Just curious, if you have a strong family history...

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CypressCynthia
CypressCynthia Member Posts: 4,014 Member
edited March 2014 in Breast Cancer #1
Just curious, if you have s strong family history (as I do), did you have the genetic testing and did you test positive or negative? My sister and I both did the testing (many years apart) and we both tested negative for BRCA1 & 2. The oncologist says that we have a gene, but they just don't have a test for it yet.
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  • lynn1950
    lynn1950 Member Posts: 2,570
    #2
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    Within 12 months of my
    Within 12 months of my diagnosis, my mom and sister were both diagnosed with DCIS. We all were tested and all are negative. Hm......
  • TraciInLA
    TraciInLA Member Posts: 1,994 Member
    #3
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    We're all negative
    Cypress -

    My father only has two sisters -- both of them are breast cancer survivors, plus two cousins, and now me, his only child. And we're all BRCA negative.

    A co-worker of mine comes from a family where just about every woman gets breast cancer -- her mother + all of her sisters and herself. All BRCA negative.

    An oncologist I consulted with before chemo, a breast cancer specialist, told me the same thing yours did -- there are so many families with stories like this, that there just has to be a genetic piece of breast cancer that just hasn't been found yet.

    Traci
  • Christmas Girl
    Christmas Girl Member Posts: 3,682 Member
    #4
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    TraciInLA said:

    We're all negative
    Cypress -

    My father only has two sisters -- both of them are breast cancer survivors, plus two cousins, and now me, his only child. And we're all BRCA negative.

    A co-worker of mine comes from a family where just about every woman gets breast cancer -- her mother + all of her sisters and herself. All BRCA negative.

    An oncologist I consulted with before chemo, a breast cancer specialist, told me the same thing yours did -- there are so many families with stories like this, that there just has to be a genetic piece of breast cancer that just hasn't been found yet.

    Traci

    No...
    I am the first. For any type of cancer at all, both sides of my family.
  • KathiM
    KathiM Member Posts: 8,028 Member
    #5
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    Yup to the family tie, Nope to the test....
    My mom's dad died from colorectal cancer. My mom has survived endometrial and breast cancer. I have survived rectal and breast cancer. My full sister has survived anal cancer.

    I appologize all the time to my daughter for giving her a septic tank for a gene pool....

    But, altho I support testing if necessary for treatment options, I, myself, will not have it done. I'm fairly sure there is a tie with my grandfather, thru my mom (endometrial can also be linked to colorectal...something called HNPCC gene). I ask myself what the testing would cause me to do. Mastectomy? No. I'll face that after my next fight. Being vigilant? Yup...but I am that anyway....I KNOW I can get cancer more than once!!!!

    It's a personal choice, but it's early into this testing, and there are false positives as well as negatives. I applaude you all that make the testing community keep working and refining these tests, as well as researching for more genes...

    Hugs, Kathi
  • CypressCynthia
    CypressCynthia Member Posts: 4,014 Member
    #6
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    KathiM said:

    Yup to the family tie, Nope to the test....
    My mom's dad died from colorectal cancer. My mom has survived endometrial and breast cancer. I have survived rectal and breast cancer. My full sister has survived anal cancer.

    I appologize all the time to my daughter for giving her a septic tank for a gene pool....

    But, altho I support testing if necessary for treatment options, I, myself, will not have it done. I'm fairly sure there is a tie with my grandfather, thru my mom (endometrial can also be linked to colorectal...something called HNPCC gene). I ask myself what the testing would cause me to do. Mastectomy? No. I'll face that after my next fight. Being vigilant? Yup...but I am that anyway....I KNOW I can get cancer more than once!!!!

    It's a personal choice, but it's early into this testing, and there are false positives as well as negatives. I applaude you all that make the testing community keep working and refining these tests, as well as researching for more genes...

    Hugs, Kathi

    Do not feel guilty Kathi,
    Do not feel guilty Kathi, you gave your daughter life and I am sure that she doesn't blame you anymore than you blame your stricken relatives. Your history sounds so similar to mine that it is scary (excepting the endometrial)! 2 sisters and I have had breast ca, 1 brother with thyroid ca, my dad had colrectal ca, and his brother died of colon ca. He had no sisters. His mom (my paternal grandmother) died from breast ca. All of her 4 sisters had breast ca and one died of colon ca.
  • Christine Louise
    Christine Louise Member Posts: 426 Member
    #7
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    Yes, family cancers: No BRCA
    Mom tested negative. I won't get tested now (long insurance story). My doctors agree that it's still a good idea for me to get uterus and ovaries removed, even though there's no "proof" I have Hereditary Breast and Ovarian Cancer Syndrome.

    I'm beginning to wonder how many with family histories DO test positive for BRCA. All I read about are negative tests. ???

    Maybe I woke up crabby today or am getting cynical -- Is Genomic Health (only makers of BRACA test) making money off of something that doesn't really help many who get it?
  • DianeBC
    DianeBC Member Posts: 3,881 Member
    #8
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    lynn1950 said:

    Within 12 months of my
    Within 12 months of my diagnosis, my mom and sister were both diagnosed with DCIS. We all were tested and all are negative. Hm......

