First cousin with BC - is this significant?

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anonymice
anonymice Member Posts: 532
edited June 2014 in Genetic Testing

Hello, everyone.  My mom told me yesterday that my first cousin also had bc.  We both were diagnosed rather young, in our late 30s/early 40s. 

Do you know if this constitutes a strong family tendency towards bc, or is it more likely to be coincidence?  The problem is that my cousin with bc, who was early stage and cured, doesn't want anyone to know.  I have read that first cousins aren't really considered in family cancer history, and I've read that they are.  I've never had a BRCA test.

So if I warn the women in my family that they should be vigilant with self exams and tests, I can't possibly just say "one of my first cousins".   There are only so many of them - 6 to be exact.  So I would be "outing" my cousin, who none of us keeps in contact with, another dead giveaway.

Opinions?  

Comments

  • jancie
    jancie Member Posts: 2,631
    edited June 2011

    Both of my first cousins have been diagnosed with BC.  One of them 10 years ago and the other one just last month.

    I have taken the BRCA test and came out negative.  The cousin that was diagnosed last month took the test and hers was negative.  The first cousin that was diagnosed 10 years ago has never taken the test but I talked to her yesterday and encouraged her to go ahead and do so as she has two daughters.

    I have kept my BC diagnoses from all family members except these two cousins who are sisters because they needed the information for the genetic counseling.  Because of my own personal situation I do not want them sharing my BC with anyone else in the family and they have respected this.

    I don't know if this is helpful or not.

  • Leah_S
    Leah_S Member Posts: 8,458
    edited June 2011

    Pam, if you warn them to be vigilant and just say "since I was dx at a young age" you won't be betraying your cousin's confidence but you will be helping them.

    Also, there are a lot of incidences of STRONG family hx but BRCA- so even if you were tested and negative it would be considerate of you to warn your relatives to be careful. I am in that category and because of my constant talk of family hx my cousin was careful and caught an early DCIS that was so small she had a lumpectomy & didn't need rads. So keep talking!

    Leah

  • dlb823
    dlb823 Member Posts: 9,430
    edited June 2011

    Pam, I have 2 (of many) cousins (they're sisters), who were dx'd w/bc right around age 40, and my sister had DCIS 2x.  They all tested negative for BRCA.  I was counselled not to even take the test, since I was older than all of them @ dx.  I think this is what Leah was talking about -- you can not be BRCA+ and still have something genetic going on that's just not yet understood.

    As far as your cousin goes, obviously you have to respect her wishes.  OTOH, since bc was so rarely talked about pre 1970s & Betty Ford, I often wonder how much more of it there might have been in our families that we'll never know about.  And with so many younger women being dx'd these days, I think one of the messages that needs to be communicated is that this can happen to anyone, family hx or not.     Deanna  

  • TwoHobbies
    TwoHobbies Member Posts: 2,118
    edited June 2011

    I have a first cousin who also had BC.  Pre-BC, I would pretty much get no response from Drs when I mentioned this.  A first cousin is a third degree relative, and it doesn't seem to be highly important.  They always talk about first degree or second degree relatives.  I did see one study that says it increases your risk to 16%.  Every woman in the US has a 12% risk so this would increase risk by 4%.  Chances are, your cousins' will either be totally paranoid because you had cancer, or totally thinking it can't happen to them.  All women should be vigilant, and you can certainly convey that message wholeheartedly.     

  • stef58
    stef58 Member Posts: 288
    edited June 2011

    I was wondering about getting this test. My first cousin, who is a cousin from both sides just got diagnosed. I am going to talk to my onco about the test. Just wondin g how you figure  1st and 2nd degree. Our moms are sisters and dads are brothers. What do think should I get the test. There is alot of strange cancers on both sides of my families. Thanks for the input  dianne

  • pebee
    pebee Member Posts: 317
    edited June 2011

    stef58 - Dianne

    They are not your genetic cousins - they may be 2nd degree- your genetic siblings since you have all four grandparents in common, not two like regular cousins.....

    I would go to a genetic counselor for this...... 

  • anonymice
    anonymice Member Posts: 532
    edited June 2011

    Thanks for the opinions, and comforting stats about first cousins raising stats slightly.  

