitchell Brown of Women’s College Hospital. He performed a prophylactic mastectomy to remove her second breast, and began simultaneous reconstruction, using a tissue expander to stretch the skin and tissue and make room for permanent implants.

It “gave me my freedom back,” and restored her confidence, says Janzen, who found a prosthesis cumbersome.

“I went two years without reconstruction. That’s why I feel so passionately that women undergoing treatment for breast cancer should be well-informed about their options.”

Her surgeon agrees. That’s what prompted him to organize the first BRA Day last year-end, which sparked events across Canada and in 25 countries.

Many women come to him years after their mastectomies, after finally hearing about reconstruction.

With the advances in surgical techniques and microsurgery, there’s no excuse for “the tremendous lack of awareness and lack of access (to surgery) in many communities,” he says, though he stresses that it’s not everyone’s choice and not all women are candidates.

But only about 12 per cent of Canadian women who’ve had mastectomies have reconstruction, a number that’s “startlingly low,” he says, especially since costs are covered.

Avery Swartz, 32, describes it as a silver lining. The Toronto web designer and mother, who has a gene mutation that puts her at high risk of breast cancer, had a preventative mastectomy and reconstruction surgery three years ago. She is thrilled with the results.

The lounge offers women a place where “no subject is taboo,” she says. Questions touch on everything from post-op pain to sexuality and what it’s like not being able to breastfeed.

“It’s all the things a woman wants to ask other women and doesn’t ask her doctor.”