BRCA mutation carriers research request

[OvacomeSupport]

Dear All

We have been contacted by a researcher wishing to recruit BRCA mutation carriers who are thinking about having a mastectomy. The information is as follows:

ONLINE PARTICIPANT REQUEST

Participants needed for a study examining the role of others on BRCA carriers' intentions to undergo risk-reducing breast surgery (bilateral mastectomy)

BRCA CARRIERS – ARE YOU CONSIDERING OR HAVE YOU MADE A DECISION ABOUT RISK-REDUCING BREAST SURGERY?

DID YOU MEET OTHER WOMEN WHO HAVE HAD SIMILAR SURGERY?

RESEARCH PARTICIPANTS NEEDED

At the University of Surrey, we are conducting a psychology study to help understand how the decisions of BRCA carriers to have risk-reducing breast surgery (bilateral mastectomy) are influenced by meeting other women who have had similar surgery. Sometimes, but not always, these meetings are called ‘Show and Tell’ events. These meetings may be organised between individuals, within support groups or through health services.

We are seeking UK female BRCA carriers without a breast cancer diagnosis who during the course of their decision about risk-reducing breast surgery met with other women who have had similar surgery

ONLINE QUESTIONNAIRES

If you agree to take part, your participation will involve completing one online questionnaire.

If you are interested in participating, please visit this web link

surreyfahs.eu.qualtrics.com...

Alternatively, if you would like to learn more, please contact me at [e-mail].

RESEARCHER

Mark Wherry

PhD researcher in Health Psychology

& Trainee Health Psychologist

School of Psychology,

University of Surrey.

e. [e-mail]

THIS RESEARCH HAS BEEN REVIEWED AND HAS RECEIVED A FAVOURABLE ETHICAL OPINION FROM THE UNIVERSITY OF SURREY ETHICS COMMITTEE.

Best wishes

Anna

Ovacome Support Service Manager

[Lyndy]

I have completed the questions but was not sure my experience was really represented in this survey. I decided against double mastectomy and was told I would need to be 5 years clear of OC before I was considered anyway. More recently I am considering it again- partly because I didn’t want reconstruction and now have a ‘flat friend ‘ who didn’t have it- she’s inspired me. But the questions did not allow me to explain this.

[OvacomeSupport Partner My Ovacome Team in reply to Lyndy]

Hello Lyndy

Thank you for completing the questionnaire and for your feedback. Would you be agreeable to us passing your comments on to the researcher?

Best wishes

Anna

[Lyndy in reply to OvacomeSupport]

Yes that’s fine x

[OvacomeSupport Partner My Ovacome Team in reply to Lyndy]

Thank you Lyndy, we will do that. I’m sure he’ll find the comments helpful.

Best wishes

Anna

[Katmal-UK in reply to Lyndy]

Hi Lyndy Sorry to butt in but I picked up on your comment about being clear of OC for 5 years before being considered for a double mastectomy. I was offered one as soon as I was advised I had the BRAC gene. I decided against it and have been having mammograms every 18 months instead, which has recently changed to annually. I have been told I can change my mind at any time. I wonder if it's an area thing? Kathy xx

[Lyndy in reply to Katmal-UK]

Hello Kathy

Yes it may well be postcode lottery- I think had I pursued it I probably would have found a way but at the time I didn’t want more surgery and have no evidence of BC in my family. I’m having annual mammograms but my thinking is beginning to change, particularly as I seem to have escaped recurrence for now 😀

[Katmal-UK in reply to Lyndy]

Changed ... as in something you might now consider? I'm still against it for me, I think it's because I have been through so much already - though to be honest that's nowhere near what some of the ladies go through. xx