Founder of Black Women Rising
Founder of METUPUK
When it comes to breast cancer, not everyone has the same choices or access to care. We need to do more to support women of colour and those living with secondary breast cancer.
Women living with secondary disease (also known as metastatic or advanced cancer) and women of colour can often feel excluded from conversations around breast cancer. This is despite Black women being nearly twice as likely to be diagnosed with late-stage breast cancer and life expectancy being as low as a little over one year for women diagnosed with secondary disease (when cancer cells spread to other parts of the body). Approximately 28% of women diagnosed with secondary breast cancer will be alive five years after diagnosis.
Two women with first-hand experience who are working to change the conversation are Jo Taylor and Leanne Pero. “People think that secondary breast cancer is a chronic illness that you live with, like diabetes. They think there are lots of treatment options and clinical trials, but that’s not the case. The people affected by it are a hidden population,” explains Taylor, who lives with the disease and set up METUPUK, a patient advocacy group to champion issues relating to secondary breast cancer.
Feeling hidden is something that Pero, founder of Black Women Rising – a network for Black cancer patients and survivors – can relate to. Diagnosed with primary breast cancer at the age of 30, Pero received a hostile reception from many in her community. “I was told chemo doesn’t work for Black people and that it must be the white gene that caused me to get it,” she recalls.
During her treatment, Pero was astounded by the number of women who’d encountered similar rejection – something healthcare professionals seemed unaware of. “I overheard nurses describing one patient as ‘difficult’, but if they understood her struggles and how scared she was, they may have treated her differently,” she says.
Invisible barriers are everywhere. A survey from Black Women Rising found that 96% of respondents did not see women of colour in breast cancer-related media, and many women aren’t offered wigs that are appropriate for their ethnicity.
We don’t know how many people are even living with secondary breast cancer.
A lack of education in healthcare professionals and the wider public is feeding the problem. As Taylor points out, “We don’t know how many people are even living with secondary breast cancer. That data isn’t collected, even though it’s the biggest killer of women under 50.”
Progress is being made, however. Earlier this year NHS England announced the first ever national metastatic breast cancer audit, which will provide figures of how many people in England are living with secondary breast cancer. Taylor and charities including Breast Cancer Now were instrumental in securing the audit.
Both Pero and Taylor are using their negative experiences to drive change. Taylor is setting up a database so that women can easily access information on clinical trials in secondary breast cancer as well as an infographic highlighting red flag signs and symptoms, which is being signposted by NHS England.
Collaboration is key
Likewise, Pero is collaborating with major organisations and charities. “They have the infrastructure and the programmes; however, they can’t get people of colour to use them,” she says. “I have a community who trust me. If we can come together, we can create inclusive pathways.”
Next month, Black Women Rising is launching an awareness campaign involving UK-wide billboard advertising, events, and a photographic exhibition to highlight experiences of Black cancer survivors.
METUPUK will launch a campaign specific to metastatic breast cancer during Breast Cancer Awareness Month in October. A display featuring 31 individual female figures will reveal the bleak reality of living with secondary disease. It will travel around shopping centres UK-wide and feature online and via social media.
There is no sugar coating a disease that kills 31 women every day. But if we want to change that stat, we need to include everyone in the conversation.
This content has been initiated, funded and reviewed by Gilead Sciences Ltd.
Job code: UK-UNB-0920
Date of preparation: September 2021