BRCA2 With No Family History of Ovarian or Breast Cancer

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HelpMe38
HelpMe38 Member Posts: 8
Hi - I am 38 years old and was recently in shock to find out that I have the BRCA2 mutation. I have absolutely no family history of ovarian or breast cancer. I just had a baby. I would really prefer not to have a mastectomy. I have been told that my risk of the cancer has gone from 6% (general pop.) to 30-35%. I am breastfeeding and have been told that the screening wouldn't be accurate so I am not even sure if I should stop breastfeeding early. I will have a manual screening for now. Given that there is no family history, I am thinking that someone has to have the gene, but has lived, so I am leaning towards yearly examinations rather than removal of breasts. But, I am just not sure what to do. I am scared. Any advice, information or input would be appreciated. In case you are wondering why I did the test with no family history, it was offered to women recently when it normally isn't and so I decided to do it. Now it has changed my life forever. Thanks in advance for reading.

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  • mamolady
    mamolady Member Posts: 796 Member
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    MRI
    If you are opting for aggressive screening, ask for an MRI along with the mammos.
    There is no good screening tool for ovarian CA. Once you are done having kids, you may want to consider having the ovaries out. That may also reduce your risk of BC. My sister was offered tamoxifen for 5 years to reduce her risk (she has 2 sisters w/ BC, 1 aunt and 2 great aunts). You could ask about that.

    Any decision has to be the right one for you. Gather all the information you can. Discuss this at length with your husband and anyone else whose opinion will matter to you. Take your time to come to the decision. (Do start screening soon though)

    All the best,
    Cindy
  • HelpMe38
    HelpMe38 Member Posts: 8
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    mamolady said:

    MRI
    If you are opting for aggressive screening, ask for an MRI along with the mammos.
    There is no good screening tool for ovarian CA. Once you are done having kids, you may want to consider having the ovaries out. That may also reduce your risk of BC. My sister was offered tamoxifen for 5 years to reduce her risk (she has 2 sisters w/ BC, 1 aunt and 2 great aunts). You could ask about that.

    Any decision has to be the right one for you. Gather all the information you can. Discuss this at length with your husband and anyone else whose opinion will matter to you. Take your time to come to the decision. (Do start screening soon though)

    All the best,
    Cindy

    Thanks
    Thanks Cindy. I will do the MRI - the only problem is that I cannot do it while I am breastfeeding as I have been told that it wouldn't be accurate given the chemistry of the breast during breastfeeding and also that I cannot have the dye while breastfeeding.
    Do you think it makes a difference that I don't have any family history of ovarian or breast cancer? I am terrified of having ovaries out because of the forced menopause and I might not be able to do the hormone replacement therapy. It seems that there are so many risks no matter which decision... I don't know how to live with this diagnosis without worrying all the time.......
  • mamolady
    mamolady Member Posts: 796 Member
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    HelpMe38 said:

    Thanks
    Thanks Cindy. I will do the MRI - the only problem is that I cannot do it while I am breastfeeding as I have been told that it wouldn't be accurate given the chemistry of the breast during breastfeeding and also that I cannot have the dye while breastfeeding.
    Do you think it makes a difference that I don't have any family history of ovarian or breast cancer? I am terrified of having ovaries out because of the forced menopause and I might not be able to do the hormone replacement therapy. It seems that there are so many risks no matter which decision... I don't know how to live with this diagnosis without worrying all the time.......

    Worrying really won't change
    Worrying really won't change anything so keep that in mind.
    I really don't know if there is significance of not having history. We don't have the BRCA gene but we have 3 generations. Go figure.
    Your best bet would be to make an appointment with an oncologist. They can help you assess you options. There are always risks, you need to decide which ones you are willing to deal with.

    Only you can decide what is best for you.

    Cindy

    PS - the milk gets in the way with the mammo and MRI. It obscures the image. Depending on how long you plan to breast feed, it may not be significant if you wait. My daughter waited to 10 months after I was diagnosed before she quit nursing so she could get the MRI. It was clear!
  • zahalene
    zahalene Member Posts: 670
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    Me Too!
    I was diagnosed with bc after finding a lump myself at age 38, had a 1 1/2 yr old who I had just finished breast feeding. NO history in my family.
    But here is the thing about history: A few years AFTER I was dx with breast cancer, my MOM was dx with ovarian cancer (caught early and treated successfully), then a few years AFTER that, my GRANDMOTHER (Mom's mother) was dx with bladder cancer (at age 98, and not the cause of her death at age 100).
    So you see, the whole history thing is only minimally useful, in my opinion.
    Also, my mother lived to be 81, my grandmother died at age 100, and I am now a 25 year survivor and am 63, after being diagnosed at age 38.
    Please don't freak out. Just get the best possible treatment and make the best informed decisions you possibly can. Then go out there and LIVE your life.
    God bless.
  • HelpMe38
    HelpMe38 Member Posts: 8
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    zahalene said:

