A new study funded by Breast Cancer Now will explore how people with incurable secondary (or metastatic) breast cancer experience treatment side effects, and whether personalised drug doses could help improve their quality of life.
When breast cancer cells spread from the primary cancer in the breast to other parts of the body it is called secondary or metastatic breast cancer. Although treatable, it can’t be cured.
An estimated 61,000 people are living with secondary breast cancer in the UK*.
Treatments for the disease can cause a wide range of side effects that may significantly impact day-to-day life. Factors such as ethnicity, genetics, and other personal characteristics can influence how individuals experience treatment side-effects and benefit from cancer therapies. However, there is currently limited understanding of how these experiences differ, particularly among women from ethnically diverse backgrounds, as many were not included in the initial clinical trials for which these therapies have been licensed.
Breast Cancer Now has awarded £166,965 to Dr Olubukola Ayodele at University Hospitals of Leicester NHS Trust and University of Leicester to investigate how different groups of people, including those from ethnically diverse backgrounds, experience secondary breast cancer treatments. The researchers will also explore if adjusting drug doses could improve people’s quality of life.
Finding the right dose for each person can be complex, as individuals may respond differently to the same treatment. To better understand this, the research team will conduct a national survey of around 1,000 people living with secondary breast cancer. The survey will explore how people understand finding the most suitable dose for them, whether they have discussed it with their treatment team, and if they feel their treatment is tailored to their needs.
Participants will also be asked about any challenges they have faced during treatment, such as side effects or difficulty accessing care. The researchers will assess how these experiences may differ for people from ethnically diverse backgrounds.
The team will also hold focus groups to gain deeper insight into the perspectives of people living with secondary breast cancer. The findings will be used to develop recommendations for health professionals on how to better support personalised drug dosing and deliver more effective, patient-centred care.
The research will help find ways to make sure that treatments are as effective and gentle as possible for everyone.
Dr Olubukola Ayodele also hopes to build on this work in the future, including exploring clinicians’ perspectives to dose reduction.
Dr Olubukola Ayodele, from University Hospitals of Leicester NHS Trust, said:
“While advances in breast cancer treatment have improved survival rates, there are still significant differences in how people experience these treatments. This is especially true for women from different ethnic backgrounds, who may experience varying side effects and treatment outcomes because of the lack of diversity in clinical trials. Understanding these differences is crucial for ensuring all women receive the best care possible.”
Dr Simon Vincent, chief scientific officer at Breast Cancer Now, said:
“People living with secondary breast cancer deserve treatments that not only work but also allow them to live as fully as possible. By exploring the unique needs of people living with secondary breast cancer, the burden of treatment side effects and identifying opportunities to personalise drug doses, this research could improve the quality of life for patients by tailoring their treatment even more closely to what they need.”
Lydia Chatfield, 31, from the Midlands, was diagnosed with primary breast cancer in March 2023, aged 28. In December 2024, just two days after Christmas, she was told she had secondary breast cancer after a scan revealed tumours in her brain.
Throughout her treatment, Lydia has experienced severe side effects, including headaches, sickness and fatigue. As a mum to two children, aged 4 and 7, this has also had a significant impact on what she is able to do with them.
Lydia says: “I’m on a targeted therapy called Kadcyla, which causes nausea and exhaustion. I have to take anti-sickness tablets for three days, and the headaches last for around five days. I had an eight-week break over the summer because I couldn’t do anything with the children otherwise. My youngest has started school now so in the day I can rest. I’m fortunate that I’m able to be at home. The steroids I’m on also make you really irritable, hungry, and wide awake, but then the treatment makes you really tired.
“I don’t want to be knocked down every three weeks when I have treatment. Everyone experiences side effects differently, but you know your body better than anyone. It’s important to speak to your treatment team about the side effects you’re experiencing, because the same thing isn’t going to work for everyone. My side effects are better managed now as I’ve had the confidence to speak up and ask for help.”
Lydia has also undergone stereotactic radio surgery on her brain and will be having this again after two new tumours were found. Because of her brain treatment, she has been unable to drive since January and relies on family support to get to appointments and help with the children.
“Research like this is so important. If a dose could be reduced and still have the same positive effect, it might mean I don’t have to struggle or feel so sick, and that our routine wouldn’t have to be disrupted as much as it is when I have treatment. I often want to make plans, but I have to factor in how I’m going feel after treatment. Research like this could change that.”
Breast Cancer Now is the leading research and support charity here for anyone affected by breast cancer. Call their free, confidential helpline on 0808 800 6000 to speak to their expert nurses or find out more and donate at breastcancernow.org.
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Notes to editors
*Based on findings from Palmieri, C., Owide, J., & Fryer, K. (2022). Estimated Prevalence of Metastatic Breast Cancer in England, 2016-2021. JAMA Network Open, 5(12), e2248069 https://doi.org/10.1001/jamanetworkopen.2022.48069. This paper estimates 57,215 people living with secondary breast cancer in England in 2020/21. Combined with requested data from Public Health Scotland (2022) estimating 3,945 people living with secondary breast cancer at the end of 2020.