A study looking at communication about breast cancer that runs in families

Please note - this trial is no longer recruiting patients. We hope to add results when they are available.

Cancer type:

Breast cancer





This study is to understand more about the feelings of women who are told that their cancer could, or does, run in the family at the same time as they are newly diagnosed with breast cancer.

Until recently, if you had breast cancer and a family history of the disease, your specialist would generally refer you to discuss the possibility of having your genes tested (genetic test) after you had finished treatment. But there is now increasing demand for women with a family history to have genetic testing when they are diagnosed, as the results can help doctors to work out the best surgery and treatment.

But we don’t know much about how women are affected by having genetic testing when they are first diagnosed. Researchers in this study want to better understand what it is like for women to learn that their newly diagnosed breast cancer does, or could, run in the family (be hereditary Open a glossary item). The study team will carry out a series of interviews with women in this situation, to understand more about how they feel.

The aim of this study is to better understand what it is like for women to be told that their breast cancer does, or could, run in the family.

Who can enter

This study is for women with newly diagnosed breast cancer who are referred to the genetics unit at Guy’s Hospital in London. If you are suitable for this study, your genetics specialist (clinician) will ask if you would like to take part. Women taking part will

  • Have just been diagnosed with breast cancer
  • Be suitable for genetic testing and waiting to have this
  • Have children or a close female relative under 50 years old (such as a sister, niece, aunt or cousin)
  • Be White British
  • Be between 25 and 70 years old

You cannot enter this study if

  • Your cancer has spread to another part of your body, or you have another area of cancer in your breast that is not related to the first (you have a second primary)
  • You have a major health condition or something about your lifestyle that may affect your cancer treatment or the genetic counselling, such as diabetes, asthma, an addiction to drugs or alcohol, heavy smoking or being very overweight (obese)

Trial design

This study will recruit up to 30 women.

You will have up to 3 interviews, which will be audio recorded. The number of interviews you have will depend on whether you have genetic testing or not and the outcome of your genetic test.

The first interview will ask about your experience and understanding of being diagnosed with breast cancer. The second interview will be about your experience and understanding of the discussions in the genetics department.

If you continue in the study, the third interview will be about how you feel once you know the outcome of the genetic testing.

If you have genetic testing, the researcher will be able to see this information after your genetics doctor has told you your results.

Hospital visits

You have the interviews at a place convenient to you. Each interview will last between 60 and 90 minutes.

Side effects

You should not have any side effects from taking part in this study, but you may find talking about the issues involved distressing. The study team will give you contact details for the breast care nurses and a genetics counsellor in case you need them.

Recruitment start:

Recruitment end:

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.

Please note - unless we state otherwise in the summary, you need to talk to your doctor about joining a trial.

Chief Investigator

Ms Chris Jacobs

Supported by

Birkbeck College
Guy's and St Thomas' NHS Foundation Trust
National Institute for Health Research (NIHR)
NIHR Clinical Research Network: Cancer
University College London (UCL)

Freephone 0808 800 4040

Last review date

CRUK internal database number:


Please note - unless we state otherwise in the summary, you need to talk to your doctor about joining a trial.

Caroline took part in a clinical trial for breast cancer

“I had treatment last year and I want to give something back.”

Last reviewed:

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