    I am ER and PR +, and, the
    I am ER and PR +, and, the first in my family to have bc.
  • greyhoundluvr
    greyhoundluvr Member Posts: 402
    #9
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    Yup and Nope
    I also have a breast cancer history but through my Mom only. She had her first breats cancer around 40 and a second primary a couple of years later. I had the BRCA and also tested negative (as did my sister). But my oncologist told me the same as the others - there is probably a gene but it just hasn't been identified yet. To me, the testing was worth it even though it doesn't answer all of the genetic questions. I knew that I was going to have to make some tougher choices if it was positive as would my daughter. At the same time, I don't think there is any doubt that the testing is over-priced because of the monopoly and should be available to all women who need it to make their healt-care decisions.
  • mimivac
    mimivac Member Posts: 2,143 Member
    #10
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    They haven't found all the genes yet
    I received testing because I was diagnosed under the age of 40. Other than that risk factor, I don't have too much cancer in the family. My materal grandmother had post-menapausal breast cancer and my grandfather was said to have died of cancer at the age of 94. Everyone has lived a long life and I hope to do so as well. I tested negative for both genes.

    Mimi
  • Dawne.Hope
    Dawne.Hope Member Posts: 823
    #11
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    Yes and No, here
    Both my mother and my grandmother had BC - post-menopausal. After my mother was diagnosed, her surgeon told me that I needed to start getting mammograms at age 30 and told me all the things I needed to do; eat right, stay thin, exercise, all of that.

    I did everything 'right' and at 39, still got BC. I tested negative for the BRAC1 and 2, and I am convinced too that there are genetic links they haven't found yet.
  • cahjah75
    cahjah75 Member Posts: 2,631
    #12
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    I was just tested
    I was just tested 10 days ago and I'm negative! Yah! I am the 5th in my family to get BC but every one of us was different. My genetic counselor said I don't have the BRCA I or II gene but I could have another mutation they haven't found yet.
    Char
  • jo jo
    jo jo Member Posts: 1,175
    #13
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    I dont understand what this
    I dont understand what this gene test is...BRCA?? Is everyone with BC suppose to have this test and when is it done....cuz ive never heard of it!
  • cahjah75
    cahjah75 Member Posts: 2,631
    #14
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    jo jo said:

    I dont understand what this
    I dont understand what this gene test is...BRCA?? Is everyone with BC suppose to have this test and when is it done....cuz ive never heard of it!

    The BRCA
    The BRCA tests are for high risk individuals. The genetic counselor goes through your whole family history and then tell you your risk. Then a blood test sample is sent to a lab in CA. Women who are of Jewish descent have a higher risk. For me it was more familial.
    Char
  • ms.sunshine
    ms.sunshine Member Posts: 707 Member
    #15
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    cahjah75 said:

    The BRCA
    The BRCA tests are for high risk individuals. The genetic counselor goes through your whole family history and then tell you your risk. Then a blood test sample is sent to a lab in CA. Women who are of Jewish descent have a higher risk. For me it was more familial.
    Char

    I'm the 1st that I know of
    I'm the 1st that I know of in my family.
  • Angie2U
    Angie2U Member Posts: 2,991
    #16
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    ms.sunshine said:

    I'm the 1st that I know of
    I'm the 1st that I know of in my family.

    I'm the first!
    I'm the first!
  • Boppy_of_6
    Boppy_of_6 Member Posts: 1,138
    #17
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    Angie2U said:

    I'm the first!
    I'm the first!

    I am the only one in my
    I am the only one in my family with the exception of one 1st cousin on Mom's side. I did not have the test done. God Bless
    (((Hugs))) Janice
  • Dot53
    Dot53 Member Posts: 239 Member
    #18
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    Yes & No
    My mother and both sisters had breast cancer and the one sister also got colon cancer... I tested negative for BRCA 1&2 but am supposed to take the BART test soon as my doctor feels very strongly that it will come back positive.

    Dot
  • Ritzy
    Ritzy Member Posts: 4,381 Member
    #19
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    TraciInLA said:

    We're all negative
    Cypress -

    My father only has two sisters -- both of them are breast cancer survivors, plus two cousins, and now me, his only child. And we're all BRCA negative.

    A co-worker of mine comes from a family where just about every woman gets breast cancer -- her mother + all of her sisters and herself. All BRCA negative.

    An oncologist I consulted with before chemo, a breast cancer specialist, told me the same thing yours did -- there are so many families with stories like this, that there just has to be a genetic piece of breast cancer that just hasn't been found yet.

    Traci

    No, I am the first
    No, I am the first
  • tambow
    tambow Member Posts: 42
    #20
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    Me too
    I have a strong family history(maternal & paternal) and tested negative for BRCA1&2 also. My doctors agree that there are other genetic mutations related to BC that haven't been identified (or they have no way to test for them yet.....) I'm sure that bureaucracy of the drug companies has something to do with it......
  • Megan M
    Megan M Member Posts: 3,000
    #21
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    Christmas Girl said:

    No...
    I am the first. For any type of cancer at all, both sides of my family.

    I'm the only one that I know
    I'm the only one that I know of.

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