Page last updated February 2021

‘Cancer isn’t a Black person’s disease’: 100 Women of Colour speak out in new survey

Leanne Pero

Leanne Pero was 30 years old when she was diagnosed with stage 3 breast cancer in October 2016, just six months after her mother had been diagnosed with breast cancer for the second time. An active dance and fitness instructor, Leanne was in total shock that this was happening to her. She’d never seen or heard of anyone else who was Black like her, who was as young as her, and who was healthy like her, who had breast cancer.

“From the people within my community, it’s not a known thing that Black people have cancer,” she says. “When I got diagnosed, I noticed that I lost a lot of friends around me. People were not understanding why I got the disease or probably thinking there was something wrong with me — not in terms of the illness, but in terms of: ‘How come you got cancer?’”

Taboos and stigma surrounding cancer, including the narrative that cancer is a kind of punishment or curse, have been handed down through generations within Black and Asian communities, Leanne explains. It’s something that’s isolated many Women of Colour as they’ve gone through the already traumatic process of cancer diagnosis and treatment.

Just over half of those surveyed were told by others in their community that stress had caused their cancer, while just under half were told not to take chemotherapy because it would kill them

After reaching out to other Women of Colour, Leanne learned that her experiences were not unique. She heard stories of women being isolated by family members, being judged for their treatment choices, being told that their cancer was a curse for things they’d done, and more. This spurred her to start her charity, the Leanne Pero Foundation, and to collate the breast cancer experiences of 100 Women of Colour into a survey.

Just over half of those surveyed (56 people) were told by others in their community that stress had caused their cancer, while just under half (46 people) were told not to take chemotherapy because it would kill them. The majority of respondents agreed that these misperceptions were due to the lack of representation around the topic: all but four said that they do not see Women of Colour represented enough in the media talking about breast cancer.

This has a trickle-down effect on health outcomes: uptake of breast cancer screening is lower among Black African women in the UK, and researchers have noted that religion and culture influence Black patients’ health behaviour, causing delays in seeking help and affecting choice of treatment options.1 Other factors, such as having a previous negative experience, also affect likelihood of attending screening.2

However, responsibility for these care inequalities also lies with those who are delivering the care. Experiences of racism when seeking care have caused breast cancers to go undetected for longer, while screening guidelines are used that are not culturally sensitive or relevant.3

One woman who Leanne spoke with shared that she had gained weight due to chemotherapy, and was ridiculed for this by her consultant during an appointment to discuss an upcoming mastectomy operation. This put her off going forward with the operation

“There’s this complete lack of understanding and a lot of the time, people are not very friendly,” says Leanne. “A lot of the healthcare professionals have dealt with our women, and people from our community, with a lack of understanding of these cultural myths and taboos that they may be experiencing.”

On the NHS, cancer patients who meet certain criteria may receive free wigs when they start losing their hair due to treatment. Four in ten Women of Colour (41 respondents) were not offered a free wig and of those, over three quarters were told that this was because there was no suitable option for them. Of those who use a softie, which is a lightweight fabric breast shape to put inside a bra, prosthetic breast, or nipple, 74% were not offered one to match their skin tone.

One woman who Leanne spoke with shared that she had gained weight due to chemotherapy, and was ridiculed for this by her consultant during an appointment to discuss an upcoming mastectomy operation. This put her off going forward with the operation — after she’d spent a long time deciding that she wanted to do it, against her family’s wishes.

The survey results aim to raise awareness of Black and Women of Colour’s experiences and to promote healthy and inclusive discussion around breast cancer.

Leanne says: “This would look like families around the breakfast table, reminding their daughters: ‘Have we checked your breasts this week?’ It would be mum finding something and being able to talk to her husband, and her husband supporting her to go and get checked rather than this thing of, ‘Don’t worry, we’ll be okay’, or ‘Don’t worry, God will protect you’.”
 
 
For more information about breast cancer and breast cancer screening, visit:

 
 
Featured image is a photo of Leanne Pero. She is facing the camera and starting confidently into it, wearing large hoop earrings that have a map of Africa inside them. She is wearing a colourful African headscarf and appears to be nude from below the neck. She is featured in the photo from the shoulders up. Image courtesy of Leanne Pero

Page last updated February 2021

Leanne Pero was 30 years old when she was diagnosed with stage 3 breast cancer in October 2016, just six months after her mother had been diagnosed with breast cancer for the second time. An active dance and fitness instructor, Leanne was in total shock that this was happening to her. She’d never seen or heard of anyone else who was Black like her, who was as young as her, and who was healthy like her, who had breast cancer.

“From the people within my community, it’s not a known thing that Black people have cancer,” she says. “When I got diagnosed, I noticed that I lost a lot of friends around me. People were not understanding why I got the disease or probably thinking there was something wrong with me — not in terms of the illness, but in terms of: ‘How come you got cancer?’”

