“I had treatment last year and I want to give something back.”
A study looking at improving support for women with breast cancer from the first symptom to diagnosis
Please note - this trial is no longer recruiting patients. We hope to add results when they are available.
This study is looking at women’s experiences of a recent breast cancer diagnosis, to see how others can be better supported when they find a possible symptom of breast cancer. This study is supported by Cancer Research UK as part of the National Awareness and Early Detection Initiative (NAEDI).
Sometimes women are diagnosed with breast cancer after finding a lump or noticing changes in their breast. Health professionals would like to offer better support to women, particularly those in the African and Caribbean community, from the time they spot these warning signs to the point they are diagnosed with breast cancer. To do this, we need to understand women’s experiences, thoughts and feelings after discovering breast changes. And what they may do when they discover a lump or change in their breast.
This study is split into 2 phases. In phase 1 researchers interview women with breast cancer to find out about their experiences. In phase 2 groups of women affected by breast cancer discuss these experiences.
The team hope that this study will tell them more about the information and support needed by women who discover a lump or change in their breast. This research study may not help you personally. But the information you give may help improve services for other women in the future.
Who can enter
This study is split into 2 phases. Phase 1 interviewed women with breast cancer about their experiences. Phase 2 formed groups of women affected by breast cancer to discuss these experiences. Women in Phase 2 will either have had breast cancer themselves or know someone who has. If you are able to enter, either a study doctor or nurse, or a patient already taking part in the study will ask if you would like to take part.
Women able to take part in phase 2 (the focus groups) need to
- Be black African or black Caribbean
- Have been diagnosed with breast cancer at least 2 months ago or have a black African or black Caribbean friend who was diagnosed at least 2 months ago
- Be able to speak English
You cannot enter this study if you
- Have had more than one diagnosis of breast cancer, such as breast cancer that has come back, or another cancer somewhere else in your breast that has developed separately from the first cancer (a second primary cancer)
- Have any condition that affects your understanding
- Have any other condition that your doctor thinks would make it difficult for you to take part
This is a phase1/2 study.
Phase 1 recruited 60 women. Each woman taking part had an interview with a member of the research team. The researcher asked about experiences of being diagnosed with breast cancer. And, about how women taking part came to notice a lump or changes in their breast, and what they did about it. And, about what went well, and what didn’t go so well, in the time between noticing the change and being told that they had breast cancer.
The team also read these women's medical notes, to help them understand the information they were told during these interviews.
Phase 2 involves running a number of focus groups around the country. Each will be made up of 6 to 8 black African or black Caribbean women who have either had breast cancer themselves, or know someone who has. Each focus group will listen to a recording produced using information from phase 1. The researcher leading the group will then ask you to say whether you believe you would have thought or acted in the same ways as the women on the tape. The focus group will last between 1½ to 2 hours.
To help with recruitment, the team will ask if you have any other black African or black Caribbean women friends who also may like to take part.
If you take part in phase 1, you will have the interview at a time a place that is good for you. The focus groups for phase 2 will take place in a private room at the hospital, or nearby. The study team will pay your travel expenses.
You shouldn’t find the questions upsetting, but some of the issues raised may make you anxious. If you feel uncomfortable at any time you can tell the study researcher. They will put you in touch with someone so that you can talk about your concerns.
How to join a clinical trial
Please note: In order to join a trial you will need to discuss it with your doctor, unless otherwise specified.
Department of Health
Economic and Social Research Council
Health & Social Care R&D Public Health Agency Northern Ireland
King's College London
National Awareness and Early Diagnosis Initiative (NAEDI)
National Institute for Health Research Cancer Research Network (NCRN)
Wales Office of Research and Development