BRCA1 BRCA2

empenage
empenage Member Posts: 2
edited March 2014 in Breast Cancer #1
As anyone had a double masectomy, then been tested for the BRCA1 and 2, with a positive result, then elected to keep their ovaries and just monitored them very closely???

Comments

  • Sandis
    Sandis Member Posts: 85
    #2
    I think everyone has to make their own decision based on very personal issues. I had breast cancer. when I found out I had BRCA1 gene, I had a bilateral mastectomy and hysterectomy. I was 55 and my mom and aunt and cousin died of ovarian cancer and my grandmother and other aunt of breast cancer. My sister has the gene and she is getting monitored regularly. Everyone has to make their own decision. I had no negative effect from the hysterectomy. It gave me peace of mind. You need to do what gives you peace of mind. Sandi
  • krisrey
    krisrey Member Posts: 194
    #3
    Sandis said:

    I think everyone has to make their own decision based on very personal issues. I had breast cancer. when I found out I had BRCA1 gene, I had a bilateral mastectomy and hysterectomy. I was 55 and my mom and aunt and cousin died of ovarian cancer and my grandmother and other aunt of breast cancer. My sister has the gene and she is getting monitored regularly. Everyone has to make their own decision. I had no negative effect from the hysterectomy. It gave me peace of mind. You need to do what gives you peace of mind. Sandi

    Hi Sandi,
    I am trying to figure out if I should get tested for the gene. I have not really begun to research it yet but my GYN did offer for me to meet with a genetic counsler. Do they recomend that you get tested only if you have family history? Or could I be the start of carrying the gene in the family? There is no family history that I know of in my family of either breast or ovarian cancer. Most of the women have lived long lives ( my grandmother is 98). It was a shock in my family for me to have breast cancer at 42 and I have twin girls (10) so I am not knowing if I should get the gene testing or not. Any information you can share would be appreciated.
    Thanks
    Kris
  • Sandis
    Sandis Member Posts: 85
    #4
    krisrey said:

    Hi Sandi,
    I am trying to figure out if I should get tested for the gene. I have not really begun to research it yet but my GYN did offer for me to meet with a genetic counsler. Do they recomend that you get tested only if you have family history? Or could I be the start of carrying the gene in the family? There is no family history that I know of in my family of either breast or ovarian cancer. Most of the women have lived long lives ( my grandmother is 98). It was a shock in my family for me to have breast cancer at 42 and I have twin girls (10) so I am not knowing if I should get the gene testing or not. Any information you can share would be appreciated.
    Thanks
    Kris

    The test is expensive (I think around $3,000) so most insurance companies won't pay for it unless you have significant family history. The genetic counselor can talk with you about your history and give you advice. Most people with breast cancer do not have the gene. I have two sisters, a number of nieces, and a daughter. I found it really helpful for helping me decide to have the mastectomy, hysterectomy and for my family. Ofcourse, you have to make your own decision.
  • SusanAnne
    SusanAnne Member Posts: 245
    #5
    krisrey said:

    Hi Sandi,
    I am trying to figure out if I should get tested for the gene. I have not really begun to research it yet but my GYN did offer for me to meet with a genetic counsler. Do they recomend that you get tested only if you have family history? Or could I be the start of carrying the gene in the family? There is no family history that I know of in my family of either breast or ovarian cancer. Most of the women have lived long lives ( my grandmother is 98). It was a shock in my family for me to have breast cancer at 42 and I have twin girls (10) so I am not knowing if I should get the gene testing or not. Any information you can share would be appreciated.
    Thanks
    Kris

    Hi Kris,

    My grandmother and all five of her sisters had breast cancer. One also had ovarian cancer. I decided to be tested since I have two daughters. My result was negative. Unfortunately, that doesn't totally put my mind at ease. When you have that many relatives with cancer, it's likely that it is genetic and we just haven't discovered that particular gene yet. My doctors agree.

    Meet with the counsler and check with your insurance company to see if they will cover the test. No harm in asking.

    Susan

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