BRCA2 & bilateral mascetomy .. how to decide treatment plan?

brca1953

I'm just found out I am BRCA2 positive.  I've always known I was high risk as it's pretty much 100% BC on my mother's side.  All her and siblings (3 female & 1 male) have had breast cancer (2 deaths).  4 out of 5 girls in her mother's family have had (& died from) breast cancer plus numerous cousins.  My sister was just diagnoised wtih breast cancer which prompted me to be tested.  She was BRCA2 and so am I but we have 2 sisters who were not.  I've talked to surgeons and am 99% positive I'll have prophylatic masectomy.  Just need to call them back next week.  Am I being irrational?  Dr. says it's rational to do this but also rational to just do survellience or Tamoxifen.  How did you decide to take this big step?

 Thanks, jo

Emily2008

Sorry for your bad news.  It's no fun being a genetic mutant!

However, you have the blessing of knowing the facts about your family situation.  This is a good thing!

I was dx with bc in my left breast at age 35.  I had a mast with reconstruction and then began chemo.  When I finally decided to get the BRCA test (no family members with bc!), I knew that in the "unlikely" case that I was positive, I would most definitely have a prophy mast on the other side.  I had already been through cancer once, there was no way I would wait around for it to strike again (which would be likely since I had up to an 80% chance of it).  Sure enough, I was BRCA 2 pos.  I found out in Nov, and had the prophy mast in Feb.

To me it was a no-brainer.  My 3 sons had been through enough, not to mention my husband.  I wanted to be proactive and take care of it since I felt it was really a gift to know such critical information.

That being said, I think the decision is more difficult for women who haven't actually had bc themselves.  There's the sense that "maybe I'll be lucky and not get it."  Understandable, but I couldn't have lived with that high of a risk.

Have you seen the BRCA forums at Facingourrisk.org?  Lots of great advice there, and a specific forum for women who have opted for surveillance.

Good luck with this very difficult decision.  Just so you know, if I had to do it over, I'd do everything exactly the same.

brca1953

thank you, prophylatic mast is really the way I am leaning or at least what I feel is the wise thing to do.  I was in my late 20's when my mother died from bc and I know she would have done anything to have lived to see her grandchildren.  I feel like I need to do this for all the family and friends who would have jumped at the chance to live longer.  I don't want my daughter to go thru what I went thru or my husband to go thru what my father did.  I just worry about the pain and emotional stuff I'll have to go thru in having mast.  Even with reconstruction I'm afraid I'll feel bad about what I see in the mirror.  And I don't know how to tell my boss without him thinking I'm being irrational when I don't even have bc.  Insurance will cover mast and recon because of BRCA though. 

brca1953

It's great that you can feel so positive about your plan.  I know I'd have pbm if I ever had dx of bc.  I want to see my grandchildren as my mother died from bc before I had children.  I have 1 grandson and another grandchild on the way.  They are so precious, my husband and children still need me.  Next week will talk to counciler, bs and ps.  I'm sure I'll choose pbm and ps already told me I don't have enough fat to use my own tissue so will have to have implants.  I just lost a good friend to bc and know how precious this gift of life is.  She had hoped to live to see her daughter graduate from high school but wasn't able to hold on long enough.  This friend helped me thru my own mother's death and I know they both would have jumped at the chance to life longer.