“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
This study looked at women’s experiences of a recent breast cancer diagnosis. The researchers wanted to find out how to improve support for other women when they find a possible symptom of breast cancer.
Cancer Research UK supported this study as part of the National Awareness and Early Detection Initiative (NAEDI).
More about this trial
Sometimes women are diagnosed with breast cancer after finding symptoms, such as a lump, or noticing changes in their breast. Health professionals would like to offer better support to women from the time they spot these changes to the point they are diagnosed with breast cancer. They particularly wanted to see if there were differences between different ethnic groups.
To do this, the research team needed to understand women’s experiences, thoughts and feelings after discovering breast changes. And what they did when they discovered a lump or change in their breast.
There were 2 parts to this study and:
- in part 1, researchers interviewed women with breast cancer to find out about their experiences
- in part 2, groups of women who had either been, or knew someone who had been, diagnosed with breast cancer discussed these experiences in more detail
The team hoped that this study would tell them more about the information and support needed by women from different ethnic groups, who discover a lump or change in their breast.
Summary of results
The study team found that there were important differences between different ethnic groups. This affected what they knew about, and what they did about, possible symptoms of breast cancer.
The research team recruited 94 women from around the UK to this study. They interviewed 60 women to begin with. Another 34 women took part in the focus groups. The Black African and Black Caribbean women who took part were either born outside the UK (first generation) or within the UK (second generation).
All 60 women who were interviewed had been diagnosed with breast cancer:
- 20 were Black African women – 16 first generation and 4 second generation
- 20 were Black Caribbean women – 9 first generation and 11 second generation
- 20 were White British women
The team asked these 60 women about things such as:
- how much they knew about cancer, particularly breast cancer, before they were diagnosed
- what they thought about breast cancer awareness
- how they felt when they found a possible symptom of breast cancer
- how they found out what the symptoms meant
- what they decided to do about it
- their experiences of asking for help
The research team then looked at the 4 stages that lead to a diagnosis of breast cancer. They were:
- noticing changes
- working out what the changes mean
- deciding what to do
- finding a way through the healthcare system
There were some important differences in the groups of women in this study.
Willingness to listen to health information
White British women and second generation Black Caribbean women were the most willing to listen to health information about breast cancer. This could be because they are more likely to know someone who has been affected.
First generation Black African and Black Caribbean women, and some second generation Black African women, were less likely to be interested in health information about breast cancer. This could be because they are less likely to know someone who has been affected. They are more familiar with other medical conditions.
Awareness of risk and symptoms
Most Black African and first generation Black Caribbean women didn’t think they were at risk. White British women and second generation Black Caribbean women often knew about breast cancer, but didn’t think they were at risk if they didn’t have a family history of it.
White British and second generation Black Caribbean women were most aware of possible symptoms, and first generation Black African women were least aware.
Working out what changes mean
All women found it difficult to decide whether changes other than a lump were important.
Telling someone when they noticed a change
First generation Black African and Black Caribbean women were the least aware of symptoms other than a lump. They were most likely to ignore them.
White British and second generation Black African or Black Caribbean women were more likely to tell family or friends if they had noticed a change.
First generation Black African and Black Caribbean women were less likely to tell anyone if they noticed a change. And this could lead to a delay in diagnosis.
Deciding what to do
White British, Black Caribbean and second generation Black African women reported that the fear of being diagnosed with breast cancer motivated them to go to the doctor. They wanted to be reassured that it wasn’t cancer.
But the same fear led to a delay in first generation Black African women, because they preferred not to face the possibility.
How long it took to report symptoms
Most White British and second generation Black Caribbean and Black African women only waited a short time before they went to get their symptoms checked. But some first generation Black Caribbean and Black African women used painkillers, prayer, or alternative medicine first. In some cases they waited 1 or 2 years before getting symptoms checked.
Most White British and Black Caribbean women knew it was important to be diagnosed early. But most first generation Black African women weren’t aware this was important.
Finding a way through the healthcare system
All White British, Black Caribbean and second generation Black African women went to see their GP or to a walk in clinic.
Many first generation Black African women went to Accident and Emergency, because they weren’t sure what to do. Most of these women were told to contact their GP, but some didn’t do this very quickly.
Difficulty with appointments
All women in the study found it hard to book a GP appointment, especially those who had to take time off work or had childcare responsibilities.
White British, second generation Black Caribbean and Black African women felt more comfortable with the system and with contacting doctors.
First generation Black Caribbean and Black African women felt less comfortable with this, especially if their GP had dismissed concerns in the past. For some women, this led to a delay in going to see their GP.
The study team found that nationality and country of birth affected what women knew and thought about breast cancer. White British and second generation Black Caribbean women had similar levels of understanding and knew what to do. But first generation Black African women often had less knowledge and weren’t sure what to do. This led to delays in their diagnosis.
The team suggest that information and advice about symptoms needs to be presented differently to different people. This would help them understand more about breast cancer and help prevent delays in diagnosis.
We have based this summary on information from the research team. The information they sent us has been reviewed by independent specialists (
How to join a clinical trial
Prof Emma Ream
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)
NIHR Clinical Research Network: Cancer
Wales Office of Research and Development