Forum Discussion

carrylee's avatar
carrylee
Member
15 years ago

BRCA1

Hi, I've been told I have the BRAC1 gene, and was tested as my aunt had breast cancer, we have found now my dad has it and one of my sisters (my youngest sister prefers not to be tested). I am waiting for my first appointment and know I have a huge decision to make very soon. I know I am not in the same group as everyone on this site, but I'm struggling with getting the support from my family in my choice to have a prophylactic mastectomy they believe I should just opt for the scans for the rest of my life - meaning I will have the "maybe I have cancer/maybe not this month" over my head for the rest of my life. I want to reduce the chances of breast cancer. My younger sister (42) has the same gene and has had a hysterectomy but won't have a mastectomy, she is happy to get the scans. She sent me through photos of after the procedure and I think that is what is stopping her. Her husband has said the choice is hers. I'm not in a relationship and really don't care how I look (no one is going to see) and am more frightend of the cancer then how I look.

Has anyone had to make this decision and how did you explain it to your family, and how have you coped after the procedure?

7 Replies

  • countrykaren's avatar
    countrykaren
    Member
    12 years ago

    hi there i too am a BRAC1 carrier, all my auntys and lots of my cousins have already died from breast cancer in there early 40s my nanna died at 57 from breast cancer, my dad past the gene to me and my daughter, i have had the ovaries removed so far so good, no breast cancer yet but alot of biopsys my husband doesnt  want me to have my breasts removed as we have only been married 2 years, i hear that the removal is so bad but apparently you have to find people and research about the reconstruction of breasts and i am terrified about that what to do and how painful it is so i have just joined this site, as i didnt research about the ovaries removed and it threw me into full menopause which was terrible i am 47 years old

  • countrykaren's avatar
    countrykaren
    Member
    12 years ago

    hi there i too am a BRAC1 carrier, all my auntys and lots of my cousins have already died from breast cancer in there early 40s my nanna died at 57 from breast cancer, my dad past the gene to me and my daughter, i have had the ovaries removed so far so good, no breast cancer yet but alot of biopsys my husband doesnt  want me to have my breasts removed as we have only been married 2 years, i hear that the removal is so bad but apparently you have to find people and research about the reconstruction of breasts and i am terrified about that what to do and how painful it is so i have just joined this site, as i didnt research about the ovaries removed and it threw me into full menopause which was terrible i am 47 years old

  • carrylee's avatar
    carrylee
    Member
    14 years ago

    Thanks so much for your words Tanya. I am looking at reconstruction - and now will look forward to having a set that (hopefully) will sit where they used to (before breast feeding)!!!

    Carol.

  • carrylee's avatar
    carrylee
    Member
    15 years ago

    Hi Christine, thank you for that, I'll go to the sites and have a look.

  • carrylee's avatar
    carrylee
    Member
    15 years ago

    Thank you Daina, for the welcome. I'll jump on the sites and have a look.

  • christine's avatar
    christine
    Member
    15 years ago

    Hi I have just read your post re BRAC1.  I am a breast cancer survivor but do not carry the BRAC 1or 2 gene but had a very rare breast cancer called Inflammatory Breast cancer which is quite scary but with having wonderful doctors I am doing fine.  There is a website called The Pink Hope Foundation which deals with the genetic mutation.  The founder Krystal Barter carries the gene and I think you would find this site very helpful.

  • Anonymous's avatar
    Anonymous
    Not applicable
    15 years ago

    Hi Carrylee,

    Welcome to the online network please let me know if you need any help finding your way around.

    You may have already found the website page on Family History, but in case you haven't I thought I'd give you the link: http://www.bcna.org.au/about-breast-cancer/breast-cancer-family

    The other thing you can do is use the site's main search function to see if others have posted on the subject.  Just scroll up and you'll see the search field above the main navigation bar.  Type in 'BRCA1' and when the results come back you'll see on the right side which are blog posts.  I did one on 'BRCA1' if you want to check the results are here: http://www.bcna.org.au/search/node/BRCA1

    Hope that helps. :)

    Daina