Hi there
I set up BRCA Umbrella - a social and support network for BRCA+ people. We have been live for less than a month and already have nearly 100 members. I am looking for information on local support groups.
I am BRCA1+ and due for preventative surgery next Monday, 16th March. I’m having Latissimus Dorsi Prophylactic Bilateral Mastectomy immediate reconstruction. I am 35 and have 8 family members who have either died or lived through breast cancer.
I found my own journey very hard without being able to meet anyone else and there are few physical support groups for people who have BRCA. With so many issues to face in the knowledge of the mutation, there is a need for groups to form.
If you attend any, I would LOVE to hear from you. If you are looking for more interactive support - please Google us.
Well wishes to all you lovely people.
Looking forward to hearing from you 
Leigh-ann
Hi Leigh-Ann
I am not a member of a support group, because there isnt one near me.
I hope to be involved in setting one up at some stage, but dont really know where to start.
best wishes
Jane
Hi Jane
I think I just approved your membership :). I am looking into how individuals set up their own support groups locally. I think if this knowledge is known people will actively create a group. I will post this when I can. It’s good to know there are people out there, like you Jane, who are willing to start a group.
I know that we are few and far between and so getting to a ‘local’ support group is hard and may take some travelling but it is a worthwhile experience, even if it is just once or twice. I know that BRCA+ people look for others on Cancer support sites but they do not have cancer, they just want to find someone to talk to. FORCE are a great medical resource and have a good message board and forum and hopefully will become more like BRCA Umbrella as a more social environment. I think they have plans too which is brilliant!
Anyone else attend a BRCA Support Group?
Hi All,
I dont attend any support groups because as you say there isnt any, i have brca2 my dad is a carrier, although he has never had cancer he is 65, his mum and 3 sisters all died of bc. I had bilateral masectomy using the muscle from my back and immediate recon too that was in dec 08. I had full hystrectomy and oopherecomy 12 days ago as a preventative im 33 and would love to speak to anyone with brca. I also dont know how to go about setting a support group up.
Take Care
Leslee x
Hi all
I have emailed our specialist nurses for information regarding the issues in this thread and here is some which may be of help to you:
BCC run Telephone Support Groups for women who carry a gene and have had breast cancer and for women who carry the gene and haven’t had breast cancer. These groups will run approx twice a year. You can contact the helpline for more information and dates on these telephone support groups on 0808 800 6000 weekdays 9-5 and Sat 9-2 and this link will take you to more information:
breastcancercare.org.uk/server/show/nav.631
Macmillan cancer support offers support and information on setting up new support groups. They also give small grants to help new groups in this process. Cancerline number 0808 808 2020:
macmillan.org.uk/
The National Hereditary Breast Cancer Helpline holds a database of women who are happy to talk to each other and provide support. Telephone 01629 813000 (available 24 hours):
breastcancergenetics.co.uk/Fact%20Sheet.pdf
I hope this is useful to you
Best wishes
Lucy
Hi All,
Thanks Lucy i will definatly take alook at the fact sheet. Im also going to phone although i would love to meet up with people who have brca.
Thanks Again
Take Care
Leslee x
Hi Leslee
Check your inbox, I have sent you a message.
jane
x
Hi. I am also looking for a BRCA 1 support group as I have recently been diagnosed with secondaries in liver and bones two and a half years after breast primary and would love to have contact with people in a similar situation. I have heard about some specific treatments for BRCA 1 and would be very interested to hear if anyone has had any experience of them?
Thanks,
Kate
Hi. I forgot to say that I hope you’re recovering well from your surgery. I had the same thing done a year ago and that side of things has been brilliant. I had an oophorectomy at the end of Jan and the surgery went well but also revealed the liver secondaries. I would like to get involved in your BRCA UMbrella if there any members in a similar situation?
Best wishes,
Kate
Hi Kate
Not sure if you’ve found us yet, I survived my surgery and am doing well now. Sat outside with the laptop trying to catch up with my life. It’s like being a superstar for a while -ha ha!
Did you have back flap surgery too? I am experiencing a lot of numbness in the backs of my arms and armpits at the moment and flu skin feeling. I know it is early days and will take some time. How long before you felt back to normal after your surgery?
I am sorry to hear about your cancer - that sucks. I am not sure who has had secondary cancer on our site but you can add a post in the forum. The density of BRCA people increases daily and so the chances of you meeting someone else in a similar situation is more likely than a general cancer support site. Here is our link brcaumbrella.ning.com
Hope you are having a good day.
The sun is shining and even when life feels like it might eat you up, the sun makes things better…along with Spring - which is bursting everywhere right now.
Come and join us!
Take care of yourself
Leigh-ann x
Sorry…forgot to say…everyone BRCA+ is welcome to join us at brcaumbrella.ning.com a global BRCA support and social network where people are generally online at any time of day. Varying ages and experience of living with BRCA diagnosis.
Update: My surgery was a great success and I seem to have won the race against breast cancer! Hoorah! (Sincere apologies for those of you who have not had such fortune or any other cancer - keep strong people).
Lucy - thank you so much for posting the support group info. The problem with support groups for BRCA+ people, they are generally bi annual and from a diagnosis to surgery is only 6 months and generally you never encounter another person faced with the same decisions as you. I wanted to actually meet someone else not talk on the phone. Online support appears to be a great source of instant comfort. I want to get people who are diagnosed to attend a group within a month of diagnosis. My recent survey of our members showed that they felt this would have been hugely beneficial in a time of great anxiety.
I will endeavour to get things moving in this area. I have plenty of volunteers to support others. Maybe McMillan are the way forward with the grants.
Excellent.
Hugs all
Leigh-ann