    I will just encourage them to be highly vigilant because of me, and truly there is very little known about my type of BC (IBC) so I can easily say they need to be careful.

    Thanks for the responses! 

  • hydeskate
    hydeskate Member Posts: 297
    edited July 2011

    stef58

    I am brac 1 postive with cancer and I have a cousin who like yours is my first cousin on both sides except mine is a brother sister combo.  My dad and her mom are brother/sister and my mom and her dad are brother/sister.  She too tested postive for the Brac 1 gene and becasue we share so many genes, and its the closest you can get without being sisters, they immediately took base scans of her CT, PET, etc.  They want to check her twice a year but her insurance will not cover it so she just gets testing once a year.

  • kathleen1966
    kathleen1966 Member Posts: 793
    edited July 2011

    I have two cousins, same age, diagnosed with the same cancer at the exact same time as I was. They are first cousins removed....I don't know if this is significant.  No-one seems to think so.  I tested negative for the BRCA gene....A lot of my fathers aunts and uncles died of cancer. By the time I was born, their were only two of six left. I do wonder if breast cancer was hidden. But my grandmother lived to be in her late nineties, as did her mother and my other grandmother is still alive in her nineties. It has never been in my immediate family. None of my actual first counsins have been diagnosed ( there are 6 of them, for a total of 8 female cousins) I think it may just be a fluke.

  • anonymice
    anonymice Member Posts: 532
    edited July 2011

    It may or may not be a coincidence Kathleen but my father's Aunts and Uncles *all* died of colon cancer - yet that is not a family history.  Breast cancer might well have been hidden there also as they all died rather youngish.

  • MRDRN
    MRDRN Member Posts: 537
    edited July 2011

    Pam

    My cousin has stage 4 ovarian for some time now...first had Colon but I think it was later determined that the ovarian was the primary.  Anyway she was the first to be tested for our family gene at Penn.  They since tested my sister and I and we both have the gene.  By her telling us, I was able to "screen" and pick it up at the first screening, my sis is still screening but will also hopefully dx it early since we know the fam history.

    MRDRN 

  • RetiredLibby
    RetiredLibby Member Posts: 1,992
    edited July 2011

    I was tested for BRCA 1&2 at my first dx of DCIS in 2007 (just short of 50) and tested negative.  My maternal grandmother had Pagets in her 50s, my mother's older sister was dx with IDC in her mid-60s, my mother was dx with DCIS at 81 (!she was one peeved old lady!) and my half-sister (through my mother) was dx with IDC at 66.  My sister had not been dx at the time of my first dx, but my onc felt that I had a strong family hx even though everyone else was post-meno (I remain pre-meno).  I was just dx with a recurrence of DCIS a few weeks ago.  There are many genetic factors that contribute to breast cancer, but there is only the one test for one factor.  (BTW, my mother died of metastatic colon cancer at 89 ... and there is a link between breast and colon cancer).

    L

    Edited to add:  I only have 3 female first cousins on my mother's side and to the best of my knowledge (we are not close and are not in touch) they have not been dx with bc.

  • goldie123
    goldie123 Member Posts: 59
    edited November 2011

     there are many genes that may be involved  with breast cancer . my sister died at 44 of bc, my father had bc and died several years later if pancreatic cancer as did his sister. of her direct relatives 2 died of pancreatic ,2 of ovarian 2 of bc with 2 more battling bc now. because of this history i was tested and shown negative.but i still came down with bc 5 yrs ago. my dr said because of such a strong family history there is probably another gene involved that just has not yet been discovered. so the one thing i stress to all my relatives is be super vigilant and dont neglect tests that is common sense advice anyone can use

  • anonymice
    anonymice Member Posts: 532
    edited December 2011

    Thank you, Goldie, and everyone for responding.  

    My mother died about 2 months ago, and her church held a dinner for her afterward which the previously mentioned first cousin came to pay her respects.  She was very open about it; I don't know if that's something that's changed with time.  But my issue, warning my family to be vigilant, pretty much resolved itself at the dinner.  From what I've read here, and from your responses, it's obvious that there are other "cancer genes".

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