Researchers are investigating the experiences of black African and Caribbean women taking hormone therapy and the challenges that come with taking the medication, thanks to funding from Breast Cancer Now.
Researchers are investigating the experiences of black African and Caribbean women taking hormone therapy and the challenges that come with taking the medication, thanks to funding from Breast Cancer Now.
Black African and Caribbean women are less likely to get breast cancer than white women but have poorer survival outcomes*.
They are also more likely to be diagnosed with advanced breast cancers and breast cancers that are more difficult to treat, like triple negative breast cancer**.
Previous research suggests that some black African and Caribbean 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 oestrogen receptor positive (ER-positive) breast cancer coming back and becoming incurable, but it comes with challenging side effects.
The research and support charity has awarded £149,964 to Dr Lyndsay Hughes at King’s College London, to understand the barriers and challenges that may be contributing to why black African and Caribbean women find it harder taking long-term treatments.
Researchers will also explore whether this could be a reason why black African and Caribbean women are more likely to die from breast cancer.
Dr Hughes and her team will aim to identify patterns of how and when black African and Caribbean women take their medication and whether weekends, holidays, or other barriers disrupt their schedule.
During the four-year project, they will also investigate how different cultural backgrounds influence the expectations and perceptions of hormone therapy.
Drawing on the results of the study, the researchers will produce educational materials for healthcare professionals, patients and support groups, so they can tailor their support to be more appropriate and helpful for black African and Caribbean women.
Dr Lyndsay Hughes, King’s College London said: “By focusing specifically on the experiences of black African and Caribbean women, we want to shed light on an often-overlooked group in breast cancer, so we can build knowledge and skills to better support their individual needs. That includes developing educational materials for healthcare professionals and support groups.”
Dr Simon Vincent, Breast Cancer Now’s director of research, support and influencing said: “It’s so important that we understand what factors can lead to black African and Caribbean women not taking hormone therapy, as this is ultimately impacting their chance of survival. Breast Cancer Now is delighted to be funding this research as its findings will help the healthcare system, and organisations such as Breast Cancer Now, shape support to encourage black African and Caribbean women to continue taking these medications when this is in their best interests.”
Lisa Okonji, 40, from Essex, was diagnosed with stage 2 breast cancer in December 2020, after finding a lump in her right breast. She had chemotherapy for 5 months followed by a mastectomy with reconstruction, radiotherapy, and hormone therapy.
Discussing the impact of hormone therapy on her quality of life, Lisa, who is married with three children, says: "I was willing to do anything to survive, but it is not an easy treatment. The medication can bring on early menopause, cause hot flushes, fatigue, bone pains, headaches - the list goes on, but ultimately if it stops the cancer coming back, taking the medication is a no-brainer."
However, a lot of women from black African and Caribbean backgrounds don't take hormone therapy, and Lisa thinks this could be because of their spirituality.
"Many of us are very spiritual and some people believe that once the cancer has been cured, you can rely on prayer and trust in God to stop it coming back. People have told me that I don't need preventative treatment, I just need to pray, and I've thought that way myself sometimes, especially when the side effects get bad, but my husband and my family have always encouraged me to keep taking the medicine."
Lisa also explained that it can be difficult to remember to take the medication every day, when a lot of women are working several jobs as well as looking after children and family members. "I take it every morning as soon as I open my eyes. I have a job, small children, and a busy lifestyle. It's easy to forget completely or take it inconsistently," she says.
To encourage more women to adhere to hormone therapy, Lisa thinks there needs to be more tailored support available from people of similar backgrounds and religions, who can talk, as peers, to patients about the importance of taking these medications, crucially within in the context of understanding their spiritual beliefs.
Lisa says: "Women need to hear from people with similar cultures and beliefs that yes, you will always have your faith and trust in God, but you can also do something else and take this medication to stop the cancer coming back. It is a blessing to have these treatments available to us."
To find out more about how breast cancer affects different ethnic communities and for further resources, please visit the Breast Cancer Now breast cancer in ethnic communities page: Breast cancer in ethnic communities | Breast Cancer Now
Breast Cancer Now is here for anyone affected by breast cancer, providing support for today and hope for the future. Find out more at breastcancernow.org
ENDS
*6604852.pdf (nature.com) Jack et al, 2009
** Bowen, R. L., Duffy, S. W., Ryan, et al (2008). Early onset of breast cancer in a group of British black women. British journal of cancer, 98(2), 277–281.