what makes you high risk???

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cshamber
cshamber Member Posts: 76
what makes you high risk???

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  • cshamber
    cshamber Member Posts: 76
    edited June 2008

    I was wondering when you would be considered "high risk" and then what difference does it make?

     I have only recently found out that I had a different father from my sisters. "His daughter" passed away at 48 from ovarian cancer. My oldest sister(again I guess she would be half?) had something removed from her breast when she was around 30. (I do not know what it was) My maternal grandmother died from breast cancer at 74, my maternal grandfather died from prostate cancer in his 60's. Now my mom has been recently dx'd(she is 73). I had a calcification they watched for a couple years-but since then fine. (no biopsy or anything) Am I at any higher risk? I read somewhere that family members dx'd older didn't really increase your chances, is that true?

    TIA

    Christine 

  • wishiwere
    wishiwere Member Posts: 3,793
    edited June 2008

    Yes, all 1st line family members with Breast cancer increase your risks.  Your mothers, sisters and such.  2nd line are included when there are smaller families in your background.  Like no maternal aunts, or such.  There's a site that explains a lot of it:  http://www.myriadtests.com/quiz.htm?s=Completed

  • veggievet
    veggievet Member Posts: 72
    edited June 2008

    Dear Christine,

    Your paternal 1/2-sister who had ovarian cancer can mean a "red-flag" for you. The best place to start is to consult with a board-certified genetic counselor.  I would be happy to help you find someone in your area.  Feel free to e-mail me at: suefriedman@facingourrisk.org.

    Hugs and love,

    Sue

  • otter
    otter Member Posts: 6,099
    edited June 2008

    Christine,

    When geneticists see a pattern of multiple cases of BC or ovarian cancer in a family, they start thinking that the development of BC or ovarian cancer in that family is associated with a mutation in one of the BRCA genes.  The BRCA1 and BRCA2 genes are "tumor suppressor" genes--they encode factors that cells use to repair damage to their DNA.  DNA damage occurs all the time in cells.  If the damage does not get repaired or the affected cell is not killed, that cell can begin to grow uncontrollably and can become cancer.  So, a mutation in one or both of the BRCA genes can result in a greatly increased risk of developing BC or ovarian cancer, and possibly other types of cancer.  That's why a familial pattern is important.

    wishiwere has given you a link to the Myriad Genetics website.  That's the company that does genetic testing for BRCA1 and BRCA2 mutations here in North America.

    Please note that on the page wishiwere cited, "risk" refers to the risk of developing a hereditary form of cancer, not the risk of developing cancer in general.  The same is true for the information I'm giving below--"risk" refers to the risk that an individual has a BRCA mutation; it doesn't refer to the overall risk of developing BC.  There are many things that can contribute to a risk of developing BC, and a mutation in the BRCA1 or BRCA2 genes is one of them.

    There is some other information on the Myriad site that's relevant to your situation.  For instance, there is a page on the site that has a table showing the likelihood of finding a BRCA mutation in an individual, depending on whether that individual already has ovarian cancer or BC and the age at dx, plus the number of 1st- or 2nd-degree relatives with BC or ovarian cancer and the age at which it was dx'd in those relatives.  First-degree relatives are your full brothers and sisters, parents, and offspring, but not half-siblings.  Second-degree relatives are one step farther away--i.e., your aunts and uncles (your parents' siblings), nieces and nephews, grandparents, and half-siblings.

    A dx of ovarian cancer at any age in a 1st- or 2nd-degree relative adds to the risk that a person has a BRCA mutation; but the risk contributed by a dx of BC in a relative depends on the relative's age at dx.  A dx of BC before age 50 in a 1st- or 2nd-degree relative adds significantly to the likelihood that it is BRCA-related.  OTOH, a dx after age 50 in that same relative adds much less and isn't even considered in the risk calculations done by the Myriad Genetics formula.  Look at the table on this page to see some specific numbers:

    http://www.myriadtests.com/provider/brca-mutation-prevalence.htm

    Here's an on-line calculator on the Myriad Genetics site. You can plug in your own data to see the likelihood that you have inherited a BRCA mutation.  Many geneticists use this calculator or others like it to decide whether BRCA testing is warranted:

    http://www.myriadtests.com/provider/brca-risk-calculator.htm

    The BRCA risk calculation is important because some insurance companies will not pay for BRCA testing unless the likelihood of a mutation is above a certain percentage.  My onco surgeon said she thought the threshold was 10%; but my calculated risk was only 5.3% and my insurance paid for the test.

    Here is a more general calculator that estimates an individual's risk of developing BC:  http://www.cancer.gov/bcrisktool/

    Note that the question about BC in first-degree relatives says nothing about their age at dx, and the calculation does not include BC in 2nd-degree relatives.  Also, the calculator does not even ask about ovarian cancer in relatives, which I think is kind of odd.

    I hope this helps in your decision-making.

    otter 

  • Beesie
    Beesie Member Posts: 12,240
    edited June 2008

    Christine, you've been given great information already so there's only a little bit that I will add.

