It was a bit lastminute.com but I made it to London (UK) to the first Breast Cancer Care Family History Forum. It was so good to finally meet two of BRCA Umbrella's Administrators, Jennifer and Caroline (who escaped this photo unfortunately), and to catch up with Lisa, Elaine and Rian from last years Race for Life weekender. It was good to meet some new faces and sad to see so many women with this damned gene mutation.
It was was a very well structured day that started with human bingo as the icebreaker, an intro from the Breast Cancer Care team and then a much needed tea, coffee and biscuit break. The day's highlights for me were the break out groups, with me in the preventative surgery and gene mutation identified group. The first session was an hour of just general chat amongst ourselves, sharing experience and questioning each other about things. The second session was recorded and guided by a facilitator so we didn't veer horribly off track. She asked key questions What support needs do you feel are missing from the NHS? What do you feel was missing from your surgery care by the NHS? What would you like to see developed as a support system for BRCA community?
We talked of many things, like;
- being asked for moulds of our nipples for prosthetics before they get incinerated forever. - being put in touch with some form of support group long before surgery is decided. - having an MRI following a positive diagnosis for BRCA1 or BRCA2 or identified as High Risk. - having the right to see any breast reconstruction surgeon anywhere in the country instead of being channelled into just what procedure your local surgeon does - having regular face to face BRCA support groups to meet and discuss all these things and more with real, live people.
There was a great talk about Genetics by a specialist and she answered as many questions as we could fire at her. I think this highlighted the need for a proper forum to discuss these things with professionals rather than scaring ourselves witless with things from the internet!
All in all..it was brilliant. 50% of the attendance were BRCA Umbrella members and we wore our badges with pride, we found a way of supporting each other in the absence of such support, we made BRCA Umbrella the support community it is and it is time to step it up a gear! Watch this space!