When is a good time

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daughterofsurvivors
daughterofsurvivors Member Posts: 21

when is the recomended time to go through with the gene testing and prohylactic mastectomy?  i am about ten years shy of when my mother was diagnosed, pre-menopausal.  Does anyone know the recomendation. 

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  • leaf
    leaf Member Posts: 8,188
    edited September 2008

    There is probably no recommendation.  I think the person must be able to give legal consent though.  It is a very individual decision.

    Some people who have a bad family history choose not to get tested for BRCA,and some who are BRCA positive choose not to have bilateral mastectomies.

      Usually if a person has a bad family history of breast/ovarian cancer, they prefer to first test a person who has had the breast cancer - and it may be the first person in the family who got breast cancer (if that is possible - if they are still alive - for some families they have documented breast cancer going back for many, many generations.)

    Some people with a horrible family history get negative BRCA results. 

    The purpose of the first genetic counseling meeting is to inform you of the possible consequences of genetic testing, and what they may mean to you emotionally.  They usually indicate that genetic testing may want to be done if it would change treatment decisions.

    The genetics counselor should not be pressuring you for or against genetic testing. 

    They usually  recommend to start screening daughters when they are about 10 years younger than their mother got breast cancer. 

  • daughterofsurvivors
    daughterofsurvivors Member Posts: 21
    edited September 2008

    unfortunately my grandmother did not survive, and my mother is against getting the testing done.  So it would be jus tme getting it for myself and my daughter to know.  I am scared to do it now and afraid to wait. 

  • leaf
    leaf Member Posts: 8,188
    edited September 2008

    It is a difficult decision.  

    I went to a board-certified genetics counselor at a major university.  She was well-trained in counseling skills.  You do NOT have to make the decision when you are counseled.  You need to follow your own path.  You need to make this decision when YOU are ready, not when anyone else is ready.

  • sarahlu2
    sarahlu2 Member Posts: 5
    edited October 2008

    I went for testing AFTER my long bout with breast cancer, I was in my 30s and my sister is a survivor, it helped me to answer the "why me" question a bit better.  I found the knowledge to be powerful, and my surgeon even commented on the confidence I had when I saw her soon after those results.  As leaf said, many of the major university hospitals have counseling, I went to one such place and I think I had maybe 2 informational sessions before blood was drawn.  They were wonderful to talk to and make recommendations but it took me 2 years to feel my life was ready to take on the mastectomy and reconstruction.  But I am headed that way in a month and can't wait to have it behind me!  I think a gray cloud will be lifted from my mind--that reoccurence cloud.

    Good luck with your decisions, remember what someone told me "knowledge is power!"

  • Dee123
    Dee123 Member Posts: 26
    edited October 2008

    Hi My mom had breast cancer and  tested positive for the BRCA 2 mutation.  (I never had cancer) but contacted the hospital and asked to be tested. I tested positive as well. At first I was terrifed. I cried for months. Then I decided to make use of this knowledge. My family doctor told me to use this as a positive experience. That I have choices that others did not.  

    But after meeting over 10 specialists, plastic surgeons and genetic councellors I decided at age 40 to have an oopherectomy and mastectomy with implants. I wanted to reduce my risk as much as I possible can. I felt that a MRI along with mammography was a great alternative but I didn't make me feel safe. Again I felt that it would only tell me when the cancer arrived. Yes early detection is great but I did not want the cancer at all (early or not).  I discussed this long and hard with my husband and kids and decided to take action and do everything I could to significantly reduce my chances of breast and ovarian cancer.  It truly is a personal choice and  what could one can live with.

    Should i choose surveillance and then live everyday in fear or have the surgery and know that i did everything i could to prevent the big C.

    Take your time meet as many professionals as you can, meet with other who are BRCA  carriers, attend support groups, gather information as we know Knowledge is power.  Only you can make that call and do what you are comfortable with.

  • aquariusgi
    aquariusgi Member Posts: 26
    edited October 2008

    My mother passed of breast cancer 22 years ago this month. It has haunted me ever since. I've always tried to be pro active about it. SO, going on my former doctor;s advice I knew a mammogram was coming when I turned 33. That made me nervous enough since I turned 30 this year. After describing a thickness in my breast to my current doctor she explained that we should definitely start at 35 since it is rare in younger women. She thought she would humor me and ease my fears by sending me for a mammogram. 5 weeks, later I've had 2 biopsies, diagnosed with LCIS and am waiting for treatment.  

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