BRCA1

dm9960
dm9960 Member Posts: 2

Hello to All,

 

I was diagnosed with DCIS Stage 0 Grade 3.  I had the genetic testing due to family history and tested positive for BRCA1.  My children will be tested as well.  My questions is this:

I had a double masectomy due to the BRCA1.  My breast surgeon said I don't need to worry about reoccerence since it was DCIS.  I have read that others with this diagnosis have gotten reoccerence or have regular follow up care to check for reoccerence.  Any suggestions on how I should proceed?

Comments

  • Chuck Z
    Chuck Z Member Posts: 22
    BRACA posititive.

    You did not mention the cell type of your breast cancer. Also, if you have not already had a complete hysterecomy.The odds of also getting Ovarian cancer rises sunificantly, for those who are BRACA-1or 2. But I would presume that the Genealogist has already sat down with you. And explained the chances for getting other cancers.

  • dm9960
    dm9960 Member Posts: 2
    Chuck Z said:

    BRACA posititive.

    You did not mention the cell type of your breast cancer. Also, if you have not already had a complete hysterecomy.The odds of also getting Ovarian cancer rises sunificantly, for those who are BRACA-1or 2. But I would presume that the Genealogist has already sat down with you. And explained the chances for getting other cancers.

    no one has gone over any of

    no one has gone over any of this really with me.  Everything I've learned is from reading online.  I had a partial hysterectomy 10 years ago.  They tried to remove my ovaries last month but couldn't get to them due to scar tissue, that is another surgery once my breast recon is completed.  I have read so many different things, not sure what to do.  Should I look into an oncologist on my own?

  • corey50
    corey50 Member Posts: 111
    Genetic counselor

    Hi, I'm sorry you're feeling so lost in all of this, all the decisions that we have to make can be so overwhelming.  You should schedule an appointment with a genetic counselor first thing and they will help you understand the results and what steps to take next. They are usually not MDs, but clinical social workers or with an advanced degree and work within the system of a hospital or medical practice. They are usually the ones who order and run the BRCA test. 

    Do you mind if i ask who ordered the genetic test for you? Usually you're refered to a genetic counselor before you even have the test done.  But going forward i would check with the nearest hospital that has a breast health center. Or the hospital where you had your surgery. Your breast surgeon or ob/gyn should really be more helpful  with advice in this situation. You could check with their office first. i would say you don't need an oncologist right now,  although they can also be resources for more nformation and for follow-up care.  

    Hope that helps,

    Good luck.