‘Cancer comes with a lot of blame and shame’

Leanne Pero was diagnosed with breast cancer in her 30s. She discusses why black women need their own spaces to talk about cancer

What people don’t tell you about breast cancer: in honour of Breast Cancer Awareness Month, we will be talking to people who have been affected by the disease – from a survivor to a widower to a fundraiser. Meet the second in our series, Leanne Pero, 39, who as diagnosed with breast cancer aged 31 and went on to found the Black Woman Rising support group. She’s an ambassador for the Estée Lauder Companies Breast Cancer Campaign.
The first time I discovered the lump I was in Barbados but I’d always had lumpy breasts so I wasn’t concerned. I was so exhausted although I didn’t realise why – I thought maybe it was because my mum had recently had her second breast cancer diagnosis and I had been going to hospital with her. When I came back I went on a detox and managed to get myself a little bit well. But the lump was getting bigger. I went to my family doctor, who said “don’t worry, you’re far too young”. This was in May.
In August I was away in Ibiza and I was in the shower, I realised the lump had got even bigger. I had a massage when I got back and the masseuse asked: “What’s that?” If it wasn’t for that woman, God only knows, because the next day she called me and she said: “Look, you better go to the doctor today”.
I called and was given a same day appointment where I was seen by a female doctor who felt it and said “I’m fast tracking you”. At the hospital one week later, they did an ultrasound, a mammogram and then a biopsy. And by that time, the whole mood had changed. I was hysterical because I knew what was going on from having gone with my mum when she was diagnosed. I went into the waiting room and a woman handed me a leaflet. It said: “You have just been diagnosed with cancer.” I asked: “So it is cancer?” She had assumed from my reaction that I had already been diagnosed, but then told me to wait for a letter.
I had to get through my 31st birthday celebrations and then a couple of weeks later I was officially diagnosed. I was told I was going to have to take possibly a year off work, have six months of chemo and that they would have to take the whole breast off.
I went into a deep depression after that. I couldn’t eat. They said I was too unwell for egg preservation. I was riddled with anxiety and wasn’t coping well. 
I handed over my dance company, The Movement Factory, to two of my assistants and went through my whole treatment with hardly anybody knowing. That’s just the way I wanted to deal with it. I’m just a private person.
It turned out the chemo ward was the best place in the whole hospital, filled with such great people. I saw other young girls like me – young black girls – and I started to going up to them and talking to them. I remember meeting one girl who said no one in her family knew.
I think that’s because cancer comes with a lot of blame and shame. For example, when people send juice recipes and say “Go vegan and do this diet and take this tea”, it feels like they are saying you are to blame.
And then you’ve got the shame of the physical side of things. You wonder, am I going to end up with one breast? There were times I would question whether I would ever meet somebody because I was single and I hadn’t had children. I ended up having a double mastectomy because the risk of recurrence was considered to be so high as my mum having had breast cancer twice that they wanted to give me the option. I am really pleased I did it, and I’m happy with the result of the reconstruction. But there’s a lot of things that make you sort of feel that you’re not a woman or even human.
I tried the support group and they were lovely but they were much older than me. I was the only woman of colour and I needed to connect with people my age. I talked to other women like me who I saw having a coffee on their own and said: “Look, we might need a space for ourselves, because our issues are completely different.”
There’s a lot of cultural belief systems within the black and brown community: “Don’t take chemo, it’s not for black people”, “black people don’t get cancer”, “cancer is a curse”, “God will cure your cancer”, “you will never be married”. Some people are told they cannot go to family events because the cancer’s catching. There was also the issue of fighting for prosthetics of the right colour, wigs that match our hair type – we’ve come a long way with that, because some hospital trusts now have wig grants which is great.
We also know that black women are twice as likely to die from breast cancer than our white counterparts. We know that black women are usually diagnosed in the later stage cancers and are more likely to be diagnosed with the more aggressive subtype: triple negative breast cancer.
I was viciously trolled with racist messages every time I went on television, questioning why black women needed their own space to talk about cancer. Now the charity is five years old and I think there’s more understanding. In the black community, statistics are bad so this is why we’re there. 
When someone is told that they’re in remission or they’re all clear, that does not mean it’s the end of the journey. That journey back to yourself again, or any new normal, takes years. But I would not take my cancer diagnosis back. It almost gave me a rebirth, to really put myself first, to find joy.
As told to Miranda McMinn
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