triple negative & BRCA gene more common ??

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joannstar
joannstar Member Posts: 403 Member
in Breast Cancer #1
Yesterday at my 3rd 3-mth checkup post chemo (after 2 lumpectomies & 33 rads), my onc said that he wanted me tested for the BRCA gene...that medicare is now paying for testing on triple negatives and that my insurance probably will to. When I said that I don't have any children, he said -- "what about nieces & nephews". Evidently there was a new article published in just the last few days, but I haven't found it yet through googling He said that triple negatives have a higher probablility of having the gene, so he wants me tested. And if I am positive, we'll take out my ovaries ???? So now I play the waiting game again--not only for the blood work tumor markers but to see if the insurance will pay and if I am positive. I'm trying my best not to freak out, but really, perhaps I would have had a bi-lateral mastectomy if I had had this test done in 7/10 when I had my original biopsy.
BC seems to be the gift that keeps on giving...
JoAnn

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  • grams2jc
    grams2jc Member Posts: 756
    #2
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    You are right
    It does seem to just keep on giving. I don't know about triple negative and BRCA but can understand your frustration.

    Good luck,

    Jennifer
  • MAJW
    MAJW Member Posts: 2,510 Member
    #3
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    grams2jc said:

    You are right
    It does seem to just keep on giving. I don't know about triple negative and BRCA but can understand your frustration.

    Good luck,

    Jennifer

    Triple Neg...
    Confused as to why your doctor wants to remove your ovaries.....Triple Negative bc is not estrogen fed....I'm triple negative dx 2 1/2 yrs ago...dealing with recurrence....but NEVER has it been suggested I have my ovaries removed..... And My bc is not hereditary....

    I would seek a second opinion or third if needed...

    Wishing you the best,
    Nancy
  • joannstar
    joannstar Member Posts: 403 Member
    #4
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    MAJW said:

    Triple Neg...
    Confused as to why your doctor wants to remove your ovaries.....Triple Negative bc is not estrogen fed....I'm triple negative dx 2 1/2 yrs ago...dealing with recurrence....but NEVER has it been suggested I have my ovaries removed..... And My bc is not hereditary....

    I would seek a second opinion or third if needed...

    Wishing you the best,
    Nancy

    thanks for the suggestion, Nancy
    What he said is that if I am also BRCA positive, then removal of my overies would be a prophelactic measure to discuss having to prevent having cancer occur there. I am also 59 at the end of November so he took that into consideration. I totally trust my onc but I do hear you about a second opinion.

    You are a great source of strength to me and I hope that your treatment is successful.

    JoAnn
  • kookaa
    kookaa Member Posts: 27
    #5
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    I had the BRCA test done.
    I too had triple neg. It was my surgeon who wanted me tested. I too had no family history of BC. I was just shy of 50 yrs old. I FREAKED OUT! I have 2 children and grand children. After I calmed down I realized it was better to know. If you are positive your brothers sisters and nieces and nephews should all be tested.
    My test all came back NEG!!! I will pray yours do too. I also had lumpectomy ( after chemo) and 33 rads.My last rad in Aug. I am trying not to worry about it coming back. I think you are the only other person I have heard of who did not have a bi-lateral mastectomy . I too am scared I should have.
    As far as having your ovaries removed I would get a second opinion.
    I was told since I was TN it was not a issue. They are finding new things about TN all the time. Who do we trust???
    Please try not to worry to much. I have medical and they did approve the testing, but it can take a few months for the results.

    Take care, Tami
  • laughs_a_lot
    laughs_a_lot Member Posts: 1,368 Member
    #6
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    MAJW said:

    Triple Neg...
    Confused as to why your doctor wants to remove your ovaries.....Triple Negative bc is not estrogen fed....I'm triple negative dx 2 1/2 yrs ago...dealing with recurrence....but NEVER has it been suggested I have my ovaries removed..... And My bc is not hereditary....

    I would seek a second opinion or third if needed...

    Wishing you the best,
    Nancy

    Ovarian cancer common
    Ovarian cancer is common in those who test positive for the BCRA1 or BCRA2 gene. A pre-emptive removal of the ovaries keeps a person with the gene mutation from having to underto a second case of cancer. My insurance company would not pay for the test because the closest relative with the BCRA mutaion was a cousin.
  • joannstar
    joannstar Member Posts: 403 Member
    #7
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    kookaa said:

    I had the BRCA test done.
    I too had triple neg. It was my surgeon who wanted me tested. I too had no family history of BC. I was just shy of 50 yrs old. I FREAKED OUT! I have 2 children and grand children. After I calmed down I realized it was better to know. If you are positive your brothers sisters and nieces and nephews should all be tested.
    My test all came back NEG!!! I will pray yours do too. I also had lumpectomy ( after chemo) and 33 rads.My last rad in Aug. I am trying not to worry about it coming back. I think you are the only other person I have heard of who did not have a bi-lateral mastectomy . I too am scared I should have.
    As far as having your ovaries removed I would get a second opinion.
    I was told since I was TN it was not a issue. They are finding new things about TN all the time. Who do we trust???
    Please try not to worry to much. I have medical and they did approve the testing, but it can take a few months for the results.

    Take care, Tami

    Thanks
    I guess I'm going to have to learn to be patient...all the waiting drives me nuts.
    Sigh...
    JoAnn
  • jnl
    jnl Member Posts: 3,869 Member
    #8
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    MAJW said:

    Triple Neg...
    Confused as to why your doctor wants to remove your ovaries.....Triple Negative bc is not estrogen fed....I'm triple negative dx 2 1/2 yrs ago...dealing with recurrence....but NEVER has it been suggested I have my ovaries removed..... And My bc is not hereditary....

    I would seek a second opinion or third if needed...

    Wishing you the best,
    Nancy

    I agree with Nancy, you
    I agree with Nancy, you might want to get a 2nd opinion. Let us know.


    Hugs, Leeza
  • jamjar62
    jamjar62 Member Posts: 135
    #9
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    Positive BRCA 2
    Hi JoAnn,

    I was ER/PR+, herceptin - and my BRCA 2 came back positive. I have no family history of breast cancer. I was so shocked when it came back positive. My cancer was diagnosed 9 years ago when BRCA testing was brand new and it was never suggested that I have the test. Last spring, my GYN asked if I wanted to do it, so I did.

    I opted to have a hysterectomy because a positive BRCA increases your chances of getting ovarian cancer. My onc also suggested a double mastectomy. Nine years ago I had a large lumpectomy that required reconstruction. I am currently holding off on the mastectomy because I'm just not ready to go down that road. I saw a genetic counselor and he was comfortable with my decision to just do the hysterectomy as long as I was diligent about my check ups and mammograms.

    I think at some point in the future I will have the double mastectomy. I really thought I was done with this crap.

    Karen
  • poplolly
    poplolly Member Posts: 346
    #10
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    Brca gene
    My oncologist told me the same thing. My insurance did cover it and I was negative. She said if I were positive, she would recomment removing my ovaries.

    JUdy

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