    Me Too!
    I was diagnosed with bc after finding a lump myself at age 38, had a 1 1/2 yr old who I had just finished breast feeding. NO history in my family.
    But here is the thing about history: A few years AFTER I was dx with breast cancer, my MOM was dx with ovarian cancer (caught early and treated successfully), then a few years AFTER that, my GRANDMOTHER (Mom's mother) was dx with bladder cancer (at age 98, and not the cause of her death at age 100).
    So you see, the whole history thing is only minimally useful, in my opinion.
    Also, my mother lived to be 81, my grandmother died at age 100, and I am now a 25 year survivor and am 63, after being diagnosed at age 38.
    Please don't freak out. Just get the best possible treatment and make the best informed decisions you possibly can. Then go out there and LIVE your life.
    God bless.

    Thanks
    Wow - thanks for your email. Was wondering how your mom found out she had ovarian cancer as I am leaning toward keeping my ovaries but have heard that the screening methods aren't great. Also, how did u beat your breast cancer? Thanks again. You made me feel better knowing that you all survived the cancers. Look forward to your reply.
  • HelpMe38
    HelpMe38 Member Posts: 8
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    mamolady said:

    Worrying really won't change
    Worrying really won't change anything so keep that in mind.
    I really don't know if there is significance of not having history. We don't have the BRCA gene but we have 3 generations. Go figure.
    Your best bet would be to make an appointment with an oncologist. They can help you assess you options. There are always risks, you need to decide which ones you are willing to deal with.

    Only you can decide what is best for you.

    Cindy

    PS - the milk gets in the way with the mammo and MRI. It obscures the image. Depending on how long you plan to breast feed, it may not be significant if you wait. My daughter waited to 10 months after I was diagnosed before she quit nursing so she could get the MRI. It was clear!

    Thanks
    I am going to see an onc for the ovarian and a breast specialist. Thanks so much.
  • zahalene
    zahalene Member Posts: 670
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    HelpMe38 said:

    Thanks
    Wow - thanks for your email. Was wondering how your mom found out she had ovarian cancer as I am leaning toward keeping my ovaries but have heard that the screening methods aren't great. Also, how did u beat your breast cancer? Thanks again. You made me feel better knowing that you all survived the cancers. Look forward to your reply.

    Mom's cancer was found
    Mom's cancer was found during a routine exam. It was early and had not spread outside of the one ovary involved. She had radiation for several weeks and no further treatment.
    I actually lost one breast in 1986, the second in 1988, and was dx with bone cancer in 1996. After both mastectomies I underwent 10 months of chemo and then 5 weeks of radiation. Then I was on tamoxifen for 7 years. The bone cancer was treated with oral chemo only. Early detection and an aggressive program of treatment were the keys to my recovery, along with God's blessings.
    By the way, my two breast cancers were separate and unrelated to each other, not re-occurences. The bone cancer was suspected to be a matastacising of the first breast cancer.
    Maintaining good general health so that the body is capable of sustaining itself and 'fighting the good fight' is our best defence against any type of beast which attempts to invade our bodies, be it cancer or some other disease.
    Good luck to you and God bless.
  • survivorbc09
    survivorbc09 Member Posts: 4,374 Member
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    mamolady said:

    MRI
    If you are opting for aggressive screening, ask for an MRI along with the mammos.
    There is no good screening tool for ovarian CA. Once you are done having kids, you may want to consider having the ovaries out. That may also reduce your risk of BC. My sister was offered tamoxifen for 5 years to reduce her risk (she has 2 sisters w/ BC, 1 aunt and 2 great aunts). You could ask about that.

    Any decision has to be the right one for you. Gather all the information you can. Discuss this at length with your husband and anyone else whose opinion will matter to you. Take your time to come to the decision. (Do start screening soon though)

    All the best,
    Cindy

    Only you can make this type
    Only you can make this type of decision. I do agree with Cindy in asking for a MRI also.

    Wishing you good luck with what you decide.


    Hugs, Jan