Research participants required if you have BRCA1 and BRCA2

Public Archive
1

“This study has received approval from Breast Cancer Care’s research and evaluation team, and from our Service User Research Partnership members. Collectively we think that this study advances the aims and objectives of the charity and the breast cancer population we aim to serve. We hope that this research will help to highlight the key messages required by women with breast cancer (and their relatives) about BRCA1 and BRCA2 and the best time to receive this information.”

 

Key messages about BRCA1 and BRCA2

for women with breast or ovarian cancer

If you have had breast or ovarian cancer and have a BRCA1 or BRCA2 gene fault you may be eligible to take part in this research study.

What is the study about?

The aim of the study is to identify the key messages required by women with breast or ovarian cancer (and their relatives) about BRCA1 and BRCA2 and the best time to receive this information.

Identifying the key messages about BRCA1 and BRCA2 is important for some women with breast or ovarian cancer in order to help them to reach decisions about genetic testing, managing cancer risks and informing other family members.

We are seeking the views of women with breast or ovarian cancer and a BRCA1 or BRCA2 gene fault as well as clinicians specialising in cancer and genetics.

Who is eligible to take part in the study?

Adult women who:

  • Have had (or are currently being treated for) breast or ovarian cancer
  • Have a cancer-causing fault in the BRCA1 or BRCA2 gene
  • Had genetic testing in the UK after 2006
  • Were the first person in their family to be found to have the gene fault

What is involved in taking part in the study?

If you take part in the study we will ask you to review the information given to women with breast or ovarian cancer about a BRCA1 or BRCA2 gene fault. We will ask you to decide what information you consider to be the key messages and the best time for the information to be communicated to women with cancer. We will provide you with guidelines to help you with this. We will then circulate the anonymised responses of all the participants, to see if there is agreement. We may contact you up to three times about this.  It may take you about 45 minutes to an hour the first time you review the messages and about 30 minutes after that. You would be able to do this in your own home.

What to do if you are interested in the study

This study is being undertaken by Ms Chris Jacobs, Consultant Genetic Counsellor in Cancer Genetics at Guy’s Hospital in London as part of a PhD. Chris Jacobs is funded by a National Institute of Health Research (NIHR) Doctoral Research Fellowship.  

All data will be collected and stored in accordance with the Data Protection Act 1998.

If you are interested in finding out more about this study, please email Chris.Jacobs@gstt.nhs.uk

2

This sounds interesting… Thanks gonna email them

3

I am interested in participating in your research. I was diagnosed with breast cancer 19th November. Had an 18 mm lump and 3 nodes removed on 21st Nov and start chemo on 6th Jan. I had grade 3 stage 1. Hormone receptive. No nodes involved. I am the first in my family to have breast cancer. I am 49 years old.

4

I had triple negative dcis stage 3 breast cancer 12 years ago. I was 31. I have this week been told I carry the BRCA1 cancer gene. During the past 12 years my mum and sister both developed breast cancer. My sis is currently going through chemo. She also has the gene. We both have a 60% ovarian cancer risk as well. I have decided to have a double mastectomy and removal of my ovaries. Is there anyone who has had risk reducing surgery? I am 43 :slight_smile: I am also considering taking part in the research x

5

Hello, im interested in taking part if this is still a current thread. I was diagnosed with high grade dcis in march 2014. Had lumpectomy with clear margins april. Oncologist referred me for genetic testing. Radiotherapy on hold while waiting for results. Positive for brca2 in august. First family member to test for gene. Strong family history of bc and prostate cancer on paternal side. My father diagnosed at 59. Uncle and grandfather both with prostate. Thanks