BRCA Positive- what to do

hi robin,

i also have stage 3 BC and found out i am positive for BRCA1. i'm not sure what the difference is between 1 and 2, so my comments may not be relevant to you. firstly, when you had a hysterectomy, was it a full one (including ovaries and fallopian tubes)? my onc told me this is the most impt thing I should do (i am doing it in 1.5 weeks) because my risk for ovarian cancer is very high and it is hard to catch early. regarding my breasts, i had a lumpectomy to remove my tumor. i decided not to have a prophy MX - my onc said that at stage 3, a new cancer in the breast (which is what the mx would try to reduce risk of) would have no effect on my life expectancy, and that I need to be more worried about progression to stage 4 and not a new cancer developing. She recommended to get regular scans (yearly MRI and mammo and US), and keep my breasts. 

I definitely think that i made the right decision for now, and i can always decide to have a mx later on if i change my mind. i think the impt thing to remember is that you shouldn't feel pressured to make a decision quickly - take your time to decide what is right for you. 

good luck with whatever you decide.

Robin -

I got my positive test results while I was doing neoadjuvant chemo so I was able to make my decision before any surgery.  Even before I knew that I was BRCA2+ it was being suggested that I do a BMX.  I was leaning a little bit that way because my dx was ILC.  Since ILC is very seldom seen by a mammo I was very concerned that I could ended up repeating the whole treatment thing again with my right breast if I didn't do a mammo.  It was the thought of doing chemo again and risking having lymph node involvement again that was pushing me toward the BMX.  Once I was tested positive it was a very easy decision to make.

I'm 52.  I'm very happy I did the BMX.  The surgery on the right side was so easy.  It was a simple mast with no lymph node testing.  Thankfully the tissue was clear.  I only had minor lymphedema on my left side but my shoulder joint has had problems.  I'm finishing up on my second set of physical therapy visits.  My range of motion is OK and, more importantly, the pain is almost gone.  But I'm so glad I have a good right shoulder!

I didn't opt for recon because I just can't face any more surgery.  I really like wearing the forms - they are very comfortable on me.  But I have a friend who had a single mx and she absolutely hates her form because she feels so uneven.  The nice thing about the BMX is that whatever you do, recon or not, you have a chance at being "balanced" again.