This World Cancer Day, we meet the remarkable Leanne Pero – a woman connecting and empowering BAME cancer patients, following a life-changing diagnosis of her own.
Today (4th February) marks World Cancer Day – a global awareness day encouraging the prevention, detection and treatment of cancer. And while we’ve come a long way in understanding and treating this disease that affects around 367,000 people in the UK each year, BAME women with cancer are continually underrepresented in the media, and undermined in their treatment.
According to a survey conducted by Black Women Rising – the brainchild of stage 3 cancer survivor and campaigner Leanne Pero – 96% of the 100 women of colour surveyed said they do not see themselves represented enough in the media talking about breast cancer. (The survey was conducted on 100 UK women who have had or currently have breast cancer.)
74% of those surveyed said they were not offered a softie, prosthetic breast or nipple to match their skin tone; while 81% said they struggled with their mental health after treatment. A staggering 46% were told by healthcare professionals in the first instance that they “don’t think it’s cancer”.
“This is the reason I started the work I do. When I was first diagnosed and all the way through my treatment, I did not see myself represented in the minimal literature I was given in the hospital, on major charity campaigns or in mainstream media,” says Pero of the survey’s results. “I will continue to work hard to strive to change this. We have already made an impact but we need to continue this one step at at time.”
Pero launched Black Women Rising after her own life-changing diagnosis at the age of 30. Now 33, she’s here to share her story about the movement that’s transforming her life and helping so many more women besides.
Fobbed off as paranoid
‘Black Women Rising was founded because of what happened to me four years ago. I was just 30 years old and I was diagnosed with Stage 3 breast cancer. My diagnosis came just six months after my mum was diagnosed with breast cancer for the second time. My mum’s history meant that, unlike many of my peers, I was aware of the signs and symptoms of breast cancer. I checked my breasts regularly.
Despite this, it still took longer than it should have to be taken seriously by medical professionals. My concerns were fobbed off as “paranoia” due to my mum’s experience. If I had not been tenacious and fought to be taken seriously, I could be yet another “case” added to the heartbreaking stats. Surviving cancer, it feels like both my mum and I are among the lucky ones in our community. But should surviving cancer simply be a case of luck?
Hearing the words “we’ve found cancer” from the same consultant who treated my mum put me into a state of shock. My life changed forever. Within days my treatment began. Eight rounds of gruelling chemotherapy followed by a double mastectomy and immediate reconstruction. None of that felt “lucky”.
It is a devastating fact that positive outcomes for Black cancer patients are far lower than those from a white background. But why is this? Unhelpful myths and taboos, in many Black households even saying the word “cancer” is frowned upon. Refusal of treatment, because “it is the chemo that will kill you, not the cancer”.
The stark statistics
Not understanding signs and symptoms – stigma and shame stops people from the Black community discussing their cancer. A recent study by Esteé Lauder Companies’ Breast Cancer Campaign found that 44% of Black women do not check their breasts every month. Would this statistic by higher if talking about cancer became the norm?
Poor understanding of the needs of Black communities by health care professionals. By having a blanket approach to diagnosis, treatment and side effects they are failing us. Low visibility in leading cancer charity campaigns and literature.
The statistics are stark. According to a Public Health England’s report (2016), Black African and Black Caribbean adults are twice as likely to be diagnosed with late stage breast cancer compared to their white counterparts.
In addition, a report by the Race Equality Foundation in 2018 found the incidence of cancer in the Black community is rising. However, being able to understand all of this is hindered by a lack of data. How can we make the necessary changes if we do not have a clear picture of what we are fighting?
Exposing the inclusivity gap
During my diagnosis and subsequent treatment, I began to see the gaps in support services for Black cancer patients. The lack of inclusivity meant that the majority of mainstream support could not offer me what I needed. There was no adequate advice for hair care during treatment, no wigs or prosthetics tailored for women of colour, and vitally the mental health support offered was tailored to middle-aged white women.
I was not alone. I began to blog about my experiences. It was an outlet for my thoughts. In doing this I met many other Black women who were not just feeling left out of vital cancer support services but also experiencing isolation from family and friends, and suffering in silence.
I could not sit back and watch, so I set up the Black Women Rising support groups to provide help to Black cancer patients, survivors and thrivers. From there I set up my own charity, The Leanne Pero Foundation. I created the UK’s first-ever all Black female cancer scars exhibition ‘Black Women Rising: The Untold Cancer Stories’, and subsequently a podcast series of the same name and most recently a magazine.
Black Women Rising
In October 2020, Black Women Rising: The Magazine was launched, serving as an opportunity to empower women of colour as they navigate their cancer journeys. It is the first magazine of its kind with over 170 pages of articles, advice, vital information and support.
Imagine going from feeling like you are not “seen” in mainstream media to turning page after page of a glossy magazine seeing “yourself” looking back at you? This was our motivation and I am so proud of everything we have achieved so far.
Medical services, cancer support charities and research organisations need participation from, and collaboration with the Black cancer community to shape inclusive services. We are ready to speak and they are listening.
We need to get more people from the Black community talking about cancer, looking out for symptoms and checking themselves, and seeking medical advice at the earliest opportunity in order to give ourselves the best chance to fight this deadly disease. Early diagnosis saves lives.’
* Head to: blackwomenrisinguk.org to find out more about the movement and its founder Leanne Pero