BRCA1 & 2 testing

I had the BRCA testing also and was negative. My dr. had me go for counseling also,as I do have some other cancer in my family on both sides (mother and father)

I was told that about 5-10% of all breast cancers have a hereditary component; but another 15% are termed "familial" meaning that there is likley a genetic susceptibility within the family.which cannot be specifically identified. Familial breast cancer also involves the presence of environmental contributions or triggers. The counselor will talk to you about your family health history on both sides of your family to see if they think there might be some familial genetic suceptibility based on that info. (though it is hard to quanitfy) I have a 20 year old daughter so I went to counseling to find out more about what she should do ; test 10 years earlier than my onset etc. 

It also reinforces frequent testing and monitoring of your situation going forward. I did not have a bilateral,  but unilateral, and this somewhat has influenced me to think about it should anything look even slightly suspicious.  Not sure what your situation is, but that was my experience with the counseling.  The counselor wrote a letter that recapped our discussion and sent it to me and to the oncologist, so on my next appt. will discuss again with him. 

He thinks my greatest risk is reoccurance from the first side, not so much to worry the second side. Either way, I worry about both! 

I hope it is helpful to you. I am of the opinion that more information is better ....to a point,  and I think the discussion I had with the genetic counselor was a good one.    

BRCA 1 and 2 are only two of the possible millions of mutations that can cause hereditary cancer.  They are the first two that they found and for which a test was 'patented'.  So, if you come up negative, but dont' have a verifiable relative who has had cancer  who comes up positive, you can be what they call 'uninformed negative'.  In other words, you could have another unknown mutation -- or the mutation may or may not be one that will cause a higher risk for cancer.

 My family had very little history of breast cancer... .must my maternal grandmother and it turns out I inherited the mutation from my FATHER!. 

 A visit with a certified genetic counselor will help you get the info. you need for yourself and for your kids. 

Keep in mind that it's always better to be proactive on these things because surgery, chemo and rads do take their toll on the body and there is not guarantee that the cancer won't come back.

Cheers,

CarynRose

Very interesting as i just complete my gene test thru Myriad when I was diagnosed with my breast cancer. My BRCA gene test found no mutation in either  one or two, howver, in BRCA 1 sequencing it had noted something of uncertain significance found?? My onocologist suggests it be pursued.The question is,  havving cancer, does this all matter? I also plan to have ovaries removed once i am over with this cancer treatment.

Have also cancer on paternal and maternal side.

Donna, an "uncertain variant" shouldn't matter for your course of treatment. But its role in cancer (or lack of any role) may matter for your family (if it is a dangerous mutation, they should take note, as they may be at risk themselves) and especially for your "gene relatives" (others who have the same variation in the gene, and who must ponder its significance).

 Most "unknown" variant turn out to have no significance for cancer predisposition. But one can't say for certain until more research is done. So please consider taking part in free research testing, not for your own sake as much as to help others who are related to you. 

Suee,

 You should see a certified genetics counselor with experience in this. He/She will help you navigate this road.  Probably the best thing would be to have one of your relatives who have had cancer test.  Then, Myriad can test that site for far less $$. 

 You might also want to check out www.facingourrisk.org.  It's FORCE, THE site for hereditary breast/ovca.

 Best wishes,

Caryn

Thanks Caryn, I will look at the web site.  I find it all very confusing as I am English and have only lived in US for a few years so still trying to understand the US health system.. I am looking at going back to the UK for testing but it doesn't seem as if they do the same testing there.

Thanks for your help

Sue

Thanks Mutd, Good to know.  I had already gave the info of gene testing on my behalf to my paternal side of coursins to take the test. There was one cousin who did have DCIS 8-9 years ago and she is one of 5 female cousins.Hope they all pursue it as I take any precuation or info availalbe out there to be in control of my health if I can!

Thanks Robby, i just wanted to see if i should do anything for more for me. I had already passed on the info to my paternal side cousins for them to take the test on my behalf. Thanks for the input as just gets confusing at times!!!

Healthy Wishes,

Donna

Shelley, if you don't gave a detectable mutation, then your daughters can't inherit one from you. They might stull get a BRCA mutation but only from the father (mutations are relatively common in Ashkenazi Jews but if there is no breast / ova ca history in their father's family, then there would be no indication for testing them).

I assume that you have some history of cancer in your family? And you are the only person in the family who had a test? Just trying to guess why they insisted on genetic counseling with your negative results ... among the Ashkenazim, if none of the three founder mutations are found, then it is almost guaranteed that there is no genetic cause behind cancer there.

Can anyone tell me if I was suppose to get my test results on paper? As much as I wanted the answer so that I could unfreeze my life...I don't believe the negative results over the phone. Somewhere in the back of my mind I wonder if it really happened.I called my counselor 3 weeks ago just to make double sure (because it seemed like I got the results pretty quick) bu she hasn't gotten back to me. I'm scared to call back...

I am in the process of doing genetic testing.  From what I understand, there are only some things they can identify at this point that are genetic mutations and that as time goes on they may be able to identify other "markers" that may give you and your family some understanding as to what may be "passed on" to their children.  Also, I found it interesting that while this is useful information for my daughters, my son also would be at increased risk for prostrate cancer should my testing be positive.  If you have not yet me with the genetic counselor, please do so as he/she can give you the family "mapping" that includes those in your family with whom they are concerned may be "linked" to cancer.  I had some on my father's side which for years I had reported to doctors (but they always said it didn't matter because it wasn't on my mother's side--guess what, it matters!) and those with cancer on my mother's side they just didn't seem to matter since they smoked and were all diagnosed with lung cancers.  This teaches me to listen to my own self!  For years I knew something was fishy with the 2 aunts and cousin diagnosed with bc at about the same age--45.  So, even if my test comes back negative, I know something's smelling!!  Just had a diagnosis of LCIS and found and removed lump--waiting on diagnosis on that then got to make some hard decisions.  Wish I didn't have this to go through but it is what it is--hopefully it is a blessing in disguise. 

Our medical communications firm is recruiting patients who have used the BRACAnalysis predictive test or have considered using this test for a confidential telephone interview. We are offering participants $100 AMEX gift cards to compensate for one hour of your time.  

We are conducting interviews on Monday, March 16 and Tuesday, March 17. If interested, please email gabrielle_figman@millet.com and provide two dates/times (including time zone) when you are available and a phone number where you can be reached. We thank you for your interest and your time and hope to speak with you soon!