Understanding Black women’s experiences of breast cancer

In 2006, aged 27 and breast feeding her second child, Hasna noticed a lump in her breast and went to her GP. The GP dismissed her concerns as being linked to breastfeeding. After six months of GP visits, she sought advice from an alternative medicine practitioner who advised her to go to hospital right away. Hasna was eventually diagnosed with triple negative breast cancer (TNBC), and it took a further 3 months before her treatment started.

During the delay in receiving her diagnosis, there was aggressive growth of the cancer, meaning the treatment regime was tougher than it would have been had she been diagnosed earlier. In 2017, Hasna’s cancer returned, and she was diagnosed with metastatic TNBC. She has since been enrolled on clinical trials at The Royal Marsden NHS Foundation Trust.

As part of her cancer care, Hasna has accessed breast prosthetic, wig and lymphoedema sleeve services, all of which did not reflect her needs as a Black, Rastafarian woman. She felt these services did not offer patient-centred care:

When Hasna lost her hair during cancer treatment, there were no suitable wig options available to match dreadlock or afro hair types. Instead, she was given the option of a long-haired ginger wig, which was not well-suited. Hasna ended up personally purchasing a high-quality, human hair wig, which made her feel like herself again.

At her breast prosthetic and bra fitting appointment, Hasna was not offered a suitable option to match her dark skin tone. She felt as if the hospital staff were pressuring her to take an option from their available range of light shades.

During her appointment for a lymphoedema sleeve, Hasna was offered the darkest skin tone in the available range, which would be better suited to a White woman. To treat her condition, she settled for this option. Hasna chose to wear a second sleeve on her other arm to make the mismatch less obvious, even though she only had lymphoedema in one arm. She reflected that there wasn’t even an acknowledgement that there was no option to match her skin tone.

Living with cancer for almost 20 years, Hasna has learned to advocate for herself.

Although she initially went to her NHS GP, she felt the appointment was rushed and her GP did not take her concerns seriously – dismissing her without an examination. Davina felt that if she had been examined, her cancer may have been spotted at this point as she had a noticeable lump in her armpit. Davina had recently been signed onto private healthcare; she arranged a separate private GP appointment, where she was prescribed precautionary antibiotics. The antibiotics didn’t help, and after finding an additional lump in her breast, she was referred for breast cancer screening where her diagnosis was confirmed.

As part of her treatment plan, Davina received chemotherapy, surgery, radiotherapy and oral chemotherapy through her private healthcare provider. She reflected that her care was not tailored to her, and did not address the experiences and concerns of Black women:

Davina was advised to monitor for symptoms of redness as a side effect of radiotherapy, with no recognition that redness wouldn’t show up on her Black skin. Davina was not advised what discolouration would look like on her skin tone and was left surprised when her skin turned much darker as a side effect. The changes to her skin following both chemotherapy and radiotherapy were unexpected, with her skin turning almost black on her palms and the area where she had received radiotherapy.

Clinicians typically use black tattooing to guide radiotherapy treatment. Davina had raised concerns to her doctors about how the tattoos would show up on her skin, but she was told there were no other options available to her. This left her feeling anxious about whether the treatment would work. At the appointment, her nurse remarked on her dark skin and suggested they use an alternative approach to tattooing – PointGuards – despite Davina being told before that tattooing was the only option. These mixed messages exacerbated feelings of unease throughout the treatment process. Davina felt that there was little recognition of Black skin, but nor was there recognition of the nuance around different skin tones within the Black ethnicity – with a need to ensure medical advice isn’t generalised but personalised for the patient at hand.

When Davina lost her hair, she was able to purchase wigs through her private medical insurance to the value of £400. The provider didn’t supply wigs that matched her natural hair-type, so Davina purchased a wig through a separate online retailer. After struggling to find a good quality option, Davina opted to wear headscarves. Reflecting on her experience, she noted the challenges of navigating this process without support from her provider. Davina wished she had the chance to attend a personalised wig fitting consultation to provide some support during such a difficult time.

Wigs are available through the NHS, but patients are typically charged unless they qualify for a free wig. Depending on the type of wig, these can range from £78.15 to £302.70.

In November 2020, Leeanne noticed a lump in her left breast and spoke to her GP, who referred her for further investigation. Her diagnosis was confirmed six weeks later, in December 2020.

As part of her care, Leeanne accessed services that provided wigs and lymphoedema sleeves. Leeanne felt that the information she received, and care offered through these services, did not reflect the needs of women of colour:

Leeanne decided to shave her head early in her cancer journey, after being told cold-capping was not effective for afro-style hair. She later found out that there were techniques she could have used, such as braiding, to increase the chances of keeping her hair. Leeanne felt having access to this information may have changed her decision.

At her wig appointment, Leeanne was asked about her hair pre-cancer and told there were no styles on offer to match. Instead, she was offered a short, brown bob with a Caucasian hair texture. Leeanne took the wig, but only wore it once, deciding she would rather wear nothing over a wig that didn’t feel like ‘her’. Although she credits the friendly assistant, Leeanne reflected that the appointment was rushed and overwhelming. She felt as though the assistant did not understand the importance of finding her a wig which was suited to her natural hair texture.

Following her treatment, Leeanne experienced lymphoedema that she still wears a sleeve to manage. Leeanne was offered a sleeve that did not match her skin tone and she felt the colour disparity drew attention to the fact she was wearing a sleeve. This led to questions about her cancer journey she didn’t always feel comfortable having. Through advocating for herself, Leeanne was offered access to custom made lymphoedema sleeves through her London-based hospital. We know that this access is not possible for all women across the country.

Reflecting on her experience, Leeanne emphasised the importance of ongoing dialogue with Black women to understand their support needs and create spaces that are welcoming and accessible to all.