Would like some input on what others have done in regard to genetic testing. Has anybody, especially those diagnosed more than 10 years ago, decided NOT to have the BRCA testing done?

A little background on me: I was diagnosed in 2005 with stage 1 breast cancer, had  chemo and radiation. 

No other breast cancer in my family at that time.

At that time testing for the BRCA gene and the oncotype weren't being routinely done, especially with no other bc in the family.

Over the years I would ask my doctors about it and they were non-committal (do it if you want, but not necessary).

2014 my sister's daughter was diagnosed (at 38 years old) she had the genetic test and was negative.

I had seen a genetic counselor way back in 2008 and again a few years later, but always chickened out on having the test.

Now my daughter is almost 25 years old and she is starting to think about these things considering her first cousin was diagnosed (maybe a dr put some ideas in her head) and she would like to have the brca test.

I said that I would have it if it would make her feel better. I also saw a new breast surgeon (my original moved out of state) and he said I should have it done.

So now here I am again chickening out. I feel like time has gone by and I don't want to dredge the anxiety up again or even think about what I'll have to do if it's positive.

Any body else out there who has never had the testing done? Thoughts?


  • Tethys41
    Tethys41 Member Posts: 1,382 Member

    Hi Corey,

    You have a lot of things to consider. 

    I was tested after my diagnosis of ovarian cancer and I am BRCA1 positive.   The BRCA mutation also increases your risk of ovarian cancer.  I almost did the test about 7 years earlier because my mother had died of breast cancer.  I didn't chicken out, I just got busy. Plus, I somehow calculated in my head that I probably was not positve because, although my mother had breast cancer, my aunt never did.  I guessed wrong.  More recently, my brother informed me that he thought my grandmother had ovarian cancer.  Sigh. 

    One question to ask yourself is whether you will do anything different based on the information.  If you don't intend to take action to lower your risk if you are positive, then the informaiton is not important.  Having a daughter, however, certainly adds another variable to the equation.  But since you had a breast cancer diagnosis, she should be able to be tested and have insurance cover it.  If she wants to be tested, I would sure not discourage her from doing it.

    I am not doing a prophylactic mastectomy, but am taking measures to manage my health and behaviors to lower my risk.  For example, did you know that BRCA positive women are much more sensitive to radiation than BRCA negative women?  Therefore, mammograms may actually do more harm than good for BRCA positive women.  I also work on managing my methylation, which has been the buzz word in the holistic medical community for the last 6 years.  Managing this should help reduce the risk of genetic mutations, which are more common in BRCA positive people. 

    Just some points to ponder.  I hope you find a decision that works well for you.