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BRCA 2 and considering double mastectomy.

Mcshanon
Posted by

So most of my family are now tested and I'm one of those found to have a gene abnormality - BRCA 2. 

My sister currently has breast cancer, which monitoring failed to find, and so I'm considering a hysterectomy and double mastectomy, with reconstruction. 

Which online group/s should I try? Thank you. 

Thehighlander
Posted by

Hi  and welcome to the Online Community, although I am so sorry to see the circumstance that brought you here and so sorry to hear the challenges you are facing.

This is a hard time for you and all of the family but talking with people who are on the same journey will help a lot.

My cancer journey was vera different but if you follow this link to our Breast cancer and BRCA Positive Forums you will be able to connect with people who understand the journey you are on. You can ask the folks questions about treatments and what to expect during this time.

Follow the links and join the groups. Hit the 'Start a Discussion' tab and introduce yourself to the group - you could just copy an paste what you put in this first post.

Remember to go to the right on the group home page and select how you want to receive email notifications when someone answers your posts.

You may also find our various Macmillan Support Line Services on 0808 808 00 00 to be very helpful even if all you want to do is talk with friendly person that can help in lots of ways.

We also have our ‘Ask an Expert’section but please allow a few days to get an reply.

We also have our Online Information and Support Section Where you will find some great pages covering the cancer diagnosis, treatment and information pages covering most types of cancers.

Talking to people face to face can help a lot so check to see if you have any Local Macmillan Support Groups in your area or a Maggie’s Centre as these folks are amazing.

If you haven't yet completed your profile when you have a minute could you pop something about your journey so far into it. This really helps others when answering. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Edit Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine profile by clicking on my username.

All the best.

Mike - Thehighlander

It always seems impossible until its done - Nelson Mandela

ricki
Posted by

Dear Mcshanon

Like you I am BRCA 2 and to date I am free of cancer.  My sister and grandmother died of ovarian cancer and my other sister has had breast cancer.

I had had a hysterectomy and so it was an easy decision to have my ovaries removed.

Currently I am on annual mammograms and also taking tamoxifen as a chemo-prevention drug.  I still do not know what to do about breast reconstruction and my breast surgeon is cautious about me having a double mastectomy.

So at the moment I keep talking and recent research for BRCA 2 suggests that   if you get breast cancer at an early stage it is very treatable.  Sometimes that sounds OK but other times it does not.

In terms of face to face support it is variable.  If you live in Kent there is a BRCA support group.  I live in Essex and there is FORCE Essex.  They do not meet as regularly as BRCA Kent.

Good luck and keep asking questions.

ricki