Breast Cancer Now-funded research aims to improve quality of care for black women with breast cancer

Researchers are investigating how to improve the quality of care for black women with breast cancer and reduce health inequalities, thanks to funding from Breast Cancer Now.

The research and support charity has awarded £129,795, to Professor Robert Horne and Dr Zoe Moon at University College London, to understand the challenges faced by black women during treatment and care, particularly their experience of hormone therapy.

Black women are less likely to get breast cancer than white women. But if they do, they are more likely to be diagnosed with advanced breast cancers and breast cancers that are more difficult to treat, like triple negative breast cancer. They can also be less likely to survive the disease than white women, even if they are diagnosed early.

Previous research also suggests that some black women may be less likely to continue taking vital treatments such as hormone therapy, which is usually prescribed for between five to 10 years. This type of therapy reduces the chances of estrogen receptor positive (ER-positive) breast cancer coming back and becoming incurable. But it comes with challenging side effects.

Overall, some black women have reported being less satisfied with the care they received compared to white women. Researchers believe satisfaction levels can impact how successful treatment is. Professor Horne and his team want to explore this further and find out what else may be contributing to health inequalities.

To understand the barriers and challenges that may be contributing to poorer survival rates and low adherence to treatments among some black women, the researchers will carry out interviews with around 30 black women about their breast cancer care and their experience of hormone therapy.

They will then ask 150 white women and 150 black women to complete a survey asking questions about their experiences and beliefs about hormone therapy, and their feelings about the care they’ve received.

We want to make sure that all women receive the best possible care and treatment, no matter what their ethnicity is. The first step to reducing inequalities, is understanding why they happen. We need to step into patients’ shoes and gain a deep understanding of their perspectives of the treatment and care they receive. From here we can work to improve the healthcare system to better support them.”

Robert Horne, Professor, University College London

Dr Simon Vincent, Breast Cancer Now’s director of research, support and influencing said: “Breast Cancer Now is delighted to fund this research that could help improve the quality of care for black women with breast cancer. We know that people from ethnically diverse backgrounds experience differences in care and treatment compared to white women, and that they may be less likely to survive the disease.

“We’re committed to tackling these inequalities by raising awareness of breast cancer within ethnic communities and through funding research projects to find better ways to support them. We hope this research will help us ensure that everyone receives the best care and treatment, regardless of their ethnicity.”

Lorraine Marke, 60, from London, was diagnosed with HER2-positive, ER-positive breast cancer in April 2010. She will be advising on the study and believes that the ‘one size fits all’ approach to care does not always meet the needs of all women, particularly those from black African and black Caribbean communities. She also believes that more support is needed, especially for women taking hormone therapy.

After completing her treatment, Lorraine was prescribed tamoxifen and then letrozole hormone therapy to reduce the chances of the cancer coming back.

Lorraine said: “There were times when I struggled to get down the stairs, but I persisted and found different brands of the drugs that agreed with me more. Some women struggle so much when they start on drugs like tamoxifen and understandably don’t reach the point where the impact of the side effects lessen and become much more bearable.

“They may also find that staying on medication after completing their treatment serves as a constant reminder of their breast cancer and many just want to move on and forget about it.

“Some women experiencing bad side effects are advised to stop taking the drug or decide to stop without talking to a doctor, but there needs to be more support and alternatives offered. I’m excited about this new research and hopeful that it will increase awareness and promote inclusive support for black women taking these medications.”

Lorraine is also passionate about raising awareness of the importance of early detection. For Ethnic Minorities Cancer Awareness Month in July, she’s taking part in a series of Breast Cancer Now films to highlight the importance of breast screening. Lorraine shares her lived experience and discusses the common misunderstandings in her community about breast cancer.

Breast Cancer Now is here for anyone affected by breast cancer, providing support for today and hope for the future.