Am I the only one who didn't get BRCA tested?

Watson...first of all, I love your sense of humor and that costume is certainly the scariest! Cracked me up.

As for your daughter and BRACA...there was a genetic study going on at our cancer center (and I believe is still going on) when I was diagnosed so I signed up for it and was tested. But, you first go through genetic counseling. With the counselor you can decide if you really want to go through with the blood test and what that would mean. I was at a very low risk for having the gene and did it only because of my daughter. I do NOT have the BRACA gene. Because I have no family history and no BRACA gene, my daughter is at the same risk that all other young women are at. She was 21 at the time.

However, if I had been BRACA, I would not have wanted her tested but would have been more insistant that she go for ultrasounds at that time. They told me then that she didn't need to but I'm not sure that is correct.

At any rate, it's important that your young daughter learn to do self-exams at the least, and go for ultra sounds if she feels comfortable with that. That is my take on it.

Rena may be right about getting the test just to know. But, look at your background and then make a decision, or talk to the genetic counselor if you are unsure. My ONLY risk was that I was an ashkenazi Jew. I have no other connections to breast cancer or cancer at all in my family. I've started a new tradition.

No genetic test here either.  But I think it was still fairly new concept.  None of my bc docs have suggested it.  I am watched very closely though with scans every 6 months so manybe they felt it was unnecessary.

I recently read that there is a BRACA 1a or something like that where it's something they are not sure of but they think it could be something that suppresses the tumor..actually a good thing. It's something new that somebody is working on. I think that's what I understood, at any rate...

Watson - I agree that was the perfect Halloween costume! You are a hoot!

As a premenopausal triple neg. who lost a sister early (diag. at 29, died at 34) to a hormone neg. tumor, I demanded testing early on, to confirm what I already knew deep in my bones. It would validate my determination to have a bilateral, not the lumpectomy/rads that was being recommended by both surgeon and oncologist. As far as the screening went, I did not qualify as 'high risk' for the mutation (you gotta be kidding me!) because I had only one 1st degree relative (my elder sister) with breast cancer.

Sometimes a BRCA history is not readily apparent. I am fortunate that I come from a family where we had avid geneaologists long before it became an internet hobby - like back in the 18th Century!  Through this, I was able to show that my paternal great-great-grandmother died at 33, my great-grandmother at 33 from breast cancer, her two sisters at 31 and 35. Then there were two generations of only sons born. My elder sister was the first woman available for this mutation to strike since 1889.

All this to say (yes, I do have a point) that you (the general reading public, you) may feel you don't have a history. My mother, my maternal aunts, cousins, 2nd cousins, great aunts, etc. are all still alive and well. A couple of pacemakers, some arthritis, yes; but in their late 80's and early 90's, some of them and nary a breast cancer in the bunch. However, if you are diagnosed with a premenopausal, triple-negative breast cancer - however small - I would encourage you to at least ask for genetic counseling and strongly consider genetic testing. My strong argument for is that those are the two major risk factors (in combination) for positive mutation.

Knowledge is power. In the already diagnosed, you need that knowledge to make treatment decisions. BRCA+ patients need bilat. mastectomies and likely oophorectomies, regardless of the other characteristics or stage of their tumor. BRCA+ patients need to go for the Big-Guns chemo, even with small tumors and clear nodes.

As for our children, if we get tested and come back positive, first, they have to be eighteen to be tested so that they can make the choice on their own. My 23 yr. old daughter has chosen not to be tested at this time, but to instead do the recommended preventive protocol: low dose birth control pills (for ovarian risk - I do not understand this one, but my gyn. onc. confirms it) and yearly breast ultrasounds alternating with MRIs because she has dense breasts. The guideline is to begin screening 10 years before the first onset in the BRCA line - in our case, age 29 - so screening starting at 19(!!!).

As far as health and life insurance - our children will have to answer the standard question "Is there any cancer in your family?" in the affirmative - life insurers can take this into consideration. Given the prevalence of BC, it shouldn't have a major impact on their rates. However, no state allows questions about genetically-carried traits, for health or life insurance. Think about it. Have you ever seen "Does your family carry the gene for sickle cell disease?" Title I of Federal HIPAA (not HIPPA as most people refer to it) specifically forbids this in group plans. Title II (2.1 and 2.3) protects your information - positive or negative - from being communicated to others without your informed and written consent. Of course, the best bet - for us all - is to hope our kids get good jobs with good group coverage so that they just get signed on automatically.

Ah, yes - in a perfect world!

Sorry I wrote a book - premenopausal, triple neg. bc is something I feel passionately about!

Good luck with your decisions!

Lisa

Three top cancer centers no test...was told it would not change treatment protocal's at this time.  Have two sisters and they said they should be watched but not tested. 

I'm sorry with less than 10% to 15% of bc ladies tested, that it not enough to sale me that this is the big "info needed for bc".  My surgeon who is the top in my state said she doesn't either.

I'll wait and see...I may have to for drug trials in the future because they are focusing on this now.

Living in hope.

Fla

I just got back the results from the BRCA test.  No mutation found in BRCA1 or BRCA2.  On the one hand I was pleased to find out about that but on the other I know that there is some other gene responsible for the Triple negative diagnosis that has yet to be discovered...At least I have now some options when it comes to surgery in February.

Thanks for asking this question. I have never been tested. And Lisa, I did not realize that being triple-neg and premenopausal put me at higher likelihood of having the gene. I did ask my onc about a year ago and she didn't think it was necessary. My concern is my other breast, especially since I never felt the lump and initial mammo didn't show it.

Nope, no test of ANY kind for me.  But I am 9 years post treatment and I am not sure the BRCA test was even around.

Hugs, Shirlann