“I had treatment last year and I want to give something back.”
A study to learn more about the needs of breast cancer survivors after treatment
We know that this is an especially worrying time for people with cancer and their family and friends. We have separate information about coronavirus and cancer. Please read that information alongside this page. We will update that information as guidance changes.
Please note - this trial is no longer recruiting patients. We hope to add results when they are available.
Researchers in this study will talk to women who have completed breast cancer treatment, to find out how best to support other women in the future.
As treatments for breast cancer improve, more and more people survive their breast cancer. But, we know very little about the needs and experiences of breast cancer survivors, and in particular how these differ in people from different backgrounds.
Some women have expressed concern about the lack of available support for breast cancer patients once they have completed hospital based treatment. Issues include mental, emotional and social problems, fatigue, pain and lymphoedema. Hospital follow up appointments tend to focus on looking for any return of the cancer, and monitoring treatment effects. Physical, emotional and social concerns can often be overlooked, even though there is evidence that referring people to support services in good time improves
Researchers in this study will talk to women who have finished breast cancer treatment in the last year. They hope that what they learn will help them develop a new service or resource to support women in these situations. They will then test this new service or resource in a later study.
You will not have any direct benefit from taking part in this study. But the results of the study will be used to help survivors of breast cancer in the future.
Who can enter
You may be able to enter this study if you
- Have been diagnosed with breast cancer that has not spread to other parts of your body (primary breast cancer)
- Have completed treatment for your breast cancer in the last year
- Are coming to hospital every 3 to 6 months for a check up
- Can easily speak and understand English
- Belong to one of the following ethnic groups – White British, Black African, Black Caribbean, Indian, Pakistani or Bangladeshi
Everyone who would like to take part will fill out a short questionnaire. The study team needs to make sure that they include a wide range of people of different ages, experiences and backgrounds. This means not everyone who completes this questionnaire will be able to take part. The team will let you know if you have been chosen or not.
This is a phase 1/2 study. Phase 1 will recruit 60 to 70 women. You will have an interview asking about your experiences since finishing hospital treatment. The interview will be audio recorded and take between 20 minutes and an hour and a half, depending on what you would like to talk about.
The team will then use what you and the other women have said, to work out what is important to women who have completed breast cancer treatment. The topics that come up will be looked at more in phase 2 of the study.
Phase 2 of the study will recruit 30 to 35 of the women who took part in phase 1, into one of 8 focus groups. Not everyone who takes part in phase 1 will be asked to take part in phase 2.
In each focus group, women will discuss the types of service or resources that would meet women’s emotional, social and practical needs after breast cancer treatment. The team will use the findings to develop a new service or resource, which will be tested later in another group of women who have had breast cancer.
The research team will also interview people involved in local cancer services - for example, community and voluntary organisations, breast care nurses, doctors and GPs. They want to identify any factors that would help or hinder plans to improve the well being of people with breast cancer after treatment.
In phase 1 you can have your interview over the phone, or the researcher can visit you at home or another meeting place.
In phase 2, the focus groups will meet at the hospital or another local convenient place. The focus groups will last about 2 hours.
You will not have any side effects from taking part in this study. The study team will give you contact details of people who can support you in case you find talking about your experiences upsetting.
How to join a clinical trial
Ms Karen Scanlon
Breast Cancer Care
King's College London
Medical Research Council's Social & Public Health Services Unit
National Institute for Health Research Cancer Research Network (NCRN)
The Big Lottery Fund