BRCA, confused - who should be tested?

Yes, I'll confirm what PT6 said.  It's you who should be tested.  It's always preferable if someone who's already been diagnosed with cancer be tested first.  It's also preferable that a parent (or grandparent) be tested first because if this individual doesn't carry the gene, then it can't be passed on to the next generation.  This means that if you are tested and found to not carry the BRCA genetic mutation, then your daughter and sister won't need to be tested. 

On the other hand, if you are tested and you do carry the BRCA genetic mutation, then there is a 50% chance that each of them might - your daughter if she inherited that particular gene from you rather than from her dad, and your sister if you and she both inherited that particular gene from the same parent.  If you test positive, the test for your sister and daughter will be much simplier, quicker and less expensive - they will only have to look for the very specific mutation that you carry.   

Since you are the only one in your family to have BC, and if there is no significant history in the family of either ovarian cancer or prostate cancer, then it's quite unlikely that you would carry the gene.  My suggestion is that you ask your doctor to refer you to a genetic counsellor.  The counsellor will review your family history and tell you the likelihood that you may carry the gene and explain the implications to you and your family if you do carry the gene.  With that information, you can decide whether you want to be tested or not. 

I wanted to quickly pipe in here as I turned 41 in Nov.  No history of BC anywhere in my family and I have 3 sisters no brothers AND almost all female cousins - lots of them.

In any case due to the size of my tumor 5+ cm and my age and an elevated CA-125 (ovarian cancer) they suggested I have the test.  I was fine with it and lucky my insurance covered it.

I did in fact test positive for BRCA 2.  I will have the bi-lateral Mx Aug 21 and a few weeks later the ovaries come out.  I am stage 111A as you can see in my sig so I am trying to do my very best to minimize any future recurrence.....

I think if they recommend it and ins pays and you are prepared to potentially have the ovaries out to I would do it but I am someone who likes to know and plan and not everyone feels that way.  My mom and sisters also want to know if they are at risk...

Regards

Lesley 

sbmolee - It may seem as though you don't need to be tested if it's not "likely" that you have it and you've had the maximum possible breast surgery to reduce your risk. Even with having a lumpectomy, as I did, the genetic counselor said it's not about the breast surgery, once you've had cancer. It is partially about helping your family members learn if they have anything to worry about. But it's really very much about YOUR ovaries at this point. If you happen to be BRCA positive, you have quite a high risk of developing ovarian cancer, and there are NO reliable screening tests for ovarian cancer. It's usually detected once it's already stage IV. Knowing your BRCA status can help you figure out if you have to worry about your ovaries or not.

Dear MT,

In addition to helping your family members learn if they may have a BRCA mutation, your testing can help you know more about your risk for ovarian cancer as well.  You might visit the website for the organization Facing Our Risk of Cancer Empowered (FORCE) at: http://www.facingourrisk.org/ for more information about BRCA and genetic testing (the organization is devoted to issues of hereditary cancer, genetic counseling and genetic testing). 

 Additionally, I cannot recommend enough the benefit of seeing a board-certified expert in cancer genetics prior to undergoing genetic testing.  Just like medical oncologists know the most up-to-date information about cancer treatment, genetics experts know the most up-to-date information about genetics and hereditary disease.  You can find a genetics expert near you through the National Society of Genetic Counselors at: http://www.nsgc.org/ or through the FORCE website at:

http://www.facingourrisk.org/hereditary_cancer/assessing_risk_genetic_counseling.html#finding

I hope that this is helpful. I am a 13 year survivor, I was diagnosed at age 33 and carry a BRCA 2 mutation.  I'm also happy to talk with you at any time.  Feel free to email me at: sueanddan@att.net .

Much love,
Sue

Your sisters all would have a 50/50 chance too so even if you get checked they should also.. as for your question about your husband's family yes it needs to be factored in as well.  A genetic counselor will take both sides of the family into consideration and usually most people see a genetic counselor before they BRCA test..  The counselor will give you a report with your risk assessment and a "map" that will help you and the rest of your family understand.. Good Luck!!!