Anybody done the BRCA test?

lawmomma10

Just a little history... my mom and her sister had breast cancer before 35, their mother (my grandmother) died of ovarian cancer, and their grandmother (my great-grandmother) died of uterine cancer. Last week their youngest sister was diagnosed with ovarian cancer. That's a really sucky family history!

At my annual each year, my OB/GYN brings up the BRCA test, and I've always declined. Now that my aunt has been diagnosed with ovarian cancer, I'm starting to feel a little more anxious about my own chances of being diagnosed with cancer than I've ever felt before. I guess my main hesitation about doing the BRCA is that I don't know what I would do if it came back positive for the gene mutation. I know some women have a double mastectomy and a full hysterectomy if the test comes back positive, and some women do absolutely nothing with the information.

If you've taken the test would you mind sharing what made you finally decide to take the test, what you planned to do (or did do) if the test came back positive, etc.? Any personal thoughts on the whole thing would be much appreciated! If you feel it's too personal but are willing to send me an email that would be great too (austinlacey at g m a i l)!

ssinca

sending you an email...

KSandAE2008

I will send you an email when I get home from work this evening.

Mrs.Talala

I haven?t personally had the BRCA testing but my mom has been tested (we have a large family history of breast and ovarian cancer) and I offer testing for BRCA genes all day long (I?m a genetic counselor).? Luckily, my mom tested negative so I didn?t have to have BRCA testing.? ? I strongly believe that if you have a BRCA mutation there are steps you can take to keep your self healthy.? There is increased screening for both breast and ovarian cancer and there are risk reducing surgeries. ?Even if one wouldn?t consider a mastectomy or oophorectomy, there is screening available to diagnosis cancer sooner. ?(example women with BRCA mutations get breast MRIs in addition to mammograms). ?The quicker a cancer is diagnosed the better the outcome. ?What I tell women in your shoes is that they should consider testing if they would at least commit to better screening. ?If you want to learn more about BRCA mutations take a look at the FORCE website www.facingourrisk.org. ? Another thing I would say is I would STRONGLY recommend that one of your relatives with cancer be the first person tested not you.? If one of your relatives has testing and a mutation is found then you can be tested for that specific mutation. ?This makes testing much cheaper and faster.? If one of your relatives with cancer has testing and the testing is negative you don?t need to be tested. ?If you have testing before one of your relatives with cancer has testing and your testing is negative then you won?t really know anything. ?One of you relatives could still have a mutation or maybe they have a mutation in a different gene (there are other genes besides BRCA 1 and 2 that cause cancer). ?Another, thing is there is less of a risk for insurance discrimination in a person who has already had cancer. ??If it was me (and I have already personally done this) I would beg one of your family members with cancer to be the first person tested.? Then consider testing after a mutation is found.? ? I hope all this makes sense. ?I?m at work and typing fast! ?You are welcome to email me if you have questions gayle dot simpson at gmail dot com. ? ?

Mrs.Froggianna

I have not had the test yet, but I will be getting it in the next month.  My maternal grandmother died from ovarian cancer when she was 47 and my maternal aunt had pre-breast cancer calcifications removed when she was 35.  My mom had a complete hysterectomy around 35 yo because of recurring ovarian cysts and other issues.  

My doctor said if I do have the gene, it doesn't mean I'll get either cancer but she will monitor me more closely.  After I'm finished having children she said we could discuss hysterectomy options. There are also other regular tests that could be done in addition to mamos that can help keep an eye out for breast cancers.  But all that's a big if. 

 I firmly believe that knowledge is power and if I have the gene I must know.  I need  to know.  Ovarian cancer can often be a silent killer, as I'm sure you are aware, with symptoms not really pointing to anything until it's too late.  I know that I can live my life without constant worry if the test comes back positive for the gene.  And that's an important thing to consider.  If you can't get past the test results then taking the test may not be the best decision.  Good luck in the decision making process.  Feel free to email me if you want to talk about this more.  froggianna at hot mail dot com.

Keribells

Mrs.Talala:

I haven?t personally had the BRCA testing but my mom has been tested (we have a large family history of breast and ovarian cancer) and I offer testing for BRCA genes all day long (I?m a genetic counselor).  Luckily, my mom tested negative so I didn?t have to have BRCA testing.    I strongly believe that if you have a BRCA mutation there are steps you can take to keep your self healthy.  There is increased screening for both breast and ovarian cancer and there are risk reducing surgeries.  Even if one wouldn?t consider a mastectomy or oophorectomy, there is screening available to diagnosis cancer sooner.  (example women with BRCA mutations get breast MRIs in addition to mammograms).  The quicker a cancer is diagnosed the better the outcome.  What I tell women in your shoes is that they should consider testing if they would at least commit to better screening.  If you want to learn more about BRCA mutations take a look at the FORCE website www.facingourrisk.org.   Another thing I would say is I would STRONGLY recommend that one of your relatives with cancer be the first person tested not you.  If one of your relatives has testing and a mutation is found then you can be tested for that specific mutation.  This makes testing much cheaper and faster.  If one of your relatives with cancer has testing and the testing is negative you don?t need to be tested.  If you have testing before one of your relatives with cancer has testing and your testing is negative then you won?t really know anything.  One of you relatives could still have a mutation or maybe they have a mutation in a different gene (there are other genes besides BRCA 1 and 2 that cause cancer).  Another, thing is there is less of a risk for insurance discrimination in a person who has already had cancer.   If it was me (and I have already personally done this) I would beg one of your family members with cancer to be the first person tested.  Then consider testing after a mutation is found.    I hope all this makes sense.  I?m at work and typing fast!  You are welcome to email me if you have questions gayle dot simpson at gmail dot com.

Completely agree here...I used to schedule the BRCA and HNPCC (colon CA testing) at my job. I don't know that I would make any major decisions as far as surgeries and what not but if the results were positive it would sorta put me a step ahead to keep strong on the prevention route. If our patients test + then they usually follow up with one of our oncologists yearly or every 6 months or so.

lawmomma10

Thank y'all so much for your thoughtful responses. There are so many things to think about, and it's becoming a bit overwhelming to be honest. I called my mom this afternoon to talk to her about taking the test herself, and she said that she most likely would. Also, my aunt will have the test done while she's in the hospital next week having her tumor removed, so that should provide us with some helpful information, hopefully!

 Again, I appreciate your support, and don't be surprised if I have more and more questions over the next several months!

longhorn14

My grandma had breast cancer twice (the first time when she was in her 30s). She passed last year after suffering from bile duct cancer. They had her tested and discovered she was positive for the BRAC 2 gene. It was suggested that her 3 my mom, aunt, and uncle test. My aunt tested positive, my mom tested negative and my uncle hasn't tested yet. Since my mom tested negative, she was told none of her kids would have the gene and thus wouldn't need to be tested.

My mom decided to do it because she wanted to be able to take preventative measures before she was ever diagnosed with cancer, especially since her mom (my grandma) and her sister tested positive.

Mrs.Talala

lawmomma10:

Thank y'all so much for your thoughtful responses. There are so many things to think about, and it's becoming a bit overwhelming to be honest. I called my mom this afternoon to talk to her about taking the test herself, and she said that she most likely would. Also, my aunt will have the test done while she's in the hospital next week having her tumor removed, so that should provide us with some helpful information, hopefully!

 Again, I appreciate your support, and don't be surprised if I have more and more questions over the next several months!

That's great that your aunt is being tested. I'm happy to try to answer any other questions you have down the line.