Black women’s experiences with breast cancer will be put under the spotlight this month, in a play looking at six personal stories highlighting the racial health inequalities in diagnosis, representation and care.
Unseen Unheard: The Untold Breast Cancer Stories of Black Women in the UK is based on the experiences of five women who found support from the charity Black Women Rising, and the charity’s founder, Leanne Pero.
Pero founded the peer-to-peer support network for Black women with breast cancer in 2019 after she struggled to find people she could relate to after her diagnosis in 2016, at the age of 30.
“When I went to the support group attached to my hospital, it was a room full of white women and I was asked by the woman who was running the group, ‘What are you doing?’ Now, when I turned around and I said, ‘I’ve got cancer,’ she said, ‘I’m so sorry, but you look far too young to be here.’ And I was one of only two black women in a room of about 20 ladies,” Pero said.
The Race Equality Foundation found that Black patients report more negative experiences of cancer care than white patients and that healthcare providers have a poor understanding of the needs of Black and minority ethnic communities, particularly in cancer awareness.
Research from Cancer Research UK and NHS Digital also found that Black women from Caribbean, African and Asian backgrounds with breast or ovarian cancer were more likely to be diagnosed at a later stage than white British women, which is when treatment is less likely to be successful.
“There was a lot of feeling alone and feeling like the only one because there was no visibility, there was no one to turn to,” Pero said. “When I was getting into the swing of things and I was nearing the end of my treatment, I started to meet other Black women and … [there was] this feeling of belonging.
“I did realise that we needed our own space and I also realised that we needed a space for younger women.”
Eight women attended the first support group – “even that surprised me”, Pero said. Now, the charity supports more than 300 Black women with breast cancer across the UK.
The stories of the characters in the play were inspired by Toye Sofidiya, 33, Carmel De’Lisser, 52, Tilli Reid, Della Ogunleye and Sharon Marshall-Green, 51, and their experiences with cancer.
De’Lisser said she hoped the play would spark conversations about the inequalities Black women face during their cancer journeys. “I think the play does highlight things that we were going through, the disparities, the isolation and also the fact of feeling like you were misunderstood along the way,” she said.
“There were times, as in the play, where I was up against makeup not being available in a makeup class, the right colour prosthetic not being available and you feel like you don’t always want to speak up against those things … that’s when I found Black Women Rising.”
Black Women Rising’s 100 Women Survey found that 74% of those who use a softie (a fabric prosthesis often provided after a mastectomy), a prosthetic breast or nipple were not offered one to match their skin tone.
Four in 10 (41%) of those who lost their hair also reported that they were not offered a free wig and 78% of those reported that there was no suitable option for them. “I think that a lot of people don’t really understand some of the stuff [we] go through but when they see it in that context in the play, it will make it a bit clearer,” Reid said.
Its writer, Naomi Denny, said she sees it as an opportunity to “give a voice to people who historically have not been heard”.
She added: “I hope that this whole conversation does inspire people to question the things around them that they think are the norm.”
The play was co-directed by Simon Frederick and Suzann McLean, who echoed these thoughts. “I want this play to be a call to action. For people to feel like they need to think more and actively do more,” said McLean.
She added: “Change comes from hundreds of people doing something really small.”
Frederick said: “The piece is so layered because ostensibly the piece is about cancer, but really the piece is about Black women. The piece is about healing … It’s about trust. It’s about community. It’s about talking to each other.
“I think that display, even if there’s so many different levels to it, will appeal to so many different people.”
