Young breast cancer survivors bare scars for photo exhibit and documentary

At an age when most people are mapping out their long-term plans for career and family, Sylvia Soo faced uncertainty about just how many years would lie ahead.

While teaching overseas, the Edmonton resident was preparing for bed when she felt a prominent lump as her hand brushed along her left side.

At age 25, Soo was diagnosed with breast cancer. But ever the teacher, she sought to find an outlet to use her own experiences as a tool to engage and educate others.

She started a Facebook page for family and friends to keep track of her progress. But her image and story would soon reach an audience beyond cyberspace.

The Alberta native is among several young women living with the disease featured in The SCAR Project, or Surviving Cancer Absolute Reality.

The Pulitzer-nominated exhibition is shot by fashion photographer David Jay who captures raw, still portraits of survivors aged 18 to 35 exposing themselves – physically and emotionally – for the camera lens.

“I think my idea behind (taking part) was: `I’d just been diagnosed with breast cancer, I really don’t know how long I have, so why not do something that will kind of – not keep me there forever – but even when I’m gone, there’s a part of me that’s still left,”‘ said Soo, who underwent a mastectomy and chemotherapy.

The behind-the-scenes portraits were also captured in the documentary “Baring It All” screening at the upcoming Breast Fest in Toronto. An initiative of Rethink Breast Cancer, the event is billed as the world’s first film festival dedicated to breast cancer awareness and education.

Jay said the SCAR Project started inadvertently when his now former girlfriend’s twin sister, Paulina, was diagnosed with breast cancer at age 29.

Within two weeks of her diagnosis, she had a mastectomy and started chemotherapy. Jay had been shooting photos of Paulina since she was 17, and decided to capture an altogether different image of the young woman: topless, scars exposed.

It would be the first of nearly 100 such portraits by Jay, who recently wrapped a 10-day exhibit of The SCAR Project in New York. The photographer was able to recruit young women to participate through postings on online breast cancer forums.

“When I started it, I had no idea if a, anyone would want their picture taken, or b, if anyone would want to look at the pictures after their picture was taken,” Jay said in a phone interview from New York.

“I was very, very surprised when I just started getting, over the course of the past five years, just thousands of emails from women wanting to participate.”

Not surprisingly, Jay admits there were typically some feelings of shyness the first time the women took their shirts off for the camera.

“Many of them said I was the first man – aside from their doctor – that had seen their chests, breasts, or what was left of them,” Jay said. “Perhaps they were timid – but they were resolved.”

While the portraits focus squarely on the women, the film “Baring It All” widens the lens to illustrate the impact breast cancer has on families as well.

The heart-wrenching portraits include 26-year-old Vanessa, who learns of her diagnosis about six months after getting married, and 30-year-old Marcy, who discovered her lump while pregnant with her second child.

“Often it’s the partners and the caregivers that are the strong, silent ones,” said filmmaker Patricia Zagarella from New York. “It was a nice opportunity to give a voice to the guys and allow them to open up.”

“For a lot of them, it was the first time that they spoke about it, that they spoke about their feelings and the difficulty and the fear, how afraid they were that they were going to lose their wives and so forth.”

Zagarella said while the women being photographed may have been nervous or shy initially, there was an “immediate transformation” that took place before the camera.

“Baring themselves and knowing that the photographs are going to be out there, there was a sense of pride and a sense of strength that they took away from that,” she said.

“Most of them came because they wanted to be a part of the message and support that young women do get breast cancer. It was really a matter of reclaiming their femininity, their sexuality, having been robbed of such an important part of it.”

Now 28, Soo finished her treatment in September 2009, but continues to take tamoxifen.

She underwent breast and nipple reconstruction this year and continues to be an advocate in sharing her experiences. Soo said she is collaborating with Rethink Breast Cancer on a book that she describes as part memoir, part resource for young women going through breast cancer.

“I guess, in a way, (I’ve gained) an acceptance of the different stages of my life in terms of a new normal,” said Soo. “Being able to look at myself in the mirror and accept what I see at any given time – whether that be after my mastectomy, after my reconstruction – and just finding beauty in it.”

Breast Fest runs from Nov. 18 to 20 at the Royal Ontario Museum.