    First, as otter said, if there is a pattern of breast cancer, ovarian cancer and/or prostate cancer running through one or the other side of your family, that increases the possibility that your family may carry one of the BRCA genetic mutations.  But if your family is affected, it doesn't mean that you are.  When someone carries the genetic mutation, there is a 50/50 chance that each of their children will inherit it.  So if your grandfather carried a BRCA mutation and passed it to your mother, there's a 50% chance that you'll have it too but also a 50% chance that you won't have it.  And if the gene is in your family and you don't carry it, then the reason for all those cases of cancer in your family is explained, but your personal risk is not increased - you would have average risk. 

    As for the significance of the age at which people got their cancer, yes, that is important.  As otter explained, a diagnosis over the age of 50 is considered much less significant than a diagnosis under the age of 50.  The reason for this is that some cancers are quite common as we age.  One in 8 women will get breast cancer during their lifetime and most who do get it after the age of 50.  One in 6 men will get prostate cancer and most who do get it after the age of 50. The older you are, the higher the annual risk. So if someone in your family gets one of these cancers when they are older, it might be random (just one of the 8) which likely wouldn't increase your risk at all, or it might be due to genetics (either the BRCA mutation or possibly some other genetic or partially genetic cause), which might increase your risk.  Because there is often simply no way to know, many risk tables include family members who get breast cancer, ovarian cancer and prostate cancer, at any age, as being a risk factor.  But the fact is that it may be, or it may not be.  

    I hope I haven't confused things too much!  Undecided  As has been suggested, the best thing to do is to sit down and talk to a genetic counsellor.  They will assess your risk and advise you about the BRCA test, should you be interested in having the test done.

  • snowyday
    snowyday Member Posts: 1,478
    edited June 2008

    Otter and Beesie, you ladies are brilliant I find your posts so darn easy to understand thank you.  I am waiting for my BRCA 1 or 2 results and since I first noticed the lump when I was 47 and my family is Askinazi Jewish I'm pretty sure I will end up as positive for the gene. I even bet my genetist a Tim Horton's coffee.  The reason I want to know is that my family will all be tested, if they choose to do that, if I am positive. And for me an early warning system for my sons, sisters, and brother is comforting and could at the very least save their lives just by knowing and reducing their risks. So I have to wait for the test to come back, the genetist said it could take up to four months though. So I hope to know by the end of August and one way or another it will just be a relieve to me to know if my family has a high risk factor as well.     

  • Beesie
    Beesie Member Posts: 12,240
    edited June 2008

    One of the positives of the Canadian healthcare system is that if your doctor sends you for a genetic test, you get the test for free - no quibbling with the insurance company or $3000 charges.  One of the downsides of the Canadian system is that unless we need the results for surgery (in which case I believe they can be rushed), it usually takes months to get our results.  Mine took four months.  I could have paid - $200 I think it was - to get the results within 30 days but I wasn't in that much of a rush to know since I'd already had my BC surgery. 

    I'm Ashkenazi Jewish on both sides of my family, discovered the calcifications that led to my BC diagnosis when I was 48, and have a number of 1st degree and 2nd degree relatives on both sides who've had either BC or prostate cancer.  But my genetic counsellor told me that my odds of testing positive weren't that high (I can't remember - maybe 35% or so?) and as it turned out, I did test negative.  So you never know.  I agree though that getting tested can be really important for other family members - I don't have kids, but my concern was for my nieces.  I was more concerned about the possible implications to them than to me.  It was a relief to test negative!

  • otter
    otter Member Posts: 6,099
    edited June 2008

    Beesie, my BRCA testing was billed at more than $3,000 U.S.  It was that high because I was the first person in my lineage to be tested, so they had to do the entire sequence of both genes to check for mutations.  I tested negative, fortunately.  If I had tested positive for a mutation, then subsequent testing of my family members would have cost only about $350 because the lab would already know exactly what mutation to look for.

    Oh, I just re-read your post, and now I understand that the $200 would have been for a "rush order"!  It took exactly 2 weeks for my results to come back.

    otter 

  • leaf
    leaf Member Posts: 8,188
    edited June 2008

    Here's more about family history and size of family, etc for genetic risk. http://www.breastcancer.org/risk/genetic/new_research/20070621.jsp



    Other (nongenetic) things that can increase your risk of breast cancer include radiation TREATMENT (not diagnosis) as a child for Hodgkin's disease, etc. http://www.breastcancer.org/risk/environmental/ask_expert/2005_08/index.jsp



    There are also other factors - one of the biggest factors is age, but also other breast diseases such as atypical hyperplasia or LCIS. http://www.breastcancer.org/treatment/hormonal/new_research/20051216.jsp

  • cshamber
    cshamber Member Posts: 76
    edited June 2008

    Wow, thanks for so much info! I really appreciate it!

    Also I don't know which type(never knew there "were" types! LOL) but my mom just told us recently that her mother was Jewish. It was never discussed because they lived through the holocaust, and they of course kept it hidden. (My parents are from Belgium) I never even knew that had anything to do with breast cancer??? But one bit of good news......my mother just informed me that my bio dad's wife died of what she believes was breast cancer (not that-that is good news!) but she thinks that is where my 1/2 sister may have inherited it from. Not my dad.

    Christine 

  • Anonymous
    Anonymous Member Posts: 1,376
    edited June 2008

    There are many risk factors.  One thing that makes you high risk is dense breast tissue.  Check your mammogram to see if you have dense breast tissue.  Also ask your doctor.

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