Supporting decision-making on extended hormone therapy

What's the title of the study?

SWEET EXTEND: Supporting extended endocrine therapy in women with breast cancer

What’s the project about?

Many women who have primary breast cancer are recommended to use hormone (endocrine) therapy for at least 5 years after treatment to reduce recurrence risk. Women at a moderate to high risk of recurrence are recommended to use it for 7 to 10 years.

However, it’s unclear how much information and support women get about extended their hormone therapy past 5 years. Whilst it’s very important for women to get the right support when making this decision, there’s currently no standardised practice or set resources to aid this.

Researchers want to establish the most effective way(s) to support women who are recommended extended hormone therapy to make an informed decision.

They want to set up a patient advisory group to ensure that the research is informed by women in this group and make it relevant and impactful.

Who can take part?

The researchers are looking for 4-5 women to join the group. You can join the group if you’re over 18 years old and

• Have been diagnosed with primary breast cancer (stages 1 to 3)
• Have been prescribed hormone therapy for are approaching the five year and are still taking it, or have just passed the five year mark (within the last year) and are still taking it.

Women from Black, South Asian and other minoritised communities are especially encouraged to join, as there is a lack of research in this area for black women, and the researchers wish to address this gap.

Why do you want me to be involved?

By joining this group you can help the researchers understand the needs and priorities of women taking hormone therapy beyond 5 years to ensure that the research is appropriate and impactful.

What will you ask me to do?

As a group member, you’d have genuine input into shaping the research. You’d be involved in discussing how to make the research better and give your ideas on how to encourage women to participate. You may also be asked to comment on some documents, such as participant information sheets.

The group would meet a few times over an 18 month period. This  would be remotely over Zoom.

You’d be offered payment for your involvement in line with national INVOLVE guidance.

Please note, the research has not yet been granted funding, however if successful, it will begin in January 2025. There may be a meeting before this, which you’d be reimbursed for.

How do I get involved?

If you’re interested in getting involved in the patient advisory group, or to find out more, please contact Lucy on lmcgeagh@brookes.ac.uk. She’ll be in touch to set up a time for a brief call where she’ll give you more information about the project.