Taboos and stigma surrounding cancer, including the narrative that cancer is a kind of punishment or curse, have been handed down through generations within Black and Asian communities, Leanne explains. It’s something that’s isolated many Women of Colour as they’ve gone through the already traumatic process of cancer diagnosis and treatment.

Just over half of those surveyed were told by others in their community that stress had caused their cancer, while just under half were told not to take chemotherapy because it would kill them

After reaching out to other Women of Colour, Leanne learned that her experiences were not unique. She heard stories of women being isolated by family members, being judged for their treatment choices, being told that their cancer was a curse for things they’d done, and more. This spurred her to start her charity, the Leanne Pero Foundation, and to collate the breast cancer experiences of 100 Women of Colour into a survey.

Just over half of those surveyed (56 people) were told by others in their community that stress had caused their cancer, while just under half (46 people) were told not to take chemotherapy because it would kill them. The majority of respondents agreed that these misperceptions were due to the lack of representation around the topic: all but four said that they do not see Women of Colour represented enough in the media talking about breast cancer.

This has a trickle-down effect on health outcomes: uptake of breast cancer screening is lower among Black African women in the UK, and researchers have noted that religion and culture influence Black patients’ health behaviour, causing delays in seeking help and affecting choice of treatment options.1 Other factors, such as having a previous negative experience, also affect likelihood of attending screening.2

However, responsibility for these care inequalities also lies with those who are delivering the care. Experiences of racism when seeking care have caused breast cancers to go undetected for longer, while screening guidelines are used that are not culturally sensitive or relevant.3

One woman who Leanne spoke with shared that she had gained weight due to chemotherapy, and was ridiculed for this by her consultant during an appointment to discuss an upcoming mastectomy operation. This put her off going forward with the operation

“There’s this complete lack of understanding and a lot of the time, people are not very friendly,” says Leanne. “A lot of the healthcare professionals have dealt with our women, and people from our community, with a lack of understanding of these cultural myths and taboos that they may be experiencing.”

On the NHS, cancer patients who meet certain criteria may receive free wigs when they start losing their hair due to treatment. Four in ten Women of Colour (41 respondents) were not offered a free wig and of those, over three quarters were told that this was because there was no suitable option for them. Of those who use a softie, which is a lightweight fabric breast shape to put inside a bra, prosthetic breast, or nipple, 74% were not offered one to match their skin tone.

One woman who Leanne spoke with shared that she had gained weight due to chemotherapy, and was ridiculed for this by her consultant during an appointment to discuss an upcoming mastectomy operation. This put her off going forward with the operation — after she’d spent a long time deciding that she wanted to do it, against her family’s wishes.

The survey results aim to raise awareness of Black and Women of Colour’s experiences and to promote healthy and inclusive discussion around breast cancer.

Leanne says: “This would look like families around the breakfast table, reminding their daughters: ‘Have we checked your breasts this week?’ It would be mum finding something and being able to talk to her husband, and her husband supporting her to go and get checked rather than this thing of, ‘Don’t worry, we’ll be okay’, or ‘Don’t worry, God will protect you’.”
 
 
For more information about breast cancer and breast cancer screening, visit:

 
 
Featured image is a photo of Leanne Pero. She is facing the camera and starting confidently into it, wearing large hoop earrings that have a map of Africa inside them. She is wearing a colourful African headscarf and appears to be nude from below the neck. She is featured in the photo from the shoulders up. Image courtesy of Leanne Pero

Page last updated February 2021

Monica Karpinski

Founder & Editor, The Femedic

Monica is the Founder and Editor of The Femedic. Against a journalism background and after years of leading content marketing projects in the healthcare space, it became clear that health information out there for women simply wasn’t good enough. No-one had bothered to look deeper into the ways women were searching for information, or consider the depth of what they actually needed to know. Instead of waiting for the perfect publication to approach her, she created The Femedic.

Monica has been named one of The Drum’s 50 under 30 for influential women in digital 2018 and was shortlisted for Female Entrepreneur of the Year in the 2018 British Business awards. She speaks and writes widely on gender and health inequality.

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References

  1. Bamidele, O., et al., Exploring factors contributing to low uptake of the NHS breast cancer screening programme among Black African women in the UK, Diversity and Equality in Health Care, 2017, vol 14, no 4, pp 212-219
  2. Jack, R.H., et al., Breast cancer screening uptake among women from different ethnic groups in London: a population-based cohort study, BMJ Open, 2014, 4:e005586
  3. Bamidele, O., et al., Exploring factors contributing to low uptake of the NHS breast cancer screening programme among Black African women in the UK, Diversity and Equality in Health Care, 2017, vol 14, no 4, pp 212-219