For black women living with breast cancer, it can be especially difficult to talk about what they’re going through – for various reasons.
A study by Cancer Research UK and NHS Digital published earlier this year in BMJ Open found black women were more likely than white women to be diagnosed with late-stage cancer, when the disease is generally harder to treat – with lack of awareness, delays in seeking help and barriers to accessing diagnostic tests all cited as contributing factors. Stigma and myths around cancer in the black community can also play a part.
“Speaking freely isn’t something that black women do naturally,” says Jacqueline Bassaragh, 56, who joined The Black Women Rising cancer support project in 2018, after struggling with the aftermath of her own breast cancer diagnosis at 51. The groups gave her a much needed safe space to open up.
“If I felt angry, sad, even joyous and really happy, I could share every emotion I was going through without judgement,” Bassaragh adds of the flagship programme of The Leanne Pero Foundation, a registered UK charity which supports people of colour affected by cancer.
Bassaragh says she initially “shut down” emotionally after receiving her diagnosis. She experienced a post-menopausal bleed, after not having had a period for years, and two days later her left breast started leaking and became very hard, hot to touch and painful. When it had calmed down, she felt a lump and booked an appointment with her GP, who referred her to the local hospital.
“The consultant shared that I had breast cancer in such a crude way. I asked if my son could join me — he was in the waiting room — and he repeated himself in the exact fast and crude way again,” Bassaragh recalls.
“I was feeling angry inside, but when I looked over at my son and could see his eyes watering up, in that instance — as we do as black women — I just shut down my emotions and asked what we needed to do next. I hadn’t actually cried about it until April this year.”
Rhakima Khan recalls how her first reaction when told she had hormonal-based breast cancer on Valentine’s Day, 2022, was laughter.
“It’s a coping mechanism I’ve had since I was a child,” says Khan, 36. “The nurse was so taken aback, as she was expecting me to break down. At that moment, I accepted the news and just wanted to know what we were going to do next.
“But when I walked out of that consultant room and went to the toilet, I cried. Not because I was sad, angry or frustrated. I cried because they diagnose you with breast cancer and then immediately flood you with information. That can be very overwhelming.“
Khan had discovered a lump near her sternum whilst having a shower after working a late shift as a theatre practitioner at Bristol Children’s Hospital. “I went across my chest with my sponge and thought, that wasn’t there before. I had checked my breasts the previous month but hadn’t checked them yet that month, so I lifted my hands and began,” she says. “I found a decent-sized lump that wasn’t very visible but hard and rigid. It just didn’t sit right with me.”
She remembers being determined to stay alive for her son, who was nine, and daughter, who was two. “If it meant I’m going to lose two breasts — though the NHS would only allow me to have a single mastectomy because I didn’t have an aggressive form of cancer — so be it. My breasts don’t make me a woman, they were there to feed my children. It’s society that has sexualised them,” Khan says.
She also took up blogging, documenting her journey to encourage other black women to regularly check their breasts .
This is how Khan got involved in the new Primark and Breast Cancer Now campaign in celebration of Breast Cancer Awareness Month; the retailer will be donating £300,000 to the charity for support and research.
Toye Sofidiya, 33, was first diagnosed and treated in 2016. The cancer returned in 2020 just before the first lockdown, and she eventually had a mastectomy in September that year.
“I haven’t come to terms with it,” says Sofidiya. “It’s been three years since my body has gone through a major change – it’s not something you ever get used to. Going on holidays, gaining weight, having to always wear a bra, having to look extra hard for outfits that I would be comfortable and still stylish in.
“I sometimes even forget to wear my prosthetic boob, which I can only wear with mastectomy or post-op surgery bras. I don’t mind wearing a lot of T-shirts, tank tops and bandeaus, but I’m really limited as a young woman. I’m worrying about things my friends don’t have to consider.
“It’s important to know your body,” she adds. “I knew my body, and as soon as something seemed out of place for me, I knew I had to get checked, because I have a history of cancer in my family. I just didn’t think I would get it.”
Neither did Deandra Paul, 29, who found a “tiny lump” on her left breast, two days after finding out she was pregnant with her second child, after being prompted by an Instagram post to do a self-examination.
Paul had only recently stopped breastfeeding her baby daughter – but wanted to be sure so she booked a GP appointment, only to be told there probably wasn’t anything to worry about.
“I wasn’t happy and wanted to get checked out properly,” Paul recalls. “So the GP made a referral to [the hospital] where I had a physical examination. They told me the same thing and said it was probably just [benign]. But due to their policy, they still had to do a biopsy and two weeks later on June 27, 2022, they told me I had breast cancer.
“I remember having an out-of-body experience, where I could see and hear myself shrieking like a hyena. My husband, who was with me at the appointment, was just quiet. I was so alarmed because I have no history of breast cancer in my family. They never told me what to do, but said I could either keep or terminate the baby.
“Most people in the black community would assume you can’t do chemotherapy or a mastectomy whilst you’re pregnant, but you can. It’s what I decided to do after going into research mode, to see if anyone has ever done it before,” adds Paul. “I stumbled across the Cancer and Pregnancy Registry, run by an American lady who has been studying cancer and pregnant patients. None of the women looked like me, but thankfully, someone had a similar story to mine.”
After surgery to remove the lump and some chemotherapy, she decided to switch to London Bridge Hospital to receive private healthcare from HCA Healthcare UK, where she had more treatment and a skin-sparing mastectomy (with plans for an implant in the future).
“Invest in your health,” she Paul. “If you have had the experience of not being listened to, or fear that your health is dismissed by the system, then try and seek a second opinion. If you or your partner have private healthcare through work, use it. If you don’t, research your options for health insurance and really consider if there’s something else that you can give up in your monthly expenses to invest in your health. Health truly is wealth.”
