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Changing the narrative: Leanne Pero on ensuring black people with cancer are seen and heard

Genesis Radio by Genesis Radio
12 November 2020
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Changing the narrative: Leanne Pero on ensuring black people with cancer are seen and heard
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BREAST CANCER Now has reported that almost 50 per cent of women still do not check their breasts on a regular basis. In addition and according to another study by Esteé Lauder Companies’ Breast Cancer Campaign, 44 per cent of Black women do not check their breasts every month.

Sadly, these results do not surprise me. We need to make talking about cancer, the signs and symptoms, more normal and raise more awareness in the Black community.

Black women are statistically more likely to face an advanced stage cancer diagnosis than their white counterparts and one of the reasons for these later diagnoses is the fact that there are so many myths and taboos surrounding cancer in our community. For example, people are told by friends and family that cancer is contagious and that it is the chemo that will kill you, not the cancer. We need to squash these myths and educate with the truth.

“The first time I went to my GP, I was told I was being paranoid because of what my mum had been through”

In October 2016, aged 30, I was diagnosed with Stage 3 Breast Cancer after finding a lump in my right breast. This was just six months after my mum was diagnosed with breast cancer for the second time. Whilst my mum’s history meant that I did regularly check my breasts, I still had to fight to be taken seriously. The first time I went to my GP, I was told I was being paranoid because of what my mum had been through. 

Diagnosis

My tenacity meant that I advocated for myself and pushed for further investigation. Still, in the days leading up to my diagnosis, I convinced myself it was nothing and so when I heard the words, “I am not going to beat around the bush, we’ve found cancer,” from the same consultant who had delivered that very news to my own mother earlier the same year, I went into a state of panic and anxiety. 

“I soon realised that the NHS lacked cancer support packages for Black cancer patients”

Within days, my treatment began and I underwent eight gruelling rounds of chemotherapy, after which scans could not find any cancer remaining. My mum’s history and a high chance of recurrence meant that my consultant recommended a bilateral mastectomy, after which I had reconstructive surgery. 

When people ask how I coped with a cancer diagnosis at such a young age, I have to be honest with them and say that I struggled. In my quest to find the right services to help me, I soon realised that the NHS lacked cancer support packages for Black patients. 

Another look showed me that the cancer stories of my community were being excluded from the UK’s mainstream media outlets, magazines and –perhaps more damagingly – from the reputable annual cancer campaigns by brands and charities failing miserably at diversifying their communications. I didn’t see myself anywhere which serves only to further fuel this false narrative that cancer is not a “black disease”. 

During my recovery, I began using my platform to raise awareness for cancer, detailing the challenges I faced as a woman of colour. In doing so, I interacted online with many women and men who, like me, were struggling with depression, trauma and isolation. Many were mis-diagnosed, not offered mental health support and generally left feeling excluded from communication with their consultants, which echoed the many other health inequalities in the Black community.

‘Not simply a race thing’

To be clear, this is not simply a “race thing”, it is about cultural differences. When people find common ground with others, they have far better outcomes because they feel more supported. That could be as simple as having a “buddy” system when going through treatment. Someone who you can message day or night and know that they understand what you are going through. The mental health recovery of patients dealing with the aftermath of their “all clear” is something which is hugely overlooked but so important. 

I felt so overwhelmed by how many stories echoed my own experience, that I decided to create a support group to provide vital support for Black cancer patients, survivors and thrivers. And so, Black Women Rising was born. From there I set up my own charity, The Leanne Pero Foundation, and then the UK’s first ever all Black female cancer scars exhibition ‘Black Women Rising – The Untold Cancer Stories’. This year we launched our podcast with the same name and in October we launched Black Women Rising The Magazine, and I could not feel prouder of everything we have achieved. 

Cancer robbed me of everything that society tells us makes us a woman. My hair, my boobs, my potential fertility. And none of it was a choice. It was taken from me. I felt like I was not going to have a future. My hope is that by raising awareness and collaborating with other charities, we can take steps towards changing the results of future surveys and these devastating statistics. Early diagnosis saves lives.



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