At New York Fashion Week, patients with metastatic breast cancer walk on the podium: shots

A cold and bright Sunday afternoon during New York Fashion Week, nearly six hundred people gathered in an old building on the Lower East Side of Manhattan for an unusual lingerie show.

The audience screamed with exuberance when the first model entered the track. Jaleh Panahi of Kingston, NY, is a 73-year-old doctor, mother and grandmother with metastatic breast cancer for eight years. Dressed in a black scarf, with dangling earrings and a casual dress from the shoulders to the toe, she dragged herself gracefully, smiling and swiveling with her cane for "I". "Every Woman" from Whitney Houston.

Panahi was one of only two dozen models present in metastatic – or stage 4 – breast cancer that had spread to other parts of the body. They walked to express their feelings – courage, want to live, even anger – to live with this disease.

"On this show, we told the world that we had lost our breasts but not our femininity," said Panahi at the party.

This was the third #Cancerland annual fashion show organized by METAvivor, a non-profit organization that supports metastatic breast cancer research and awareness, in collaboration with lingerie company AnaOno. The goal: to raise funds for research to improve the treatment of metastatic disease, while changing the perception of the disease by the public.

"It's about making people understand what is metastatic breast cancer and being aware that men and women are dying from this disease," said Beth Fairchild, Greensboro resident, 39-year-old tattoo artist and president of METAvivor.

Advanced breast cancer kills more than 41,000 Americans each year, mostly women. New drugs prolong the lives of a few, but not enough; In 2015, the median survival rate after stage 4 breast cancer was less than three years.

At the show, these patients chose to exhibit – their lives, their bodies and their scars – defying the old expectations of silence. #Cancerland models do not fear cameras. They choose to make their disease visible.

On the runway, some models wore gray wigs with teal blue, green and pink stripes on the METAvivor theme. Some only wore body paint, underwear and boots. Several carried signs: "I live with MBC", "Save me" and "My body". One of them was wearing a belt: "We will not bury our heads in the sand and not die." Words scrawled in black on women's skin said: "FIERCE", "MOTHER", "METASTATIC".

The program took place inside the Angel Orensanz center. Spots of colored light flowed through the stained glass, illuminating the dark space like a kaleidoscope, while the models were walking around, sashayed and strutting under the nave.

Some mastectomy scars and other injuries revealed. One was holding flowers between his teeth; another carried a big crown. Maggie Kudirka, a slender dancer in her twenties, moved In tip to Rihanna's "S & M". Several stopped and lifted both arms, in V or muscle U, signaling strength.

The show was launched by Champagne Joy, a woman who died of metastatic breast cancer at the age of 49 in 2017. She was a New Yorker who had always dreamed of participating in a fashion show. weekend. She founded the #Cancerland Association and, in February 2017, she organized the first show. For the participants who knew the champagne, it was an opportunity to celebrate her life and her spirit.

The event reflects a growing wave of awareness of metastatic breast cancer. Advocates of these patients point out that their concerns are often overlooked by the overall priority given to survival after early-stage breast cancer. In recent years, several non-profit organizations focused on the needs of metastatic patients have formed, including METAvivor.

Patients with metastatic breast cancer have begun to gain visibility and new treatment options.

Several pharmaceutical companies have supported this year's program: Immunomedics, Allergan, Eisai and Pfizer. Fairchild estimated that ticket sales and donations to support the event would bring in about $ 100,000. for METAvivor. "All of this will go to research," says Fairchild.

METAvivor seeks to alter the course of metastatic disease from terminal illness to chronic disease. With the support of the industry, the organization now has an annual budget of $ 2 million and distributes more than 40 research grants. He organizes advocacy activities, lobby days in Washington DC and fundraisers.

The models wore AnaOno lingerie, a company led by Dana Donofree, a designer who herself was diagnosed with breast cancer at the age of 27. With items like front closure bras, the line offers clothing designed for comfort after reconstructive surgery and mastectomy, as well as for other ailments.

"Fashion is about beauty, awareness and style, it also gives us a platform to talk about our disease," Donofree said. "When we did our first exhibition in 2017, the world did not know what breast cancer looked like."

For Fairchild, walking on the trail "really gives you the feeling of being supported by your community and reinforces your self-confidence".

"It takes a lot of courage for a healthy person to do what we've all done, not to mention a patient with cancer-covered scars, or bald, or both," she says.

An enthusiastic audience helped. Spectators included friends and family of models, plastic surgeons, pharmaceutical executives and breast cancer advocates. Dr. Judith Salerno, President of the New York Academy of Medicine, was at the forefront. The program "embodies the courage and power of women and men who will not be defined or diminished by their cancer," she says. "This event moved me in an unexpected way."

Linda Tantawi, CEO of Susan G. Komen Greater New York, was also present and wrote in an email that the show "reflects the acceptance and compassion for all of the [metastatic breast cancer] patient experiences. "

A patient model, Terlisa Sheppard, has had metastatic breast cancer for 17 years. Now 51, she flew from her home in Florida to New York to participate in the fashion show; several members of his family came to encourage him. "I love it," she said in Saturday's match. "I'm a little nervous," she admitted.

Sheppard measured his condition, with metastases to the bones, lungs, liver, spine, abdomen and brain. "Where else can he go?" she says.

"I went through all that, and I had a hip replacement, a blood clot in my lungs, hospitalized for pneumonia," she said. "One thing after the other, and here I am, walking in New York Fashion Week, how dare I?" She smiles.

Another participant, Dikla Benzeevi from Los Angeles, lost her mother to metastatic breast cancer in 1984. "At the time, cancer was not a word or a situation that was publicly discussed, he was kept in the family, "she says. "We just kept it for ourselves."

Reflecting on her mother's experience 35 years ago, Benzeevi said: "She would be very excited about this show! She would also be very happy that it was no longer a secret."

Dr. Elaine Schattner is a journalist, patient advocate and doctor, residing in New York. She is writing a book on public attitudes to cancer.

Photograph unless otherwise specified by NPR Meredith Rizzo.

Edited by Carmel Wroth of NPR. Design and development by Alyson Hurt of NPR.